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.
