5 Small Children

Changes from the Ground Up

2012-01-09T10:47:00.000-08:00

Well, we are at it again. After months of tests and enough blood drawn to suck poor Josh dry, we have no answers. Every test comes up negative or normal. Josh is an egnigma wrapped in a riddle. That is hard because it makes further treatment for some of his problems a shot in the dark. We went to a ortho surgeon to see about fixing his feet and getting him on the ground. It did not go well to say the least. First he told us he would not lengthen but actually need to sever the tendons to make a difference. Then as we got more into what it would actually take to correct his feet and found that they would also have to sever the tendons in all of his toes to make them spread out flat again instead of curling inward. He talked about putting a halo brace on both feet and Josh being in a wheelchair during recovery. This turned out to be the good news. Because of the test that showed a problem with the nerves instead of the muscles there is a good chance that Joshua would go back up on his toes in a couple of years anyway. Also, there is a possibility that the surgery could make Joshua worse instead of better. The long and short of it is that this doctor (who is very nice and highly recommended) will not do it. He has recommended that we see someone else. I do not blame him, there is a big risk to him to try this and he doesn't want to hurt Joshua but it really frightens me that this man who has lots of experience won't do it. I am sure you are thinking just leave him alone but as he gains weight and some height (thanks growth hormones) it is getting more painful for him to walk on his toes all the time. If he stubbs a toe he can not walk without pain for a couple of days. Also, it is starting to effect his participation in scouting activities too. They have just informed us that he can't go on any scout activity without Gordon with him because he is so far behind on the walks that they can't keep him with the group. That is a scouting safety thing, I know they are looking out for his safety. He is tripping and stumbling more too. We are going to go to the doctor that this one recommended but I am now very concerned. I see Gordon and I having to make a no win choice for him.
The other big concern for him is that he has still not fully started puberty yet and his bone age says he is running out of time. We see the endrocronologist in April and if something doesn't change they may have to start him on synthetic testosterone to try and get something going. Also not a good thing with lots of risks.
I do not post much now because I am trying to keep up with the kids and making life as normal as possible but I still worry just as much as always and we still need lots of prayers. I don't have the right to ask for anything because we have been blessed with so much but I just wish something could be easy for him. I want him to have something in his life that is normal and happen like it is supposed to. Please don't think we are totally disheartened, he is happy and we are enjoying our blessings. We still have no evidence of further tumor and that is everything! He is so proud (as are we) that he now has the priesthood at church and really works hard to be worthy of that. We still go day by day and do the best we can. I just think that it is important for our family to know what his struggles are so we can all still pray for answers. We love you tons!

Updates

2011-07-05T15:50:00.000-07:00

Lots of people ask me what is new and how Josh is doing. I thought a post to keep you up to date would be a good thing. Except I don't quite know what to say. Josh is not doing well. But he is not doing badly either. We have had this summers MRI and it is good but he is getting harder to understand and now the doctors say his tongue is not working right. About 10 days ago he started saying that his tongue feels "twisted" and it makes him afraid to talk sometimes. That means he is declining but we still do not know why. They keep asking him if he has trouble swallowing and told us that if he chokes on liquid it will be very serious. Some days he is easier to understand but for the most part he slurrs alot. When you get the hang of it you can understand him but he is withdrawing into himself so much lately. He seems sad alot and thinks that he is the problem when people don't understand him. Especially when kids ignore him. I am heartbroken to see him so quiet around people. I see some depression and he seems tired more lately too. He is at scout camp this week with Gordon and luckily the boys there mostly know him and he is doing ok. Gordon took him for a drive this afternoon to nap in the airconditioning of the car and Gordon told me he is having fun so I am very grateful. I think the hardest thing about this latest problem is that we have nothing to fight. With the tumor we knew who the enemy was and what to do to help him. Now we don't know anything, there is nothing we can do. We just wait and watch him struggle. It is hard to watch him slip away and not even fight. Anyway, we ARE watching and taking him to all the doctors hoping someone can help. We will keep you posted as we find anything.

Things are getting Complicated

2010-12-17T19:32:00.000-08:00

Ok, it is MRI time again. The results are in and it looks good. No new tumor and the spot from last time on his spine really was artifact, it did not appear at all this time. I should be thrilled but we got those results from a Neurologist who was opening new doors. Over the summer Josh has begun to have speech problems. It was suggested that this may have been from a mild stroke so they set up the appointment with Dr. Slopis (yes he is worth waiting 5 months for) Then the oncologist said it was just chemo decline so we kept the appointment to be sure but I thought he would spend 10 minutes with us and then agree with the oncologist so I was not worried. Well this appointment went in a whole new direction.
Joshua has the tip toe walking, now we see speech loss. They feel it is a muscle problem. However the legs are spastic (tight) and the facial muscles are flasid (loose). After this appointment we discovered that there is also a bladder issue that was not noticed that is also a muscle problem. Dr. Slopis thinks this all ties together in some sort of a genetic syndrome but he is not sure what. They are going to get a team together to make a plan on how to diagnose this because the cancer will confuse the problem. Let me stress this is not life threatening but is serious. He feels if we don't know what we are dealing with Josh could have problems later on. An example would be the bladder, if he doesn't empty it right he could have complications later that could be anything from infection to loss of a kidney. Basicly we need to find out what he has and then treat all these problems. So now on top of cancer poor Josh has some genetic problem. Also we thought the tip toe walking was not a big problem but Dr. Slopis says it is. It could cripple him as an adult so we have to know exactly what is causing it so we can fix it. It means that 2011 will have lots of doctors visits and invasive testing and possibly surgery on his legs at least.
I have been making lots of jokes today about this because we can't change it and I do not want to worry Joshua but I can't help thinking that this is not fair. Poor Josh has endured so much and now we are thinking that there is something new. A complication to cancer would have been bad enough but this is a whole new thing he has to deal with and there is nothing I can do to take it from him. He is a good boy and I wish so much he could just have a normal life, play ball like other boys (and like he wants to). Instead we spend so much time with doctors and there is so much he doesn't get to do. There is no point crying over spilt milk but I really was hoping for a quiet year and that is not going to happen. If I could ask you all for a Christmas present I would ask you to pray that they find answers fast and that whatever this is it will not keep Josh from his dreams more than he already is. I would also like to say that even though I am worried and so sad I am not forgetting my blessings. There are many and todays is the good doctor that is on the ball and looking at the big picture not a single detail. If we resolve this is will help Josh's future and that makes it worth it.

Hunting for Game

2010-08-31T16:14:00.001-07:00

OK, this is the 100th post! I know I do not post often enough but I could not pass up sharing this. We have been fighting mice in our house. (ok ick ick ick) and we found a dead on on the floor by the computer desk. We have paid to have the house sealed and then Sunday night I saw another one. He got away and I called the bug man (a friend) on Monday. He came and inspected the sealing job (he is the boss and some else actually did it) and found 1 spot they might still be getting in. He put out glue traps with peanut butter on them and told me he would come today with the sealant to fix the outside. Well this morning the house smelled and I couldn't find it so I told the kids to start school and then Ted freaked out and screamed that he saw a mouse. Well he saw a mouse alright! It was dead, stuck to the outlet. Apparently when the house was painted last year the guys forgot to put the outlet cover back on and the mice have been getting in there. The dead one from before and this little guy got electrocuted! Now we can seal things up and they will be gone forever! It was just too funny. - Oh and by the way, on a side note, the glue traps did catch something, my friend's 2 year old tried to eat the peanut butter and got stuck! I think his mom was very gracious not to freak out and we cleaned him up. I am going to sleep much better knowing this is fixed and I do feel a little sad for the poor mouse, I have heard of putting your finger in a light socket but this is riduculous!

The Deer Hunter

2010-01-28T20:47:00.000-08:00

I bet you didn't think that the deer was the hunter!! That deer saw the apple and figured it was his. He then moved in, wrestled Ted, and then - to the victor goes the spoils! We went on a field trip to a wildlife preserve where there are lots of wild animals wandering around. But I am shocked at how tame that deer was. We went in a jeep around the preserve and hand fed camels and zebras and wildebeests and all kinds of animals. We also saw crocs and a rhino and emus. The scariest thing we fed was a couple of ostriches. They just tried to grab the food bucket from you and I was so afraid they would peck us if we didn't feed them. All in all it was fun and the kids had a blast. We are slowly getting back to normal after the holidays and everybody is great! Josh's MRI showed no change! yahh Ted fell and hurt is ankle but it was ok by the time he got baptized. That was such a blessing. I think he really felt special that day and I am so glad. Gordon's mom and dad and sister and her husband and their 2 kids all flew in and so it was a fun weekend. Dorothy just got glasses this week so I will try to get pictures of her to post soon. The other news of Joshua, his thyroid is dying and they have started him on synthroid now. It is not a surprise, we knew that this was coming and just got him on his meds and he is doing great. Luckily there are no side effects to this one so it is a non event. We are still planning to start growth hormone in April. They checked for me and in the last year Josh only grew 1 centimeter so I guess it is time. Anyway, we love you and hope you like the pictures!

Off To A Running Start!

2010-01-02T22:09:00.000-08:00

I am not kidding when I say running. I am running the other way from the end of last year. I do not have space for the long version so here is the short one.....
We went to Arizona for Christmas. On the way we wrecked the car, we are waiting to hear if it is totalled. A semi dropped his drive train and we ran it over.....Nobody was hurt and the one police man in New Mexico who is related to us just happened to be the one who stopped. ( we didn't know him till we mentioned a common relative) Anyway, once we got to Arizona everybody took their turn being sick and I was sick on Christmas eve and day. We limped home in a rent a van and collapsed. We brought 3 beagle puppies home with us and that was interesting. Since we have gotten home they have been keeping us hopping. Feeding 6 dogs at once and 3 of them pups that don't know not to steal the adults food is to say the least trying. It is actually fun and they are cute as a button. We named them Molly Jo and Mamie Jo and Merry Jo. Anyway, we spent the end of this year trying to survive and now in the first week of the new year I am still sick and the house is a mess and we are doing ok!
Now, on to the important stuff.... Joshua is doing well. We have an MRI this week and I am not even worried. If anything is out of the ordinary I will post but if you don't hear from me consider it good news. He is keeping up with school work and we are blessed that he is very happy. The other children are doing great and while I am very busy I am doing well too. Gordon got a small raise at the end of 2009 and we are greatful for it and him. I am feeling really good about how the house is looking these days and Ted is getting baptized this month. Basicly I am trying to let you know we are doing well now. Busy, happy, and healthy. You can't beat that and we are grateful for every day we have.
We hope that this letter finds you the same and that you will all have a blessed new year. If you didn't get my christmas card and letter please put your address in the comments section and I will send one out. Happy New Year and God Bless!

Today, Tomorrow, zzzzzzzzzzzzzz

2009-10-24T05:28:00.000-07:00

Ok, Ok, I know it has been a long time. Things just seem to happen quickly and I can't keep up. Today I am on very little sleep (about 4 hours) and that is getting to be normal for me. Please don't misunderstand, things are great, it is just that my life has changed so much and I can't keep up. As I write this my beagle, Maryland, is running back and forth on the patio and whimpering. She has 6 puppies and they are inside with me. She got mastitis (is that spelled even a litttle right?) and now can't nurse the litter. Of course that means I have to. Puppy formula smells even worse that kid formula! The good news is that it is only for about a week till they can wean but still it is a lot of work. Homeschooling is going well but takes a lot of time and organization. I am very busy these days. I am still working with Ted to get him diagnosed and feeling better. He coughs every night and most days says his stomach hurts at some point in the day. He has had all the tests and they are not getting at answers but at least now we do know for sure that he has acid reflux. They are treating that but it doesn't stop the symptoms. The next stop is a pulmonologist to see about asthma. It is alot of running to specialists but at least I am good at that. Joshua's MRI was good, no evidence of reacurrance but he has been seen by the endocrinologist and that was not so good. He needs growth hormone and may have a thyroid problem but they can't treat the latter till they fix the first and they can't start treatment on the first till he has been 2 years out of treatment. Ok, actually they are going to start treatment at 1 year out. It carries risk but the doctor says we can't wait any longer than that. It becomes a big juggling act to work on all this. For now though, they are waiting on everything till next April and that is just fine with me. It is a break and we need it. This week is crazy with Halloween coming up. We have a church party tonight and then Candlelighters ( a cancer support group) has a fall festival on Sunday afternoon. Then we are going to the YMCA,s fall festival on Friday and the actual holiday is Saturday. Now add to that that the children's museum is having special exibits this week that would be great for the kids to see and if they come in costume they get a treat and the zoo is doing boo to you and they really want to see that and you can start to get an idea of how hectic it is. Some of you may be asking if we really need to do all that but once you have a child with cancer your perspective changes. I want them to have fun and they have missed so much that it is a small thing to do what they want. Also some of these things are really good for them, candelighters is a great support to our family and a chance to see other kids with cancer and be friends. The Y is our home away from home and we want to support their activities. We are on a scholarship and they have had us do some fundraising for them by telling our story and why they are important to us. We attend homeschool gym and swimming and tons of other things there so it really is important. It is one place where the children are just kids and fit in and have friends. Anyway, between homeschooling and fun stuff and doctors and puppies (we actually have 2 litters) I am swamped! I am also trying to slowly get the house in order and that is fun too. Believe it or not, I have worked really hard to make life pretty normal for the kids. That is the reason I don't sleep, I do lots after they go to bed. They do school and have fun and that is what normal kids do so all this is worth it for that. Please do not misunderstand, I am not whining, things are great, I just want you to have a glimpse of what our lives are so you will understand if my posts are slow. I want to tell you everything as soon as possible but time is one thing I get very little of. Well I had better get going, the pups are starting to whine and the other litter (which was delivered by c-section ((first time in 15 years of breeding))) needs to be checked on too. Have a great day and know that we love you.

A Snake, A Neighbor, and Blessings

2009-09-14T20:15:00.000-07:00

Ok, let me start off by saying this is not really about Joshua, but about all my family. I knew that this would be something everybody wanted to hear about.
For the last 2 nights Malachi (our male beagle) has been barking and we could not stop him. So today I come home in the afternoon and he is barking again. I looked out and he was just circling the grass and barking so I went out to see what was upsetting him so much. I was not prepared for what I saw, a 3 1/2 to 4 foot snake. I thought it was a black snake and I was not too worried, I have handled many snakes growing up. I was going to pick it up and throw it over the fence but I had a bad feeling and decided to get a neighbor to help. (It has been years since I handled one) My neighbor is a young policeman and he came over. But he stopped dead when he saw the snake - he looked at me and said that it was a water moccasin! Here is where the story gets funny (if you can believe that) He and his wife had come over and she said to him kill it and he said it was too big to cut with a shovel , it needed to be shot. So, his wife says do you want me to get your gun and he replies, "no, get yours". Ok, at this point I am picturing a little cap gun, (she is a very little girl) Well she comes back over with a blanket and in the yard opens the blanket and pulls out a very large shotgun! Just to be clear at this point we have put the females dogs and all the children in the house out of the way. Malachi wouldn't go in but he went to a corner and stayed down. Well, this guy was good with a gun, one shot and he blew its head off. He said they carry disease so we carefully shoveled it into a heavy plastic bag and I took it to a dumpster away from the house right away. I thanked the neighbor and let the kids and dogs out after we made sure the yard was safe. At the time it struck me as funny, a snake, a gun, the whole thing. But a few hours later it hit me. My little ones go out at dusk to play in the yard and I think that Malachi saved someones life. At the very least it is a miracle that he is alive and my two pregnant dogs are as well. I just keep thinking about how big that snake was and how it has most likely been in my yard for 2 days. We are blessed to have the dogs and that they watch over us. We are blessed to have good neighbors that will take care of us in a pinch. Mostly we are blessed that the spirit warned me not to touch that snake, it could have been very bad.
As I write this I am stuck at how quiet Malachi is being, no barking. It makes me want to cry, I am so grateful to him, and he still won't let us pet him, he is better but still very shy. I know that he came to our family to watch over us and I am so glad we named him for a prophet, he is a very big blessing.
I also want to tell you this - we are living in WILD KINGDOM! snakes, mice, frogs, skunks, the list keeps getting bigger. Hahaha, I guess I just need to get used to it. When you say your prayers, thank God for my good dog, and for the warning he sent. Thank him for good neighbors and that my family sleeps soundly tonight, I know I will.

School, Tests, and Fun

2009-08-30T21:50:00.001-07:00

Ok, I am sorry it has been so long since my last post. Between all the fun the kids have been having and my surgery (yes, I am starting to feel better) I just haven't gotten around to it. We went to MD Anderson on Friday and did Josh's hearing test. Great news, he is stable and they don't want to see him in the hearing clinic for 6 months! woohoo! Josh finished his first week of school and he is doing well. He is really liking the online school. I do see some problems but they just need to be worked out. He has not had this much work in a long time and his processing speed is so slow that he has been doing 8 hours + each day. We are going to have an ARD (a meeting to discuss his needs) and then we should be able to make adjustments to his work to cut the time down. He is having fun but I do not want him to burn out either. We are trying to shift from the summer of fun to the fall of school. He is taking Spanish this year and loves it. I will have to get some current pictures to put on, you guys will not recognize Joshua. He has so much hair now and looks so different. Tomorrow I start teaching the other children so it will really get crazy then. We are doing piano for Joshua, Teddy, and Miriam on Tuesday mornings. Also one day a week Joshua will go to MD Anderson to work with the teachers there and when I pick him up I am going to do some volunteer work while we are there. Ok, did I cover everything? Hearing test, school, and all the fun we are scheduling. I promise to try to better about posting, we have an MRI at the end of this month so there is always something going on. Thanks for your prayers, we are proof that they work every day.

Great News, And News About Gum

2009-07-22T20:40:00.000-07:00

Ok, Joshua had a wonderful birthday week. My kids stretch their birthdays into several days at least. They get to pick a resturant for dinner and then there is usually some special activity. Anyway, he decided to go to breakfast at IHop instead of dinner so we went out on his actual b-day. Then we went to the childrens museum on Friday and had friends over on Saturday so it was party week. Ted had the comment of the week on Joshua's birthday, we were all in my bedroom first thing in the morning and I said to Joshua isn't it great, you are now double didgets, you are ten! Ted piped right up and said "now you can eat gum". (I have set a rule that you must be 10 to chew gum, hoping to avoid gum being swallowed or left on the floor.) My mother used to mumble things as she used a butter knife to scrape the gum off her nice hardwood floors. My theory was that it was a long way off. I guess these kids are growing up fast and 10 is just around the corner. Well Ted was pretty disappointed when Josh wasn't too interested in the gum. hahaha Anyway, it was lots of fun and little emotional for me too. Just the other day we were not even sure he would live to be nine and now he is ten. Hooray!!!!
OK, on to the great news. We have been working to get Joshua into an online virtual academy school. It is a charter school here in Texas and a great option for him. He will do his work online through the computer and then we are supplementing it with one day a week at MD Anderson's school to have the teachers there help him with his lessons and new concepts. They of course have a wait list and I was not sure he was going to get a spot but he did. They will be sending us a computer and printer and everything. We have prayed and researched and really think this is the best educational option for him. The great thing is that it is a charter school here so we don't have to pay for anything. Also they have a department to deal with his IEP (Independent Educational Plan) and help us work out his special needs. It is a load off my mind that we can move forward with his education, he is eager to work and I am sure he will do well. Things are going well. We are still partying this month and the kids are having a blast. The library, the pool, scouts, and anything else we can stuff in this month. Sorry the posts are far apart but we are too busy to type right now. Thanks for your support.

