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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Flares and prayers

Aaron is doing ok.  It is still too soon to tell.  His GVHD started flaring up again last week and I was devastated to say the least.  The rash is on both calves and is very mild.  We have been going down on his steroid every week and he is down about 45% from the highest dose.  He is still on a pretty high dose to be showing signs of a flare.  He is also now on the photophoresis that is supposed to make all of this better.  The doctor said not to worry that all of this can happen and he can still get better.  She is not too concerned at this point.

I will be leaving next week. I have to go home to work and will be leaving Aaron behind.  What a hard thing for a mother to do.  I try to remember that in the long run, this is best for everyone. 

We are still trying to find a location for Aaron to get his treatment that is closer to home.  As expected, nowhere in Florida is capable.  Sometimes I don't get Florida.  Florida is the fourth largest state by population.  Why is it they can't have good specialty programs in medicine?  Why can't they figure out how to tabulate a presidential vote?  Why do they keep increasing the toll road prices, when they budgeted that the tolls should have paid for the price of the roads years ago?  I will stop here. 

We are looking at Atlanta and Birmingham as options for Aaron's treatment.  Michael will take some time off from work in Dec to watch Aaron and he has vacation in January.  After that, Aaron has to come home or else things will start getting extremely hard for us. 

Aaron's GVHD may not resolve for 1-5 years from now.  We need to devise a plan to keep him safe in Florida so we can continue with our lives.  He is not thriving in the Ronald McDonald House.  And we cannot continue to live without working. 

This was a hard week for me.  A 13 year old boy lost his fight.  This boy was an incredible young man.  Mature beyond his age, yet such a fun kid.  He loved to go to the skate park with his friends.  Unfortunately, one day his world was turned upside down and he required a bone marrow transplant.  The 1st one failed and then he had a 2nd transplant.  He was doing really well for a long time.  Like Aaron, he started having complications.  Please pray for his family. 

A year ago today

On the Saturday after thanksgiving last year we packed up our car with donated food, warm clothes, and a few toys and left on our journey to Cincinnati. I had cried for months leading up to this day. I was scared to death not knowing if this was the right decision. Once we left, I put all that behind me and never second guessed myself. I am surprised how little I have cried since (I mostly cried when I didn't know if Aaron would make it).

Unfortunately, Aaron's immune system is still worse now than before transplant. We still believe he will heal and we hope soon. Michael and I have worked together to get through this last year. Things are going to be really hard now that I am leaving to go back to Orlando to work full time. I can't imagine leaving Aaron for weeks at a time. I figure that we have gotten through everything else the past few years and we will get through this as well.

On a brighter note, I saw glimpses of Aaron's personality shine through today and that was fun. Makes all of this worth it.
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German Donor

We found out today that Aaron's BMT donor is from Germany.  I would have never guessed that.  I did some Wikipedia research and found out that the Afro-German population is very small.  A lot of this population is ethnically mixed.  As a result of the genocide with WWII, Germany does not include race as a part of their census.  Therefore, the exact Afro-German population is unknown.  I would estimate this population to be 1-2% of the total German population.  I find this interesting because bone marrow differs based on ethnicity.  Considering Aaron's background, I would have expected to find his match in the US or Caribbean. 

Unfortunately, Germany has a two year wait before the donor and patient can make contact.  Until then, I can only send letters without any identifying information whatsoever.  We will have to brush up on our German over the next year.

The not so great news... We will be spending the holidays in Cincinnati.  :(((((  We were hoping to work with St. Petersburg to do Aaron's photophoresis.  We found out that they do photophoresis for children, but not as small as Aaron.  Little children require a special machine and a donated unit of blood for the procedure.  I asked our doctor if we could start looking for the next closest location.  She does not want to look elsewhere at this time.  All Children's Hospital in St. Pete wants to accommodate Aaron and begin using this procedure for their little patients.  This means: buying the machine, training on the machine, and transferring Aaron's care.  All of this sounds simple, but is not.  The machine costs hundreds of thousands of dollars.  A technician from the manufacturer has to come to St Pete to train the nurses and be present for the first two procedures of an actual patient (Aaron).  AND it is the holidays.  I don't foresee any of this happening any  time soon. 

This year for Christmas, I will be alone in Orlando while Aaron and Michael are in Cincinnati (I will start working full time in Dec).  I don't even think we will be able to have Serena for the holidays at all.  This is sad.  However, tomorrow is Thanksgiving, so I am going to be thankful for all that we have instead of what we don't.  We wanted Aaron to get photophoresis and he is.  We wanted to have our son alive and he is.  Some day (hopefully soon), our family will be home again with the children playing like children should.