Changes from the Ground Up

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

Updates

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

Things are getting Complicated

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.