"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

Look who turned 4

I couldn't be happier to have another year to spend with the biggest joy of my life...Aaron.  We spent yet another birthday at the Ronald McDonald House/hospital.  However, he more than made up for it with presents and celebrations that lasted over a week.

 

 

We stopped by the mall in Kentucky on our way to Cincinnati.  This was Aaron's actual birthday.  He rode on his first train ride ever.  He did not speak one word and I had to force him to smile for the pictures.  He sat completely still the entire trip around the mall.  I believe he was overtaken by amazement.  After the ride, he went to build-a-bear and made his own dog.  He picked out his heart, his barking sound, and helped stuff him. 

 

 

 

The next day was spent in the hospital for treatments.  Aaron was lucky to have his favorite nurse Carol to spend the day with.  She brought him presents that he loves (play dough food set and cook books).  Later that morning Child Life stopped by and did a completely ridiculous dance routine that had us all laughing.  They brought more gifts and a beautiful James cake.  We also found out that in the last two weeks Aaron managed to get rid of one of his three viruses.  This was the greatest gift of all!

Once we returned home, we had Aaron's cousins over for a party.  We started off with fresh homemade lemonade.  Everyone gave Aaron a quarter for each cup.  He didn't get rich off the lemonade stand, but he sure did have fun!  Next, he went straight for the cake.  Aaron had been begging me the entire time I was making the cake for a taste.  He just could not wait any longer.  He really enjoyed opening all of his gifts.  By the time all of the presents were done, Aaron was done too. 

Teacher Troubles

Aaron met his teacher Monday. To say that it did not go well is an understatement. He screamed the whole time and did not want to do what she said. The end result was the teacher stating "not all kids go to preschool."
We did not request a teacher for Aaron because we were worried about his education. We wanted a teacher so that Aaron learns that when he is in school, he has to sit and do what the teacher tells him to. He has never been in any kind of structured environment like preschool or daycare.
I know this is going to be hard for him and his teacher. I hope the teacher can figure out how to help him learn this skill. Otherwise, we will have to request a new teacher. This teacher is used to older kids who sit and listen as she teaches. She does not do much with preschool age.
As you can see in the video, Aaron is very good at doing his school work with the nanny. I also wanted to show this video so everyone can see that despite his serious illness, he is a VERY happy child.

- Posted using BlogPress from my iPhone

And Adeno makes three

Playing in the PT room

Getting some OT time while doing photophoresis

 

We just got back from an unplanned, somewhat emergent trip to Cincinnati.  Aaron's gvhd has gotten out of hand over the past month and a half.  The doctor took one look at the pictures I sent her over text message and told us to come back as soon as possible.  And yes, we are on a text message basis with Dr. Davies, the head of the one of the largest BMT programs in the country. 

Aaron was admitted to the hospital since he was being watched closely and had many IV medications and procedures.  This was actually the best inpatient stay we have ever had.  I am becoming a pro at this inpatient stuff and called ahead to have everything set up.  He had his favorite photophoresis nurse, Ms. Carol, as well as PT and OT appointments daily.  We were put on the 7th floor which is a quiet floor with large rooms. Overall, we had plenty to do during the day and were able to sleep during the night.  That is not common in the hospital.

On the second day, Aaron's stool results came back positive for Adenovirus.  Yuck!!!!!  Now Aaron has three virus (norovirus, rhinovirus, adenovirus) that his immune system (or lack of) cannot get rid of.  Dr. Davies believes that this new virus probably aggravated his body and led to the gvhd flare.  Like most viruses, there is no treatment and we will just have to watch and wait. 

Aaron's skin is looking better and his attitude has stayed great during this whole ordeal.  He actually loves going to the hospital because he gets to watch his iPad most of the day and gets to order food from the menu.  He is such a happy little boy!  I thank the Lord for that.  He has no idea that what he is going through is not normal. 

Racing cars with Dad in the hospital

Bundled up in his UV clothing to take a picture with the cow at the rest stop

Ahead and behind: the IEP

I went to Aaron's IEP (individual education plan) meeting.  Everything went well.  They discussed the results of his assessment.  He is ahead of his age in cognitive and communication skills.  He has fallen behind in the areas of motor functioning and independence.  Neither of these surprise us since the bone marrow transplant basically knocked him off his feet (literally) and he had to start all over again with muscle strength.  His lack of independence means he cannot dress himself, use the potty by himself, or go up and down the stairs by himself.  All of these things are also a result of decreased muscle and bone strength.  The steroids have weakened Aaron's bones to that of a geriatric person and they have weakened his muscle as well.  Fortunately because he is very young, he will be able to recover his bone and muscle strength.  We just need to get him off of these steroids. 

