I hope everyone had a good Fourth of July. I realize itâ€™s just another day for some of our readers, but for most it means celebration, a day off, a parade, and fireworks. Unfortunately we had none of the above. We did, however, have several visitors who got to see Eli in continued high spirits, which was fun. It also gave him some people to show off his â€œflag tattoosâ€ to. We even met another couple from Iowa City that were here visiting the 13 year old recovering from the stick in his eye downstairs. We were really looking forward to the Ames Fourth of July parade, itâ€™s always really good. There were fireworks in Iowa City that we could have seen from the roof of the hospital, but Eli had already fallen asleep and was getting his Day 2 chemo dose, so we made the executive decision to skip it. Weâ€™ll see if it comes up later today, if it does, weâ€™ll have a pretty disappointed 3 year old on our hands.
Speaking of chemo, that officially started on Monday night at 6pm (it takes 6 hours to completely drip into his system). That is considered â€œDay Oneâ€ of five days. From appearances, itâ€™s no different than anything else. Itâ€™s just yet another bag on his IV pole that is hooked up to his central line. Or as Eli refers to them, â€œmy pipesâ€. 🙂
We had a 1.5 hour â€œChemo 101â€ talk with a nurse educator Monday afternoon, but thereâ€™s more to learn. As youâ€™re probably aware, chemotherapy is a cocktail of drugs that basically kills cells in your body. It kills the good cells and the bad tumor cells. The idea is that the good cells will come back and replenish themselves while the tumor cells wonâ€™t. Thatâ€™s why you lose your hair, but it will come back. Lacey wants to buzz his hair when we get home so his hair loss in 2-3 weeks wonâ€™t be so traumatic for her. Thankfully heâ€™s a little boy that probably couldnâ€™t care less about having hair, except that when he drinks his juice he likes to run his fingers through it. Heâ€™ll just have to use momâ€™s hair instead.
Since chemo kills the good cells, it also means his blood counts go way down and he is much more sensitive to getting sick. While normally weâ€™d have enough white blood cells to fight off any little sniffle or cough, Eli wonâ€™t, so if he catches something, it can quickly become life threatening. I asked Lacey how long she thought it would take her to build the sterile padded room for Eli to live in for the next 2-3 weeks at home. You laugh, but I was only half joking. 🙂
â€œDay Twoâ€ of chemo was last night and it seemed to go well. One side effect of the medicine is nausea, and we have seen that he occasionally will throw up his oral medicine after he takes it, which of course means he has to take it again, which he doesnâ€™t like at all. If all goes according to plan, the last â€œdayâ€ of chemo will be Saturday night from 6pm-12am. Sunday will be a day of monitoring to see how he is doing and to watch his fluid/food intake without any nourishment from IV. We could potentially be sent home Monday. Weâ€™d be home for a 2-3 weeks, then be back for another 6 days in Iowa City to do Round 2 of chemo. There will be at least 5 rounds of that. Theyâ€™ll see how large the tumor is and think about surgery somewhere around Rounds 3 and 4. Today he has his MIBG scan to see exactly where the neuroblastoma tumor cells are.
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