Stress (By Mom)

Lately it feels like our life has been a completely exhausting roller coaster ride. Yesterday, in particular was of the most stressful days that we have experienced in a very long time. Parker's neutrophils and white blood count have remained stable for the past week. On Monday, we had received very promising numbers and were eagerly anticipating that moment when we could finally take Parker out of that crib. However, with suitcases packed, a very clean hotel room and extremely excited parents and grandparents this was not the case on Wednesday morning. When they drew Parker's blood on Wednesday, they noticed that his numbers had not changed at all from the previous Friday and that Monday's results were more of a false positive since they drew his blood peripherally and not through his cathedar. Therefore, there was likely a concentrated amount of cells in that particular area. The doctors felt that we should wait until Thursday morning to draw more blood and see the trend of Parker's numbers. If Parker's numbers indicated that he was still mildly neutopenic then we could have left because his numbers would have been stable and constant. This was not the case yesterday. Parker's numbers actually decreased slightly which was obviously a major stress and concern for us. When the doctor on the unit came to see us, we were given a few different possible explanations for this. Perhaps this was just a fluctuation in Parker's bone marrow that would take some time to truly stabilize. Perhaps it was the toxic metabolites hindering the production of his bone marrow or the dreaded one- a virus that they were unable to detect.

I think that this was the breaking point for all of us. The past 17 months have been the most stressful months of our life. We have done everything to keep Parker healthy including taking a leave from our jobs for over a year in order to ensure that Parker is in the safest environment possible. This alone would be a major financial stress to any family and rightfully so. We have moved to a foreign country where we do not speak the language in order for Parker to receive the best possible treatment from the best medical team in the world. We have left our home, family, friends- our support system with hopes that short term sacrifices will lead to long term rewards for our son. I say all this because it is part of the very big picture we are dealing with which our sick child. Obviously, Parker's sickness is the most important stress, but all of the other stresses add to this picture and can make life feel very overwhelming and unfair.

We have always been used to Parker doing extremely well. He has always had very positive results and does not experience any negative side effects of ADA. For this we are extremely grateful and know that our hard work has definitely made a difference in Parker's outcome. We are used to Parker always being the best, so yesterday was a shock when we thought that Parker was actually doing the opposite of what he should. I could not stand the thought of being in that hospital any longer. We are purely exhausted on every level and just want to bring
him back to the hotel so that we may try and rejuvenate. My parents have been a tremendous help to us. I honestly do not know what we would have done without them here. They have been such a support to us and have helped us out a great deal at the hospital. My mom has been spending quite a few nights so that we may get some rest. I know that she is exhausted and that her back is in a lot of pain, but she never complains. We want them to know how thankful we are. I know that they have made many sacrifices to be here with us in Italy- especially spending quality time with their other grandson who was born in January. I know that our family understands that their place needed to be with us during this extremely difficult time and we look forward to being together again as an entire family unit and not one that is separated like this.

Dr. Aiuti came to see us last night at the hospital and had a very thorough discussion with us. He is such a brilliant man and answered all of our questions and listened to all of our concerns. He was very positive and reassuring. He did not seem worried about Parker and said that this is actually normal. Although I think that a fluctuation usually happens a lot earlier than day +34. He does not feel that Parker has a virus because he is clinically doing amazing. As a precaution, they will complete several tests today to make sure that they are not missing anything. He feels that it is likely the toxic metabolites which are hindering Parker's bone marrow which is essentially what we want. We want to know that his new cells will have an advantage over his old ones. This cannot be confirmed though until test results come back. On an extremely positive note, Parker's bone marrow aspirate results came back indicating that Parker has en grafted which is wonderful news and that although the numbers are extremely small- he is producing T, B and NK cells (the cells which he is normally unable to produce).

We are hoping that today will be a better day and that our stress can slightly diminish. I know that we will be extremely worried if his numbers do drop some more, but I am trying to stay focussed and positive that his numbers will start to increase. We will be at the hospital until at least Monday or Tuesday. Although we desperately want Parker to come back to the hotel, we also do not want to put him in any danger and trust the medical expertise and decisions that the doctors are making. There is a new video on the right sidebar for June 21. I think it is the best one yet and has definitely made me laugh in the past 24 hours. Make sure that your volume is up. This is what the little monkey is like for us each day now. He likes to be heard just like his mom!

Ciao!