My Little Brit

We were at occupational therapy yesterday. Aaron was having a blast. The therapist was happy. She has never seen him with such energy and enthusiasm. He swung on the swing by himself, he cut paper, and he put together a cookie puzzle. Then she pulled out something new. Shaving cream. He was not having it. He did not want to spray the cream and definitely did not want to get any on his hands. He had enough. He looked at her and said "I'm really cross!"

Neither of us could contain the laughter. Someone has been watching a lot of Thomas the Train. For those of you that don't know, it is a British series and the fat controller often gets "cross" with the trains.


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Location:My Little Brit

Cataracts

I am already counting the days to 2014 (358 days to go).  One of these years just has to get better.  We found out today that Aaron has developed cataracts from the prolong steroids.  He will need surgery.  He cannot have surgery now because the risk of infection is too high.  However, if he goes too long without surgery, he can go blind.  As his vision gets worse from the cataracts, his brain will process vision less and less and begin to shut down its visual response.  Even with cataract surgery, if the brain has shut off vision, he will be blind. 

His kidneys are also still spilling huge amounts of protein into the urine which means they are still being hit hard from the medication.

Aaron's GVHD has to get better and really soon.  He has to get off these medications. 

I try to stay positive with all that happens, but I don't feel like it today.  Today I am going to be angry.  Tomorrow I will be positive again.

Day +366 Happy Cell Day

Aaron made it one year post-transplant!  Happy Cell Day little buddy.  I love you love you love you!

This last year has been with MANY ups and downs, but we survived.  One year post-transplant is a huge milestone.  The next milestone is 5 years post BMT.  After 5 years, most people survive.  I already know Aaron will be a survivor.  I think (and hope) that we are finally over the hump and he will start healing.

Aaron spent the whole day in the day hospital receiving IVIG and infliximab two of his regular infusions.  Child life made him a sign and brought his favorite toy cake to play with.  He also got a new toy.  What a lucky kiddo.

I had too high hopes for the new year.  I hoped for complete healing with no bumps in the road.  Our first bump hit Dec 31st when Aaron's GVHD got a little worse.  He was itching all over for days and was not comfortable.  The rash was very slight, but started appearing all over his body.  We had to go up on the steroids for the first time since he started photophoresis.  Then on Jan 1st he came back positive for CMV, a virus.  I was in panic mode.  Most people get this virus in their life and never know.  However, in immunocompromised patients, it can be nasty.  The range is from fevers and aches to permanent loss of vision to death.  Not the way I wanted to start my New Year!!!!  Thankfully, since his first positive test, the virus has been quiet.  Once you get this virus, it never goes away but lays dormant in your body.  I pray this virus never shows its face again.

We will be bringing Aaron home this next weekend.  We will drive back to Cincy every other week to continue his photophoresis treatment.  We don't know how long we will continue photo.  It depends on Aaron and how quickly he can get off of steroids.  I am guessing anywhere from 3 months to a year.  The drive takes 2 days up, be in Cincy for 3 days, and drive 2 days back home.  Whatever it takes to heal this kid.  

Here is Aaron a year ago getting his transplant:

Wrapping up December

The end of the year is here and I am ready to be rid of 2012!!! We have been blessed in many ways and for that I am forever grateful. However, I never ever want to do any of that again.

I started back to work in Orlando and I am very happy with my new store. The customers are nice. Michael and I are taking turns caring for Aaron. We are like strangers lately. I arrive in the morning and he leaves the same day in the afternoon and vice versa.

I spent Christmas in Orlando but got to see Aaron open his presents via FaceTime. That was really special. I went to Stan and Judy's for dinner. That was really nice. The food was excellent!

So far the winter in Cincy is colder this year than last year. There has been snow several times and it has stuck to the ground for days. I drove in the snow for the first time in my life. I was very scared.

I said that by the end of December I would assess the photophoresis. I do think it is helping. Aaron hasn't been admitted to the hospital for two months. He hasn't had diarrhea. However, he has been itching like crazy and the gvhd has flared all over his body. It doesn't look horrible but this is a setback. He had to go back up on his steroids today. I feel like screaming. I had hopes that 2013 would bring hope and health and only good things. I am also noticing more and more that Aaron has cognitive setbacks. He was soooo smart and sharp before. Now he is slower. I pray he will not always be delayed. Chemo is known to do this. It is called chemobrain.

