Gage went in for another lumbar puncture. He came out without having got it done, because his ANC was still too low. But whereas last week when his counts were about 200 which means he is at a high risk for infection his counts today was 695 just 55 “points” away from being pass-able. So now we go back again, next week with fingers crossed and a quick prayer, that Gage will pass and we finally get into the maintenance portion of the chemotherapy treatment.
If for some crazy reason that he doesn’t pass and his ANC is not up to 750 by May 9 or his counts go down, Gage would be scheduled for a bone marrow aspiration for the following week. Because at that point there should be no reason for his counts to have not improved. So as long as they go up soon, I will be happy.
Gage and I at the clinic this morning. Waiting, always waiting.
I haven’t written in a while, mainly because I have been hopeful and not wanting to say anything to jinx Gage from finally reaching the maintenance portion of his chemotherapy treatment. It would usually take a person who has no complications in his chemotherapy six months to reach this phase but since Gage is basically Murphy’s Law when it comes to leukemia we are about eight and a half months in without starting maintenance yet. Yesterday Gage was supposed to have a lumbar puncture, but his ANC was too low, meaning Gage is at an extremely high risk for infection. So no lumbar puncture, which means no starting maintenance. Hopefully next week when we go back, his counts will be high enough and we can start treatment.
This is the second week in a row, that Gage’s counts have dropped. Hearing the doctors say, he looks great and telling us he should pass, instead we end up hearing that he “flunked” I hate this waiting, the not knowing. The wondering why his counts instead of going up this week they went down. Having to trust in what the doctor is saying but fearing for the worst. Putting on a brave face and a smile, telling our families this is normal, but never really knowing. Hoping what I am being told is true. Hoping what I am telling them is true.
On the up and up Gage’s hair has started to grow back, and he looks like a fuzzy headed baby chick, his hair is so soft and some bits are longer then the rest like a little comb over. I love to rub my fingers through it. It’s his favorite way to fall asleep. He is also so full of energy that I can barely keep up with him half the time, so I am hoping and praying and wishing that this is just a minor setback in the road to recovery; and that next week is counts are high enough to finally start maintenance.
“We be rollin’”
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Tagged cancer kids, chmotherapy, clinic, delayed intensification, Gage, hickman line, hope, hospital, leukemia, life, love, lumbar puncture, maintenance
Bath time in our house is a HUGE event. For Gage. Not for me. Gage loves baths, mainly because he only gets them once a week. Then he is only in the bath for like fifteen minutes tops, with no splashing. While during the entire bath I am freaking out, begging Gage not to splash, and telling him to “sit down before you fall down.”
Normally Gage would be able to take a bath for as long as he wanted to, heck I have had to refill the tub with hot water half the time, he can play in the water for hours. That all changed in December when, after careful consideration and tons deliberation Gages doctors decided to take out his port. Because no matter how hard we tried, and how much medication we pumped into him, Gage kept getting candida in his blood. So with fear and trepidation, we sent Gagers back into surgery to remove his port and replace it with a temporary hickman line. Which is a pain in the butt, not only because I have to drive to the hospital every three days to get the dressing changed, because it’s an open site. But also the site can not get wet. Hence the excitement of bath time.
I have concocted my own special, Gage is gonna have a bath dressing. Which involves saran wrap and surgical tape. Poor Kid he hates this, mainly because every bath he gets, I use half a roll of the saran wrap and a whole roll of surgical tape. But Gage gets his bath, the nurses get a clean smelling baby for clinic the next day, and everybody thinks I’m a good mother for making it possible to Gage to bathe; so everybody wins.
I was begging Gage to give me the bucket, since he is on steroids right now I have to ask nicely and make it seem like he totally wants to give me the bucket. Or he might go Linda Blair on my ass, and throw him self backward in the tub, his head might start spinning; and throwing up chemo medicine on me. Come to think of it, he does that when I don’t get his food to him quick enough too. But he did give me the bucket, nice and calm like; and so I gave him an extra fifteen minutes in the tub. Ain’t I just the nicest?
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Tagged bath time, broviac, cancer kids, candida, chemo, chmotherapy, clinic, CT scan, death, delayed intensification, failure, fear, fun, Gage, healing, hickman line, leukemia, life, live, love, lukemia, maintenance, normal, pancreatitis, panic attacks, picc line, port, sick, surgery, trepidation, trust
Gage started delayed intensification last Thursday. It was a long time in coming, six months in fact. Some days, I never thought we’d get to this point, and now that we are here I am scared of all the complications that can happen. I take his temperature like every hour just to make sure he doesn’t have some random fever. I call is doctors because his cough is back, and oh my gosh is that a rumble in his chest, did the cough move to his lungs? I have an overnight bag packed just in case we have to go to the hospital at the last moment.
The Delayed Intensification “road map” looks like this:
This is what Gage is going to be subjected to in the up coming weeks, he should also be receiving Pegasparaginase (PEG), which is two shots in his legs during week one. But he had the allergic reaction to the last shots of PEG he received, which in turn caused him to get pancreatitis and the ulcers on his pancreas that landed us in the hospital for three weeks before Christmas. So thank you Baby Jeebus, no more PEG shots!
Since starting delayed intensification, Gage has been so cranky. He is on seven days of dexamethasone, and seven days off for a couple of weeks and not only is he getting adorably chubby, since he is eating like a little piggy but he is getting not so adorably bitchy, as well.
His nick name from the hospital is back, we call him Ragin’ Gage. He screams and fusses all day long and as soon as Daddy comes home, he is all sunshine and lolly-pops. I have actually called the Hubs at work, in tears begging him to come home, because there is nothing I can do to fix Gages tantrums. I know it’s the medicines fault that he is acting this way, but after seven hours of screaming fits, all rationalization is out the window. Though the highlight to being at delayed intensification is once we are done with this round of chemotherapy we head into maintenance, which is kind of like the light at the end of the tunnel.
This is what Gage looked like last time he was on the dexamethasone. So cute and chubby! (sorry the picture is so blurry it was taken on my iPhone on zoom)
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Tagged broviac, cancer kids, candida, chemo, chmotherapy, Christmas, death, delayed intensification, failure, Gage, healing, hickman line, hope, hospital, leukemia, life, live, love, maintenance, pancreatitis, panic attacks, picc line, sick