The many faces of Jack......
TLeft: "how much more medicine to I have to take?"
TRight: "does this face creep you out, like I'm in a scary movie?"
BLeft: "sure, I would love you forever if you got me some more gummy bears!"
BRight: "do you always have to ask how much I went to the bathroom?!"
Let's see... what did we do all today.
- Dressing change. Thumbs down on that. His skin is pretty red and sore - so we switched to a sensitive skin dressing to see if that helps.
- Labs came back. White count has taken a huge nose dive. The week of chemo brought them down and then last Wednesday we started the Neupogren injections. His counts were climbing like no other, Friday: 24,000. Today 200. Red and platelets are also down - blood transfusion tomorrow.
He still has pretty good color - usually when his counts are low, he gets pretty pale, tired, won't eat.
Today we had a chat with the doctor - he's loosing weight every day. Last night was 44lbs... today I'm guessing lower. As of 6PM, he's ate maybe 300ish calories. Really has no appetite. NG tube tomorrow. (Tube through his nose to his stomach - that's how he'll get his nutrition and meds. He can still eat too.) They'll give him some med to make him loopy/drunkish and then it's pretty quick. (nothing is really quick to a 7yr old, except a second.. should be interesting. I'm voting for an extra loopy med, maybe one for me too.)
All the blood stem cells have found their way into the bone, are seeded and we just wait for engraftment. As early as 10 days, but typically 15 - 20. A bit scary to think we have 10+ days with no white cells to fight any infection. They keep a close eye on fever - any anything over 100.3, blood cultures are collected and if needed, antibiotics are given. He had a fever last night - 100.4, they rechecked 45 minutes later and it was down to 99.6. This is the sucky part.. along with other side effects. We're just rolling with it .. the ups and downs, knowing that this is just temporary and fingers crossed we're out of here by the end of the month.
Today I'm grateful for:
- little dude spirits and sense of humor are high,
- coat hangers - Tibor (thank you very much) brought some up. This living out of a suitcase is for the birds. All our clothes are either hung up or folded nicely. I tell you ... it's the little things around here.
- green tea - this is my new afternoon drink. My treat to my self... I think I deserve one.
- Tibor and Chase - hooray, you went to the grocery store! Chase (on spring break this week) - please call me and we'll Face Time, I'll teach you how to cook for dad. It's quite simple and I'll be so proud of you! :)
TLeft: "how much more medicine to I have to take?"
TRight: "does this face creep you out, like I'm in a scary movie?"
BLeft: "sure, I would love you forever if you got me some more gummy bears!"
BRight: "do you always have to ask how much I went to the bathroom?!"
Let's see... what did we do all today.
- Dressing change. Thumbs down on that. His skin is pretty red and sore - so we switched to a sensitive skin dressing to see if that helps.
- Labs came back. White count has taken a huge nose dive. The week of chemo brought them down and then last Wednesday we started the Neupogren injections. His counts were climbing like no other, Friday: 24,000. Today 200. Red and platelets are also down - blood transfusion tomorrow.
He still has pretty good color - usually when his counts are low, he gets pretty pale, tired, won't eat.
Today we had a chat with the doctor - he's loosing weight every day. Last night was 44lbs... today I'm guessing lower. As of 6PM, he's ate maybe 300ish calories. Really has no appetite. NG tube tomorrow. (Tube through his nose to his stomach - that's how he'll get his nutrition and meds. He can still eat too.) They'll give him some med to make him loopy/drunkish and then it's pretty quick. (nothing is really quick to a 7yr old, except a second.. should be interesting. I'm voting for an extra loopy med, maybe one for me too.)
All the blood stem cells have found their way into the bone, are seeded and we just wait for engraftment. As early as 10 days, but typically 15 - 20. A bit scary to think we have 10+ days with no white cells to fight any infection. They keep a close eye on fever - any anything over 100.3, blood cultures are collected and if needed, antibiotics are given. He had a fever last night - 100.4, they rechecked 45 minutes later and it was down to 99.6. This is the sucky part.. along with other side effects. We're just rolling with it .. the ups and downs, knowing that this is just temporary and fingers crossed we're out of here by the end of the month.
Today I'm grateful for:
- little dude spirits and sense of humor are high,
- coat hangers - Tibor (thank you very much) brought some up. This living out of a suitcase is for the birds. All our clothes are either hung up or folded nicely. I tell you ... it's the little things around here.
- green tea - this is my new afternoon drink. My treat to my self... I think I deserve one.
- Tibor and Chase - hooray, you went to the grocery store! Chase (on spring break this week) - please call me and we'll Face Time, I'll teach you how to cook for dad. It's quite simple and I'll be so proud of you! :)
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