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.
Tuesday, November 27, 2012
Saturday, November 24, 2012
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.
- Posted using BlogPress from my iPhone
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.
- Posted using BlogPress from my iPhone
Wednesday, November 21, 2012
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.
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.
Wednesday, November 14, 2012
Stressful Times
Things are not good and they are not bad. We are just going through a stressful time. Michael has been studying very hard for his annual training and his ATP exam (FAA requirement). This test would be hard under any circumstance, but he is working and then took care of Aaron full time while I went home to work for four days. Bless his heart, he had the nurses quizzing him while Aaron got his infusion yesterday. His exam will be Thursday and Friday.
I will be going back to work full time in December. This is a huge source of stress for many reasons. Unfortunately, we do not qualify for any sort of assistance and we cannot afford for me to be out of work any longer. I do not mind working at all. However, we fear that this could jeapordize Aaron's health. We will be moving him back home. Last time we took Aaron home his health was compromised so severely that he spent most of the time inpatient and then had to be medically flighted back to Cincy.
We discovered that St Petersburg has the ability to do Aaron's photophoresis treatments. They have agreed to help and we are working out the details of that right now. This will be stressful trying to work full time and travel two hours (each way) to St Petersburg two to three times a week.
Finally, we will once again have to find a babysitter. This has been the most stressful part of being Aaron's mother. Finding someone who we trust to keep Aaron safe and someone who is flexible enough to work with our very irregular schedule is difficult.
It is still too soon to tell how Aaron is doing. He has gone down on the steroids a bit, but not enough to know if his new treatment is working. He does seem to have a little more energy. He walks again, but won't ride his trike yet.
I asked Aaron tonight if he said his prayers with daddy while I was gone. He said yes. I asked him what the prayer was. Aaron's response "Dear God, heal my bones. Amen".
I will be going back to work full time in December. This is a huge source of stress for many reasons. Unfortunately, we do not qualify for any sort of assistance and we cannot afford for me to be out of work any longer. I do not mind working at all. However, we fear that this could jeapordize Aaron's health. We will be moving him back home. Last time we took Aaron home his health was compromised so severely that he spent most of the time inpatient and then had to be medically flighted back to Cincy.
We discovered that St Petersburg has the ability to do Aaron's photophoresis treatments. They have agreed to help and we are working out the details of that right now. This will be stressful trying to work full time and travel two hours (each way) to St Petersburg two to three times a week.
Finally, we will once again have to find a babysitter. This has been the most stressful part of being Aaron's mother. Finding someone who we trust to keep Aaron safe and someone who is flexible enough to work with our very irregular schedule is difficult.
It is still too soon to tell how Aaron is doing. He has gone down on the steroids a bit, but not enough to know if his new treatment is working. He does seem to have a little more energy. He walks again, but won't ride his trike yet.
I asked Aaron tonight if he said his prayers with daddy while I was gone. He said yes. I asked him what the prayer was. Aaron's response "Dear God, heal my bones. Amen".
Monday, November 5, 2012
So far so good, but too soon to tell
Aaron is doing great!!!! We couldn't be happier. Today, the doctor said his skin looks better than it has since he got GVHD and his stools are normal for the first time in months and months. Aaron is still on high steroids and a new medication called infliximab. Not until he goes off of these medications will we know if the new photophoresis treatment is really working. By the end of December, the steroids should be low enough to have a good idea how the new treatment is working.
Aaron was discharged from the hospital Thursday after doing 14 days of photophoresis. We are now doing treatment five days a week as an outpatient. During one of his treatments, I noticed my pants were feeling really wet. I looked down and the bed was covered in blood. Although I should have been alarmed, I wasn't. At this point, after everything I have been through, a bed covered in blood did not affect me much. Come to find out, both of Aaron's lines broke in the same location and were leaking blood. Thankfully the lines were able to be fixed without surgery.
Our hospital stay was not too bad. Aaron rode his trike almost daily up and down the halls and would wave at the doctors and nurses. He went to the PT/OT room three days a week and would cook soup in the kiddy kitchen. He loves his food toys. He has also started watching cooking shows on youtube. His current favorite is Jamie Oliver making an omelet.
Towards the end of the stay, Aaron lost interest in walking, his trike, and any kind of activity. He still does not want to do much. I am hoping this is due to weight gain from the steroid. He is also in desperate need of playmates.
Halloween was a bust. Aaron refused to wear his train engineer costume. Child Life put on a parade with people in costumes and went by the patients rooms so they could look out the window. However, Aaron was hooked up to the photophoresis machine and could not see the parade from his bed. There is always next year and I BELIEVE Aaron will be healed and able to go trick or treating for real next year.
Aaron was discharged from the hospital Thursday after doing 14 days of photophoresis. We are now doing treatment five days a week as an outpatient. During one of his treatments, I noticed my pants were feeling really wet. I looked down and the bed was covered in blood. Although I should have been alarmed, I wasn't. At this point, after everything I have been through, a bed covered in blood did not affect me much. Come to find out, both of Aaron's lines broke in the same location and were leaking blood. Thankfully the lines were able to be fixed without surgery.
Our hospital stay was not too bad. Aaron rode his trike almost daily up and down the halls and would wave at the doctors and nurses. He went to the PT/OT room three days a week and would cook soup in the kiddy kitchen. He loves his food toys. He has also started watching cooking shows on youtube. His current favorite is Jamie Oliver making an omelet.
Towards the end of the stay, Aaron lost interest in walking, his trike, and any kind of activity. He still does not want to do much. I am hoping this is due to weight gain from the steroid. He is also in desperate need of playmates.
Halloween was a bust. Aaron refused to wear his train engineer costume. Child Life put on a parade with people in costumes and went by the patients rooms so they could look out the window. However, Aaron was hooked up to the photophoresis machine and could not see the parade from his bed. There is always next year and I BELIEVE Aaron will be healed and able to go trick or treating for real next year.
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