Friday, June 22, 2007

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!

6 comments:

Auntie Christini said...

Dear Parky,
We're so sorry for all the stress you all are going through. Know that we pray and think of you each and every day and although you've hit a bump in the road, you'll plough through like you've always done in the past because you're a tough little monkey. By the way, you are too cute in the video.
We love you all so much and can't wait until you guys can head back to the hotel to get some much needed time together and rest.
Love always,
Auntie Christini and Uncle Mikey (and Jacob!) xoxoxoxo

funnyface said...

I don't know what to say Tracy except I wish we could just give you guys a big hug and make everything better. I know this is very hard on you all but you have done a fantastic job so far.
Remember we may not be with you but everyone is thinking about you all and praying for everything to be better. We love you guys tons and can not wait either for the day you are all back home with us!

Love the video so much (so did everyone who sits around me a work).

Sending extra love, hugs and kisses!

Laura, Craig and Elizabeth

Auntie Natalie said...

Parker Poo, Tracy, and Kevy,

I truly hope that this weekend brings you only good news. You have been through so much over the past 17 months and you and your Mom and Dad truly deserve good news, much rest, and peaceful, relaxing times with nothing to worry about at all. I worry so much about all of you and I hope with every ounce of my being that you will get to take Parker back to your hotel room by Monday. You need to be able to move around, sit in the sun, and enjoy each other outside of the hospital. I know that the doctors are doing their very best so I will trust in their expertise and I can't wait until there is ONLY good news and I KNOW that day will come soon!

I love you guys and I wish I could give you all a big hug. Hang in there Parker Pants. I KNOW that your superhero powers will shine through sooner than soon!

Love,
Auntie Natalie xoxoxoxoxo

nonna said...

Hey Parker,

Thank you for coming through again. Your video is exactly what everyone needed yesterday.
We love you very much.

Stay strong Big Guy.

Love you tons
miss you even more

Nonno & Nonna

Elizabeth said...

(((hugs)))

I know virtual hugs or even real hugs would not even begin to take away the stress that you feel right now. I wish that there was more I, and all of us could do - and I don't want to be too cliche and say take it day by day - but you are in MY thoughts every day and every day I send some strength your way and hope that each day that passes gets a little better for you all - you, Kevin, Parker - and now, your parents.

(((hugs)))

Elizabeth, Gary and Calder

Kyle said...

Parker.

We really hope today and the days to come can relieve some stress that you and your parents have been feeling as of late. You and your parents have always been so strong, we know that you will continue to hang on and pull through. We believe in you Parker, and we believe in your parents as well. You are an amazing trio. Love all you guys very much. And we miss you all very much too.

Love, Kyle & Josephine