Round 4 & Radio Lollipop

Here we are again… TCH for chemo… Round 4. Jake’s been off a bit this stay.

Last night was a long one as Jake spiked fever all night but as the sun came up, so did a new day, new hope and NO fever. My scripture reading today said… “Search me, O God, and know my heart; test me and know my anxious thoughts. See if there is any offensive way in me, and lead me in the way everlasting.” Psalm 139:23-24 Anxious thoughts? Who me? After a night of little sleep and much worry, He gave me just what I needed to be reminded that He brings us “hope” and he can change our hearts and all that is negative and worrisome within us with just a turn of the corner, a prayer, or a new day. Thank God for new days! Now, if Jake will just stay fever free so we can stay on target with his chemo and discharge date. They’ve temporarily stopped his chemo for a few hours to give antibiotics. Can’t run them both in the same lines through his port so it’s one or the other. Just in case, he’s hedging toward and infection, the antibiotics win out. They are running cultures to see what spiked it but any number of things, from the chemo itself to a UTI can do this. Especially since one of the chemo drugs he’s on is not kind to the bladder. This stay has been bumpy from the start… not sure if it was the nice long stay we had at home that had us not ready to return or the fact that he has been poked and accessed so much in the past month that he’s just had it. His port access during admission took 4 nurses, me and Daddy. In the end, they wrapped him in blankets to “taco” him so he couldn’t hurt himself or any of us. It was HORRIBLE and traumatic and everybody on the floor heard it or heard about it. After they unwrapped him, he came out swinging, caught me in the cheek, then he crumbled and cried for almost an hour, only to sleep it off for about two hours.

The fact that they know to do these things says that this is not unusual. These kids hit their breaking points just like we would but their age and inability to communicate makes it so much harder for them. Our Child Life Specialist, Saraben, is absolutely wonderful with Jake and he is so comfortable with her. She is so very good at what she does, is on the mark everytime, and so gentle and calm with him. She spent a good amount of time with him after he woke up and then with me to talk and reassure me that this is normal for this stage of the game and it will probably get worse before it gets better, especially as we come up on his Stem Cell Transplant. She did say that he will have a PIC line put in for transplant, in addition to his chest port, so for a good month and a half of that time, no pokes – thank goodness! He did get to put his own meds into his line yesterday and that was a highlight and an opportunity to give a little control back to him. Thankfully, Kate and Emma are here for the weekend to keep him company. Saraben also gave the girls window markers and they’ve had the best time drawing all over the windows and Jake’s door. Even Jake made a big smiley face on the window. When we leave this room, the cleaning crew is going to love us! AND… there is recording studio here where patients and siblings can record music so the girls got a taste of what it’s like to go into a music studio and had a blast recording a song for Jake. He even has a little cameo at the end. They’ve played it over and over, and are looking forward to recording more songs. TCH has their own TV/music station called Radio Lollipop, where patients can request their favorite music or ask to have their own song played on the station… wonderful little perks of how much TCH loves their kiddos. (I will try to get a link up to showcase our rising stars!) Our kids go back to school next week and I’m NOT ready. In fact, Jake and I won’t be home yet so Daddy gets to help them start the new year, back-to-school, routine. It was nice to have some time with all of us home together as it seems like the past few months are a blur and we really needed some time together to just hang out and do nothing…. praises for that! As for now, Jake, Kate and Emma are all sleeping, I have my coffee and my devotion, it’s quiet and dark, and there is silence and peace. I’ll update sooner this time but for now, please pray with us that Jake’s fever is gone and that the next couple of days are better for him, and praise God for this new day. Hoping you find rest today and big things to praise and smile about. As Emma reminded me, it takes 43 muscles to frown and only 17 to SMILE! =D