Things are getting Complicated

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

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

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!

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

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

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

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.