Waiting to exhale
Today marks day 36 of being in the hospital for Lucas. 30 days post transplant.
Lucas’s Health-
Friday we found out that his bone marrow in the engraftment test is 100% Dylans marrow. This is a big deal. We thank you for your continued support of Lucas and know in our hearts all of your positive thoughts, prayers and energy are coming thru to Lucas. Lucas has had some fever which is likely due to a delayed effect from the radiation, but we pray its not an infection. Once he has been fever free for 24 hours they will likely let him go to our Philly residence.
His counts also continue to improve:
Normalized Scale - counts over the time period since Lucas went inpatient
Lucas’s Attitude-
Lucas continues to astound us with his can do attitude. It’s hard being stuck in the same room for 5 weeks and the only chance he gets ‘out’ is to walk in the hallway. These days he walks the hallway once 3 times a day and that’s all he can do. He hasn’t seen the light of day and he’s yearning for that moment. I dream about the day when he feels good enough to want to shoot hoops again. He will get there. It's hard seeing all he’s been thru and staying upbeat but his resolved determination keeps Brian and I motivated. Brian and I, on the other hand, switch out every 24 hours. We get to go outside, have a break, feel the sun and it’s hard on us. It’s such a reminder to us both of how much he has gone thru and yet he doesn’t complain. A lesson to us for sure.
To keep the motivation up in the hospital friends and family have helped connect us to Lucas’s favorite sports heroes. He LOVES getting the text messages from athletes and this motivates and inspires him to no end to push onwards. Vince Young and Brad Stevens sent him uplifting messages the other day which was awesome. And Larry Bird even sent a card and signed picture to him (thanks Anne and Karen for making this happen!). We’re on the hunt to get Magic, Kevin Durant and Stephan Curry to send him a message which we know would light him up. Aside from Larry and all Celtics players these are some of his favorite NBA guys. If anyone has a connection, please send them Lucas’s way!
Jack & Dylan-
We don’t write enough about them but a friend reminded me the other day that the impact on siblings is so often overlooked. We are so laser focused on Lucas and it’s heart wrenching to put into words what it’s like to be away from our other kids. They are feeling it, hurting and missing us. We thank our family in Austin who are knocking themselves out to care for them right now. They want their Mommy, Daddy and brother home and are having to grow up too quickly in experiencing some tough feelings. Jack and Dylan are also our heroes for being so brave and strong during the past 8 1/2 months of this journey.
Prayers for Lucas-
Last night I went to St. Patricks Church and prayed to God and my ‘friends’ in Philly the Saints, Jesus, and Mother Mary statues. I prayed for Lucas’s fever to be gone and not have an infection. For his counts to continue to increase and for his body to be ridden of mucositis so he can increase his nutrition. I prayed for our child to be healed and cured of leukemia, cancer and disease FOREVER so he can live a long healthy life which we know he so deserves. I prayed for all the damage that was caused from the radiation and chemos to his internal organs, brain and bones to be removed and healed. And I prayed for Jack and Dylan for them to be healthy, happy and safe from all harm and disease. Those are my prayers anyhow :) We appreciate all of you for your thoughts and prayers as we power forward. Thank you!
