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.

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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.

Summer in review (part two)

I was fortunate to make it to Spokane, WA for my sister's surprise birthday party.  We had massages, spent time with her beautiful family, and drove to Portland to visit some of her friends.  The weather was beautiful and she was delighted to bring her Porsche out of the garage and drive with the top down for the road trip.  I miss her tons and wish we lived a lot closer.

My brother and his family took a two week vacation and I am super thankful they decided to go to Disney World.  Living in Orlando often means family comes to me.  I can't even remember how long it has been since I have seen Craig and Katie.  We had lunch at the NBA restaurant and afterwards the kids got soaked running around in the water.   Serena enjoyed having three friends listen to her talk and talk and talk. 

With major reluctance, we took Aaron to the community swing set.  Aaron's doctor said it was time to start getting Aaron out of the house a bit and take him to the park.  We went at eight in the morning.  He was loaded up with sunscreen, UV clothing, a hoodie, and his wide rimmed hat.  I was still scared to death.  We stayed outside for maybe 15 minutes.  Aaron really did not have that much fun.  UV light is deadly to him and we have to limit his exposure.  Next time we will try a park with more activities and maybe earlier in the morning.

Summer in review (part one)

Summer was fantastic!  Serena was here, we had no hospitalizations, and I got to see my brother and sister.

We threw cousin Aidan a small birthday bash.  Technically his birthday was not this summer, but I am really behind in blogging.  We were fortunate to see Aidan three times this summer.  Aaron is slowly warming up to his "best friend."  I am hoping to have more frequent play dates.  Aidan is the only approved friend the doctors will allow.  We are thankful because he is adorable.

Serena spent the summer with us which always makes life more fun.  She is never without a good story (which often never ends) and so much creativity.  She had a blast with the nannies.  She even put on plays for me when I got home from work.  My favorite moment was one night when she needed to go downstairs to get her stuffed toy.  I was busy and couldn't go down with her.  She is deathly afraid the ghosts are going to come out of the walls and get her.  She armed herself with a flashlight and a baseball bat.  I wish I had a picture. 

Michael was a race car driver for a day at the Walt Disney World of Racing.  He even had to enter the car through the window.  He loved it!

Serena played her violin in a concert and had an excellent performance.  Her daddy also plays the violin and they are both very talented.  A few weeks later she performed a monologue in a theater performance.  This little girl has endless talent.  She also has many goals in life.  Lately she wants to be a professional soccer player and publish children's stories.

Aaron's cooking interests have taken off this summer!  He has gone from playing with his food toys to discovering recipes that he insists I make.  He finds the recipes himself.  His inspirations come from youtube, his books we read and looking through my cookbooks.  Everything he has picked out has turned out well including the Creamed Chicken with Peas on Toast.  I only wish he would eat the things we make.  He does not like to eat.
 

We still travel to Cincinnati regularly for Aaron's treatments.  We were going every three weeks and this month we are trying to go every four weeks.  Having Serena come with us is a blessing.  Everything is better when that girl is around!  The drive was easier with both kids in the back seat and I got to listen to my audiobooks. 

Aaron's health remains unchanged.  We will never lose hope that someday we will win this battle and announce to the world that Aaron has been cured!

Little chatterbox

This is a longgggg overdue post. Sorry to those that have supported us along the way and I have left you hanging.

We tried another steroid wean without success and had to go right back up on the meds. That was disappointing, but we are still plugging along. He still has zero immune system and is still just as fragile as ever. We are expecting at least another year and a half before we have any hopes of him entering society in a normal way.

However, there is some good news. Aaron has become quite the talker. I have a feeling his sister has rubbed off on him. Serena has been staying with us this summer and I have never met anyone who can talk and talk the way she does. They have also done a lot of laughing lately which makes me happy.  

Aaron has had the norovirus now for about six months. Without an immune system he has no way to fight it and there is no medicine to help. The doctors have tried an experimental treatment with breast milk supplementation. With only one glass a day (loaded up with strawberry syrup), he has gone from pooping every two hours to only three times a day. This means we are all getting more sleep at night. Yay!!!!

Aaron has lost about six pounds and looks great. His skin looks better than it has in a long while.

We are also enjoying Serena's company. She is a beautiful, fun, and talented little girl.   She enjoyed a week of VBS, had her acting monologue performance, and played her violin in a concert. She is looking forward to soccer starting again soon. She is one of the star performers.

We even got to have another visit with cousin Aidan. We love when he gets to visit.

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