Recovery Day 1

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Caid is doing really well. His pain is very minimal and he is happy, just a little pale. They checked his hemoglobin and hematocrit before discharge and they were good numbers, so he did not need any transfusions, thankfully!

Ian is doing well too, he is on IV nutrition now since he has basically not eaten in a few days, but that is very common with bone marrow transplant. The next few weeks he is the most vunerable, since his blood counts will continue to drop and‎…it takes time for Caid’s stem cells to start working. Ian will be most vunerable to infections, bleeding, mucositis, veno-occlusive disease and other complications in this time. Then once engraftment starts happening, which is Caid’s cells starting to work, they will be watching him for graft vs host disease, which is Caid’s immune system attacking Ian’s body/cells of all kinds because it recognizes Ian’s cells as foreign. This complication is minimized because they are siblings, and because they are both young.

Please continue to pray for Ian, because the next few weeks are really the most dangerous for him.

Transplant Day report

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Colleen here writing up this portion…

So yesterday was the big day.

I’m getting new bone marrow today!!

Caid went into surgery at 7:30 am to have his bone marrow removed. He had it extracted from the sides of his hip bones. They took 280 ccs–nearly a pint of liquid marrow–which is quite a lot as we were unsurprised to hear.  When he woke up the foremost concern on his mind was that he needed to play Wii…which made everyone happy!

post-surgery popsicle

run henry, run

Wren, Julie (Ginger’s sister), Henry and i arrived at CHOC yesterday around 11:30. We hoped Henry would nap on the way down but he insisted on talking to himself the whole time. First stop in the hospital was, of course, the gift shop…where we bought Caid a big stuffed shark, and Henry got his beloved balloon (his favorite word to say right now).

We had arrived just in time for Ian’s infusion with Caid’s marrow, and so once Henry and Julie were settled in the cafeteria Wren and i went upstairs to see Ian.

We walked into his room in the PICU to find Joey sitting and holding Ian. Also in the room were Papa Steve and 2 nurses, checking one of 2 bags of Caid’s bone marrow that was being infused straight into his body.

sweetest, most courageous one

He had vomited just before we arrived…from any number of things (chemo, exhaustion, etc) and was now fast asleep on Joey’s chest. We only stayed for a few minutes, as we knew how tired and immune-compromised he was…but we got to see his darling face and i was able to take some pictures.

snoozing through infusion

bag of marrow

checking the bag

…

A couple of hours later, after trying to find a place the family could all settle that night and finally getting poor Henry down for a nap, we went to see Caid. He was in a little room with his mom & dad, fresh from a long nap.

happy to have visitors!

time for pizza

i think this picture sums up pretty well why Caid is one of the braves, most awesome-est kids ever.

eating ice cream and watching dad play Wii fishing: “reel it faster, dada!!”

He loved his stuffed shark. Ginger asked him if he wanted to see pictures of how Ian is doing, and he nodded, yes. So showed him the pictures i took in Ian’s room, including the one of the marrow drip. “That’s your marrow, Caid!” i said. His eyes widened for a moment, and he nodded again. “I’m the one who had to give it to him, because he’s the only one that matches me,” he stated. Ginger smiled “and you’re the only one that matches him,” she said. “Because you’re brothers.” Caid nodded a third time.

More coming very, very soon~~cnp

quick update on Ian’s day

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Today Ian has been much better. He has only eaten a few bites for the entire day and he still looks pretty sick and is wiped out, but all that is to be expected.

His ANC, which is an important blood count they watch, dropped from 800 yesterday to 200 today. Anything under 500 means we are not allowed out of the room, but we would have been quarantined starting tomorrow anyway. The drop means the chemo is working to wipe out his bone marrow and blood system in preparation for transplant. So that is good results for the goal we are working toward, and also explains why he feels so bad.

Caid’s surgery is scheduled for 7:30 am tomorrow, and Ian’s infusion of the cells will probably be around 11 or 11:30 am tomorrow.

Difficult Day

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Ian just fell asleep now after a pretty miserable day.

He tossed and turned all night last night and I woke up to him wretching at 4 am. He wasn’t throwing up much, since he hadn’t eaten much, but he kept having waves of the nausea. He got back to sleep from 6 until 8 am, but then woke up the same way. We gave him a dose of Anti-nausea medication zofran a little early to help, but it didn’t really work. So next we gave him Ativan, which made him super hyper, but he ate and drank a little. Next they gave him a much stronger anti nausea med which i was told is more specific for chemo patients. He wouldn’t nap until late in the afternoon, but really crashed.

After two hours, I tried to get him to wake up, and he really wouldn’t rouse out of sleep. I waited a half hour and tried again, and called the nurse to ask her opinion and find out if any of the medications would be causing it, which they shouldn’t have been at that point. She checked him and spent a lot of time talking to me and reassuring me that he was probably just really wiped out from the chemo.

I waited another hour and then tried again and then really started to get scared that he was so lethargic. He eventually came around and perked up a bit, but then became really nauseated and inconsolable again. As much as I didn’t want him to have more Ativan, I really felt like it would be better than him being miserable. So we did another dose and he got crazy hyper again (which is actually the opposite of what it is supposed to do.)

We are done with the chemo, today was a rest day and so is tomorrow, but the stuff he had yesterday is really a strong and notorious kind of chemo, plus I have been told that sometimes there is a cumulative effect from having 6 days straight chemo prior.

I tried to think of it today as “working” to get ready for transplant, but it is so hard and exhausting to see Ian suffering and I get so scared now when my kids act super sick. It is especially hard since he is little and can’t tell me what is going on or what he is feeling so I am left to guess whether it is typical BMT related sickness stuff or some scary complication.

I am very thankful for the kind and patient nurse who took my fears seriously and spent a lot of time with us today. More tomorrow…

Transplant day -3

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dada’s phone is pretty cool

Today Ian got his first and only dose of Melphalan, the last chemo drug before bone marrow transplant on Friday.

His appetite has been slowly waning and tonight he didn’t really even want his bottle (which is usually something that he really loves and a big source of comfort for him). They are just keeping a close eye on his weight and caloric intake. Interestingly, patients going through bone marrow transplant need almost double their daily calories and protein, so they tried getting him to take a high calorie supplement drink today. He took the first one, but when I tried sneaking some in with his milk tonight, he wouldn’t have it. He didn’t do much with his regular milk either, since he’s probably just feeling nauseated.

Caid and the alligator lizard

Last night I talked to Caid about how he is going to help Ian since we had another blood draw, exam and a tour of the pre-op area scheduled for this morning. I told him he will help by giving Ian some of his healthy cells, since Ian has sick cells. Caid’s blood draw today was the third in the last couple of months, so he was pretty savvy about what to expect and he was not happy about it at all.

Papa Steve babysat Ian and Julie stayed with Henry at the house, so that Joey and I were both able to be with Caid for the appointment this morning. He made it through and got his clearance for Friday. He will not be going to school this week to avoid germs so we can go ahead on Friday with the transplant.

Thanks everyone for dinner help, prayers and babysitting!

brother love

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Ginger wrote this on Saturday accompanying this picture…

Caid is the best big brother Ian could ask for! Ian was so happy to see him when he came. When it was time to put on a mask to go for a walk, Caid was the example for Ian. Now he asked to push him, I can tell he is feeling very protective and missing him. I want to cry, he is so sweet.