Gwyneth Larson's Journal
Maybe a Small hill
Written Mar 8, 2013 1:20pmGwynn got out of the hospital last Wednesday after receiving another infusion on Tuesday, we went home to "wait it out" to see if she would feel better. She continued to complain about back pain and we saw Dr. Otto on Friday to make sure her infection had resolved(it had), Monday she woke up at 4:30am in incredible pain. I gave her some pain medication and she tried to go back to sleep. She did finally but woke up crying about an hour later and we couldn't get her comfortable. Monday afternoon we came back to the hospital and she was admitted. Her liver enzymes were high and so was her CRP indicating some type of inflammation, they think probably a virus. Her liver enzymes are now coming down and so is her CRP. She is still having incredible pain in her back and is pretty miserable. She is also really frustrated because although we have ruled many things out we haven't found the source of the pain. There are several possibilities. One is that it is related to her vasculitis. The next is that there is some type of change to her vertebrate similar to the changes in her elbows and femur(avascular necrosis), The CT didn't show anything obvious but the radiologist discussed with the hospitalist and if the pain continues they think we should get an MRI to look at the bones. They said her bones look less dense on CT according to the radiologist then they should. The other possibility which is my LEAST favorite right now, is that the Orencia may be causing the symptoms, apparently back pain and headache are both listed as possible causes. I really hope that is not the case because this medication has been such a miracle for her. Other than the last couple weeks she has been doing so well and it scares me to think what will happen if we loose this medication. She can't handle steroids anymore. They have destroyed her body and I am really afraid about the effects that any further steroid use will have given all the avascular necrosis she has had, and other scary side effects. We are going home today without a magic answer, I am getting used to it but it is seriously frustrating. I know that medicine is not as magical as I used to think it was and a lot of times it is a process...unfortunately a process that doesn't do any favors to the patient. It makes me crazy to see Gwynn in so much pain and not be able to do anything to help her. I know that sometimes it takes time for the issue to declare itself enough for the doctors to find the right issue.As if the last couple weeks haven't been rough enough I took little Kilian into urgent care this morning for high fever etc and he has influenza so we are starting both Gwynn and Kilian on tamiflu...her preventatively because she would probably not handle it to well with everything she is going through right now. Kilian looks terrible. I am excited to not have to have one in the hospital and one terribly sick and home and have to choose who to be with. Hoping for a quiet weekend at the Larson Household. Guess I probably shouldn't hold my breath.~Sarah~
Bump in the Road
Written Feb 26, 2013 11:00amWell we have hit a bump in the road. Gwynn has been ill for a couple of weeks and after it failed to resolve she was admitted to the hospital last Wednesday, we are still here. On Friday she had a scope to take biopsies of her GI Tract to see if her disease is active. The results came back yesterday and they found some eosinophils indicating some disease activity. Her Eosinophil count is also somewhat more elevated than it has been since she went into remission.Dr. Laplant has advised that we can increase the frequency of her treatments to see if that will calm the activity down and put her back into remission. I have faith as well as she has done on this medication that it will work. Today after an MRI she will receive another infusion to see if that helps to put her disease back in a remission. I have faith this is just a bump in the road on the way to a healthy Gwynn. Please keep her in your prayers that she is out of pain and back at school soon.~Sarah~
NO NEWS IS GOOD NEWS!
Written Jan 28, 2013 9:58pmI can't believe it has been so long since I updated. Gwynn is doing SO WELL! I can't believe how blessed we are! The Orencia is keeping her disease in remission!! She has had a rough run of nasty viruses but seems like everyone is this year. She had a check up on her arm in December and the doc said it showed some improvement(she has avascular necrosis from all the steroids/chemo in a couple different bones) so she is super excited and hoping to get back to some more activity. She still needs an ok by her leg doctor. One thing hasn't changed, still tons of different doctors but we get to see them a whole lot less!Last week Gwynn went to Deep Portage with her class on a couple day field trip. She had a blast. I hear from some parents that chaperoned that it was pretty physically intense and I can't believe that she had no problem considering that last year at this time she needed a wheelchair to be moved around Walt Disney World and a couple months ago she was in a wheelchair because she had avascular necrosis in her femur and literally couldn't walk! We still have a long way to go but the side effects of the steroids are finally starting to subside and Gwynn is getting healthier all the time! Last year we spoke to a doctor almost daily and spent more time at doctors offices or the hospital then we did at home it seems. This year I am updating Dr. Bies(Dr. Otto) at well baby check ups:) GOD IS SO GOOD! Gwynn is so strong and we are so blessed!Gwynn was in the chorus of the fall musical The Music Man and had a blast. She is doing well in school and is so happy to be back to the norm!Everyone else is doing well! Kilian is four months old now and growing like a weed! Brooke is going to be three next week but she is 3 going on 9...such personality! Aiden is wrestling and enjoying boy scouts.Thanks for checking in on us!Gwynn worked on the project above for Make-A-Wish! The organization paired local artists with Wish kids like Gwynn to collaborate on an art project. The artist Gwynn worked with was fabulous and I love how her painting turned out. Gwynn actually did a small amount of painting and of course left her signature in the bottom right hand corner. The dog is our Great Dane Marley and the beach scene/dolphin is in honor of Gwynn's wish. The art projects will be auctioned off at this years Wish ball, we will attend to help auction the piece. Gwynn is super excited!Someone at Make-A-Wish once said they wish Gwynn had been well when we took our trip but I know that the wish came at the perfect time. It lifted her spirit and renewed her energy to continue a fight that seemed endless! That trip was an amazing gift and the timing couldn't have been better.Make-A-Wish is such an amazing organization and we are so happy to be a part of the Wish Family! The artists blog link is below. Check her out she is great!Believe!!! All things are possible, if you believe! Mark 9:23