Aaron's Hyper IgM Journey

Monday, December 16, 2013

"Doing quite well" Really???

We just got back from another trip to Cincinnati.  Our timing could not have been better.  We arrived the night before a big snow and left the morning before another snow.  We enjoyed the beautiful winter wonderland without having to drive in it too much.  Aaron was not thrilled about the cold and could care less about the snow.  I found it to be pretty and thankful that the car doors did not ice shut this time. 

December is the best time of year to visit the Ronald McDonald House.  The house is so beautiful with thousands of lights and probably 100 Christmas trees.  Every year they have the Christmas train.  Aaron LOVES this train and talks about it year round.  The train town was set up, but unfortunately a note was left for the children.  The note explained that Percy kept derailing and had to be taken back to the island of Sodor for repairs (this means they could not figure out how to run the train).  Hopefully, the train will be fixed and running when we go back in early January.

We met with the doctor and I asked her the same questions I ask each month, "Will my son ever get better?  Will he live?  Will he ever be able to play with other children?"  Her response was "I really think he is doing quite well."  It took everything in me to not get up and shake some sense into her.

My perspective: We did this transplant to give Aaron the immune system he never had.  He is no closer to getting an immune system than the day they started chemo and stripped him of the little bit of immune system that he was born with.  Now, not only does he not have an immune system, he also has deadly GVHD.  He cannot play with other children (in fact he screams at them).  He cannot go to school.  He can't even go outside and enjoy the sunshine (UV light is also deadly).  I really am not a pessimist, but I would like to see my son improve.

The doctor's perspective: He is very stable and on a relative low dose of steroids.  Of course he screams at children.  He spends all his time with adults and is not used to child behavior.  Children run around acting like wild animals and Aaron must think they are crazy.  He will get better someday.  His cells and the donors cells need time to work themselves out.  As far as school, he will be fine.  He is smart and we can keep teaching him at home.

UGH!!!!  There is no new plan.  The Cincinnati Children's hospital approach of watch and wait will continue for a while longer.  I pray his gvhd goes away so he can finally get an immune system.

We are enjoying the holidays.  Serena has spent a bit of time with us.  She is so much fun.  We have gone for walks in the evenings to look at the Christmas decorations.  Serena and I went to a neighborhood holiday party.  She made her favorite gooey gingerbread cookies and was able to meet some of the neighbor kids.  Life is good for us and we are happy.

Btw... Aaron still does not like Santa and does not think he is real.  I love that kid.  He is so funny.

Aaron feeding Liz, his lizard friend
Aaron sleeps with his dog covering his face
Looking at the flowers in the neighborhood