Friendship & KRBE

A little Good News and some Not So Good News??? Good news…  My sweet, cooky, wonderfully fun, and most lovely and gentle hearted BFF Tracy, wrote the most beautiful letter about my family and sent it to 104 KRBE for a Christmas Wish radio contest and won!  Then they called (first thing in the morning) before coffee and read the letter on the air…  I was a blubbering mess.  But how cool is that?  $1004 to help with Jake’s medical needs.  I can’t help but think of the HEB ticket machine where my kids get Buddy Bucks that says “winner, winner, winner, winner!”  It was such a surprise.  I think some of my homemade scones need to make an appearance on her doorstep for her precious heart and beautiful blessing of friendship.  I just LOVE her to pieces!!!!!! And for the not so good news… It’s Saturday, and we were sent home.  Jake’s cell counts are not mobilizing and we can’t harvest his stem cells this weekend.  We will try one more time on Monday.  If his counts are not there, we stop the GCSF injections, march on toward our next round of chemo, and start over.  That means all of the injections are for not and we have to do them all again.  They are awful for him, for all of us, so as much as I really don’t like saying this, please pray that his counts are where they need to be.  I know this has to be done, but my heart is so fearful and there is a big piece of me that isn’t ready for this leg of the journey.  Harvesting his stem cells is the very first step to lead us to the hardest and most dangerous part of his treatment.  I MUST let go and give it to God.  I know he is Jake’s protector, his healer, but I’m his mom, I’m human and selfish, and it is so hard to hand him over.  When he’s upset, when he’s being poked, when he’s throwing up and sick to the point of exhaustion… he wants his mommy.  How do I let go?  I really need your prayers over this. Henry and I are both struggling with this stage of the process.  I keep thinking of the scripture, “Let each of you look out not only for his own interests, but also for the interests of others.” – Philippians 2:4  I’m really trying to draw on that as a reminder that this isn’t about me being ready, it’s about Jake’s best interests.  If you have anything we can use to find peace with this, please share. And, wouldn’t ya know… the petri dish grew gunk and as suspected, Jake has RSV.  The initial test came back negative but the cultures say otherwise, which is the likely reason the GCSF isn’t boosting his counts the way it should.  They are fighting the RSV rather than working their magic in his bone marrow.  This is actually a little bit of good news because without the shots, the RSV may have taken him down hard.  The BMT Doc talked of admitting him today and putting him in the RSV tent for the next 5 days but we said no.  For now.  If it worsens we will reconsider, of course.  This could present a problem though because the anesthesiologist is very uneasy about sedating him with a respitory illness.  So even if his counts improve by Monday, we may not be able to go forward.  The endless limbo is so difficult.  (But he really does look good, and the week has brought improvement with his cough).  In fact, yesterday he went outside to play for a few minutes for the first time in a while and we ran an errand while the kids were in school – he was diggin’ the freedom. Today they put us in a hospital room without a bed and he thought that was GREAT!  So roomy.  Roomy enough for Jake to kick around the little blow up ball they gave him from the “I Got A Poke Treasure Chest”.  Sadly, he did get poked twice today.  One of his veins blew during labs draws so they had to go for the other arm.  This week has consisted of 4 blood draws, 7 shots, 2 port accesses and 2 nasal syringe things (those are hateful – btw).  His little arms and legs are tracked up and he’s had enough… this has been a week from “poke hell”.  But ya know what the most amazing thing is about these kids????   They just keep pressing on.  One minute they are pleading, crying, and afraid.  The next minute, they turn a corner and are happily telling the nurse that just poked them what their favorite dinosaur or princess is.  These angles with the title Nurse cans ease them back from hysteria and have them deep in conversation in no time.  And the truly amazing ones capture your heart and that of your child’s.  There is forgiveness and comfort when the day is done, and it’s a beautiful thing in the midst of such misery.  For our nurses that tow the line every single day… my heart loves you for how you love our babies!!!