Catching Up

2009-07-06T18:19:00.000-07:00

Sorry about the delay in posting. I kept hoping to have pictures but it does not seem that it will happen soon. So I just decided that I had better post and if pictures make their way into my hands I will post again!

First, Camp Star Trails (cancer camp) was great. The children loved it and I think they were very popular with everybody there. When we picked them up the counselors sang their praises. I think the hit of the day was Dorothy. Lots of the little ones struggle at camp but she shone. She behaved and was fun and apparently kept telling the counselors " My mom said I shouldn't do that". What amazed the counselors was that she actually did what she was supposed to! Apparently lots of kids tell the counselors what they are supposed to do but then do whatever they want. I am so grateful to MD Anderson for making this possible. The children really need to be normal kids and camp was so good for them. Also we left Rachel for 3 days with a friend and she had a blast. My friend Nikki actually made her a T-shirt so she would have one too. (the kids at camp got a T-shirt) They came home brown and very happy.

Now that we are back home the children are having a hard time getting back into their routines. (me too) We have been staying up way to late and being a little wild but I am slowly working them back into it. They are in swimming lessons every morning and it is a big production to get them out the door. (hahaha) Anyway, they are having so much fun this summer. Gordon and I are pretty tired but we are enjoying them.

We went to MD Anderson for Joshua's quarterly MRI and blood work and everything looked great! No new occurrence and his numbers are moving up nicely. The doctors even saw a little reaction in his knee reflexes. It was only slight but we will take it! Every MRI makes me nervous and I really breath much easier after it is over. Thanks for your support and prayers, we know they make a difference and help every day.

Twilight Camp

2009-06-20T18:44:00.000-07:00

BOY WAS IT HOT! We had a great time at cub scout camp. Joshua made it through the whole time. I really didn't know if he could take the heat but he did not give up and stayed every day. I do not have any pictures because I was with Josh and if I took pictures of him I would not have gotten any of Teddy who was also there but with the Wolf den. (Josh is a Weblow) I try hard not to make the other children feel like Josh is always getting special treatment. So no pictures of one without the other. There is supposed to be pictures on the scout website of them both so I will have to wait and see if there is. Anyway, we had such a great time. Teddy loved being a Wolf, this was his first scout event. The girls were in the tot lot so they were out in the heat with us. (I couldn't just leave them home alone) They had fun with their groups too.

Ok, let me just tell you how proud I am of Joshua. He did BB guns for the first time and it was very hard for him. It is a six step process before you can actually fire the gun and it was very stressful for him because he could not remember all the steps. You know, things like check the safety, load the bb, cock the gun........ anyway the first day he took so long to get through the process he only got to fire 4 times. And by the time he did he was so stressed he didn't even hit the target. Well the next time we went to the range I told the Range Master and he worked with him. It took 2 extra tries but he not only got the process down he made his badge. You have to score 35 points and he got 36! Not everybody gets the patch for junior shooter but he did. Most of the boys in his group got it but they have all been shooting several times before and only one other boy got it on his first time at camp. I don't think that the guns are a favorite of Josh's but he stuck with it and got it done. He was really into archery and now wants a bow and arrow set but I am not sure about that. Anyway, he got at least 3 badges and I am very proud of him. He is well on the way to getting his Weblow badge and Arrow of Light.

Well, I just finished packing the kids for cancer camp and tomorrow we leave so I will write more when I have news.

The Last Day and a Trip to Remember

2009-06-04T20:58:00.000-07:00

Well we really know how to party! If you want some stellar crab dip drop by Celia's and Cliff's. The house in under construction but they still can do it up right. We had a great dinner there. It was nice to relax and the kids love their cousins, Erin and Kenny were lots of fun to play with. We also got to see Susan and Richard in a parade! That was pretty neat for the kids. I truly think Dorothy will ride a motorcycle when she is older. As you can see she takes it pretty seriously. There was a group of cheerleaders in the parade and my girls thought they were princesses so we had to get a picture with them. (I think it was more special for those cheerleaders than being in the parade.) The last picture is one that means a lot to me. I love to take the children to the cemetery where my dad is buried, it makes him real to them. Being able to go on Memorial Weekend we a real treat. The cemetery was filled with flags and very peaceful. Whatever holds us back from family in this life is nothing. In the end we are bound to our ancestors and they to us. Who we are is forever linked to our family and they are the ones in the end who shape us. It reminds me that whatever Joshua's future he has and continues to touch so many lives. It makes me so glad I was able to be raised with my wonderful sisters and brother. I am truly the sum of them and my parents. I hope I can pass their great qualities to my children. Anyway, I loved this picture of my babies hands on his grave. Each generation touches another.
OK, who said I could get philosophical? I loved the whole trip but seeing my family really was the best. We didn't get to see everybody, there just wasn't time but we love them all and as the saying goes, We'll be back!!! Enjoy the pictures and at the end I have another story to tell. This one is kind of funny and a little shocking......

Here it goes. We have officially ticked off Make a Wish. I would like to start by saying we are very grateful for all they did and the chance to meet Mrs. Osborne. However, that said, you are not going to believe this! When we found out the trip was only for 2 1/2 days we asked if they could extend the flight home by several days. We said we would pay for hotel and meals and expenses. We just wanted them to change the flight day. Well they said no, but when our local Make a Wish representative told us she suggested that we call the airlines directly to do it. So when we got to New York we did just that. They said no problem and got us the flight on Sunday. One of the things that is included in the Make a Wish program is a ride to and from the airport. So we called the company that provides that and changed the time on the ride. Now mind you these changes did not cost Make a Wish anything. We were careful to be sure of that and took care of everything ourselves. Well when Make a Wish found out they flipped. We got a very vague call in New York from them saying that they didn't approve of the change. Well, we get home on Sunday at about 9am. We are exhausted, the kids are in their pajamas and we have a ton of luggage. We get off the plane and there is no car to take us home! I called the car company and the man looks at the notes and says that Make a Wish called them and said that the client doesn't get to make changes and canceled the car. They left us stranded at the airport! I felt bad for upsetting them but can you believe that? No matter what happened I thought Joshua came first and making the trip special for him was what mattered. I guess the rules are more important. Oh, well. We got one of those airport shuttles to bring us home and they were very nice. Luckily they were not too busy and we only had to wait about 40 minutes to get on the road. It just made the trip complete, we always cause a fuss, even when we try not too. I remember once I heard someone respond to a problem by saying, "oh well, it is a journal entry". That is so true, this was just a journal entry and I had too much fun on this trip to let anything be upsetting. I hope you enjoyed this journaling and the pictures of the trip. I loved sharing it. We will keep telling our adventures and the news as it happens. We have a lot coming up in June, scout camp, cancer camp, and an MRI. Watch for more posts and know that we love you all...............

On To Maryland!!

2009-06-01T19:37:00.001-07:00

Ok, we hopped on the train. It was a 2 1/2 hour adventure. The cars were mostly full and I took each of the children from the front to the back so they could see the entire train. I thought it would be smoother but it was stop and go and I had a headache by the time we got to mom's. As you can see it truly surprised my mother! She was so happy and so were we to see her. Of course no visit is complete without a swim in Aunt Nancy's pool. We even saw Frank and Paddy and their kids (sorry I didn't get pictures of them) It was alot of fun. Nancy has quite a nice spread of Iris and I loved this picture of Joshua I took. And of course all our days end the same, Dad and Rachel passed out somewhere. Tommorow I will rap up this grand adventure with the rest of the pictures of Maryland and the interesting trip home.

New York - Day Three

2009-05-30T20:59:00.000-07:00

Ok, this was so much fun! On Wednesday morning we went to the Statue of Liberty. It was a beautiful day to ride on the boat over to the island. We were given passes to go to the observation deck. There is limited spaces for that every day so we were blessed to get to go up. Josh was not amused however, because he thought we could go all the way to the crown. They are opening this up but not till July and then only 20 people a day. It was still so cool to go there. We went through the museum and the kids really loved seeing liberty's face. I had to yell at them because they wanted to pretend to pick her nose in the picture. Luckily, they stood still when I actually took it. After we got back we took the Staten Island Ferry to the island and met my cousin Steven Faust and his wife Nancy. They were so great and it was fun to meet them. They are artists and it was incredible to see such talent. If I could have fit some in my luggage I would have brought something home. Anyway, I really love meeting family and this was a real treat. It was the perfect end to a great day. A ride back on the ferry and the subway back to the hotel and the kids slept like babies!

New York - Day Two - The Afternoon

2009-05-28T20:22:00.001-07:00

Ok, you would think that all that fun at Random House would be enough but - No! We are like the energizer bunny, we just keep going. The first picture is the boys cruising in the limo. ( We really loved the limo) Then we got some cute shots in the carriages in Central Park. It was cute to be so dressed up for that ride. After that we got changed and went on a Duck tour. You get in this boat that is very tall and ride through Manhattan and then you actually get in the water and truck up and down the Hudson River. Way cool. After dinner we went to M&M world. The kids were high there. So much chocolate, so little time. It was a very full day and we had fun. One of the neatest things was that we were doing things we had never done before all day long. Well, get some rest and then we will tell you all about day 3. You would think we had done enough but there is more great stuff to come..............

New York - Day Two

2009-05-26T23:46:00.000-07:00

What an incredible woman! Mary Pope Osborne and the crew at Random House were wonderful and gracious and so good to us. It was clear that Mrs. Osborne was delighted to meet Joshua and he was overwelmed by her. They spent a lot of time pouring over the books Random house had for Joshua. As a special treat her next novel, not yet published was given to Joshua in 8 1/2 by 11 form. He is the first person to read it other than the editoral staff. She signed everything she gave him. As you can see by the pictures she had no trouble getting down and relating to the kids. The close up of Joshua is very neat. If you read the book cover behind him Random house had it printed just for him. The title says Joshua's adventure at RHCB with Mary Pope Osborne. How neat is that! They are shipping everything and I can't wait to get the box and go through it all again. When your life changes little everyday things make so much of a difference. Books matter so much to Josh, when he is tired he reads. When he needs to forget what is real in his life he gets absorbed by a story. Meeting this wonderful woman has really made him feel that he was special and I know he will read even more now. I could not ask for more for my child and I know my other little ones will follow in his footsteps. It is so neat to see them old enough to get caught up in a discussion about the books they are reading. Thank you, Thank you to Mary Pope Osborne for opening her heart to my children. She will always be in my heart for doing that. Also, Thank you to Random House, we had a wonderful breakfast and the desserts were terrific. The children loved being there and there is no greater gift than a book! PS. The last picture is Gordon with Miriam and Rachel and I added that just cause he doesn't get on the floor too much and it was so cute!

New York - Day One

2009-05-25T19:31:00.000-07:00

I am planning to post every day till I have shared all the wonderful memories we made in the last week! It was so wonderful! We were a little tired on the plane but as soon as the limo showed up at the airport everybody woke up and was ready to go. As you can see from the first picture my kids acted like they were born to ride in limosines! After we got settled in the hotel we took the subway down to Chinatown. The kids loved walking the streets and seeing the vendors. They didn't enjoy the food quite as much as I did but they found new uses for the chopsticks and had a blast anyway. I especially loved Dorothy's kissy lips. After dinner we walked back to the subway and rode back to the hotel. I had forgotten all the people who go to NewYork and make their own way. The kids loved when people on the train or in the terminal sang or played instuments. Gordon was very freaked out about all the crowds, he was so worried about losing someone. At first I thought he was over reacting but they are so small and people move so fast there that we ended up holding very tight to everybody while we were on the street. I am glad to say that the children did not seem to notice and had a blast everywhere we went. Miriam could have made us some money on the subway. Crowds listened to her and loved all her stories as we sped along. Anyway, it was so much fun. Enjoy todays pictures and tomorrow you can see Joshua with Mary Pope Osborne!

The Summer of Joshua

2009-05-16T18:46:00.000-07:00

The summer of Joshua has begun. We spent the day at a park with a splash pool and merry go round with Gordon's work to celebrate the end of tax season. It was the perfect kick off to the summer. Joshua also got his Bear award in cub scouts last week! W are so proud of his hard work to make this goal. He worked even when he was very weak so it was an extra effort. The last pictures are from his end of treatment party. It was so much fun. We want to thank everyone who contributed, either helping with the day or with the wonderful Webkinz we collected. I am so proud to say he reached his goal of 250. We actually got 252!!!! We took them to the hospital and Joshua gave a few to the kids in rooms that were not feeling well. The rest we left with the staff to give out as needed. It was so great to see the kids that were feeling bad smiling. Also, I can't tell you how nice it felt to tell those moms to hold on, there was an end and they could make it. We truly plan to enjoy every day now and do as much as we can. We are leaving this week on Josh's Make a Wish trip. We are going to New York City to meet Mary Pope Osborne, the author of the Magic Tree House book series. I will put lots of pictures on when we get home.

Party

2009-05-07T20:11:00.000-07:00

Don't forget to come to Joshua's "End Of Treatment" party if you live close enough to. It is this Saturday from 3pm to 5pm at our church. 3311 SouthFork , Pearland Tx. We are really looking forward to having a fun afternoon. I am so proud of all my children for the tough year they have survived. I am extra proud of Joshua for his project. He is collecting Webkinz to donate to the children still in treatment. He set a goal to collect 250 for the children. So far we have 90 that we have collected. I am extra proud of Miriam and Teddy. They used their birthday money to purchase Webkinz to donate, and that was without any prompting from me.

Let me explain why Josh wants to do this. During treatment there are many rough milestones. Radiation, first time for new chemo drugs, MRI's, and various tests. It is so hard for these children to do such scary things that as a parent you look for anything to get them through. Couple that with all the time they are either confined to bed or to weak to go outside and Webkinz become really great. It is a stuffed animal with a code attatched. You can register your Webkinz online and play with them in a virtual world. It is a safe site for kids and they have lots of educational games. We gave Josh a Webkinz for each milestone and it helped. He would focus on that toy and not what they were doing to him. They are not expensive and the stuffed animals are pretty darn cute. (they can go into an MRI machine!) Anyway, we are proud of him for thinking about others now.

Anyway, We are looking forward to a big blast Saturday and hope everybody close can come, it will be great to eat cake and relax and celebrate. We are calling this the summer of Josh and taking every chance to party. We got a call from Make a Wish and on the 18th we fly to New York to get Josh's wish (meeting his favorite author) In June is scout camp and cancer camp. We will figure out something for July and August and then in September we are hoping to go to Maryland to see my family. Come join us for the kick off of a great family summer if you can. Please remember that your prayers helped get us here.

Fun, Fun, and More Fun (and some news)

2009-05-03T13:28:00.000-07:00

The children had such a good time! They rode bikes and had lunch and were the hit of the day. Everybody seemed to find just the right fit for them. Ted was on that bullet 3 wheel bike and the girls looked so cute in the side cars. The best thing about the day was the money raised for brain tumor research. It warmed my heart to see people from all over come out the help our children. It is proof that so many good people live in the world. We also learned more about the kids. They all had fun, but Ted threw up afterwards. (Bike sick) and Dorothy, well , you never saw anything like the gleam in her eyes. We might have to send her to my sister Susan and her husband Rich to be raised, they are bikers and that would be a dream come true for her. Oh, and Joshua got to draw a raffel ticket and the winner got a new motorcycle! It was a great day.

As for other news, Josh had an MRI of that spot on his back and it has not enlarged so that is good news. He gets tired alot but seems to be ok right now and we are living large. I will post later in the week about his party, but just to remind you, it is this weekend and we are getting pretty excited about it. Love you tons...........

A Picture is Worth a Thousand Words!

2009-04-23T21:52:00.000-07:00

I can't think of anything else to say. We love you all....

Welcome to the Roller Coaster!

2009-04-01T20:58:00.000-07:00

Ok, I did not post last week for a reason. We had a really bad scare. When Josh had his end of treatment MRI the results were mixed. No reoccurance of brain tumor or spinal tumors. That was very good. However, they found a bone in his lower spine that looked bad. He has been having some pain in that area in the last several weeks. We were told that it could be infection or tumor but the truth was that it looked like bone cancer. We spent a pretty panicky weekend. They told us that they were going to do a biopsy this week. On Monday a panel of doctors including 2 oncologists, 1 pediatric neuro-onclogist, 1 bone cancer oncologist, a pedatric orthopedic surgeon, and neuro-surgeon (he just thought it was interesting) met and duked it out. The opinions were varied but it was finally decided to do a pet-scan first to try and pin point any cancer. If cancer was there the biopsy and possible surgery would follow. We did the pet scan today and Thank God! no cancer. They now feel the bone may contain a hemanginomia (I hope I spelled that correctly). 2 of the doctors (guess which ones) still want to do the biopsy but the rest think we can do MRI's monthly and see if it remains stable. Surgery to remove it is risky because it is basicly a tangle of blood vessels and bleeding is possible. However if it grows that may become nessesary. Today we just don't care - I just keep saying "it is not cancer, it is not cancer". That is enough.

Now, on to my apology. Normally we would have shared this right away but we have a trip to see family coming up and we wanted this trip to be care free for Josh and everyone else. If it was a reoccurance or new cancer we did not want people treating him different. He misses seeing everyone and this trip is very important to him. Everything was so unsure we just figured that we should wait till we had more information. Also, so many people have expressed that they feel he will be fine now that treatment is over. We want it to be fine now. We want you to enjoy time with Josh now. Gordon and I will always have this cloud of worry to deal with but we want Joshua to live normally. That means we ride the roller coaster and we bear the fear. Not him, and while we need your support, we do not want you to live that way either. It becomes a balancing act for us. We are so grateful that this time it had a happy ending. We are so grateful to know that if it did not you would have been there immediately. Mostly we are grateful that for the next 30 days we can relax a little and try and find our new normal. The doctor wants us to start Josh on training to build up his bones and muscles that have been so weakened by the chemo so we will add that to his schedule. But at least we can rest a little too. Thank you for all you do, calls, prayers, and the many who sacrificed time and money to be here when we needed you most in the last year. I do not mind the roller coaster, as long as we are on it - that means one more day together and that is enough. We love you all so much.

The Last Day of Chemo

2009-03-23T13:06:00.000-07:00

I can't put into words how I feel now. I thought I would add this video I have made to show the day. We played in the hospital gardens and then went into treatment. The music is by Jenny Phillips and the song is called Man of Miracles. Today is a miracle to me and I know that Jesus Christ is the glue that has held us together. I hope you enjoy this, we love you all so much. (Don't forget to scroll down and pause the music before playing this one)

Rain Gutter Regatta -Beginning and Ends

2009-03-13T12:48:00.000-07:00

As you can see from these wonderful pictures, Joshua is a star. He built a boat for his scout troops raingutter regatta and took 3rd place. (The two boats that beat him were illegal) For those of you who do not know what this is, they take raingutters and fill them with water and the scouts build boats from a kit and race them. There are rules for building and then you blow your boat down the track without touching it. I was proud of Joshua for 2 reasons. 1- He did a good job building and racing his boat, and 2 - He did not say anything to the boys with illegal boats. I am sure they did not know about the rules and probably would have felt really bad if someone had said something. The point of the race is for the boys to build something and have fun and while it should be fair for everybody it just wasn't that important to Josh to win, he was happy with third and proud of his boat. That is what I want for him, not worried about others just happy. He did cry a little when he lost his last heat but more from the excitement than anything. One of the side affects of his cancer is that he can be emotional and can't control it. That is common for children with brain tumors and a lifelong side effect.

