We received fantastic news from KC – Lucy’s bone marrow shows no signs of leukemia and is still 100% donor! Dr.M has given us a wisely conservative schedule to wean Lucy’s immune suppression and profolaxsis medications and we are making some major progress. Tomorrow will be her last dose of prednisone for her GVHD, hopefully forever! We also get to switch out her “vampire medicine” to a different medication which hasn’t caused her any issues in the past. When we talk about doing things or going places and consider whether it is safe for Lucy she chimes in and says “I can’t go because of my meds!” As she weans these medications we are so excited to trim down Lucy’s restriction list. It has indeed been a long, cold, lonely winter and we are so ready to welcom the sun!
Violet decided she wanted a drastic haircut. No second guessing, no waffling, she just decided. I told her she probably had enough to donate and she was so excited! She wanted to give it directly to Lucy, but we decided her hair looks great just the way it is.
Wow, it has been over a month since my last Lucy update, where does the time go? It has really just been much of the same for Lucy. Still working on weaning steroids and infliximab, and really hoping to add tacro to the wean list soon. After stopping dapsone due to sudden and consistent diarrhea I discovered, by accident, that the culprit was actually her magnesium supplement. No clear reason why it happened out of the blue since she has been on this for months, but adjustments have been made and Lucy is doing much better and is back on dapsone and tolerating it well. Finally, an easy fix and a solution for the pcp pnemonia profolaxsis!
Last fall I met with our friend Rich, the “Godfather” of Team in Training for our region’s chapter of the LLS, and as usual, he had an offer of support and encouragement for Lucy and our family. Lucy was chosen to to be the honored hero for a dedicated group of cyclists, who would be raising money and training for a bike ride in Lake Tahoe. I warned him we were about to go deep into hospital/treatment world with her upcoming transplant, but this amazing team wanted to be there for Lucy and for us. Team captains John and Johnelle and Mary visited our family in KC with Christmas and Valentines gifts for the girls, and raised money, raised money, raised money! Later when we return to STL and Lucy started feeling better we went to meet our team at a training ride, and Lucy was smitten. She calls them”my bicycle team!” When Rich told me about this team, I couldn’t believe it, these 32 people set a fundraising goal of $120,000! And they did it! On June 6, the team, including Aunt Lezlie, rode their bikes one hundred miles, stopping along the way to send Lucy videos of encouragement throughout the day. I know that Lucy and her story make a difference in the hearts of many of our friends and family but these 30+ people gave us the gift of seeing Lucy’s name attached to a research portfolio, of our choosing, in the amount of $130,000. Wow!
Many people have asked us if Lucy is “finished” now. There is no simple answer. Her body will be recovering from her transplant for the next 6 – 12 months, and during this time time all medical intervention is, thankfully, just supportive therapy. She is at highest risk of relapse in the first year, and we get to say she is cured of this cancer after five years. Right now, she is great. I asked her today “Lucy, are you happy?” She said emphatically, “yes!” When I asked what made her happy, she said “toys!”. What a great answer. Can you imagine what an adult who has been through what she has would say? Kids are cool.
The girls and I are in KC now and tomorrow Lucy will have her day +180 bone marrow biopsy. It has been six months since her transplant! Her marrow will be tested for chimerism (what % are donor cells), and signs of disease. We are hoping and praying for excellent results.