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Today Is A Good Day

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

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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!!!!

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“Lub”

“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

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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.

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Came and Went

So our first inpatient holiday came and went and we were released late Friday afternoon. Our special weekend with all of our visions and plans and expectations got off to a rocky start but it definitley finished well. We were able to have a belated Thanksgiving dinner on Saturday with my mom, and Papa (Henry’s dad). We did get the Christmas tree up and although we weren’t able to celebrate Meg’s birthday as her family was under the weather, we were home in time for Ryan’s. And… we had a wonderful visit from dear friends, the Byrd family. Davis and his baseball team won their season and Davis wanted to honor Jake with his trophy. Davis has been sharing Jake’s journey with all of his friends and handing out bracelets… just look at this awesome picture of all these handsome and excited boys with their trophies and their “Make Cancer Extinct” Jake Bracelets. They have been praying over Jake as a team… what a tremendous thing for this mom to hear, that these young boys in Midland, Texas pray over our son regularly. I picture angles circling Jake each time there is a prayer said for him and rejoicing when it is from children for children’s prayers are the most inoncent and special. It was such a happy visit and I loved how Davis just sat right next to Jake and started playing, never missing a beat! Some of his friends are stand-offish. They don’t know what to say or do with him… a little afraid… he doesn’t look like the Jake that they know. Davis came in and just started playing and talking and laughing with him. As I’ve played those visions over and over the past couple of days, it has made my heart so very happy. These are the little blessings of goodness that you find in days like these… thank you Davis! We went in yesterday for labs and were relieved that it was a short day and his numbers are on the rise. That means we head back in Thursday for Round 3. It’s already time again. This round will be new chemo drugs. So far we’re 2 for 2… 2 chemos, 2 unplanned neutrapenic fever hospital stays. We’re hoping that this next 3 weeks goes better. It will be another 72 hour infusion and we ask your prayers over his stay. The intensity and types of drugs that these children endure is often more severe than that of adults. Their little bodies somehow handle it better than our older, more contaminated bodies, so they hit them with all they have. It’s always tricky and dangerous. The side effects can be horrible, even permanent and lifelong. The risks are always high and we walk in never knowing how his body will handle these treatments. Even the same drugs can have different outcomes… it really is all a big lab experiment. This treatment puts us out on Monday, which means by our tentative schedule we will be back for Round 4 December 20th with a release of the 24th, Christmas Eve. What a gift that will be, to be home for Christmas. Of course, it’s all day-by-day. We will be praying for a Christmas at home for sure. But we have a friend that won’t be, and I ask

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your prayers for a little boy named Charlie. I’ve mentioned him before. He started his stem cell transplant today. He will be in isolation for 30-45 days, that means Christmas will be spent away from his home in TCH. As Charlie’s parents said in his blog, “Charlie is going to walk a path that few others have to walk. He is going to walk to the edge of death, and from there he will be rescued back”. I can only imagine the fear and anxiety that his parents will be facing, the readiness for this part of the journey to be over; we too, will soon travel this path with Jake and my chest tightens and eyes swell just writing those words. It is something we know is coming, it’s tucked away but it lurks and we try not to think of it too much yet, for we must push through these early days – that’s a hurdle we’ll jump when we get to it. Right now, I pray for strength for Charlie and his family. Please pray with me for Charlie. Please pray each day for him. Through their waiting, I pray for Charlie’s healing, for comfort, and for the BEST Christmas ever… for our Healer to grant them their greatest Christmas wish. “I am still confident of this: I will see the goodness of the LORD in the land of the living. Wait for the LORD; be strong and take heart and wait for the LORD.” Psalms 27:13-14.