Well today is also a milestone. I am sitting at the hospital while they hydrate Josh for his last inpatient chemo. Can you believe it? He is having pizza and reading Harry Potter while he waits for them to start this last round. Rachel is napping in his bed and the other kids are down in the play room having fun. We will be here almost as often for outpatient appointments for the next 6 months while they do testing and followups but while there will always be lots to do, this phase is over. I should be happy, and I am but, I am also nervous. It is a dangerous waiting game we play now. The good news is that this game is Gordon's and mine to play and Josh doesn't have to be part of the worry. He can start to find a place where he can fit in with his new life. He will never be able to do things other kids his age do but I am sure he will find his way and do it much better than I could. There will still be lots of challenges but he is up to it! We are really starting to plan his end of treatment party. I think it will be sometime at the end of April. By then he will have his strength back from this last cycle and enjoy it. He wants to make it a Webkinz party and ask everyone to bring a Webkinz and then donate them all to the hospital for other kids. He has a goal to collect 250 webkinz so we are going to have to really get working. Luckily you can get little webkinz at the Walgreens inexpensively so I don't mind asking people to bring them. Anyway thank you for your prayers, we continue to need them and know they matter.

Needles and Nerves

2009-02-22T19:17:00.000-08:00

Joshua is a hero! (not that you didn't already know that) I told him last Monday that after this last cycle of treatment they will schedule to remove his port. After that he will have to have regular IVs for MRIs ever couple of months. I just wanted to prepare him for the future but it is not for a while yet. Well he told me that night that when he got his blood draw this week he wanted to do it in his arm not his port. I was surprised but told him that was great. On Friday he came to the clinic with a smile on his face and fear in his heart. When they took him in the blood draw room he cried but he did not stop. He took a minute to calm himself and held out his arm. - You need to understand that the day he had his brain surgery they made him have an IV before they put him out and it blew. He was completely freaked out and 6 nurses held him down and put another one in. (they had to have a blood match before surgery in case they needed to give him blood) Since that day he panics at the thought of a needle in his arm and if more than 2 nurses are in his room he gets very frightened. For him to put his arm out voluntarily was truly an act of courage. He just doesn't stop amazing me. So many times he could be overwhelmed but he just catches his breath and goes on. I am so grateful to be his mom and so humbled too. His counts are good and he is feeling great. We have a small break and he goes into the hospital on the 13th for his last inpatient chemo.
We have been planning his big end of treatment party and I will be posting the information soon about that. Josh is very excited about this and is planning the menu. He wants grandma's purple salad (it is delicious) and is talking about punch. I have promised a fancy cake and lots of fun. Anyway, have a great week. Sorry this post took so long, homeschooling keeps me busy. All our love and prayers are for you and thanks for all your prayers for us.

I Win!!!!!!

2009-02-01T19:24:00.000-08:00

This round is over! We have finished our last round of cisplatin --- yayaya! Joshua did so well, it was really hard but when he had to take the CCNU (which must be swallowed) he struggled but finally looked at it and said "I Win" and took it. He cried but I was so proud of him. He came home late last night and got up for church this morning. He is so tired but just never gives up. We still have several rounds of Vincristine, our outpatient chemo and a B cycle to go but this was a big hurtle. It feels so good to say this is the last time when we do things with Joshua. The last A cycle, the last cisplatin, the last whatever. Also his hearing test was great, a small drop but not enough to be concerned about. We are about 10 weeks from being done with chemo, can you believe it! Joshua is a miracle, and I can't wait to begin celebrating this milestone. There will be parties and we are hoping for a summer of fun! As always we go from prayer to prayer so thank you. I hope that everyone who reads this understands that you will be celebrating along with us in ten weeks, this is your victory too.

Home again, Home again, Gigity Jog.

2009-01-26T06:10:00.000-08:00

Things are more calm now. Gordon is home and getting better, we go to the doctor handling his infection on Tuesday and the cardiologist for a stress test on Thursday. Josh had good counts so unless they drop this week (which is a real possibility) we will be going into the hospital on Friday for his next inpatient chemo. Of course calm here means that between Gordon and Joshua we have 5 doctors appointments, 4 other appointments, dogs to breed, and lots of paperwork to catch up on.
I am very grateful for the chance to focus on things and still have my partner and best friend to help. Lots of people say that our life is hard but truly we are very blessed. Someone told us that 9 out of 10 people that went through what Gordon did do not survive. We know many children with Josh's diagnosis that can't walk without a walker, or have shunts. No matter what the future holds today is great! We are living and trying to have fun! We are together! We are blessed!

Deja Vue (did I spell that right?)

2009-01-22T20:38:00.000-08:00

OK we are back were we started and Gordon is in the hospital again. His heart is fine this time but he is still in pretty serious condition. When he left the hospital on Monday they gave him a flu shot and a pneumonia shot. OK, this is one in a million, he got an infection at the site of the injection and it spread to his blood. Oh, and he has pneumonia too. Needless to say the doctor at the urgent care freaked when they got his labs back. The doctor there told us it was the highest white count he had seen. The good news is that he is doing much better now that he is on antibiotics. He is still exhausted and really out of it but if you had seen him at home it is an improvement! He will be in the hospital till at least Saturday and then they will see if he is ready to go or needs more antibiotics. I am a little worried, the site of the infection is getting larger but I know they are watching and I will make sure the doctor looks at it tomorrow.
I feel bad for him he is really hammered, also I am so tired of things going wrong, and I am trying to keep things light for the kids.

We go to the hospital Friday to check Joshua's counts and I am praying they are OK, I worry about him getting sick now. I am very tired so I had better sign off but keep praying for us, we are trying to keep it together and need all the help we can get...........

It's Gordon's Turn

2009-01-18T12:23:00.000-08:00

OK, so I know this is Joshua's blog but I am hoping to use this to get the word out. Gordon is in the hospital today. They are moving him out of ICU to a cardiac floor today so he is finally stable. Maybe I had better back up and start from the beginning.
Yesterday afternoon Gordon started feeling that his heart was not beating in rhythm. It is called atrial fibrillation. He has had this before but it has been a long time. Well he did not want to go to the hospital but I was worried so I insisted he get a blessing. Well one of the 2 men from our church who came was Brother Cameron. Lucky (OK just one of many blessings we had last night) for us he is a doctor. So after the blessing he checks his pulse and says that he needed to go to the ER right away. With his insistence Gordon agreed to go. Once there the doctor in the ER decided to cardiovert him with paddles. They gave him a pain med and hit him. No warning, nothing. When we told brother Cameron he was shocked, he couldn't believe that they did not put him out for this. It was frightening for me and painful for Gordon. However he dropped from 150 beats to 88 per minute. So the ER felt he was OK and they were going to send us home when things went from bad to worse. About 20 minutes after the shock Gordon told me he thought he was "fading". I looked at the heart monitor and saw 23 beats, 20 beats, and flat line. I yelled for the nurse that his heart stopped and they came running. The doctor felt for a carotid pulse and said his heart has stopped and to begin CPR and bag him. They were preparing to intubate and everything but he came back in about 30 seconds and they got him stabilized. By now I am freaked out and he is very confused. He did not realize what had happened and kept telling them he was ready to go home. Needless to say I was not OK with that. Well that brings us to today, he is out of ICU and on the cardiac floor and doing extensive testing. Even the cardiologist says that what happened is very rare and they need to figure out why his heart stopped. He just finished an echo cardiogram, which is a big word for an ultrasound of his heart. I was proud to say I recognized the aorta, left ventricle, and two valves. Tomorrow he is scheduled for a stress test and a nuclear stress test. They have taken tons of blood and are checking cholesterol, hypertension, diabetes. I really like this doctor because he is thorough and cautious. He is waiting for every test before he decides what to do. We have heard everything from pacing to medicine to an automatic implanted cardiac defibrillator. One thing I like is we will have answers tomorrow so that is good, I can't take waiting at this point.
Now, on to the important stuff: BLESSINGS
1. Brother Cameron and priesthood blessings in general
2. Going to the ER and not having this happen at home (they told us he would have died)
3. Being able to call the Bishop and not be alone when I was so very frightened
4. Health insurance (became active January 1)
5. Good doctors, I can't say enough about how impressed I am with the cardiologist.
6. Another day together (I will never let him go to sleep again without telling him I love him.
7. A great ward, they have rallied and taken the children in without question
8. Sister Flores who stayed most of the night last night and did my dishes
9. Family who fasted today for us.
10. Just the knowledge that no matter what we will always be together

I will keep everyone posted but right now we are just waiting for a plan to move forward and I am very excited because he is very cranky and I see that as a good sign. Poor Gordon, his chest really hurts, just the shock would have been enough but the CPR did him in.

Chemo and Coccoa

2009-01-13T19:30:00.000-08:00

Well Monday was a long day but we are doing ok. We spent 4 hours trying to swallow a pill and Joshua worked really hard at it but it was just too much. Finally they broke it in a syrup and he got it down. He is not feeling bad now so we are counting ourselves lucky and I am very proud of how hard he worked. He wanted to do it and never stopped trying. We let him pick 2 webkinz for the hard work he did and so that he would not see it as a failure but a success.

I also wanted to tell you a story that happened last Monday. We went to the Mcdonalds for family night and had a blast. They had free Hot Chocolate and face painting. The kids loved it and the face painter took a shine to Joshua. He talked her into painting his head and I thought you would love to see the pictures. As hard as things are Joshua never lets it get him down. I am so grateful to the face painter for caring about Josh. It is wonderful to see him laugh and be silly and just being a kid. Oh, if anybody is interested in how these things relate, Josh used coccoa to try and swallow the pills. He really likes it!

The Bomb and the Fallout

2009-01-11T18:02:00.000-08:00

Well, Joshua has been doing so well this cycle but I am not surprised by this news. When he was in the hospital last time there is one chemo that he takes by mouth but he kept throwing it up. The nurse finally came in and said the doctor told her that it was a maintance dose and they were just going to skip it. Well I mentioned it to the oncologist we saw in the clinic the next week and he said that it was important and that he should have had it but it was too late and we would just worry about taking next cycle. Well when we went to the clinic this Friday they dropped a bomb. Doctor Wolff, the head of the department found out about all this and freaked out. He said that that chemo was very important and we have to get it down. Even though we are 3 weeks out he still wants Joshua to take it. This is troubling on several levels. One he still has the problem of taking it, he gets very upset about taking pills now. Also it will give him nausea for a day or two (bummer) but the biggest thing is that this is the drug that kills his counts and makes him so weak and tired. AND the count drop will happen 2-3 weeks out so this will affect his next cycle, it may be delayed if his counts do not rebound fast enough. We are going to the clinic in the morning to take this chemo. I am giving him anti nausea to try and help and I am insisting that the counselor that has begun working with him be present to help. I will say that I think that this has all been a blessing for him from Heavenly Father. Everybody at our house has had a cold and cough and he had it too. If he had gotten that chemo he could have gotten very sick and been in the hospital so I think that this delay was heaven sent to protect him. I just hope tomorrow goes well and he doesn't get too weak from this. We will have to see. Meantime we appreciate your prayers and hope that all is well with you. I will post later in the week. To be honest, the longer it takes for me to get another post in the harder of a time he is having, I really have to focus on him when he is weak.

Wii Fit and other Health News

2009-01-04T18:22:00.000-08:00

Ok we are officially Wii fit junkies! Joshua is a great yoga fan and he is pretty good at it too. We all love the balance games and Josh and his Dad run together. We are working out as a family about 5 days a week between 20 and 30 minutes each. The fun thing is that everybody watches and cheers for each other. Dorothy loves to tell me "Good try mom" (that is because my scores are behind Josh and sometimes Dad's) It sounds corny but it is a family activity and everybody has fun. I have to say I never wanted a video game system but the Wii is one of the best things to happen to us and the greatest gift. When Joshua is tired and down he can really get a pick me up by playing games with Teddy and he moves alot more. I am all for the belief that exercise releases endorfins (spellling) and that can only help.
On to other health news, Josh has a cold but his counts have been up enough that he is ok. This week is when he should drop but I am waiting to see because they lowered his cisplanin level and maybe it will be better. We have been a little off schedule but we go this Friday for the last outpatient chemo of this cycle. The next cycle starts at the end of January. It is truly a miracle that he has gotten this far in treatment without a major health scare. We are blessed and I know that the many prayers on his and our behalf have made the difference. I am looking at this new year with excitement and hope that we will get to a better place and our family can begin to move forward. I hope that everybody can have a new year filled with hope and happiness.

Merry Christmas

2008-12-26T21:46:00.000-08:00

Christmas was wonderful, the children had the best time. The first picture is before they went crazy. Next you see Dorothy with the afgan my mom made for her, each of the girls got one. Next you see Joshua with his Wii fit and then Rachel in the middle of it all, and we finish with the end of the day, Rachel fell asleep at the table, how cute is that! I hope your day was as wonderful.

Home For Christmas

2008-12-22T09:11:00.000-08:00

Well we are home again. Joshua had a very tough time this round but it is over and we are resting while we watch Auther on the couch. Poor Joshua, it hit him very fast this time. He was sick right away. It was a very bad night but morning finally came. Luckily because they lowered his dose this time he recovered just as fast. He is still weak but was able to come home in time to make it to church. He only stayed for sacrament meeting but was glad to be there. It is so hard to see him suffer and humbling to then be so faithful. I am grateful for all the people who have helped to make this a great christmas for Josh and the kids. I wish I could give him what he really wants for christmas....to be cured. My heart breaks that I can't but I know that we will have fun on christmas morning. There are lots of presents under the tree and if we can get some guys from the elders quorum to come over there will be a tramoline in the yard.
For all the people who are complaining about not being able to enlarge the new kids picture, Gordon and I sent out christmas cards and included copies of the picture in them. They will be a little late but hopefully you will forgive us when you see the picture. We did not have enough copies of the picture to send them to everybody but the card itself is a cute picture of the family so hopefully everybody will be happy. Merry Christmas to you and may the choicest blessings come to your families. We appreciate all that everyone does for us and could not live without the prayers.

Just A Quick Note and Farm Update

2008-12-18T19:00:00.000-08:00

I just wanted to let everyone know that Joshua is going into the hospital for his last inpatient chemo this year. I wish it was his last chemo ever but it makes me feel good to say the last of this year. We had his hearing test today and it was good news. No further hearing loss but that was expected because he did not have the cicplatin this last round. We will be having that this time but they are lowering the dose because the hearing loss he has already sustained is significant. So while the test is good news we still get to hold our breath for the next test in 6 weeks. I am hoping that the lowered dose will mean that he does not get so sick this time. Again, we have to wait and see.
On another note he is feeling ok right now but still can't seem to get a break. He was bitten by a donkey he was petting yesterday. He was wearing dark green thermals and a light green t-shirt and it was a very nice and friendly donkey I just think his arm looked like food and the donkey did a taste test. It hurt and he was frightened but mostly he was embarrassed afterward. The donkey left some bruising but did not break the skin so he is fine. Please do not ask him about it. I only mention it to point out that this sweet child can not seem to get a break in life. Please include him in your prayers and we are hoping he will have a merry Christmas. In the meantime we are keeping him away from livestock and other hazardous animals. Yes, that means he will not be any live nativities this year, we do not trust sheep. hahaha
May you all have a great weekend and I will post when we are home from the hospital and doing well. As always thanks for everything.

Car Metaphors

2008-12-08T20:32:00.000-08:00

Sunday came and Josh woke up with a terrible croupy cough. He was weazing and miserable so off we went to the emergency room. Of course he is just like a tempermental car and he refused to make the noise for the doctor. They thought I was overprotective of him. I did request his bloodwork be done as I knew we would need it today and I thought it would speed things up today. They drew the blood and told me to go home, they would call if there was anything wrong. Well last night at 10:15 they called and said that his hemoglobin was low. It should be at least 10 but anything below 8 is serious. Joshua was at 7.3. They told me that we should come in first thing in the morning and they would be ready to give blood then. Unfortunately, they did not type and cross his blood type and we got there at 9:30 and they were not ready. We had an appointment for a hearing test but we missed it because they would not let us leave the unit during the infusion of blood. We were there from 9:30 to 6pm.
The good news is that even though his hemoglobin was so low, his other counts are moving up. So now that we have topped off his tank, so to speak, we are hoping he will feel a little better. He has been so tired and just not feeling well. He is still tired tonight but that may just be the long day we had today. We got him to bed and I hope he wakes up doing well tomorrow. Unfortunately, this means that we have to come back to the hospital for counts on Friday and because the hearing test was missed we are waiting to hear (no pun intended) when that will be. This is supposed to be our week off of treatment for him to relax and feel good so it is a bummer.
All in all things are ok, the doctors think he is doing great. I guess my definition of great is different than theirs. I want him to smile more and worry less. I want him to have energy and confidence. One thing I want for him he has, his testimony is stronger all the time. He seems so grounded in his faith. He doesn't worry about missing anything as much as he worries about missing church. He is always waiting for Sunday and if he can't go he is so down. I am so lucky to have a special spirit in Josh. He truly has a greater understanding and I just pray I can learn from him. Meanwhile he is ok and we will take tomorrow as it comes. Thanks for your prayers and keep them coming we need them. Lets park our cars and remember to slow down and walk through life, we don't want to miss it.

Test Results

2008-12-04T15:37:00.000-08:00

Well the test results are in! Josh's 3 month MRI is good! He is stable and shows no new tumor. I can not tell you how much those words mean to me. We worry every time he takes these tests. We are concerned right now because he has no white blood cells. Monday his white blood cell count was .2. That is not even high enough to count his ANC (ability to fight infection) We went back today and he is at .6. Still not registering but higher. We will go back on Monday and see if it is still moving up. They expect that it will but we have to be very careful till then. He missed scouts and will miss primary on Sunday. We will let him go to sacrament with a mask.

It is so hard all these ups and downs. Right now Josh is very down, and it is getting harder and harder for him to come back up. He knows that his MRI was good but he just feels bad and tired and a little nausea so it makes him down. He is having a hard time because each cycle is getting harder and he does not see the end. Some people think we are close to the end and he should be getting excited but this when it gets rough. His body is just beat up and he is discouraged. We have an apointment with a phycologist (did I spell that wrong?) on Monday so we will work on stategies to get him through the next couple of months.

We are grateful for all your support. We hope to have more good news everyday and most of it comes from you. Please do not think we are not grateful for the good news we have. It is another 3 months we have been given and I will take all I can get. It is just hard to be happy when he is not. I keep thinking of the miracles of the Savior when he was on the earth. We are given little miracles each day and I have to look for them and makes sure he sees them too. Keep praying, we need it and I know our blessings are because of it. Thank you.

Thanksgiving with Grandma and Grandpa

2008-12-01T12:17:00.000-08:00

We had so much fun with Grandma and Grandpa! We made a gingerbread house and went on bear hunts every night! Hope this brings you a smile today. I will post again later in the week with Joshua's MRI results. Love and prayers to all.

PS. Go to the bottom and pause the music before playing the video so you can hear it!

