Category: Mom’s Blog

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!!!

Preface… you may want a kleenex for this.

What I have written may not be the most upbeat entry, but if you have the heart to read it, I’d like you to hear it…. Well, we made it. Today was our first day on our own giving Jake his GCSF injection. Two down… eight (or so) to go. It went pretty well but we were both very nervous. Through a lot of tears he survived… and so did we. He continues with the nausea today, off and on, but it’s better than it was. The cough I mentioned a few days ago is also worsening. Please pray over that. Something I forgot to mention in last night’s post, when we de-accessed Jake’s port before leaving the hospital yesterday, he didn’t cry at all. We were so proud – and shocked. He’s usually very upset having them un-tape his chest (which is a bit of an owie with all the tape they have to use) and then pulling the needle from his chest port. They’ve said that these are the kinds of milestones we will hit as we get deeper and deeper into this journey. That the kids will eventually get use to accessing and de-accessing. That’s one down, the de-access part… the accessing is still traumatic and probably will be for a while. I have to be honest, as happy as I am for Jake that he hit this milestone and that fear is now gone, it makes me sad too. These are things that no child should ever “get use to”. Seeing a needle pulled from my child’s chest is something I will NEVER get used to. But as they say, life goes on, and we must endure things we wouldn’t ordinarily know as normal because these are our new normal… tubes, needles, chest ports, horrible drugs. As I sit here Sunday evening, thankful for the past 24 hours home, I prepare for another busy week at TCH. We have labs and transfusions tomorrow so we’ll spend a full day in town. They will draw blood from his arm and if his counts are low, they’ll stick him again by accessing the very port they just de-accessed yesterday. Then Wednesday we have an appointment with the Transplant Team for more blood work and tests to be sure his body can handle what lies ahead. If his counts are where they want them and if his tests come back well, they plan to begin harvesting his stem cells this weekend. That means they will sedate our baby and put a catheter in his groin. My mind is swimming with what it all means, so many questions for Wednesday, so much fear over what this means for our son. He’s so very little. Each day he wakes up and asks if we have to go to the doctor, when I say no, there is SUCH relief. When I say yes, there are tears. This will be a week full of early morning tears. I’m so very tired after a long week of sleepless nights and you’d think my head would hit the pillow and I’d be out now that I’m home, but my mind won’t rest. I share these things so that you will share them. Please, please share them. Most people don’t know what these children endure on a daily basis. I didn’t. I’ve been thrust into a world I knew nothing about. I was ignorant. I never had the need to know. I didn’t know anyone personally. I would hear a story of a child and my heart would hurt but they were so distant… I had no personal connection. Not that it should be an excuse, I just didn’t know. Until you walk in this world, you can never really know. Now I do. And as I learn, I will share. Did you know that only 4% of all research funds that are provided by our government and the pharmacutical companies go to childhood cancer research? Billions of dollars a year go to cancer research but only 4% of that money goes to childhood cancers. Only FOUR PERCENT!!! How can we let these babies have only 4%? We have to do more, do better. My heart aches for Jake but it also breaks for so many others that I’m meeting, and so many who are no longer here. Do you think that if they had more than 4%, some of these precious angel babies would still be here? I do. Help me! Share Jake’s website. Tell people about him so they will learn. Tell them about any of the children I write about. They all deserve to be known and they need our help. People need to know that these children are real, that they suffer, that some of them don’t make it… that they need more than four percent.