As I’ve mentioned… it’s day-by-day, moment-by-moment… and today we are home. We were supposed to meet with the BMT (Bone Marrow Transplant) Team today but because of yesterday, it has been moved to tomorrow. Did ya get that??? Kinda riddlish. 🙂 Yesterday WAS HARD. We were at TCH all day. Jake looked bad. He was ashy and weak, his lips had no color, and he was lethargic and exhausted. I was terrified, and I think I had one of my first “in-Clinic”, full out, fall-apart days. It started with our wonderful NP, Peg, confirming my fear with, “He doesn’t look good, Mardon. We have the day to watch while he’s transfusing but I expect his fever is going to fully present itself so I’m going to call over to the 9th so they can prepare a room”. Thank God for our wonderful nurse, child life specialist and social work counselor. They just let me ball, off-and-on, all day. When we got there, Jake’s temperature was trending upward and with everything going on at home and the week ahead, I just couldn’t wrap my mind around the thought of another unexpected hospital stay – and that’s what they were prepping us for. (Oh, Kate and Ry were home sick and I couldn’t help either one of them). Jake’s cough was horrible and Peg said that he was exposed to RSV last week while we were admitted on the 9th. They didn’t know it then, but one of the kiddos was sick with it, and was in the playroom… we spent a couple of days in the playroom and it’s the likely culprit of Jake’s sickness. Because of this, we couldn’t hang in the infusion room, we were isolated in our own little room – completely understandable and frankly, it was nice and quiet since Jake felt so bad. As the day wore on, we watched his tem yo-yo. They juiced him with blood and platelet transfusions, and we waited. They called the 9th floor of West Tower and ordered a room and started the admit process. I kept saying, “let’s just see”. And, kindly, they did. By 5:00, the best words ever said… GO HOME! We grabbed everything and ran before they could change their minds. And today, here we sit, at home, still in jammies! (it’s 3:00 btw). Funny how transfusion will change everything for these kids. If you are a blood donor… let me say, THANK YOU! Your gift, gives our son life each time they hook him up. And it’s often! So now we head in tomorrow for tests and labs. To end… let me say how very, very much I appreciate all of you that are following Jake’s story. For all of you that shared the information I posted two days ago. it’s important and YOU are helping…. THANK YOU and GOD BLESS YOU for doing that. I have something else to share tomorrow, and I’m going to ask for your help again, I hope you don’t mind. In the meantime, Jake is maintaining his temp beautifully, I have the timer on the oven set to make him drink every hour, and he’s doing so much better today. Oh also, thanks to one of our nurses, Jake has a new fave drink… Dr. Pepper. Ugh… total sugar. But the cals and sugar are just what he needs so all of my mommy rules have jumped ship and Dr. Pepper it is!!! For now, Jake sits comfortably… happily… with all the things a

little boy finds important… a Dino book, his sister’s ear muffs, a throw up bag, and Captain America by his side. Today is a good day and we are blessed!!!!

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.

“Mommy, I just lub being home! And I really lub you!” I think if I write much more than that, I’ll cry. Just want you all to know that we’re home. He’s still having bouts of nausea and will for days until the Cisplatin is out of his body, but he’s doing well. He plays, he makes a run for the blue bags, then we play some more. So, so, so very happy to

be home! I’d like to ask you all to please pray for a new special friend, Mackenzie. She spent her 9th birthday on the floor with us this week. She’s on her second relapse, she’s just precious, and she’s having such a hard time knocking out her fever so they can begin her stem cell transplant. Her sister is her donor and I pray that God will give her and her family all they need to get through this time. I pray strength for Mackenzie to fight the fever that is putting her procedure on hold and prepare her body to fight hard with no complications or rejection. I’d also like to pray for Carson… his port came loose last night and chemo spilled under his skin and on it. These drugs can burn holes in your skin, cause horrible rashes and do awful stuff. We’ve met him twice now, he’s five years old, and such a cutie. Wishing God’s blessings and healing for them both.