Hospital, Hard Times, Happy Thanksgiving

2008-11-24T06:20:00.000-08:00

Well another hospitalization over. This was the B cycle and it was easy last time. He went in on Friday and they infuse the chemo over 2 days. Saturday he did great but Sunday he woke up sick. He started throwing up even before he tried to eat. They gave him meds and he slept. He continued to be sick every time he woke up and 2 hours later the doctor came in for rounds. He had about 6 fellows with him and they stood around the bed. The doctor said everything looked good and Josh could go home in a couple of hours. Gordon tried to explain about him being sick and the doctor didn't seem concerned. Then a fellow bumped the bed and woke up Josh. He proceeded to start up again. The problem is it is pretty violent and he can't stop till he falls asleep again. Needless to say the doctor was shocked and very upset. He said of course he could not go home till they got it under control and told the fellows they would have to come up with an immediate plan for new meds and a way to stop it. Well they put another anti nausea on board while he slept. He was more stable when he woke up but now had diarrea too. The men from our church came and gave Josh and Gordon the sacrament and a blessing and Joshua turned a corner. He was able to come home last night late and is sleeping in this morning. If he can wake up and take his anti nausea and keep down some breakfast we will be doing great.

Every cycle is getting harder on Joshua. Every time I think this will be the last time I let them do this to him. Then I think I have to keep going and do what they tell us to do. It is very hard, to see him suffer, and know that we cause it with these terrible drugs. When we picked up Joshua last night we had the children in the car in their jammies and Rachel said "did the doctors give you the bad medicine again Josh?" Even she knows on some level what is happening. But we have to have faith that this is the right thing to do and it will make a difference for Joshua. For now I am just happy to have him home. I look in on him sleeping in his bed and want him to stay there forever. I guess that I am just silly.....

Well, I have to go. Our house is its usual mess and Gordon's Mom and Dad are coming tomorrow for Thanksgiving. We have a lot of shopping to do and even more cleaning. This year we have lots to be thankful for. First, we are still together as a family. Second, Gordon's Mom and Dad will be here. And last but definately NOT least -----Gordon has got a new job! He starts the 1st of December and it is a great position. I am very proud of him, he has worked hard for this opportunity and he is ready for it. I hope you have a great Thanksgiving, and I pray you have a long list of things to be thankful for. We are thankful for you and the blessing your prayers bring. Happy Thanksgiving.

2008-11-19T09:44:00.000-08:00

Ok, this is not so much about Joshua and mostly about Gordon and I. If you are bored you may log out and I will post as soon as Josh gets out of the hospital this weekend. (He is scheduled for chemo Friday).

Are those the biggest shrimp you have ever seen? They are gulf shrimp and we each ate one before the picture but the were great. Second, isn't Gordon cute bowling? Let me explain what all this is about.

There is a new organization called Your Day Away. One day a year they work to give parents of critically ill children a day out. They get spas and resturants and hotels to donate services so parents can get a day out or overnight if they can do it. We of course could not do that but they arranged for us to go to the movies and bowling and dinner. The movie did not happen because the theater lost power and was closed. However we had a blast bowling at the Pearland Bowling alley. Great lanes and nice people. Afterwards we drove around and then went out for the fanciest dinner I have ever had. Gordon had a dry aged rib eye 16oz steak. It cost $46! That did not even include the baked potato! WOW, the food was great and the resturant was wonderful to us. Killens is a local place and very nice but you would never know there is a resession there - every table full and the average bill for dinner for 2 was $150. It really was great to have from 1 in the afternoon till about 9:30 at night to ourselves. Special thanks goes to Sarah for babysitting for the long haul. Since we did not get to the movies we did the grocery shopping and even that was fun. It has been so long since Gordon and I had a day together and could just laugh. He even let me stop in Pier One Imports to drool over this season hand blown eastern european christmas ornaments. Anyway, it was nice. Even when everything is calm around here we have so much on our plates that we don't seem to relax much anymore so this was a dream. One funny note - Rachel freaked out when we got home. Apparently we have never left her for that long with both of us gone and she did ok till bed time. When we got home she cried for at least 20 minutes in our arms and would not let us go. She was doing that hiccup cry and it was very sweet and a little silly too. She is tough but very tender too.

Well, Josh is doing ok and we are just keeping him healthy till he goes in the hospital on Friday. Daddy is going to go and stay this time so that will be fun for Joshua. This is a B cycle so we really do not know how he will do but I will let you know. You are all in our prayers and we love you.

Pretty Good News and Ponds

2008-11-12T12:49:00.001-08:00

Sorry that it has taken so long to get this post in! We went to the doctor on Monday and got good news, his counts are up. Joshua is rebounding at last from this last cycle and doing well. Hopefully we can have a few weeks peace till the next cycle on the 21st. I am a little worried 'cause he says his throat is scratchy and there is a cold going around but I will hold my breath and it will be ok. Meantime the hearing news is not so good. His hearing loss is still in the 6000 -12000 megahertz range but it has gone from mild to moderate so the amafostine doesn't seem to have helped. The only good thing is that he only has to have the drug that is doing this damage 2 more times so hopefully he will be done before the damage is too great. The hearing specialist was very concerned and told us she put her recommendations in to the oncologist but we will have to wait till at least the 21st to discuss it. The cycle we are doing next doesn't have this drug and the ones we are taking have less affect. They still want to do hearing tests every four weeks to watch the progression.
Well we are working with the insurance company but may never see our adjustment. The mortgage company has lost the check for good and we had to ask for a stop payment on it. That means we may not see that money for 45 days or more. As for the rest, they are still haggling about the amount and who knows what or when they will settle it. I am really bummed, I hoped to have the house fixed for when Gordon's Dad and Mom come but it won't even be started. Oh well, I have moved my attention on to the gingerbread house I am planning to make with Maurine and the kids. I even found blue fruit rollups for a pond.

Surprises, Statistics, and Smiles

2008-11-05T13:13:00.000-08:00

I thought you would love this picture. As usual there is a story that goes with it. Sunday morning Gordon went to a meeting and I got in the shower. When I got out I came downstairs to check on the kids (they were watching a video). As I got to the bottom of the stairs I found a man in my foyer with the little ones. I had not even heard the door bell. I was shocked and embarrassed because I was in a towel! I told him to come in and ran upstairs. It took me a minute because I knew he was family but I was so surprised I could not think who it was. After I got dressed I realized that it was Bill Grohoski. Bill is one of our relatives in New York. That explains why I was so surprised to see him. Turns out that he was in Texas on business and had a couple of extra hours and wanted to see the kids. We were so glad to see him and had a wonderful visit. I want to take this time to remind everyone that while our house may be a mess and I may be underdressed, we love to see family and you are always welcome.

Now, on to statistics. Josh is neutropenic again. That means that his counts are in the unsafe range and we are on high alert. No scouts or primary at church. We go back the doctor on Monday for a hearing test and they will check his counts again. Hopefully his counts will go up over the weekend. They are talking about a platelet transfusion now. We will know on Monday. Do you see the theme happening here. We keep waiting. I don't mind so much as long a Joshua is doing well at home. We kind of like going to the clinic all the time. (hahaha)

Well I just want to leave you with our love and a smile. I know that the kids look a little goofy in this shot, the sun was bright. But I hope you can smile, one because I am always a mess, two because my beautiful children and our wonderful relatives look great, and three because Josh is home and happy and feeling good today.

Halloween Fun!

2008-10-31T13:07:00.000-07:00

I am glad I am done whining, I have so much to be grateful for and Heavenly Father has blessed Gordon and I 5 times over!

Just a Litte Whine with That

2008-10-29T16:56:00.000-07:00

Well we never seem to be up for long. Before I start this I had better say that yes we are blessed and Joshua is doing ok for now, we will see what his counts are on Friday.
Now, on to the whine.
We had an adjuster here right after the hurricane. She told us that the damage was substantial ( I agree) and said that she would get us our insurance fast so we could go to work. The amount of the damages was so great that they sent us a check to get started. Well long story short the mortgage company lost that check and we still do not have it. So we turned our attention to the final adjustment. Well we found out yesterday that they are not sending it. The insurance company says that the adjuster was way off and that they think the damage is only worth about 6 to 8,000. With our 4,000 deductable (yes you read that right, they do a percentage of the value of your home here) we will probably not get enough to fix the house. Now the insurance company says that we must start over again with a new adjuster and everything. It could be months before we get anything at all. I can not tell you how depressed I am. It is not about the money it is just another disappointment. I know that I have lots to be thankful for but I am just tired of this. I have had a hard time with this move and tried to be positive even after the hurricane. I told myself that this would be good, we could get new carpet (this carpet is in pretty bad shape) I told myself when we repainted maybe I could use some pretty colors but that is just not going to happen. I know that I am being selfish and should be more grateful but I can't stop crying. I keep doing silly things like signing up on Oprah hoping she will pick us for a home makeover or something. I know we are not special and that many people need help more than us but I am tired. Great, I am crying again. I feel like it will never get better, Josh will never be healthy again, we just can't seem to get to the top of the hill.
Please let me say, I know that Jesus Christ and Heavenly Father love us, I know this all has to happen and has a purpose. The only thing that keeps us from going under and giving up is that knowledge. I just don't know if I am up to the challenge, I worry that I am not strong enough, not .....something. I want to be happy, I want to look for positives, I want to be the example for my children. I want them as adults to say that their mom never wavered and always made a difference. I just can't seem to get past my broken heart.
Ok, I didn't mean to ramble on and I will be better tomorrow. I am blessed and I will keep counting my blessings. When I finish the long list I promise to feel better and smile. Please pray for us and I will post this weekend with Josh's counts so you will not have to look at this long.

Chores, Costumes, and Counts

2008-10-26T13:37:00.000-07:00

I am posting today so you will know what is happening now. I (of course) got home from Maryland, and things have been busy since them. I am so proud of my good husband. He took great care of the kids while I was gone. In the past he has been hesitant to take them out of the house when I was gone but this time he really went the extra mile. He took them to McDonalds for dinner and let them play in the playplace then they went to the church for Josh's scout meeting and afterwards they went to Walmart and bought me a card! Of course it took a few days to catch up on the chores but that is to be expected. I am still going to the laudromat and that takes a day so it puts me behind. I finally feel like I am catching up and back into a routine. I am excited to report that I am writing this from my new laptop computer. My old computer (old enough to have windows 98) is dying. It keeps getting hung and then takes 6-7 tries to restart it. We found a really good deal on a laptop so Gordon said I could get it. As long as the old computer works we will let the kids use it for Webkins and such but now I have a computer to do my work and Relief Society reports. I love it and feel like I am catching up to the times a little. I am also excited because Josh is spending more time in the hospital now and this will make it alot easier.
Moving on to Josh: He had his last chemo for this round and the next 3 weeks should be his down time but he is in a pattern where his counts drop on week 4 instead of week 2. On friday when they checked his counts he was ok but his Hemoglobin was very low. Below 8 requires a transfusion and he was 8.9. Normal is over 11. Because he is on the downward track the oncologist thinks he will need a transfusion this round but for now we are watching him. If he gets a headache or becomes pale(more than he already is) or listless we have to go right in. The danger with this low number is that he could have a stroke with this low volume. We will go back next Friday for counts and to see about that transfusion. We already planned to be there anyway for the big Halloween party that the hospital has for the children. We are pulling the other kids out of school so they can attend. the kids are excited about their costumes. Josh borrowed a Luke Skywalker costume and Ted is a baseball player. Miriam is Tigger and Dorothy a flamingo and Rachel is a catwoman. She has a pretty black dress with purple trim and ears and a tail. It will be alot of fun for everyone, they have trick-or-treat and a parade and lunch and games. Anyway I am nervous for him but that is pretty normal and I am sure he will be fine. Our church assigns 2 men to visit every family once a month and make sure they are ok and they are coming tonight so we will see about a blessing for him to make sure of it. All in all we are good and happy and grateful for the prayers that keep us that way. You are in our prayers too.

Midnight, Miserable, and Maryland

2008-10-15T13:45:00.000-07:00

Ok, as usual I am behind in my posting with the events of the week. First off, we went to the hospital for our chemo admitt on Friday and they sent us home. They had 9 kids waiting for beds and nowhere to put them. Because Josh is on a protocol we were bumped to the top of the list and they called us at 9:30 Friday night. We got checked in and in a bed between 10:30 and 11pm. They have to hydrate before the chemo can start so that had us waking Josh at 2:30 to take one of the chemo drugs that is a pill. The rest of it is IV so he could sleep. Well, this was another bad round. It is getting harder and harder for him to handle this poison they are filling him with. They ended up giving him 4 different anti-nausea drugs at the same time and he slept for the next 24 hours. He would wake up to go potty and throw up and then fall back to sleep. He told me that he doesn't want to do this anymore and I had to give him the "its your job to keep trying and not give up" peptalk. Of course I feel terrible telling him that and wanted to cry but after I talked to him he said ok and in true Josh fashion did not complain again. We got him home on Sunday about lunch time and I am excited to say while he is tired he is much more stable than last time. He is eating just enough to stay strong!

Now onto other news. I am in Maryland as I type this. My sister had to have surgery to have her thyroid removed and she has heart problems so I felt I needed to be with her and her daughters today. (People are going to start thinking I have a thing for hospitals) I flew in last night and leave in the morning but I am very glad to be here for her. It was really hard to leave Josh, the other kids are accustomed to me leaving for a day or two but he cried and I almost didn't get on the plane. I am proud to report that he is having fun with dad and even conned his teacher into playing dominoes as part of his lessons today! I will be very glad to get home tomorrow, I worry so much now. Anyway,,, we are ok and grateful for the prayers that get us through each day.

Ups and Downs

2008-10-09T20:28:00.000-07:00

Well today I am not doing so well. I guess some days on this roller coaster are just harder. We went yesterday for his hearing test and are scheduled for inpatient chemo tomorrow. We got the bad news that he is starting to lose his hearing yesterday. The radiation damages the hearing but the sucker punch on this one is the chemo. One or the other can usually be overcome but both can be too much. Right now it is just high tones so it is not noticable in normal settings but the audiologist says that it is serious and wants him back in 4 weeks instead of 6. Unfortunately the culprit is one of the drugs he will get tomorrow so it is very hard for me to take him in. There is no way to know how bad the total hearing loss will be so they will just watch him closely and if it progresses too quickly they may adjust his protocol.
He has done so well and some days seems so "normal" that it is very easy to fool myself into believing that this isn't so bad. But then I get the wind knocked out of me and remember that he is critically ill. I guess that there will never be normal for us again. Gordon and I were talking about how this has affected the other children. Gordon heard Ted and Miriam talking and they very casually said that "when Josh is done treatment we can do that like normal" and Dorothy made a poster about herself for the class and under the section about things she can do she said she can do treatments and give shots. Apparently she thought that it was important to be able to do those things. We try desparately to make things ok for them but they are smart and this takes so much from our family.
We do have somethings to look forward to right now! 2 weeks before Thanksgiving the boyscouts are having a family campout and we can all go and then Grandma and Grandpa Jones are coming for the holiday. We just have to take it one day at a time and do the best we can on that day but boy is it hard. I want to make him better but everthing we do just makes him worse. I pray it is all worth it, it is easy to second guess every choice we make. Please keep praying, we sure need it and appreciate it. We love you all, if I haven't said so in a while please know that you are welcome here. Our house is a mess but there is always room and food and we will even try to be fun!

School, School, and School

2008-10-02T09:59:00.000-07:00

YAAAAAA! Josh started school. We had a meeting yesterday and he did testing afterwards and this morning. They sent us home with lots of schoolbooks and the new teacher will be coming on Friday! We are thrilled and Josh has been so upbeat about things. He will be having class 2 days a week at home for 2 hours. Yes, he can keep up with his class with 4 hours a week of instruction. I would ask why our other kids need to be in class for so long but why complain about a good thing? HAHAHA I am just so glad that he will be able to get involved and not float around the house all day. I talked to the teacher about having him do things in art and music too but they don't offer that so I will have to instruct him myself. Thanks to my mom, I think I am qualified to give him instruction on the arts and we are looking for a teacher to keep his piano up. He loves classical music so we have been working on listening to and identifing different instruments in a piece.
Also, things are looking up for the house. We are working with Robert, Gordon's cousin and we picked out carpet and tile and paint and hopefully they will start on the repairs first of next week. I am starting to feel better about being here and I am looking forward to getting the rest of the boxes unpacked so we can feel settled. I feel so blessed to be where we have some family to help us and such a great ward to lean on. We will have to see what the future holds for us but it is better this week than last. (At least we are drier and moving forward) I know that your prayers help make things happen and we really appreciate it. Keep it up and we will pray for you too.

Fears, Fences, and Frogs

2008-09-23T20:54:00.000-07:00

Well we have power, but the house is a mess. Our roof has been fixed (thanks to the kindness of a member of our church) but we have no fence. We are dealing with a plague of misquitos and frogs. Ok, let me go slower. First, the important stuff: Josh went to the doctor Friday and his counts were low. His weight was up but so was his nausea. We went back today and his counts are going back up but his weight was down and we are working on the nausea. All in all he is rebounding but slowly. We do not have to go back till the 8th of October and then he is inpatient on the 10th for more chemo.
Onto the house. The inside is a mess and there is no easy fix. We are waiting for the insurance to give us a number to see what we can do and even then it may be a while till we can fix anything. Building materials are in scarce supply and contractors harder to find. However our most pressing matter is our fence. A stray came into the yard to drink the dogs water and eventually bit Miriam. She is ok, it was just an overgrown pup and didn't break the skin but it drove home the point to us that having our yard exposed to the road behind us was not a good thing. Also the poor beagles are devastated to be on leash lines all the time. Unfortunately our association apparently owns the parimeter fence in our neighborhood which includes our back fence and they don't seem concerned about fixing it anytime soon. I am working the angles trying to find a compromise but it is a mess.
Now, for some fun....we now have mosquitos (no exageration) the size of flies and a prolifiation of frogs. (yes this does remind me of the plagues of the old testament) Well tonight I heard the dogs barking and they were tangled in the leashes. I fixed them and they ran after something. Megan grabbed it in her mouth and I was scared that it might be a snake or something. I yelled and shook her till she dropped it and it was a frog. It hopped in circles (apparently being a dogs mouth will leave you in a daze) but eventually hopped into the grass. However they chased it and I had to capture it and run through the house. It jumped out of my cup by the front door but I managed to free it into the front garden and I hope it hopped away. I would like to expose my son's apparent lack of bravery- Josh hid on the sofa during the whole event. I do not know what he was more afraid of, the frog or my screaming every time it moved. ( stop and get a visual of this) Anyway, we are trying to get back to normal but I just don't know what that is anymore. School still is not back in and today they said not tomorrow or Thursday either. Groceries are hard to come by and I no longer believe we will ever get rid of the boxes. I guess that doesn't matter too much, everyone is doing ok, and we get by......Keep praying - we pray for you too.

