Day 100 is a major milestone that many stem cell transplant recipients count down to on their calendars as we have and have eagerly looked forward to. It is seen as a definite turning point in one’s recovery. DAY 100 is when the greatest risk for critical side effects is past and when the stem cells have engrafted and begun making new blood cells. It is when the time for acute illness has past and a small sigh of relief can be taken. We can stand back and acknowledge a huge accomplishment. One of endurance of withdstanding all the pain and patience treatment needed. The acknowledgement and celebration of the cells themselves for succeeding and doing the one thing they needed to do, and to his body for being a hospitable host and accepting them to their new home to thrive. DAY 100 is 100 days from November 12th which was transplant day, but I would be remiss not to recognize it is 259 days from diagnosis day (June 6th), that is a really big difference. Wow 259 days, but who is counting. Me. 259, that is a huge deal. I am so proud of Daniel, and us as a family. I am looking so forward to a long life ahead. I know there will be challenges and we have fully passed the toughest part. We now pass from the acute to the chronic stack of pamphlets to look through and move on to a lifetime of challenges, but I welcome them because we have a lifetime to look forward to . I am glad you have been here with us all to support us through our journey so far. I don’t know where it will take us. I know it has been chaotic at times. It has been sad and scary, and funny and courageous but most of all has been filled with love from every single one of our friends and family members along the way. There have been more times than not that I couldn’t talk to anyone and this blog has been my only mode of communication. In fact it still is. As we come out of these 100 days our restrictions will begin to loosen up. Unfortunately just when we are given the okay to begin to start seeing a few people, we still need to tread very slowly into tumultuous waters. Daniel is still extremely susceptible to all illness , having no immune system and a very high viral load still with his CMV still , plus we are in the height of a very bad virus and flu season, so we still continue to be very cautious and know that everyone knows it is still for the best.
As a big treat today when we were finished Daniel’s weekly infusions at the hospital we surprised him with the one thing he has been obsessively asking for for approximately 259 days. His favorite thing in the world SUSHI. It is the one thing ( of many) he is still not allowed to have and won’t be allowed to have for a full year, but we made some special arrangements and took special care to have some fully cooked rolls made for him. No they were not exactly what he wanted, but they were a good little treat.
I hope he realizes what a huge accomplishment he has come to today. He is very much responsible for a lot of the success he has today. So much of his health today is due to the work he has put in and the attitude he has maintained. So many days I have marveled in wonder at him. I could not be more proud of my son.
His has earned his survival.