Hello and sorry it has been so long since I have updated you all. Annabelle had a doctor's appointment last Friday with her pediatric neurologist Dr. Lo. He is following Dr. Pranzetelli's protocol for treating OMS. Dr. Pranzetelli is a neurologist and the leading (there aren't many) researcher in the field of Opsoclonus-Myoclonus Syndrome and is located in Springfield, IL. Dr. P is the one who diagnosed Annabelle in early February. Anyway, Dr. Lo had not seen Annabelle since before she started treatment. He was very pleased to see her progress and admitted that he was uncertain about putting her through this treatment because his one other patient that he sent to Dr. P didn't show much improvement. Then he said, "She is lucky. Let's keep our fingers crossed." But we know that most doctors don't have much experience with OMS and each case is different depending on how severe it is and how soon and what type of treatment was prescribed. We are hopeful and trust God for whatever he has for us. We are just trying to enjoy each day and take none for granted. That being said, Annabelle had a great week last week with a slight improvement in the last 5 % of symptoms. It is very hard to "measure" improvement, but we think we see a bit of improvement. Please keep praying (not crossing fingers)! There is no luck - only providence.
As for the rest of us -
Peter is doing well at the helm. He helps keep the boat afloat with God's help and throws me a life preserver when needed. I've had a couple of those "I'm sinking" moments over the last couple of weeks. I found a Yahoo group for parents who have children with OMS. I was excited to read all the information I could and ask questions of families who have gone or are going through the trial of OMS. That took a toll on me spiritually and emotionally, as I felt like I entered into each families' traumatic situation and sympathized with them. I also found myself starting to WORRY that all that I was reading about might happen to Annabelle. Spending a lot of time on the Yahoo group also ate into my time for other things like posting on my blog! So, at the urging of the captain, I stepped back from reading and interacting as much as I was, and am doing better.
The other three girls are doing well handling the isolation. Olivia and I ran out to a store for an errand for the first time since before we started treatment (Feb. 11). She was thrilled to get out a bit. Now that we are through flu season, we will try getting out a little bit here and there with caution. We are ever reminded that any illness is a potential setback in her progress. Also, Annabelle was not vaccinated for chicken pox. This kind of illness is potentially deadly to her in her current immune-suppressed state. Please continue to pray for protection from illness - for all of us.
Annabelle has another IVIG infusion this Wednesday. Last month was the first time we were in the infusion clinic for the infusion. It went much faster than when we were in the hospital. This is because the Dr. Lo didn't think it was necessary to follow Dr. P's protocol for administering the IVIG. So, I sent an email to Dr. P asking if it is alright to go by the pharmacy's book for infusing IVIG, or do we need to do it his way. He didn't give much room to change it. So, we are caught in a little struggle between doctors. Please pray that what we suggested to Dr. Lo last week will happen on Wednesday. This infusion will be approx. 7 hours. I covet your prayers during this time. There are so many little things that can give us trouble - like problems with her port clogging up with blood during the blood draw before the infusion, or her IV line getting caught on the chair and pulling it out of her port.
Please pray:
- that Dr. Lo will follow Dr. P's protocol for giving the IVIG
- that Annabelle will not have any allergic reactions to the IVIG (antibodies from 20,000 - 60,000 different people) The last time she had a terrible headache two days later.
- for no complications with her port.
- that we might be able to get one of the two rooms.
- for protection from illness.
- that we would face each day's trials with joy. (That is hard for me!! I want to do better.)
Thanks for reading this very long post and for praying.
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Noelle
I just heard about Annabelle's illness yesterday. My mom talked to your mom, and she passed it on to me. I even called Kathy to get more information (she was packing for FL like a crazy lady!).
It sounds like your family has been turned upside down. I skimmed through your blog to get some background. I have a very close friend whose 21/2 yr old was diagnosed with leukemia last January. They were on house arrest throughout most of last summer. It is so life changing and eye opening to the struggles of children with childhood illnesses. Of course I will pray for Annabelle and the rest of your family.
Now, how is it that Olivia looks so much like her Aunt Kathy?! All of your girls are beautiful-all blond and smiley! You know, I still have some pretty clear memories of all of us growing up on Highlawn Drive. I don't know if you do, because you were pretty young when you moved. I specifically remember playing outside on your balance beam and in your log cabin. I remember playing in the backyard with you and Kathy and seeing your mom and dad come down the deck steps and surprising you with your first puppy, Patches. I even clearly remember the sound of your dad's voice after all of these years-both his normal talking voice and the "roar" he always did to terrify Rachel! From the pictures, it looks like you and Peter are creating wonderful memories for all of your girls.
If you're ever interested, I do know the addresses of a couple kids with neuroblastoma-maybe they would have links or information that could be useful. I also know how emotional it is to look at other sites, because I have done it too many times myself.
Take care. I will continue to check in and pray for you all. I hope that now that the weather is improving, you can all get outside for a change of scenery!
Prayers and blessings,
Angela
mfaust@chartermi.net
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