Hurricane Ike

2008-09-14T06:02:00.000-07:00

The wind howled, it started at 10pm and every hour grew stronger. By 1am the house shook. By 3am a loud screeming like a kazoo started. It would stop for a second like the storm took a breath and start again. We huddled in the pantry and waited. Finally at 5am the sind slowed down. It stop until almost 10am. When it was over we were left with no fence in the backyard, some roof damage water in the attic, and the master bedroom and playroom soaked from the windows, the downstairs office is the same. The garage has water coming out the light fixtures. And we have no power. BUT, we are okay. We are lucky, we found shelter in a condo in the city. We have power, but no water. Joshua was getting ill from the heat but now is okay. It is very hot and muggy and this morning it is raining again.
Im so tired. We are very blessed and I know that, but Im just tired. It will be at least a week before we have power and can go home. I don't know how long before we will be able to get the house fixed. I am worried about mold. Again we are lucky, the house three doors down was destroyed. The owners wern't home so they wern't hurt. I dont know what to say but we are okay. And we are lucky and we will get by. I still have 5 children, 2 dogs and 1 incredible husband. We pray for those who lost more than us, and ask that you do the same. As always, thank you.
And thanks to Lanae for typing this as I dictated it!

Weather, Watching, Worries

2008-09-12T12:52:00.001-07:00

Well I see a lot of people logging in to see if there is an update. It is about 3pm and we are waiting for Ike. The sky is getting dark and the wind is picking up but there isn't anything yet. We are expecting the storm to really hit about midnight. People keep calling and asking were we actually live and we are south of Houston in a town called Pearland in Brazoria county. It is the only town in the county that was not manditorally evacuated. They asked us to stay put so the people in danger of drowning in the flood waters had a chance to get out and the roads would not back up and leave them stranded. Our current danger is the wind and we have made a closet under the stairs and the laundry room into bedrooms for the children for the night so they will be safe. We could not board up the house because we have brick on the house and you have to get special clips and they have been out of them for days. Only one house on our street is boarded so hopefully we will be ok.

Joshua and the other kids are doing well. Josh is feeling better this week he is eating a little more and up to 67 pds, Dorothy got her stitch out, Miriam and Ted are doing well in school and Rachel is still spoiled! We have just begun our 3 week break in treatment but one of the differences here is that they still want him to come in every week to be checked. It is hard but I like it because I know they are really watching him and I feel much more secure. Of course we were supposed to come in today but that was cancelled due to Ike so we will go in next week. We were in on Tuesday and his counts were good so that is good news.

Please don't worry to much, we will be ok. We have been watched over through so much already I find it hard to be scared of a hurricane! We are being safe and trying to be prepared and that is all we can do. As soon as the storm passed and we have power I will make another post so watch for that. And thank you for your continued prayers.

Stitches, Super Powers, and Sweet Memories

2008-09-04T08:08:00.000-07:00

This post is about my sweet and brave girl Dorothy. I promise an update about Josh at the end.

Last night Dorothy cut the back of her ankle. Because of the location she needed stitches. We went to the emergency room and the doctor told me she only needed one stitch. He said that the numbing medicine would require 3 needle pokes but the stitch was only 2. I told him to just stitch it, she would be fine. He left the room for a while to get ready and while he was gone I talked to Dorothy. I reminded her of a story that she has heard about before. In the early days of our church the prophet was Joseph Smith. There is a story about when he was little that he needed an operation. They wanted to give him whiskey to dull the pain and then bind him down. His father said that they didn't believe in drinking and that he would not have to be bound. He held him and Joseph was still for the operation. I told Dorothy that I would hold her. I told her it would hurt but be over quickly and she would be ok if she held still.
When the doctor came in he brought a bunch of nurses to hold her down. I told him they didn't need to be there, she would be still. As I held her she asked if she could cry and I said of course, a nurse told her she could scream if she wanted. Dorothy was very offended and told her that babies scream and she would not. Well she cried a little but never moved and was very brave. They were all amazed at my brave girl! Afterwards, while we were waiting to be discharged, she told me that she was going to thank the doctor when we left. She fell asleep and when I carried her to the car I said goodbye to the doctor and as he said the same we heard a little Thank You from my arms.
As I write this I am crying. I miss so much of my other children because of this terrible disease and hope that they know how much I love them. All of my children are very special and I love them so much. Also, this is my first stitches! I always knew it would be Dorothy!!

Now an update on Joshua. He is stable now but had a rough weekend. After not keeping anything down for 3 days his weight is down to 63 pds. They are considering putting in a G-tube to suppliment his feeding but we do not know yet about that. We did get him on anti-nausea meds and he is eating now but he just can't eat enough and we will be going to the doctor tomorrow and Tuesday to check his counts and weight as we watch it. Also the toxicity from the vincristine is getting worse and his speech is going down hill so they did not give him his dose on Tuesday and are discussing cutting it out all together. I was very frightened when we got to the doctor and saw how much his weight had dropped. I asked them how bad it was and they said "well he is not tachacardic yet" That means that his heart is ok but he is little enough to start affecting his heart. Needless to say, I am very worried and we are working hard to get him to eat. We had him meet with a nutritionist and he is now trying to eat something every 2 hours. I am proud of the fact that he works so hard to do what they tell him to do. Nothing tastes good and yet he tries.

Thanks for the prayers and your love, we continue to live day by day and prayer to prayer.

In Memorandum

2008-09-01T10:18:00.000-07:00

We have a heavy heart today as we share the loss of our dear dog Misty Jo. She has been staying on the farm with Gordon's cousin Wendall and Kathy while we got settled here. She was old and suffering from dementia that was causing aggression and confusion. While we are very sad she is gone, and I personally feel terrible that I was not with her, we are greatful to Wendall and Kathy for their care and love to her at the end of her life. At first we were not going to tell Josh, she was his special dog (she slept under his crib when he was first born) but this morning he asked when we were going to go get the dogs and we knew we had to tell him. We have promised him to always tell him the truth so we did. He cried and was very sad but we talked about how happy she was now and that she wasn't confused anymore. I was very proud of him because he wanted to tell the other kids and he did a great job.
Josh is having a hard time of it right now. He can not stop throwing up and is very weak. I am beginning to see a pattern, I don't think we are dealing with nausea as much as dizziness that is causing nausea. I am not sure if that is good or bad but we see the doctor tomorrow and hopefully they can help. It was the prime reason we didn't know if we should tell him about Misty but I am glad we did. He really is remarkable, with all the terrible things that keep getting thrown at him he just keeps getting back up and handling it all. Also it is what makes me greatful everyday for our faith. Being able to tell him she was with Heavenly Father and happy matters. Joshua (and the rest of us) has such a great faith in Heavenly Father's plan and belief that we will live after this life and be together again as family. It gives us peace and security that we need now. I laugh when I think of Misty laying at the Masters feet and snoring! HAHAHA Please keep us in your prayers, I do know that Josh is sad and Teddy took it hard as well.

Before I forget again: Our new address is

1903 Plum Falls Lane

Pearland, TX 77581

281-506-8987

Hospitals, Hopes, and Brewhahas

2008-08-28T20:35:00.001-07:00

Well there is lots to say tonight. First, the important things. Joshua had his first hospital stay in Texas and it was rough. He had a reaction to the chemo and was very ill yesterday. I was very worried and spent the morning wondering why we came here. I now know... They were wonderful at MD Anderson! Everybody stepped up to the plate and worked hard to help Josh. The staff at the hospital showed so much concern and worked with all their skill to get the problem under control. I am so happy to say now that after an extra day at the hospital he is home and doing well. We will watch him closely and let you know about his counts next Tuesday when we go in for outpatient chemo. As we try to settle into our new home (yes we finally did close) and schools (Dorothy has already missed a day of school due to the hospital stay) and get used to the bugs(there are too many of them - we have moved in but the ants are unwilling to move out) I feel like we may make a start here ( if Gustov doesn't hit).

Now on to some business that I am very sad about. My last post generated more comments than any other single post. Sadly there were some that I would rather have not had. I am hoping that my comments tonight can be the end of this and clear up some misunderstandings. First, I love Nebraska. I have had the hardest time leaving. It was harder than any other place I have moved from. We will be forever greatful for the support and care we recieved there. In our hardest time many people stepped up and made a diffence in our lives. That said, we felt strongly we had to move for Joshua. There were aspects of his care that were not working and so we are now in Texas. NOW, the purpose of this blog is to let everyone know what is happening with Joshua and our family. It is also a place for me to share my feelings, that means that sometimes I will say what I am thinking or ramble (see disclaimer at top of blog) NOTHING I say is meant to hurt or offend anyone. A perfect example of that is the comment made in the last post about Nebraska. I was reminding myself why we had to move, because I was struggling at that moment with being in Texas. I am sorry if it offended anyone and I appreciate those who rose to my support when they thought I had been yelled at.

With that said, I ask that we keep the focus on Joshua. I also ask that you give me a little leeway as I pore out my heart. Sometimes I don't say the right thing but it is because I am so heartbroken. Our lives keep changing and I frankly can not keep up. I am greatful for your comments and wait eagerly for them. We love you all and I hope you know how important you are to us.

Cats, Cops, and Critical Care

2008-08-20T20:56:00.000-07:00

Well do we have a story to tell. Today while we were taking our cousins, Kim and Robert Jones, daughter Sarah home we stopped at a red light on a major 6 lane road. A small cat jumped out of the median in front of us trying to cross the road. We waited but the light turned green and other cars started to go. She was very frightened and ran under our car. Now we were stuck not able to move. I got out of the van to see what I could do and she jumped into my arms! I am allergic but I could not leave her there to surely die so I put her in the van. I asked Sarah to hold her (she owns a cat) but she yelled that the cat might have rabies and didn't want to touch it. Now my little ones are freaking out ( the cat was fine just frightened) and the light turned red again. I calmed the children (Sarah included) and we went to 2 animal hospitals looking for help to keep this cat off the street. Unbeknownst to us the driver on the road behind us had dialed 911 and told the police we hit the cat and it was animal cruelty. Well both hospitals were closed so we decided to find a policeman to help us and when we did we got a shock, they were looking for us! After we assured him the cat was fine he said he would lead us to the local animal shelter. As we followed him another police car followed us. Talk about your low speed chase! Hahaha When we got the the shelter they came running out and were very glad to see a healthy cat not a run over one. We took her in and signed her in and they even remembered us because our older beagle Misty got out and they brought her home when Gordon first got to Texas. When I mentioned we were the family with the old beagle that snored they said - you are the people from Nebraska. Apparently Misty made quite an impression that day. Anyway thanks to the fact we had the cat and could show she was not injured we did not face animal cruelty charges. Also we are now friends of the Sugarland police department and the animal shelter. If you are in Texas there is a pretty grey cat looking for a home. Sweet and not afraid of strangers.

Those of you that know me know that while this story may seem far fetched it is the kind of thing that happens to us all the time and now we can start to feel at home in Texas! Also in case you are wondering while my arms swelled up I did not have any breathing problems so we where blessed for helping a defenseless animal and we did eventually get Sarah home.

Now onto other news. We were supposed to close on our house Thursday but the paperwork is not finished so it may not happen till Friday morning. I will get you the address and phone next week, it may be Tuesday before the hook ups are complete. Also we had our first appointment at MD Anderson and it was great! They really knew what they were talking about and the are taking great care of us. We have an MRI on Friday and then we will be hospitalized on Tuesday for our inpatient chemo. I was really impressed that with all the questions I threw at the doctor he knew all the answers without having to look and was not worried about anything going on, just gave us a plan to handle things. I will have lots more info when we are at the hospital Tuesday but we did learn that Josh will not be going to school this year. I don't know exactly what the plan is for him, it could include homebound instruction or even online school, but we will get that all set next week. They say that it is too much for them to try to get to school with unstable counts and the weakness the chemo brings. Every cycle will be harder on his system so we will go to plan B. (this is another thing Nebraska was wrong about) Faced with the school uniform Josh was not too sad to stay home and is excited about learning on the computer. All in all things seem to be falling into place so we are excited about what happened today and are feeling better about being here. God Bless you and I am sure your prayers are making a difference so thank you and keep it up, we pray for you too.

Still Waiting

2008-08-18T10:58:00.000-07:00

I guess I need to post something - looking at the number of people checking the site. I wish I had some answers or something good to say right now. We are in Texas, we are hoping to close on a house this Thursday. Once we are done with closing I will post our address and phone numbers. We went to church on Sunday and the ward seemed very nice and it was very good to be somewhere familar. HOWEVER,,,, we still don't have an appointment with MD Anderson. They will not even make one without the insurance. We have a number now but that will not be in the computer for 3 days and so we have to wait. I do not think we could cut this any closer. Also, poor Rachel has been very sick since Friday. She started with a 103.8 fever that would not break with Motrin or Tylenol and then got very bad diarrea. The fever is down now but not going away and she can't keep anything in her system for more than 20 minutes. I am trying to get her to a pediatrician but the other kids insurance is not ready yet either. Texas is alot harder to deal with. Even though the kids insurance is a sure thing Texas wants us to fill out a bunch of forms anyway and they mailed them so we have to wait for them to arrive and fill them out and get them back. I am hoping we can fax them. Also we got the kids registered for school and found out today that they need special clothes. It is not a uniform per say but might as well be so we have to buy all new pants and shirts. The problem is that they must be solid colored and the shirts have a collar. You would not believe it but every pair of pants Miriam has has either a pattern or design on it. And none of them has plain shirts with collars so I guess I have to shop and get new clothes.
It will be better when we are in our own home and settled in a routine but right now we are just trying to keep anyone else from getting sick and get Josh in for treatment before we are outside of the protocol margins. Everything is very different here and I just am having a hard time having a good attitude. We all know who needs to fix that! Luckily, Josh has not gotten sick and while the kids are bored they are doing ok. (they did break a window but we fixed it)

Catch Us If You Can

2008-08-02T06:55:00.000-07:00

Ok, the last comment on the blog was about something I haven't posted yet! Things are wacky and I need to catch up. Lets see,,,,,,Oh yea, We sold our house in Nebraska. 4 days on the market and 2 showings. It is a miracle and we can't wait to be together again. The trick to the sale is that we have to be out by next weekend. SO off we go and on to Texas. Before you ask, we do not have a home there yet and are still looking. We will keep you posted as it unfolds. Now, on to more important matters, Josh. He is struggling right now. He is well but for some reason he just can't keep his numbers up. His count is 340 - even with the shots we have started. I give him a shot in his thigh every evening to help his body produce white blood cells but so far it is not good. His count was 1350 when we started the shots so the fact that it fell is disappointing. Also we have a new problem. His Hemocrit (I have no idea if that is spelled right) has dropped to 8. That is very dangerous and so yesterday they gave him a pint of blood. The doctors say this is fairly normal but the truth is it scared me to death. It was frightening to see him hooked up to the blood. Normally when he is on an IV I help if it beeps but I didn't even want to touch it. (eventually I did) I think that most days I fool myself into thinking he is ok and not that sick but seeing him like that means I can't avoid the truth. Also he is very weak and tired at home and I feel bad for him. We tried to go swimming but he could not make it across the pool to earn a wristband to get to go down the slide and was very sad about it. Also he is not able to gain any weight and is so thin he can't maintain his body temp so he was cold in the water and we had to leave. (please do not give suggestions for how to help him eat - we are already doing everything we can) I just do not know if he will make it to school this fall. If he doesn't it will be a blow to him. Also, I feel so bad for the other kids. Our world is small now, we used to go out and do things but now we just sit at home. I felt so bad telling them to get out of the pool 15 minutes after we got in so we could take him home. They are very good to him and never make him feel bad but that doesn't mean it is easy for them. We used to go on walks alot but that doesn't happen either. We are going back to the doctor on Monday to check his counts again. Please pray they are up, the doctors think they might be and they have to be or I don't know how we are going to travel. I wish I could be excited about this move but everything worries me now and I am just praying we get there in one piece.
Before I go I should list the things I am glad about so here it goes:

1. We are all healthy (you know what I mean)

2. Our house sold here in Nebraska

3. We will be together soon.

4. Josh did get to go to camp and enjoyed it.

5. Miriam and Teddy went to day camp for a week each.

6. Rachel is potty trained (not at night)

7. My vegetable garden is over grown with vegetables.

8. Our friends always seem to know when we need them (ok that isn't so great - we are leaving them)

9. Gordon and I have been bowling this summer and our team is in 2nd place.

10. Texas will be better for Joshua. ( and hopefully good for the rest of us!)

As Always, you are in our prayers. Pray for good counts and a safe journey................Thank you all.

Summer Fun

2008-07-19T20:55:00.000-07:00

Here is a photo journal of Joshua's Camp CoHoLo:
Josh's group (He is in the back, middle)

Being silly !

Joshua in the red swim trunks.

Ready for the dance. This was his favorite part and the older girls thought he was something else asking him to dance.

With his nurse from the hospital.

Off the high dive! With a lot of coaxing, he refused to get down once he climbed the stairs, he did it.

Summer fun!

Camp and Packing

2008-07-15T12:02:00.001-07:00

Well, things are settling down. Rachel's foot is almost healed. Dorothy ended up with Fifth's disease and it is gone now. Josh is off at camp and hopefully having alot of fun He will be back on Wednesday and my next post will have all his adventures. Meanwhile, back at the ranch, we are busy putting everything we own into boxes. I make boxes and fill boxes and then seal boxes. When they are done Gordon moves the boxes into the garage. It is a working, if not old, system. We are having a yard sale on Thursday, Friday, and Saturday and selling everything we can. Some things are sad but we have to cut back to fit on one truck this time. We are selling our air hockey table and our patio furniture and yes, the piano. It is older and these moves are really hard on it so we decided it would not make the trip this time. Last time we moved it was fun, kind of an adventure, but this time it is more sad and hard to let go of these things but I keep telling the kids, it is just stuff and we are going to be fine. Gordon's job is a for sure and he has to start work on the 4th of August. That means the kids and I will be on our own till the house sells so pray that is quickly. We have very aggressive realestate agents and have priced it low so we are very hopeful. Anyway, I promised I would post when things got better but since I am not sure when that will actually be I figured I had better let you know that the kids are ok and we are moving forward. (no pun intended) We are praying your families are doing well............

I Am Not Sure What to Call This!

2008-07-06T15:38:00.001-07:00

Well, I am not sure what to say. Joshua is home and sore and tired but ok for now. His hemoglobin is very low and they are going to check it on Monday. If it isn't better they will give him a transfusion. I don't know if I should be worried or not. Right now we are more worried about Rachel. She has a bug bite that is infected. We took her to the emergency room and they drew a line around the infection about 1/4 of an inch away from it. They said if the infection reached the line to start antibiotics. Well by morning it was 1/4 of an inch past the line and we started the antibiotics. If it does not improve we will have to take her in for IV antibiotics and be in the hospital. Also Dorothy isrunning a fever and I don't even know what that is. So for now we are just holding on and trying to keep together. I will post when things get better...............

Caught by Surprise!

