Update: Our Personal Battle With Leukemia
We are a thankful and blessed family. Brian's recent leukemia diagnosis has sharpened what is truly important. Without our amazing kids, grandkids, family and all of you, this would be so beyond overwhelming. With so much interest and your heartfelt concern, I just wanted to pass along a quick update.
Brian was at UW Hospital for about a month until getting out just last week having completed the chemo phase preparation to hopefully go to bone marrow transplant. He tolerated this remarkably well and we are impressed with his compliance and hard work to do what the teams have asked like an athlete in training.
There have been challenges. A fall left him with broken toes and a dislocation so he is now in a walking boot recovering from that as well. Yet he continued to walk and build strength.
Through this process, we now have a completely new understanding of the Donation of Life. Regularly needing blood and platelets, there were times I had to wipe back tears just thinking of those who give blood regularly for the sake of others. As each bag was hung I was so grateful for this act of giving that kept Brian and so many others alive. During this month long celebration of Donate Life, please remember to keep these big-hearted people in your thoughts as well as the efforts to raise awareness for organ and bone marrow transplant donors. Without them, so many of our transplant family members would not have the future we all hope and yearn for.
We have learned that Brian is so lucky to have several 100% matches on the Bone Marrow Registry. We are blown away by this information. It gives us hope.
Later today we go back to the clinic to do labs, bone marrow biopsy and other testing to continue the path towards a bone marrow transplant. The waiting is the hardest part, so we are looking forward to meeting with our team. They have been the best guides on this journey even with the hard news.
We have experienced B66 in a whole new way. One minute life was progressing normally and in the next moment there was talk that we may only have mere weeks. We were completely devastated yet the entire hospital staff always managed to fill our sails with compassion. Life on the floor can be a very stressful existence but the human element and care factor of the staff is really incredible. There is no question in my mind that it is those real life elements that make UW Hospital one of the very best medical destinations in the country. From taking the personal time to address our many questions, to taking interest in what we do at the house on a daily basis, to sharing coffee and conversation, to showing us great patience and compassion when perhaps the enormity of it all led to us not always being at our very best. They have gone the extra mile on so many occasions and we would just like them to know how much their efforts and kindness have been appreciated. Living similar journeys with so many of our transplant families has certainly helped to ease many of our anxieties and given us the utmost confidence in all they do to help navigate us through this. We quite simply could not do this without the help of these amazing people.
I also get the need for this house on a completely different level. Shock, fear, exhaustion and a completely overwhelming sense of juggling more than any one human could possibly handle was a fairly typical day at the hospital for us and is for so many of our guests. My visits back to Restoring Hope Transplant House this past month have been so therapeutic for me personally. To laugh again among friends, to eat a home cooked meal, to share hospital updates and then also talk about anything but what was going on at the hospital, to feel so completely loved through your messages, letters, texts and emails. This house is such a special place for so many people and it fills me with emotion to say just how much I understand that now from your perspective.
There are so many people to thank that it would be impossible to do so on an individual basis. For the better part of this past month, I essentially lived at the hospital with Brian. I had to be there as much as possible. So many incredible people and dear friends have made so many great personal sacrifices to help get RHTH through this stretch. We are so moved by your kindness. The outpouring of support and well wishes have truly been incredible to see and have honestly helped to guide our spirits through some dark days. Please know that while we have not always been able to respond as we would like to each call, message or letter that they have been received and appreciated with joyful hearts.
With love and gratefulness,
Co-Founder & Executive Director
Restoring Hope Transplant House