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So Much Good

I feel like I am walking on water right now.  Out of nowhere Aaron starts adding numbers together.  1+1=2, 1+2=3, 1+3=4, 2+2=4.  Before transplant, Aaron was ahead of his age in many skills.  About a month ago, I was told Aaron is delayed.  He cannot draw a straight line or a real circle.  I was devastated.  Not because he is delayed, but because I never showed him how.  I was too concentrated on keeping him alive, I forgot about all the other things like circles and lines.  I don't know if he should be adding numbers yet or not, but I never taught him how.  I am super excited to see that he is still learning.

Another huge and exciting point of my day was while Aaron was tricycling .  He was having trouble with the pedals.  I couldn't figure out what was going on.  After about 15 minutes, I decided to adjust the seat back for him.  Sure enough, that was the problem.  Aaron GREW!!!!  He has been on high steroids that prevent growth, but he is finally growing again. 

Aaron is also a lot more playful lately.  He watches the iPad a lot less and asks to play.  He doesn't play with his trains that much lately.  He has two new toys that have taken over.  He makes toy sandwiches and cuts them up and plays with a rocket ship. 

Health update: (1) Aaron's kidney numbers are in a normal range for the first time since transplant.  This is huge news.  (2) Aaron's EBV came back about a week ago.  The numbers got high enough to cause some concern.  The doctor wanted to wait and see what Aaron's body would do.  Sure enough, the numbers started going down on their own.  They did give him a drug to help get rid of EBV, but this was huge news as well.  This is a sign that his immune system is working a little.  (3) Finally, I am starting to believe the photophoresis is working (still a little too soon).  We have gone down quite a bit on the steroid without having any bumps along the way.  In the past when we weaned the steroid, we would sometimes have to increase the dose temporarily or stop the wean.  We have gone down week after week on the steroids since October without any problems. 

I feel like the luckiest Mom in the world!!!!!

Going home to work

WOW!!!  What an ordeal.  I was super sad to leave Aaron (and my husband of course).  My stint as a SAHM is over.  I am back to working full time.  My schedule is great!  6 days on and 8 days off.  This will be very helpful to keep up with Aaron's care.

My flight home yesterday was interesting.  The guy next to me was coughing and sneezing and sounded horrible.  I sat for two hours against the window with my jacket over my head the whole time.  Yes, I was THAT person that everyone stared at and thought was crazy.  But, I am sure I am crazy after everything that has happened to me and I am fine with that.  :)

Then I arrived at the house in Orlando.  We had ordered most of our Christmas gifts on cyber Monday and sent them to the house.  I knew I would be home soon to receive the gifts.  Only one package was on the porch and it was from Aunt Katie.  Everything else was STOLEN!  Thank goodness most of the things I ordered were from Amazon and they replaced/refunded with no questions asked.  I was pretty impressed.  I just have to laugh.  I don't get worked up about much,  just Aaron's health.  All we want for Christmas is NO MORE GVHD!!!  Please feel free to send that to us anytime.

Just now, I called Aaron and read him a story over FaceTime.  I feel blessed to live in a time with technology that brings us all close to each other even when we are far away. 

A new month

December is here and I can hardly believe it. I apologize to all of those who have read the blog lately and are worried about us. We are fine. November was a tough month for many reasons. We have worked out most things we needed to and are back on track.

Aaron's gvhd started flaring about three weeks ago. It is extremely mild and hasn't gotten worse since. This is the most important thing in our lives. KEEP GVHD AWAY!!!! We wish it was gone entirely but thankful it is very mild.

How could anyone be depressed in December. All of the holiday lights are so beautiful. RMH really does a great job decorating. They have a train display that Aaron loves. The first picture is of the volunteers putting it together and the second is after it was done.









We are still working on bringing Aaron home. Neither Birmingham or Atlanta are willing/able to do Aaron's treatment. Looks like we will be commuting to Cincy twice a month once we get home. I will have to invest in some audiobooks. :)

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