2008-07-03T09:00:00.000-07:00

Well things are going as usual here. Last night Josh had emergency surgery. He is doing ok this morning so let me tell you what happened.......Joshua's counts have been very low, that means that he can not fight infection and we need to watch him closely. These kids get fever and they have to put them on antibiotics so we have to watch for signs. Yesterday Josh was droopy and seemed down. I checked his temp after lunch and it was ok but I kept an eye on him. After that he told me his tummy hurt, but not anything specific. By about 5pm he started throwing up and he had a temp of 99.5. I called the doctor and they said take him in to get his counts and a culture to see if he needed antibiotics. We got to the emergency room and the doctor felt his abdomen and ordered a liver panel. That alarmed me a little but we waited for the labs and got an xray. Then the doctor came in and said his labs were good but he was concerned about is appendix in the xray and ordered a ct scan with contrast. Well things happened fast after that. They brought in a surgeon and he felt his tummy and said he needed surgery now. He started him on antibiotics because he was afraid it had already burst. I told him Gordon was on the way (I had left him home with the little ones) and he said he had better hurry, we would be in the operating room in 30 minutes. Gordon got there on time and Josh had a blessing and they wisked him away. The surgery took about an hour and the surgeon came out and said they got it before it burst! He even gave us pictures to give to Josh. All in all we were blessed, if he had not had low counts I would not have taken him in for such general symptoms and it could have been much worse. Also, when we got the counts they were up! So the oncologist said this was a great time if it had to happen.
I have been waiting to post in hope of having answers about our future, but I guess the present is all we can handle!!!! Today he is very sore and can't talk. The intubation irritated his throat and we will have to let it settle down. He should be doing better by his birthday on the 15th. Now that I have your sympathy I will make a shameless plug for his Bday. Send gifts! Itunes gift cards, webkins, or movie passes are the top on his list of things to ask for. Gift cards to purchase movies he can't get to the movies to see would be good too. There is not much else he wants but he is pretty down right now. He had been trapped at home for several weeks due to the counts and now they are up but he will be home for another week to recover. The nurse said she didn't know of another kid with a hot appendix on top of cancer. When the doctor told him he had to have surgery he said, "why does it have to be tonight?" As always what we need most is prayers. It seems the moment we feel secure with him something else collapses. I will post as soon as I know about Gordon's job, it looks like things are happening but we are still waiting. Thanks for always listening and caring about us and our sweet boy. Bless you.

Tornados and Houston?

2008-06-15T07:12:00.000-07:00

Well I have hesitated to write because I just didn't know how much to share. Josh is doing great, please don't worry about him. His second round of chemo went off without a hitch. Well, ok, there were a few...... We decided that Gordon would stay overnight in the hospital with him and I am glad that he did. They had time to bond and that was great. It was not so great for Gordon when the Tornado warning came and they put them in a closet. The hospital policy is to group patients with like diagnosis so as not to spread infections and such and it happened that on that floor of the hospital there were only 2 chemo patients so they put them in a supply closet. It was another boy so that was good for Josh but the other parent was a mom so I don't think Gordon enjoyed it much. They stayed there from about 5:30 till 10pm. No TV and the laptop computer they had did not get internet. Well they survived that and the next day was uneventful till just before they were to go home. Josh and Gordon were in the play room enjoying the WII. They were bowling and Josh stood up to swing and stepped on his IV. He pulled the needle half way out of his port. Well then a whole group of nurses gathered to see if it could just be pushed back in but the consensus was no. Of course Josh now panics when he is crowded around and he freaked out. The worse part was the port has to be flushed with heprin and so they had no choice but to access it again to do that. Soooooooo after I got on the phone with the nurses and told them to get everybody that didn't need to be there out of the room they put Emla (numbing cream) on it and waited an hour for it to numb and accessed it and then flushed it with heprin and let them go home. I am proud that with as scared as they were making Josh he still let them access it again and get the job done. He is home now and doing great! We started a new medicine this weekend (see story in the next paragraph) and he is doing great with that. It is too big to swallow and so we crush it and it is very bitter but he gets it down. He will take it every weekend, Friday through Sunday, for the rest of treatment so getting used to it is important. My only concern is weight loss. He lost another pound and that was before treatment. I let him eat everything he wants but he just can't seem to put on weight. We will keep working on it.

Now, on to the reason I have had a hard time posting. We are having serious problems with the oncology department here and it came to a head this week. The doctor we work with has made several mistakes and seems to disreguard Josh. Best as I can figure she is treating cancer and not a child. She has a good reputation but I think she is getting burned out. We would switch doctors but there are only 3 and they work side by side so I don't think it would help much. The other problems have been troubling but this week was the worse. We went to clinic on a day our doctor was not there so we saw another doctor and a new physicians Assistant. I was asking about magnesium, our doctor told me we didn't need it on the last cycle but then gave me a prescription for it anyway. I thought I would ask someone else. After discussion they told me we would wait and watch his magnesium levels to start it. This is of course an example of the lack of comunication we are stuggling with. However the PA was there and started asking questions. She looked at our medication sheet and saw that we are not on any other meds. She asked and I told her that we were not using anti-nauseas and she said what about Bactrum? I said what is Bactrum, and she told me that they should start it when they start chemo and take it through for the complete treatment period and then 3 months after. It protects them from a type of pnumonia (I know I spelled that wrong) that is deadly to kids on chemo. For the last 6 weeks we have been playing russian roulette with him! Our doctor forgot it. I know people make mistakes but every week we fill out those med sheets and she never even looked. If she had she would have caught the error but it took a PA that was new to notice what no one else did. Also, if it was the first mistake I would be more understanding but it is about the 5th. I have been researching and have been advised that children with brain tumors should be seeing neuro oncologists and none of the doctors here are one. There is no option here for treatment, no other centers to go to. I have checked and there is a list of the top ten brain tumor centers in the country and 2 of them are in Houston Texas. My heart is broken as I love Omaha but we do not feel we can stay. Gordon is flying to Houston in about a week for some interviews and we we will move when he has a job. I keep hoping something will change but I do not see how so I will begin packing up the house so we can show it and sell it. Our lives are no longer our own, this terrible beast (cancer) now rules us. I cried most of the week but now I am trying to look forward and I am excited to move by some family. Gordon's cousin Robert and his wife Kim and their children live there. They have a son who is about Josh's age so he is very excited. Also, it will be exciting for Gordon to be working again and there seems to be a lot more opportunities in Houston. This is the best thing for our family and we will be fine but it is hard for me. I love the wind and cold and people here but I am sure there will be much to love there too. Well, I guess that it helps to write this down but I hope you can see why I wasn't sure how much to tell. I decided that the purpose of this blog it to share this journey, no matter how rocky and uncertain, with the people we love and this is part of it. It is just hard to be so unsure of were we are going and what will happen next. We love you and your support it what we hold onto when we are sinking in desisions and feel so inadequate to this task...........God Bless your families and we keep praying for you. Please pray for us and if it is for something specific this week, let it be for a job in Houston so we can begin to move forward.

Summer Fun

2008-06-04T22:30:00.000-07:00

Well I am adding this picture of Joshua. I have a video but I can't figure out how get it uploaded. When I do you will be able to hear him play his recital piece. The nicest thing happened on Sunday, we got a call from The Taylors, Candice was having her senior recital and heard about how Joshua missed his. She asked us if Joshua would play that night at her performance. It was so wonderful, he did a great job and was so happy! I am so greatful for their thoughtfulness. Sometimes Josh gets down and things like this really matter. He is doing well and we are enjoying the beginning of summer. We started swim lessons for all the kids. We talked to the director of the program and put him in a class that could let him attend but not let him feel behind. People always ask how he is doing and we say great cause he is but it is important to remember that what that really means is that he is doing great for a child with brain cancer. He gets very tired and doesn't eat nearly as much as he should. It shows up when he does things like swimming because he has no stamina, he can't make it accross the pool. We try not to put him a situation where it is obvious, that just makes him sad. Other than that things are great! Piano, swimming and just having fun is our plan for the summer. We invite anyone who can to come visit, we can't come to you but there is always room here. As always, thanks for your prayers and you are in ours.

(Our next hospitalized chemo is the 11th of June and we are expecting to be there one night if all goes well. I will post more info when I have it...........)

Wolves and Accidents

2008-05-25T13:02:00.001-07:00

We have made it through the first round! We had our last outpatient chemo on Friday and now we have 3 weeks to rest before we start again. Joshua is doing great, I am very hopeful judging from this cycle that we can get this done. In typical Joshua fashion he has continued his scout work and on Friday night he got his Wolf at pack meeting. He is already heading down the arrow point trail and working as a Bear now.

I could not resist adding a few pictures this time too. The first is obviously, Josh getting his Wolf. It is not a good close up of me so I thought I would add one of those as well. For anyone who has not heard the story, I was mowing the lawn and tried to move the yard waste can. I tripped on the lid and fell into it. The doctor thinks I fractured my orbital bone but there is nothing to do for it but let it heal and make as many jokes as I can think of. ( I got canned.....) I have been trying to get Gordon to feel sorry for me but he can't seem to stop laughing long enough! Hopefully this will get some sympathy. However, I know that anyone who knows me will know that I am accident prone and not be too alarmed or concerned, while I tend to get into trouble I always seem to recover just as fast. Anyway, Josh is doing well and that is our measure of happiness. We hope all your families are well and please know we pray for you. Remember, no matter what slows you down we should all follow Joshua's example and keep working for our goals. Awooooooo ( Wolf howl)

Progress and Graduation

2008-05-18T06:44:00.000-07:00

We are estatic! Josh is doing so well. He is not even on anti nausea medicine right now and his counts are good. (that means he has enough white blood cells to fight any infection that might come around.) He got to go camping with his dad and Teddy and his Uncle Justin. For those of you who may not know, once a year our church has a campout for the boys and dads. It is just an over nighter but they love it and it is called Fathers and Sons. Needless to say it was very important for Joshua, he has missed so much now. I was very worried about how tired he would get but he did just fine and is only a little tired today. I talked to the nurse and she said that it might get a little harder for him as time goes on but that this is a very good start to chemo.

Now, on to other great news! Gordon will finish his last class in June and we found out they have a graduation ceremony and he will walk on June 22nd. I could not be prouder of my husband. He has a degree but when he found he needed a secound, in accounting, he did not hesitate. He has gotten all A's except one B. To do that normally would be great, but he has done this during this hard time and never slowed down. He has worked into the night many times to get the assignment done and with all the other worries we have it is just amazing. Please pray for him to find a good job he has worked so hard for it and is so good at what he does. As always thanks for your prayers and you are always in ours.

Round One

2008-05-10T20:51:00.000-07:00

Well we are off to a bumpy start. The good news first. Joshua's MRI was clear. That means that is showed no evidence of tumor left behind or new growth. (there was an area after the surgery where they didn't know what it was, left over tumor or swelling) Also we got the first round of chemo and he did not have a reaction to the infusion. (that is when they administer it, sometimes kids get really sick or have breathing problems) He is also eating well right now.

Well let me tell you the whole story. We went to the clinic on Thursday for our appointment. We had the MRI and then they told us the doctor was busy and we got lunch and then hung out and waited. Finally the doctor called us back and told us that they couldn't start chemo because they needed a 24 hour urine collection and forgot to tell us about it. She said well you live close come back tomorrow. So we went home and collected through the night and were back at clinic on Friday at 11am( when they told us to be there) They seemed unprepared for us and it took more than an hour for them to just get the sample to the lab for analysis(urine). Then we had to wait for the results to get started. That meant that we did not get chemo till 6 pm! Yes you heard right, they got us checked in a room and started at 6. That meant that we did not get released till 6pm today.(Saturday) Joshua had his first piano recital at 2pm today. His teacher gets a room at the Joslyn art Museum with a concert grand piano to play on and he missed it. I can not tell you how discouraged he was. He worked so hard on his piece and was so excited. We work so hard to try and keep his spirits up and he crashes very hard. I am very disappointed in our doctors and staff because it was preventable and not one but several errors caused this. We are hopeful that he will keep feeling good so that he can start to be up again. This group of drugs can have a delayed reaction so we are holding our breath till Tuesday. If he can get to then without going downhill he will do great with this part of the protocol. Also a word of caution now. We are in that part of the treatment where his white count can be low so no one can come around if they are sick. Well we are excited about the good news and want to focus on that. I hope all your lives are filled with your own good news and we will pray for it to continue. As always, thank you so much for your love and support and as Saturday draws to a close and Sunday starts --- Happy Mothers Day to all you wonderful Mothers, your example paves the way for our efforts.

This Is A Long One!

2008-05-04T06:54:00.000-07:00

Well I haven't posted much during our break, I have been spending time with the children. We have worked in the gardens in the yard as much as possible. It has been fun and now my back aches and my knee is swollen! (I knelt on a brick) Josh has even gone to the Y to shoot baskets by himself a few times. (it is 3 blocks away and we pick him up when he is done cause he is tired) He is definately not as strong as he used to be but he is doing good. He has been going to school and riding his bike and having fun. That is why I should not feel the way I do. I am so worried about this week. Let me give you the schedule and then I will talk about it.

We have 3 doctors apointments on Wednesday. We have the hearing test and I do expect him to have hearing loss. He now panics if he is in a small place and people are loud. I think that the sound echoes and it is frightening to him. We also have a follow up with the radiation oncologist to see how he is doing. The other appointment is one I am not sure about. When all this started the orthopedic doctor he was seeing wanted him in braces to help his walking till they could do the spine surgery. The insurance denied it cause of his prognosis. Unknown to us the doctors appealed it and now they have approved the braces. We will get them on Wednesday. I am just not sure if this is too much to ask him to deal with. He wants them because they come with custom fit scetures(boy I spelled that wrong) sneakers. We decided to get them and see how it goes. He still gets tired easily so I just don't know.

That brings us to Thursday! We go into the hospital at 9:30 and they start an IV with his port so that they can use contrast during his MRI at 10:00 Then we go to the clinic and start chemo. They will give him chemo and fluids through the IV overnight and then we are supposed to go home on Friday late in the afternoon. Other parents I have talked to say if you are throwing up or have diarhea or are not eating you do not get out. We will have to see. This is the first MRI since treatment started so we are nervous to see what it says. Also, the treatment so far has been very hard on Joshua and it was supposed to be the easy part. It takes all I have to make him do this and see it slowly drain him. Even though he has been doing great, that is relative. He is different and I know that we are making it happen. It is hard to be on this road and feel like we have no choice. Now, I know that I have a bad attitude, don't worry we are positive and upbeat with Joshua. It is just that I can't shake this dread. We are doing our best to be prepared and ready to handle this. I have tried to get my projects done so I can focus on Joshua. We have had lots of fun during this down time and I think he is ready for this. Please keep us in your prayers and we will hope for the best. I know that we could not get through this without all the wonderful support. We love the cards and letters and it means the world to us that so many people care about Josh and our family. Thank you so much.

With all my whining I do not want to end this post without saying that we know that Heavenly Father knows our struggles and wants to help. We feel that he is with us and Jesus Christ stands beside Joshua. This trial must happen but he doesn't leave us alone and we will get through it. Joshua is a warrior and we are fighting with him. God Bless you all, I know he has blessed us.

Promised Pictures

2008-04-22T20:17:00.000-07:00

It took me a while to get Gordon away from his computer to upload these. Joshua is standing next to Dr. Lin and laying on the table by his favorite technician. He never lost his smile during this hard time and we are excited to see it every day. Bless you all and keep smiling!

Count Down

2008-04-15T01:00:00.000-07:00

Sorry it has been so long, I am not sure what to say or how I feel. We are done radiation! That is wonderful! Joshua is doing well and feelling better. I am trying to wean him off his meds and he wants to go to school part time. Now, on to the part I am reluctant about. On May 8th we go into the hospital for the first round of Chemo. I have been attending a support group and it has made me worried. Other parents talk about how the hospital stays can become longer than planned. The doctors say that the children tolerate the medicine well but these parents talk of symptoms that we have already seen and what a struggle they are. Also, I am holding my breath because he has an MRI that day and it is the first since he started treatment. Also his oncologist was not very sure how going to school work out. She says that there is "bounce back" that can occur in 4 to 6 weeks after the radiation is over and he may become fairly sick from it. Of course that occurs during the first cycle of chemo and who knows what that will do to treatment. I was excited about finishing treatment and this break that we have off but when I told the nurse see you in 4 weeks, she said " oh, I will see you sooner....I am sure". That is one of the hard parts about cancer, it never goes away. It dominates every decision and you can't ever seem to forget it, even for a little while.

That said, Josh is happy now. He is feeling better than he has in a while and making plans to go biking with the good weather we are having. We are inviting his friends over this Saturday for a play date and he is really excited about it. I am greatful that radiation is over and we can move forward. Hopefully I can use this break to get the other kids under control and make them feel better. Dorothy has been very angry that I am gone so much and it will be nice to spend time with her. We could really use some good news and a break right now so I am praying that this works out and that Josh can stay healthy for this short time. On my next post I will post the pictures I took on that last day of radiation. They have a ships bell and you can ring it when your treatment is over. I took pictures of all the children standing around Josh as he rang it and that was fun. One thing I am glad of is that even when I am worrried or scared to death, Josh does ok. I work hard to keep that from him and let him be care free and not worried about the future, that is my job not his. Keep praying if you can and we will work hard to have 4 fun weeks. Thanks for all you do.

Mid Week Excitement!

2008-04-03T06:43:00.000-07:00

Things are going a little better with the IV fluids on board. Joshua is eating a little more and much happier. Some of that happiness came from a package that came yesterday. Josh's favorite show is Deal or No Deal and so I called them. I let them know about his situation and they were so sweet! They sent him the game, hats, shirts, and a Howie talking bobble head! Also they sent some hand signed pictures and a very sweet letter. As you can see from the pictures I framed the pictures so he could see them easily.

It is wonderful how many people are good to us. You hear so much about the bad in the world but not enough is said about the many wonderful people who do so much good. It is humbling to see so many people that go out of their way for him. When you have a sick child the days are long and hard and things like this really matter and make a big difference. Thank you to everyone who sends cards and packages. Thank you to all the people praying. We don't get thank you's out to everyone but we appreciate you and your efforts make a difference.

The Days Roll On

2008-03-29T13:10:00.000-07:00

This has been a bad week. Joshua tried to go to church on Easter Sunday and was so weak that he couldn't sit up for class. I had a prompting to check on him and found him about to collapse. I carried him to the couch and the effort made him throw up. However being Josh he did not want to go home and ended up sleeping on the couch in the foyer during church. After that he just kept getting weaker and weaker. He has now lost 12 pounds and has no energy. On Tuesday we went to the clinic for fluids and then on Thursday they decided he needed to be on an IV all the time. They are giving him fluids with a little potassium continually now. It has helped some, he is more alert and has eaten a few bites too. However today his teacher came to give him a test and just that short time wore him out and he is sleeping as I write. We have brought a matteress down to the family room because he wants to be where the family is. That way in the day time he can sleep or relax with everybody there. He sleeps in our room at night so we can help him. The fluids make him have to go in the night and he can't go by himself with all those tubes and the backpack. We set up another bed there. So now Josh has 3 beds and just takes his pick.

I have to offer special thanks to the girls in my church. They came over yesterday and cleaned the house. It takes all our energy to get Josh to appointments and do the basic nessesities around the house. We have been working on a garden in the front yard to plant roses in. I thought it would be great if Josh picked his own bush and then when he is doing his chemo this summer he can watch it bloom. I probably should have been cleaning not working on flowers but we need things to look forward to and get excited about. Also the kids don't get out enough and I see signs of cabin fever! It is good to listen to them yell and see them running up and down. We are truly grateful that we have such good friends to help us during this hard time. We hope all is well with your families. God Bless You

Hair Today, Gone Tomorrow

2008-03-22T14:53:00.000-07:00

Well, it has been a rough week. We started out ok but it went downhill fast. Joshua started to lose his hair on about Tuesday and by today it is all gone but some fuzz. I think he looks fine but he is very depressed about it. He doesn't like looking different and thinks everyone is looking at him. They changed the procedure for his radiation on Thursday and even though the new way is a little easier he didn't want to do it and got really stressed out. Also he is just not eating any more. We have tempted him with everything he likes and wants but he just doesn't want to eat. Everything tastes different and nothing is appetizing. If he eats the equivalent of 1 piece of bread a day it is alot. Also he is very tired and that makes eating a chore. Believe it or not, that is not the bad news. He is losing his speech to some degree. He slurs and you have to ask him to repeat what he is saying sometimes 3 times to figure it out. It is not all the time but alot. The oncologist says she thinks it is a toxicity to the chemo but they will do nothing till more symptoms appear. She says if he gets to the point where he can't feel his fingers they will lower the dosage. The other possiblity is that this is from damage to the brain stem from radiation. Either way, we will have to wait and see if he gets better or worse.

