Category: Mom’s Blog

We’re still here… tomorrow will be one week. We’ve now spent 19 of the last 25 days in TCH. The days are dragging and Jake is so puny and blah. They did an ultrasound last night to check his belly becuase he was complaining of tummy pain. GOOD NEWS… nothing new! Today they are doing another CT since he’s had fever for more than 5 days.

It’s “standard and precautionary” but they want to see if there is infection or fungus – eww – that could be causeing his fever. All standard things from wiping out the immune system. He’s still neutrapenic and we are on continued lock down. There are two notices on our door reminding staff of his condition – they are to enter in plastic gowns and gloves. Reminds me a little of ET. It’s for his protection but also for the other children on the floor. Since he has a virus, he’s contagious and that can be dangerous.. They say the first round of chemotherapy is often the worse becuase it is such a shock to the body, especially the doses and longevity that he was on the pole. Some have said each time will get better, some have said that each recovery is different. For now, I’m praying that the first is right… that this will be the worse… all other’s will be better.

On a lighter side… thank God for good freinds who bring chocolate cake and wine! Last night Michelle brought much needed giggles. Thank you also to Tracy King for the delicious cake and Amy Gross for the Kung Fu Girl… you girls rock! Today, Pastor John visited and it was nice to pray and just talk. What a blessing our church has been for us. Charlie’s mom also came to visit. It was short but sweet and I am so thankful for these little things. (BTW I really need a good workout… they need to give us one of these unoccupied rooms and let us moms do a little Beachbody workin’ out!) 🙂

We’re still hanging at TCH. Jake’s fever hasn’t broken and likes to hedge up to the high 104’s when the meds begin to ware off. We don’t have a release day in sight and I’m tired of guessing, so I let go and will try and go with the flow (as best as this OCD personality will do). I have a necklace that says “Let Go, Let God”. That’s one of the hardest things to do, but those 4 words remind me that I have NO control here and it is His battle. NOW for some GOOD NEWS… last weekend during our first chemotherapy stay, one of our nurses (fave nurse, Monica) kept telling me about a little boy and his family that she wished we could meet. This little boy and Jake share the same diagnosis,

Continue reading ““God Winks””

We left the hospital late last night… there were mixed opinions from a couple of docs on whether he should be released but when one of them came in and said, “if you’re ready, I’m ready to sign your release papers”, we both looked at each other and said “RUN!” He just laughed at us. Jake is still really weak but he’s eating (a little) and he needs to be home where he’s comfortable and not so edgy. We had to be back in Clinic this morning to check blood counts and they were doing his MIBG (like a PET scan). In all of the rush to begin treatments there are still a couple of tests that need doing. This one was in the Nuclear Medicine area – the basement. Kinda reminds me of the old cartoons we grew up on, with Wylie Cyote and others, and TNT explosions… all in the basement. The contrast die lights up the body like a Christmas tree to show all of the areas that are cancer ridden. We knew we’d see some areas we weren’t aware of because of the nature of this disease. The arms were of particular interest, as he has complained off and on with them lately. Henry wasn’t able to be at this meeting so Meghan came. Thank God and thank you, my beautiful Meghan! Seeing your baby put under by profofol, the “MJ DRUG” (as they jokingly refer to it), is scary. They inject and he’s out, as in one second OUT! It’s emotional and I’m so thankful she was there to hold my hand and catch my tears. The test took about 1 1/2 hours and when he came out of recovery we was ready to eat… Chick Fil A waffle fries and chocolate ice cream from the hospital cafeteria! And we DID! By then it was time to head on up and check out the scans. As they pulled them up, they again went into prefacing mode. I’m learing certain mannerisms already and I could tell they felt they hadn’t prepared us well for this or maybe it was themselves that were unprepared. The screen was LIT! The cancer is everywhere. All of his bones. His skull, eye socket, jaw bones, arms, legs, spine…. everywhere. I know she could see my shock as I zeroed in on the skull bones. She was quick to tell me it isn’t the soft tissue, not the brain, just the skull. I’m sure that’s supposed to be reassuring but at that moment, it

was all overwhelming. We spent a lot of time talking about what it all means and they are still so encouraging that the chemotherapy will take care of these areas. I’m glad, I need their optimism because today was another one of those “unexpecteds” that keep knocking us to the floor. His counts did show low so they are on the decline. They drilled us with the fact that fever means ER. NO chance. NO waiting. Just go! …Got it! Dr. Foster will be out of town this week so she wanted to be sure we understood that this is the week his counts bottom. He is on lockdown. The GOOD NEWS… we went home! We slept in our own beds and we spent time with his brothers and sisters and Gunner! God is good, we get some time at home!