Nico “made counts” on Sunday, which means that his neutrophils and platelets were high enough to safely administer more chemo. The interim maintenance phase seems fairly intense so far. On Monday, Nico had a lumbar puncture with more chemo injected into his cerebrospinal fluid, a bone marrow aspiration (to see how things are going in there), Vincristine IV (the drug that makes it difficult for him to walk and causes him a lot of jaw and leg pain), and high dose Methotrexate IV. The Methotrexate is why we will stay in the hospital for several days, and is another result of being high-risk. First they had to alkalinize Nico’s urine by giving him bicarbonate through his port until some cotton balls we stuck in his diaper hit the right pH (a very sophisticated technique – wringing out pee-soaked cotton balls). Then they started the Methotrexate and that ran over 24 hours. The Methotrexate is nasty. It is excreted in urine so we cannot even change his diapers without special gloves. Nico’s diapers have to be changed every two hours around the clock to monitor both the pH of the urine (it is vital to protect his kidneys) and to make sure the Methotrexate does not remain on his skin long enough to damage it. We will have to stay here until all of the Methotrexate clears his body and that can take several days (all the while still doing this every two hour diaper exercise). Sounds like fun, huh?
The start of IM marks the start of the treatment clock. “They” always say that treatment for ALL in boys is three years, but those three years do not start until the beginning of IM. So this is a milestone of sorts.
There have been a lot of ups and downs over the last three days. Things just do not go smoothly when you are injecting a two-year old with poison. We had a scare last night just as the Methotrexate finished. Nico started coughing pretty violently and then seemed to pass-out. I got a bit frantic, but he is fine this morning and acting like his usual hilarious self. We just take it hour by hour and jump the hurdles as they come. It has been more difficult for me this time around because Jeff must work and I am mostly on my own (this is very difficult for Jeff, too). Thankfully, we have had a great nurse for the last three days. We all seem to be on the same page. She has almost 30 years of experience as a nurse, and she still cares about her patients! This is rare I think, and I am so grateful for her. I asked our oncology team if there was any way to “assign” her to Nico so that she is forced to take care of us at every hospitalization even if she would rather not. J I was told that she is specially trained and has to be assigned to the sicker kids when they come in, so we might not get so lucky again. We will see about that! At this point, I am completely comfortable forcing someone into indentured servitude via whining and complaining since nurses are not created equally. And by the way, when I told her the caliber of nurses varied greatly, she responded, “Tell me about it! I have to work with them!” Love her.
Anyway, Nico’s neutrophils are almost normal right now, so we get to play in the playroom. Yippee! This is a lot fun for Nico, and I am overjoyed to see my baby boy playing. I cannot really say that he is playing with other kids as much as bullying them, taking their toys and claiming the entire gym as his kingdom. Yes, he is two-years old, but it is clear that he has not been around kids for a while. Luckily, my little angel did not permanently damage any of the other children, but there are probably a few kids that won’t remember “Kid Zone” as fondly because of him. Meh.
As always, thank you for your love and support. We have failed to individually thank people the way we want to, and it is not because we are not appreciative, it is just that we are totally rude (and maybe just a tad overwhelmed too). But we feel your caring concern and it sustains us - loving you back!
The start of IM marks the start of the treatment clock. “They” always say that treatment for ALL in boys is three years, but those three years do not start until the beginning of IM. So this is a milestone of sorts.
There have been a lot of ups and downs over the last three days. Things just do not go smoothly when you are injecting a two-year old with poison. We had a scare last night just as the Methotrexate finished. Nico started coughing pretty violently and then seemed to pass-out. I got a bit frantic, but he is fine this morning and acting like his usual hilarious self. We just take it hour by hour and jump the hurdles as they come. It has been more difficult for me this time around because Jeff must work and I am mostly on my own (this is very difficult for Jeff, too). Thankfully, we have had a great nurse for the last three days. We all seem to be on the same page. She has almost 30 years of experience as a nurse, and she still cares about her patients! This is rare I think, and I am so grateful for her. I asked our oncology team if there was any way to “assign” her to Nico so that she is forced to take care of us at every hospitalization even if she would rather not. J I was told that she is specially trained and has to be assigned to the sicker kids when they come in, so we might not get so lucky again. We will see about that! At this point, I am completely comfortable forcing someone into indentured servitude via whining and complaining since nurses are not created equally. And by the way, when I told her the caliber of nurses varied greatly, she responded, “Tell me about it! I have to work with them!” Love her.
Anyway, Nico’s neutrophils are almost normal right now, so we get to play in the playroom. Yippee! This is a lot fun for Nico, and I am overjoyed to see my baby boy playing. I cannot really say that he is playing with other kids as much as bullying them, taking their toys and claiming the entire gym as his kingdom. Yes, he is two-years old, but it is clear that he has not been around kids for a while. Luckily, my little angel did not permanently damage any of the other children, but there are probably a few kids that won’t remember “Kid Zone” as fondly because of him. Meh.
As always, thank you for your love and support. We have failed to individually thank people the way we want to, and it is not because we are not appreciative, it is just that we are totally rude (and maybe just a tad overwhelmed too). But we feel your caring concern and it sustains us - loving you back!
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