We are doing ok, just sad to see him so down right now. We take hope in the fact that he is at the half way point in the radiation and we will have a break when it is over. He is still fighting and reading his scriptures every day. Gordon read him the part about how "not a hair of his head will be lost in the ressurection" and that it will all be ok. He was able to make and race a car in the pine wood derby and did fairly well! He did all the work himself with just us telling him how so I am very proud of him. I hope you enjoy the pictures of the progression of hair loss, that is Uncle Darrell in the first shot.

Something to cheer about!

2008-03-15T13:55:00.000-07:00

We have big news here! The pups have arrived.
Please notice the little blonde girl on the right of those big boys!

Is that a face to die for?

This is our big pig boys.

This little girl is the reason I have not been sleeping.

Now onto news about Joshua! He has had a great week! We got new medicine and he hasn't thrown up all week! He has a terrible sore throat from the treatment but he is handling it ( and eating a lot of popsicles!) We are working on school work and trying to get into a schedule. I know that things can change quickly but I feel for the first time we are going to handle this. I hope that everyone is doing as great as we are, you are in our prayers.

Updates and Answers

2008-03-09T11:06:00.000-07:00

Ok, things are still rough. Joshua has eaten about one days food all week. However we are at least getting used to it. He carries a bowl for the obvious reason and we just hold him when he is sick. NOW- to respond to all your wonderful suggestions and ideas. Yes, we have elevated his bed on one end, we are working with the doctors on different medicines to help and diets options. No, Ensure is not helpful, he can't keep it down. Everything tastes different now so he doesn't like much. We do have anti nausea medicines and anacides, and mirolax to help him run smooth. One problem we have is that he doesn't like the medicine and so it is a fight to get him to take them which makes everything harder. Yes we are using the best options for meds, disolvable. liquids make him sick and he can't get the pills down.

I want to make sure you know how wonderful he is in the middle of all this suffering. The kids all had an activity at church on Saturday and he was feeling bad. When I was getting the others ready to go with their ride( a wonderful friend that took them) he appeared dressed and ready and announced that he didn't want to miss it. He knew they would be making and eating cookies at the end and he could't have them but he didn't care, he knew it was important for him to go. He paid the price and was exhausted after and got sick last night. This morning he insisted on going to church too. I see him taking time to be kind to his brother and sisters even when he doesn't feel good. I know that I would be very grumpy if I was in his place but he is not.

As always, I am heartbroken for his suffering. It is hard to be so helpless to make things better for him. I would give anything to take this from him but I am learning to follow his example. We take one day at a time and try to get through it. We are so greatful for the many hands that lift us up. The rides for the kids, meals that show up unasked for, kinds words and phone calls. I hope that you will all be blessed now and that you will continue to pray for us. We are going prayer by prayer, blessing by blessing. Thank you.

A Rough Start

2008-03-05T07:13:00.001-08:00

Well, I don't think we could have gotten off to a worse start! Josh had a bad experience on the first day and what we thought would be a 15 minute appointment was 2 hours. They wanted to take a bunch of xrays and spooked him and then we had to fight to get it done. I thought it would be a great reward to give him an icee after (he loves them) To my great saddness, he started throwing up about an hour after treatment and it got so bad we had to go to the emergency room. For 5 hours he threw up every fifteen minutes. It was so bad he couldn't breath when he was sick and finally fell asleep exhausted. They gave him medicine but it didn't make much of a difference, just sleep helped. Yesterday we talked to the doctor and she said his brain is swelling and that if he got sick after treatment again he would be on steroids. He seemed fine after treatment yesterday and had a snack when we got home ( a little one). Of course we gave him anti nausea medicine before treatment to help that. However at 6pm he had fallen asleep and we couldn't get him to wake up. He slept till 2 am and then had a sip of water and fell back asleep. This morning he woke up and wanted breakfast right away. This seemed like a good idea cause he wasn't sick yesterday morning but turned out to be a fatal mistake. He got 2 bites down and was sick immediately. We called the doctor and she confirmed that this means he has swelling in his brain. She said if you sleep laying down you get extra fluid in your brain and with the swelling if you eat before you have sat up for a while the combination of fluid and swelling will cause you to be sick. Gordon ran to the pharmacy and picked up the steroids and we have just taken them. He has been sitting up for a while and seems to be keeping the medicine down( fingers crossed) Hopefully the combination of the anti nausea and steroids will get us through this time but it is rough for Josh.

This is hard for me, I just don't know what I am doing. I seem to be doing everything wrong and he is suffering. No one tells you about all these little potholes so you can avoid them. Also, we had hoped that he would tolerate this treatment well but he seems to be having every possible side effect and that is disheartening. Brain swelling, nausea, and he is exhausted in the first week. ( I do know that the tiredness is from the throwing up and lack of food) I keep telling him it will get better and that we can't stop but I feel like I am lieing to him and torturing him everyday. I am sorry this is not more happy and encouraging but this is all I have today. I hope you are all doing better than us and I am still asking for prayers, we sure need them!!!!

The Battle Begins!

2008-02-28T06:47:00.000-08:00

We are down to the nitty gritty! Josh starts treatment on Monday March 3rd. He will be getting radiation to his entire brain and spine every day, Monday thru Friday. On Thursdays he will get vincristine, a chemo drug. This part of the plan will make his hair fall out and he will be very tired. Also, he could have nausea, vomiting, a sore throat, and have a hard time swallowing or become constipated. He could have severe headaches in the first week, that would put him on steroids. We will just have to see what actually happens. This pattern lasts for 6 weeks and then he gets a 4 week break before we start the next part. They say that most kids sleep for the first 2 weeks after treatment, I mean do nothing but sleep! I will explain the chemo cycles that happen next when we get there but for anyone who just can't wait let me just say he will be hospitalized at least once every cycle.
Now, about Josh. He is doing great! He is healing remarkably well after his surgery, and very upbeat. He loves all the mail he is getting. With not being able to go to school it really makes him feel good to get them. He has even been getting cards from a couple of cats! That has been really fun and he giggles about those. This has definately been the calm before the storm and we have been glad to have the break. We are very blessed that he went into this process healthy, it is making all the difference. I know that we can not escape all the effects of this treatment but hopefully he can do well. We will just have to wait and see and keep praying. Joshua is a strong young man and determined to fight this battle. We were inspired to call him a warrior, it truely fits. We are greatful to have you as troops in this army and I know he leans on your support......Thanks and we will keep you posted! (HAHAHA)

The Weaver

2008-02-24T20:16:00.000-08:00

When my father passed away years ago I was just about to go on a mission for my church. I entered the missionary training center at christmas time and was very low. I (being the silly girl I am) read about the woman who was healed when she touched the hem of Christ's garment and decided that I would be ok if I could touch an apostle. I know that is a stretch but remember I was mourning my father. I did get to meet Elder Neal A. Maxwell and it made all the difference. I wish I had space to tell the whole story but I will just say it was truely healing to my heart to feel his love as we talked that day. Later I wrote to thank him for the time he spent with me and he wrote back. He included a poem that I refer to when I need to understand hard times. I want to share it with you because we have been struggling with all this information this week and the threads of my life are tangled right now. I am trying to let them go and give them to the master weaver. I know he will pick them up and know just what to do. I take hope in this poem and the promise it gives us. I know that we all have trials we just don't understand and this makes it better for me so hopefully it might help you to.

The Weaver

My life is but a weaving, between my God and me.
I do not choose the colors, he worketh steadily.
Oft times he weaveth sorrow, and I in foolish pride,
forget he sees the upper, and I the underside.

Not till the looms are silent, and the shuttles cease to fly.
Will God unroll the canvas and explain the reasons why,
the dark threads are as needful in the skillful weavers hand,
as the threads of gold and silver in the pattern he has planned.

Auther unknown

The gold threads of my life are my husband and children and family and friends. There is so much light in our lives that it stands to reason that he must weave some dark. I pray that we can see each thread as a gift, some are hard to take but bring things that we need, even if we do not see it now. I know that if he holds the threads it will be beautiful when he is done, I just need to be patient a little longer. I hope this brings light to someone today, we think of you always and are so greatful for your blessings and prayers always.

News and a Plan

2008-02-21T20:03:00.000-08:00

Well I am playing catch up tonight. Josh had surgery yesterday to install a port and do a spinal tap. The surgery went well but Josh had a hard time after and was very sick. He is better now and recovering fine. The port is in the middle of his chest and looks good and the tap came back with good news, no cancer cells found. We were glad to have that news when we met with the oncologist today. I asked her for the grading on the tumor and she told us that all Medullablastomas are automaticly graded a 4. They are tough to deal with and have a harsh protocol for treatment. However, she has also told us that the hystology of this tumor is favorable, that is important. Apparently the hystology tells you how aggressive the cells are and Josh's are not overly aggressive. Also, the fact that it has not spread is good news, now we can start treatment. We meet the radiation oncologist on Monday and set up a plan for the next 6 weeks. We have discovered that we no longer have a "doctor", now we have a "team". It is a little overwelming but Josh loves the attention! I am struggling with all the information we are being given. It is more than I can absorb and so much is bad that I get discouraged but then I tell myself that it is all things that can happen but we will have to wait to see what actually does happen. I am glad to have Gordon's Mom here this week, I have been crying on her shoulder as a work through this. We have to mourn the future that may never come and start building a new one for him. He is a wonderful boy and touches everyone around him. The doctors and nurses are very impressed with him and I have to learn to follow his lead. Hopefully there will be no more surgeries for a while and we can just follow the plan and start moving forward. He is struggling to understand why all this is nessesary when he doesn't feel sick. Hopefully we can do the things that will make this as easy as possible for him. Please keep praying for Josh and us, Gordon and I sometimes need more wisdom and understanding than Josh does. We love you all and hope that things are good in your family.

The Future

2008-02-14T22:20:00.000-08:00

We went to the oncology clinic today. Josh had a great time with the toys and games there, he thought it was fun. He doesn't seem to know what is coming and I don't know how to prepare him. I looked into the faces of the children doing treatment. They seem hollow and sad, not one smiled or acknowledged us. On a wall back by the nurses station was a board with the pictures of the hundreds of children who have passed through there. I have never been more sad in my whole life than to see so many children suffering and know that Josh is one of them. Everyone keeps asking what they can do to help, but there is nothing that will fix this.
We do not have an exact date yet but next week he will have surgery to install a port to administer the chemo and a spinal tap to see if the cancer is already spreading. He then gets 2 weeks to get strong and he will start treatment. We will have radiation everyday, Monday thru Friday for 6 full weeks. Once a week during this cycle he gets chemo too. This is the hard part of the treatment. The side affects include what I listing in my last post and more. Deafness or at least hearing loss is a big concern, he will go bald, the treatment will take away his appetite and strength. The doctor says that after the 6 weeks cycle he gets a 2 week break before the next phase. She says that most kids sleep for the whole 2 weeks. After the break he starts heavy chemo. 9 Cycles over time. He will have to stay in the hospital for 1 or 2 nights each round and they run them every 6 weeks.
I worry that you will get sick of me asking for your prayers. It is all that holds us together now. We are so greatful for the people who are sending letters and visiting. Our house is a little crazy but at least it is not too quiet.
On the first day after surgery when Josh couldn't move his head and was so sick he asked Gordon to read to him. He said, "Daddy, read me the Joseph Smith story" For those of you not from our church a long time ago a young boy of 14 asked God which church to join, which was right. That boy had so much faith that God the Father and Jesus Christ appeared to him and told him to join none of them. He became the prophet that restored the church in our day and Joshua has a special love for him. In the hardest of times our sweet boy reaches out to Jesus and the prophets for strength, he seems to know what is important and has as much faith as that boy of 14. It is my prayer that we can have the faith and strength that Joshua shows. I pray that as each of you encounters trials that you will find that faith too. Please know that we care about you and pray for your families to be blessed as you have blessed ours.

Chances

2008-02-09T12:58:00.001-08:00

Ok, it is back to me! Thank you to my wonderful sister-in-laws for the great job of posting till I could get to a computer.
I have very sad news today. We are SO greatful for all the miracles that have and are happening. Josh is recovering from the surgery so much faster than the doctors thought was possible. With that said, we received the pathology last night. Josh has a MEDULLABLASTOMA tumor. Even though I knew this was coming I somehow thought that they would tell me it was benign. I am heartbroken to tell you that this is an aggressive tumor that spreads to the spinal cord quickly. They will do another MRI of his spine tomorrow to see if tumors have begun to form. They will also do a spinal tap to look for cancer cells in the fluid. That is done 2 weeks post-op. If it has not spread we have an 80% chance. To make that happen he will have radiation AND chemotherapy for about 9 months to a year. They will radiate the entire brain and spine for 5 weeks every day. They will also do chemo once a week. He then gets a 2 week break and they start a full protocal of chemo for the next 9 months. He will be bald, his growth could be affected, and he could have substantial memory loss from the treatment. There may be more side affects but we will have an oncology appointment just to talk about that later.
I am sorry to just lay this out but we want everyone to be clear about where we are. I am not losing hope, 80% is a good number. But Josh will be asked to endure more than I would ever put on a child. Please, we need you. Keep praying, I am convinced that your prayers made all the difference in this surgery. Look how fast he is recovering! Also, I can see that he has begun to feel isolated and sad. Call him if you have time. Write him letters about your families if you are far away. Don't talk about the cancer- just about him and you and the normal things going on.
I would give my life to take this from him but I can not. My child is no longer just mine, he is becoming all of ours as we love him and pray for him and care for him. Gordon and I love him but he needs more than just us now. I know that Heavenly Father loves Josh, and Jesus Christ stands at his side. Thank you for standing beside us too. Thank you for loving him like we do. Mostly, thank you for making us strong enough to walk down this path we have been placed on.

PS. We will get out of the hospital tomorrow or Monday at the latest. We are just waiting on that MRI.

Let's Decorate Josh's Room

2008-02-07T06:03:00.000-08:00

The doctors are doing an MRI today and then hopefully Josh will be moved out of ICU into his own room. He is having a hard time sleeping at night and gets frustrated that he can't sit up. The new floor will be cheerier and staff can come play games with him, so this will be a good move.

Several people have inquired again as to what they can do. It would be helpful for Josh to start recieving mail that he can paste around his room. Any drawing, pictures, letters would be so appreciated. Please send any mail to the home address and it will get taken to the hospital.

The family again thanks everyone for your continued concern and support.

Post-op Day 2

2008-02-06T15:32:00.000-08:00

Last night was a really long and hard night for Josh. He's very nauseus due to the roughed up nerves and hasn't been able to keep anything down. But things are looking up today. He asked for a popsicle and really enjoyed it!
We are hopeful this is a sign of good things to come and grateful for everyone's support.

We are still in intensive care and will be probably for another day or 2 because the tumor was so large. But the doctors say he is recovering from surgery very well--much better than they had expected.

We still don't know the type of tumor--not till at least Monday.

We love you all. Thank you so much for all of your love and support!

Miracles DO happen!

2008-02-05T19:37:00.000-08:00

Here is an overview of today's surgery:

Surgery went really well.

Josh is in the ICU overnight for observation.

90-95% of tumor gone.

The pathology report will back in a week regarding the type of tumor and further treatment.

Josh is awake and talking, tube is out, off ventilator, he was asking for a popsicle and the doctor finally gave in and gave him one. He insisted on having both "sticks"! (He is feeling no pain and is heavily medicated)

No sign of paralysis on his face.

The doctor said he roughed up the nerves a lot but none were destroyed.

He has a little trouble moving his head because they cut the muscle, but they will work with him.

The next 48 hours are critical as doctors watch for brain swelling, infection and any other complications.

The family is very grateful for all the fasting, praying and thoughts in Joshua's behalf.

Tomorrow's Miracle

2008-02-04T18:54:00.000-08:00

Well, tomorrow is the big day. I want to thank all the people who are praying with us and let you know that we are overwelmed with support. We have people from Maryland, and Florida and Texas all the way to Arizona and Utah and back to New York praying for our special boy tonight and tomorrow. It makes me small to feel know that one child can unite people all around the country. I am humbled to be the parent of this special spirit and know that so many people love him. Please know that we love you and will be forever grateful for your support.
Now on to logistics.......tomorrow we go to the hospital at 10am. Surgery will be at 12:00 and will last 3-6 hours. After surgery we will call my sister Celia who has come to help with the children and she will make a post with whatever information we have. We will have the full information about 1 week after the surgery from the pathology of the tumor. After tomorrow we will be in the ICU for a day or two. Once we are on the floor he can have visitors. This is limited: no one in diapers can come, you must be healthy and can't have been hanging around someone else who is sick. I will make a post each day telling everyone if he is up to visits and will have a number for you to call to make sure we have not been swamped. Luckily the hospital has computers for mom's like me. Please be patient, I have to wait to see what every day brings to know where we are.
I want everyone to know that we feel the hand of a loving Heavenly Father as we approach tomorrow and each day. I know that he is mindful of our struggles and has a plan for Joshua. We are grateful for the chance to be Joshua's parents and we are learning from him and this experience. Tomorrow will bring miracles and blessing and our job is to find and see them.

The Quiltmaker's Gift

2008-01-23T07:04:00.000-08:00

This post may seem long but I would like to read a letter we just recieved and then show some pictures. We are overwelmed by all the support we have been given but this was beyond expression.

Dear Joshua,
On Christmas day all our family gathered at our home to celebrate. We had a lovely day. After dinner was finished and all the presents were opened, we gathered in our livingroom to listen to some of our grandchildren play the Christmas songs they had learned on the piano and viola. Afterwards we talked about you and that you needed to go to the hospital for surgery. We knelt in family prayer and asked our Heavenly Father to bless you, and felt a genuine peace and assurance that our prayer would be answered.
The next day we thought, "We know the Lord will bless Josh, but what can we do? We live so far away." Logan, or grandson, asked me to read one of his favorite stories to him - The Quiltmaker's Gift. It's a wonderful story about an old woman who lives in the mountains. She makes quilts and gives them to people who need them. That is when I got the idea to make you a quilt. Several of us went to the quilt store. We looked and looked until we found the fabrics that we thought would be perfect for your quilt.
Quilts are like people - they come in all colors, sizes, and shapes. Your quilt is one of a kind. There isn't another one like it in the whole world. It is unique, special, and valuable - just like you! Another name for a quilt is a comforter. The Holy Ghost is also called the Comforter because it is part of his job to be with us and bring us comfort.
Inspirational music has the power to give us courage and bring a spirit of peace. The Primary Hymns are some of our favorites and so we have made a CD for you to listen to when you are resting or anytime you want to invite the Spirit of the Lord to be your companion.
We hope your quilt and the music will bring you comfort and remind you of how much you are loved - by your family, Heavenly Father, Jesus, the Holy Ghost, and so many other people. Each stitch is a hug and a prayer just for you. So wrap yourself up, feel cozy, and know that all will be well.

