Friday, December 26, 2008

Merry Christmas

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.

Monday, December 22, 2008

Home For Christmas

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 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.

Thursday, December 18, 2008

Just A Quick Note and Farm Update

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.

Monday, December 8, 2008

Car Metaphors

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.

Thursday, December 4, 2008

Test Results

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.

Monday, December 1, 2008

Thanksgiving with Grandma and Grandpa

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!

Monday, November 24, 2008

Hospital, Hard Times, Happy Thanksgiving

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.

Wednesday, November 19, 2008

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.

Wednesday, November 12, 2008

Pretty Good News and Ponds

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.

Wednesday, November 5, 2008

Surprises, Statistics, and Smiles

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.

Friday, October 31, 2008

Halloween Fun!

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!

Wednesday, October 29, 2008

Just a Litte Whine with That

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.

Sunday, October 26, 2008

Chores, Costumes, and Counts

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.

Wednesday, October 15, 2008

Midnight, Miserable, and Maryland

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.

Thursday, October 9, 2008

Ups and Downs

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!

Thursday, October 2, 2008

School, School, and School

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.

Tuesday, September 23, 2008

Fears, Fences, and Frogs

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.

Sunday, September 14, 2008

Hurricane Ike

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!

Friday, September 12, 2008

Weather, Watching, Worries

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.

Thursday, September 4, 2008

Stitches, Super Powers, and Sweet Memories

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.

Monday, September 1, 2008

In Memorandum

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

Thursday, August 28, 2008

Hospitals, Hopes, and Brewhahas

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.

Wednesday, August 20, 2008

Cats, Cops, and Critical Care

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.

Monday, August 18, 2008

Still Waiting

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)

Saturday, August 2, 2008

Catch Us If You Can

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.

Saturday, July 19, 2008

Summer Fun

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!

Tuesday, July 15, 2008

Camp and Packing

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............

Sunday, July 6, 2008

I Am Not Sure What to Call This!

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...............

Thursday, July 3, 2008

Caught by Surprise!

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.

Sunday, June 15, 2008

Tornados and Houston?

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.

Wednesday, June 4, 2008

Summer Fun

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...........)

Sunday, May 25, 2008

Wolves and Accidents

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)

Sunday, May 18, 2008

Progress and Graduation

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.

Saturday, May 10, 2008

Round One

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.

Sunday, May 4, 2008

This Is A Long One!

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.

Tuesday, April 22, 2008

Promised Pictures

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!

Tuesday, April 15, 2008

Count Down

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.

Thursday, April 3, 2008

Mid Week Excitement!

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.

Saturday, March 29, 2008

The Days Roll On

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

Saturday, March 22, 2008

Hair Today, Gone Tomorrow

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.