As a result of the IEP, Aaron will qualify for a teacher to come to the home once a week for 45 minutes.  We are looking forward to him starting "school."  Due to his weaknesses, he may qualify for occupational therapy.  However, I didn't think to ask about that during the meeting and I would have to set up an additional meeting to find out.

GVHD lingers on

We left Monday morning for another trip to Cincinnati for Aaron's photophoresis. Such anxiety filled my heart as we got closer and closer. Being home is a bit of an escape from the reality that Aaron suffers from a deadly and difficult to treat complication of his transplant. Driving to Cincinnati is a reminder of this fact. And sadly, Aaron's gvh has flared to cover most of his body since we were here four weeks ago. He is also having watery diarrhea, a very bad sign.




The doctor told us to plan to stay longer than usual. She was planning to admit him after seeing the pictures of his skin. She met with us first thing Wednesday morning. She was not pleased with his progress since the last visit and decided to add influximab. This is a drug we stopped several months ago because the insurance company refuses to pay for it. Each dose is several thousand dollars and they say there is no evidence it works in gvhd. They need to send a representative to the hospital because Aaron made huge improvements overnight after receiving this infusion. We did a second dose today. Aaron is improving enough that the doctor is increasing his steroid and sending us home.




I am overjoyed that we avoided a hospital admission, but I wish Aaron was doing better. This setback means our trips to Cincinnati will be continuing for quite some time longer (probably a year or two) and we have no hopes of an immune system anytime soon.

If anyone can think of some good fundraising ideas or knows of any companies that donate to charities for tax breaks, please let me know. Each trip to Cincinnati costs $800 in gas, hotels, and copays.

- Posted using BlogPress from my iPhone

Starting school and glasses

We are working with the local school system to get a home schooling plan for Aaron.  Because of his isolation, he has been delayed in certain areas.  His delays are due to exposure rather than lack of ability.  For example, he was delayed in cutting with scissors.  This is completely my fault because I thought I was supposed to keep scissors away from three year olds.

Last week, three teachers came to the house to evaluate Aaron.  There was a speech therapist, vision therapist, and a general teacher.  They spent two hours going through a series of questions and tests and puzzles.  They were amazed at Aaron's ability.  All three of them said that in all years they have taught, Aaron is by far the smartest three year old they have ever seen.

We will have a meeting with the school board at the end of the month to evaluate Aaron's needs and come up with an individual education plan (IEP).  Most likely a teacher will come to the house 1-2 days per week for about an hour to keep Aaron on track.  

I am thrilled Aaron is smart for several reasons.  Chemotherapy affects the brain and drops most people's IQ several points as well as causes some attention problems.  The most critical period in brain development is early childhood and the worst time to expose the brain to chemo is between two and three years of age.  Aaron began his 10 day chemo regimen two months after his second birthday.  Spending a lot of time in the hospital during the first years in life can also greatly reduce stimulation and lead to delays.  Aaron has spent nearly a year and a half of his life either in a hospital room or in a one room suite at the Ronald McDonald House.  Finally, we will soon be put on a 50 year plan to pay back all of Aaron's medical expenses from the hospital.   Our responsibility of the medical expenses  (after insurance has paid) is more than the price of four years of college tuition, room and board.  Aaron will definitely need to use his brain to get a college scholarship. :))) 

Our latest ophthalmology appointment resulted in glasses.  I cried!  The glasses actually turned out to look better than I thought and Aaron doesn't complain a bit about them.  I was temporarily sad because it is just one more thing on our long list of "things" to deal with.  Aaron's cataracts have gotten so severe that his eyesight is compromised.  The doctor said he may or may not need cataract surgery, but he is definitely heading in that direction.  Hopefully the cataracts will slow down because the doctor won't even think of surgery until Aaron has a functioning immune system (which he is not close to having).

On a brighter note, we have enjoyed several months free of overnights in the hospital.  We only head to Cincy every four weeks now.  We are continuing to go down on the steroids with some success.  I feel like we are making two steps forward and one step back with each decrease.  Eventually we will cross the finish line.