Songs From The Heart

2008-01-13T09:54:00.000-08:00

Another week down! I am excited that I learned how to put music on the blog. I picked songs Josh likes but then I found the lead song. Joshua has the movie Prince of Egypt and loves it so this was the perfect one to start out with. I want everyone to know that we are seeing miracles everyday and we are hopeful. I am overwelmed with all the people who love Josh and our family. It is true that Heavenly Father works through us.
There is nothing new on the medical front but we are getting ready for the hospital. We have chosen videos and books that he might like (yes because I am no longer able to say no to him I did get him the 5th Harry Potter movie). For me and my mom who is coming to sit with me during the day time I got a selection of cool yarn and a set of knitting circles to make hats and scarves with. If we go crazy then every nurse will get a hat or scarf! I am not taking to much more cause I just don't know what he will be up to doing.
We are enjoying this quiet time before the storm and can't wait for Gordon to join us. His family gave him a wonderful birthday gift and he is coming home for the weekend this coming week! That means he will only go back for about 10 days and then be home for good!!!! Everything will be easier with him at home.... Thanks again for everthing and everyone. A special thanks to my special angel Sherrie Mcdonald. She was a miracle for me this week - just when I needed one.

Questions Answered While We All Wait

2008-01-07T06:40:00.000-08:00

Well, it is monday morning and the boys went off to school. I told Josh he has 1 month to really focus and I hope he will. It makes me sad to see how this is changing him. He is much more timid. Being sick takes away your innocence and that feeling of invincability that children naturally have. Going out to the car he slipped on the ice. He was just standing there and didn't get hurt but it really scared him and I had to hold him for a while to calm him down. He told me he wasn't going to go out for recess today because of it. I hope the teacher can talk him into it.........Some people have asked questions and I want to make sure I try to answer them. First off, the surgery will be here in Nebraska at Children's Hospital. I do not know how long before I will be able to make a post afterwards, it will depend on how he does. I may have Gordon or my sister do it. I plan to stay at the hospital with Josh the whole time. I have been talking to the other children and they understand that I won't be home till Josh comes with me. It helps that Rachel had RSV as a baby and I stayed with her then. They just understand that mom doesn't leave the sick one. Also, please remember that the final diagnosis may not come for a full week after surgery so if we don't have much information you will just have to wait with us.
It is very hard to wait for the surgery but also I wish the day would never come. At least right now I can pretend that this is not real, after surgery it will be all too real. I think that the boy scouts may get together and get their hair cut short with shaved sides to support Josh before the surgery. I had planned to cut Josh's high and shaved some kind of design on the sides to make it fun for him. They will cut behind his ear so we only need to shave the sides. I hope the scouts can get that put together, that would be really fun. As always, we are sooooooooooo greatful for the support that you show. Your prays and comments and helping hands make the days easier and we try to have fun where we can. Thank you

Something Old Something New - I am Blue

2007-12-28T07:46:00.000-08:00

Well the surgery date changed. The good news is that this is for sure - we have an operating room booked. The bad news is that the date is Febuary 5th. I hate waiting so long but that is the first opening available. We have to be at the hospital at 10am and the surgery is at noon. I hate waiting so long but it is what it is. This also means that Gordon is going back to Arizona on the 3rd and staying till the 31st so he can finish one more class. When he comes home he will have 2 classes and a paper left to do. It is good he can get it done but I am pretty bummed out. My hopes of only 2 more weeks has now turned into 5. It seems like everything is out of my hands, I am just along for the ride. I worry about Joshua and Gordon but there is nothing I can do, just wait for things to happen. OK- I am done feeling sorry for myself- we can move on. Lots of people have asked what they can do and several have offered to come out. I am now making a schedule for the weeks of the hospital stay and after. If you are one of those offering please let me know and I will schedule you. I expect to be at the hospital for about 10 days but my mom and sisters will be here for that time. We really appreciate all the support, I just don't know how we would be getting through this without it. Josh is doing well, and while I watch him like a hawk, I try not to let him notice. He is happy and I will have to follow his lead.

In a few days the new year will be here. I am hopeful and praying for a great year to come and praying that yours is good too. God Bless you

All I Want For Christmas Is -- Surgery?

2007-12-24T23:19:00.001-08:00

Ok, we met with the doctor today and it was very good. He answered our questions and we feel good about letting him do the surgery. We will confirm it on Wednesday but it looks like surgery will be on Tuesday January 29th. The doctor is hopeful that we are looking at a low grade tumor. What that means is that all tumors are rated 1-4 and a 1 is the best you can get. If it is a 1 and they can get most of it out he stands a good chance. If it is a 2 his chances will depend on how much they can remove. A 3 or 4 gives a very bad outlook. On the day of surgery they will send a sample to the lab and the lab will give there "opinion" about the tumor type. A full diagnosis with grading of the tumor will take a week from the date of surgery. After surgery Josh will be in the ICU for a day or two. The biggest concern at that point will be if he can swallow and breath on his own. The tumor is located right at the 9-12 cranial nerves and they control that function. If they are disturbed they may swell and he would lose function till they returned to normal. If that happened they would have to keep him intubated until function returned. After they have him stablized he will move from ICU to the floor and stay in the hospital for another 5-7 days. Once he is stable they will do another MRI to see if any tumor was missed or left behind. SO-- now we wait for surgery, then we wait for another week to get the grade. We are asking that everybody pray for surgery to go well and for a grade 1. We are also just trying to spend as much happy time as possible. So many people have been good to us, gifts and cards and calls and prayers. Please keep praying and I will keep you posted on anything that happens. Merry Christmas

The Warrior

2007-12-17T21:33:00.000-08:00

Everyone keeps asking how Josh is taking all this. I thought I would update everyone on his progress. I am proud to say he is just Josh, takes everything in stride. We talked about what he might be worried about. I answered his questions and we talked a little about dying. I told him he is a warrior. Only special children get chosen for these trials. We told him that Jesus Christ stands beside him and that it doesn't matter what happens. If he lives he will touch many lives with his spirit and if something happens to him it is because he has another mission. He let me read his journal later and he wrote that he was "freaked out" but now he is ok with it. He likes knowing that this is not random and that there is a plan. Also, when you are 8 being a "warrior" is cool! Gordon and I are of course having a harder time with this all but we do feel that we are being guided and knowing that this is Heavenly Fathers will does make it a little easier to accept. Our families are making a huge difference with their support. It is overwelming how many people care about Josh and our family. We meet with the doctor on christmas eve and will set the date for surgery then. For now we are just trying to make everything normal. Josh is in school and doing homework. Thanks for all you have done you make a difference with your calls and prayers........

Cancer

2007-12-13T21:30:00.000-08:00

We are back from Texas and not with good news. The doctors there confirmed what Dr. Treves suspected, this is an Ependymoma. The tumor is lying on the floor of the fourth ventrical of the brain stem. It is below the 7th and 8th nerve. That pretty much rules out the shwannoma and makes the Ependymoma the answer. What this means is that it is now critical to get it out. However we will not be able to remove it all due to the fact that it is attached to the brain stem. So,,,,,,,,,after the surgery we will have chemo and possibly radiation. The hard news to tell you is that this is the tumor that carries the highest rate of regrowth in children. I do not have a lot of information about the chemo, I will have to meet an oncologist to find out more. We do know more about the surgery. It will take at least 6 hours and then 24 to 48 in the ICU to see if he can breath on his own. After that he will be in the hospital for about 7 days to rehabilitate. The surgery will leave him dizzy and unbalanced and he will have to learn to walk and stand again. If all goes well that will go away and then when he is home we can start the chemotherapy. I want to tell you that we are still hopeful but I want you to understand how serious this has become. We will go day by day, procedure by procedure and blessing by blessing from now on. Thanks for all you do. We will be adding more posts as we get schedules and information...........Your prayers are our greatest strength.......

Aunt Collette's Wedding

2007-12-13T18:30:00.000-08:00

Some great pics from Aunt Collette's wedding.

Are We There Yet?

2007-12-07T12:25:00.000-08:00

We are counting down the hours to Texas. I am very hopeful they will have answers there. Things get more confusing here every day. We still do not know if insurance will cover the visit there yet. Also, we are not sure about the doctors here. Dr. Treves told me he looked at the films everyday for a week and told me we needed to get a new MRI with contrast dye before the trip, he felt it would help the doctors make the diagnosis. Then we had problems getting it scheduled here, Children's said they couldn't do it before we left. After 2 days of phone calls trying to figure it out Dr. Treves office called to say the contrast was done on the original MRI. I guess a week of looking at the films wasn't enough time to notice it was there. I don't know how this affects Dr. Treves diagnosis I only heard from a nurse. I really want answers. At first we thought that Josh had no symptoms but everyday I find out that there are more symptoms. He has headaches, and balance issues, and yesterday I saw him sitting with his left leg jumping and he was hitting it and I thought he was joking around but apparently it does that and the only way he can get it to stop is to hit it. He thought that was normal and never thought to tell me about it. I just don't know how many more surprises I can take. I am getting further and further behind on my everyday chores, I just can't concentrate on them. Luckly I was a good mom and taught my little ones to fold laundry and put away toys. They are clean and dressed and we are not tripping on too many toys. The rest just doesn't matter right now. It has begun to snow here and we had 4 inches yesterday. I am glad that even though this is rough for me all the children wanted was to roll in the snow and throw it at the beagles. They are happy and enjoying the season. I have been putting decorations up in every corner to make sure they have a good time. We will have to see what next week brings but I am hoping for my christmas gift early..............Thanks for all you do.

Here atoma, There atoma

2007-12-03T20:39:00.000-08:00

First I want to say thank you to everyone who has prayed and fasted on Joshua's behalf! We have felt that love and promise and are so greatful for the support. Today we were busy, we started with the Orthopedic doctor and she wants him to wear braces. It can take several weeks to get them because they must be hand made in a prothetics lab and just the measuring can be a wait but when I called for the appointment they told me someone had just called to cancel and they had us come right over. They will still take two weeks to get but that is better than a month. We are now working with our primary care physician to try and navigate the maze of insurance and get everything covered as we move forward. Finally we talked to Dr. Treves tonight. He says that he has been looking at the tumor and even went over to the hospital to view the original films. He has presented it to 5 doctors and they have compiled a list of 4 top picks for what this is. It could be a Shwannoma, a Ependymoma, a heymartoma(I couldn't get that spelled right), or a Meningioma. It could also be neurophytonoma(again with the spelling) or a Oligodendroglioma. Dr. Treves is on board with our trip to Texas and has ordered another MRI before we go. This one will be with contrast dye and very important. He says that how much dye the tumor takes on will help make the decision on how soon it has to come out and which atoma it really is. He said that he knew they would want it so lets get it done. We are also waiting on the bladder study on the 11th to decide about the spinal surgery. Sooooooo by the time we get home from Texas we are hoping to have a plan. If the tumor needs to wait we will try to do the spinal surgery over christmas. Other wise the tumor will come first but we need to know which atoma it is to decide when. Ok, to recap we have an MRI with contrast this week, a bladder study on the 11th, and head to Texas on the 12th for an appointment on the 13th. We will be home that night and try to get a post in right away. I would like to tell you how I feel about all this but I am numb. The maze of doctors, insurance rules, and words I can't even pronounce is overwelming. We are excited that in 10 days we might see some light at the end of this tunnel. But we are most excited about you. Your support and love helps everyday.........Thank you.................

Do You Hear What I Hear?

2007-11-29T18:50:00.000-08:00

Well there is lots to say tonight. Let me focus on the medical news and then we will talk about the rest. We went for a test today on balance and hearing. The good news...He can hear fine. The bad news....He has 33%vestibular weakness on the left. He also has balance dysfunction under most sensory conditions. Who wants to hear that in English? That means he has a tumor. Actually what it means is that he does have symptoms from his tumor. What is making this so hard is that he is so young he is actually adjusting to all these problems and we are not seeing them. He has significant balance loss and eyes problems and while his hearing is good the hearing nerve is affected.
What affect this will have on our treatment is unsure. In the mean time we decided to start looking for answers. We asked Dr. Treves where to look and then did our research and ended up at Texas Childrens Hospital. We have sent the films and all the doctors reports there and we will hear soon what they think. If they know what this tumor is we will have to go to Texas. I can't believe I just said that. Every thing is so unreal now. You see movies or hear stories of families that go through this and when it is happening to you it is like you are watching the movie again. I feel like I am in the eye of a hurricane. It is calm and quiet now but raging all around us. Please pray that the doctors can find the right answers. Pray that we will know what to do and where to go. We need to be led so that when we enter the storm we will not be swept away. I hear what the doctors have said, I wait to hear what they will say, but mostly I hear what they do not say. Today we got more information that may be speaking to us as well. We appreciate your prayers and thoughts and we wait to hear good news.

New News?

2007-11-26T14:22:00.000-08:00

Ok, they say no new news is good news but I am not sure about that. We met the Neuro-surgeon today and don't have much new to say. He is not sure what the mass in his brain is. He said it could be several kinds of tumors or even a malformation of his brain (that is a small possibility). He wants to meet with a group of doctors and have everyone review it for their opinions. He said that will take a week to 10 days and he will call us. He feels that because Josh doesn't have symtoms that we can wait and gather more information to make our decision with. The surgery will be risky, there is the possiblity of facial paralasys, deafness, and motor or balance loss. The tumor is in the left side of his cerabellum but up against his brain stem which is on the inside so they will have to pass through the nerves to reach it.
Before you say it, the fact that he is checking with other doctors is good, and I am glad he doesn't have symtoms. That doesn't make me feel any better. I want someone to say, "oh, I have seen this...This will fix it" not "boy is this unusual, I will have to see". I am not good at waiting and this is the worse. Every time he bumps into a table or the wall, everytime he doesn't feel good I wonder. I don't want to wait till this thing presses on his brain stem and he can't breath or it squeezes a nerve and he goes deaf to figure it out. This is my baby and I want him whole and well.
Now that I have the whining out of the way, let me continue. The spinal surgery is a little more routine. While it is still delicate he does this one at least once a month. We are going to try to get this out of the way over christmas. We need a bladder study done first and we have to see if it can all be scheduled. But if we can do it over the holidays that would be the best because Gordon will be home. Also, if we get more information about the tumor and need to proceed quickly this will not be hanging over us complicating things. He will still need physical therapy and probably braces to retrain his muscles but at least we will be moving forward and by his birthday he will be walking normally. We will know more about the definate date in about a week (sound familiar).
Well, I have not said much you didn't already know but you do know as much as I do........Thanks for all the prayers and offers of help. Keep praying and we will wait for news. The one thing I know for sure is that we are blessed to have all of you on our side and helping out. Thanks for all you do........Ruth

Blessings

2007-11-22T08:56:00.000-08:00

Ok, this one is to finish catching up! There is no new news but I want to add a few things. First it doesn't matter if everything is going to be ok, the world will never be the same and for today I am devestated. How could this happen to my sweet boy? Why would my child have to endure all this. I will never believe that everything will be alright again, I know that bad things do happen and we can't go through our lives thinking it happens to other people. It is hard to accept that we have no control and just have to wait and see.
Now that I have said that, I want to answer my own question. God has a plan, I do not understand it and may not even like it today, but it is his plan and I have to accept it. I also have to let go of what I can't change and see the blessings. I can not explain how much it means to talk to a friend now or know that people are praying for us. I have a testimony that Heavenly Father loves us. When we lost our little girl Micah I thought the world stopped but it didn't. And in the 10 years since our lives have unfolded in a miraculous way. We have been brought here to Nebraska for Joshua, and we were led to buy a house with the most incredible neighbors. We have wonderful friends and church support. The children go to a great school with good teachers and staff to help. I could not endure this without that and Heavenly Father knew it. He can't change what has to happen but he never leaves us and always finds a way to support us as it unfolds. Our trials are big but our blessings are bigger...Thank you all for being instruments in his hands and being the life line in our lives.................

Monday

2007-11-22T06:19:00.000-08:00

The weekend was surreal, it was so wonderful to have Gordon home but again I feel like I am standing still. I was nervous about going to church. I just didn't know how it would be, part of me has to keep telling people, it makes it real and I am more able to accept it. But I didn't know if I was going to keep it together either. We told Josh yesterday cause we didn't know if we would be able to keep it from him and wanted to be able to answer his questions. He was Joshua to a T! We told him about the tethered cords and he was excited that the fix would be permanent and he would walk normally. Then we said they found something in his brain. He looked at us jokingly and said "is it a tumor". I said yes it was and he was shocked. He said" I was just kidding" and I said "well, I am not" He asked if it was cancer and we told him we don't know but don't think so and then he was fine with it. We emphasized that we feel strongly that Heavenly Father brought us to Nebraska so we could find this tumor and fix it and that we are being very blessed, he is healthy and strong and it will all be ok. After that he went off to play and didn't seem the least worried. At church he asked if he could tell his class his "news". He then told them he had tethered cords and a tumor in his brain. They were shocked but didn't say much. I had to call all the moms that night and apoligize for not warning them so they could talk to their kids. I never thought he would just tell everyone, he is definately my son! Everyone is very supportive and offering to help. We will be ok,,,,,I hope. Today I am working on calling all of his old doctors and getting medical records so we will have more information. At least I am doing something. Just waiting for the next appointment is terrible. I did go to the school this morning and tell his teacher and the counselor. They are going to talk to his class, a little girl just passed away from brain cancer and they don't want any other children to be frightened.
I am getting there but this this still behind, this is from Monday the 19th of November........

Waiting

2007-11-22T05:53:00.000-08:00

I waited until noon today for the phone to ring. I woke up crying and could not stop for almost an hour. I am so frightened, I don't know anything and I am so afraid of losing my little one. Gordon isn't home yet and this is more than I can take. Finally I called the doctors office and found out he is in his car on the way out of town. I begged them to have someone call, I can't wait until Monday or after Thanksgiving. It is like a weight on my chest and I can't breath. They called him and he said he would call later in the day so I am still waiting.
Now Gordon has called and his plane is delayed, more waiting. I got off the phone and cryed again, what if he can't get here? I know that is silly but I am really freaked out.
Ok, Gordon is on the plane and the doctor called. I had a hard time hearing him, the phone kept cutting out but we got through the conversation. Basicly I don't know much more now than before! He has a tumor in his Cerabellum, that is in the back of his brain and a small area. In a child his size the area is about 5-6 centimeters and the tumor is 3 centimeters. The doctor is shocked at the size and can not believe he does not have symtoms. He kept asking if he was deaf or at least on the left side. He thought that by now he should be falling down or running into things. The tumor does not appear cancerous but he would not say for sure because it is so large. The radiologist had labeled it a Schwannoma but the doctor said that is wrong, it is too big and you don't see them in children Josh's age. We will just have to wait till it comes out to see what it is. We are meeting him on the 26 and then we will have some answers, I hope. All I know for sure is he has to have brain surgery and spinal surgery for his tethered cords. I don't really know anything about that one, just that the problem can affect his bladder and must be corrected. Well, this was long but that is how the day feels. Gordon is in the sky and Josh has Pack meeting (cub scouts) and I can't think of what I should be doing. Our wonderful friends are already stepping up and Sister Call is bringing dinner.
This actually occured on Friday the 16th of November. Still catching up....................