We are home. This round was a lot different than last, but we are still early into the week. Our big problems last time did not start until day 4, which is today for this round. The oncologist decreased Nico’s dose by 25% as discussed. There is a lot to say, and I am too exhausted to explain it all, but looking at Nico now, it really is possible he had a stomach virus last time. There is a possibility that we will resume 100% of the dose next time, but that will all depend on his blood work. Our doctor and nurse practitioner are watching Nico closely, taking extra precautions, and we feel like we are medically in good hands.
Nico gets a chemo that I particularly hate called Vincristine. I guess it is a love/hate relationship because obviously this monster of a drug is also saving his life, and it is one of the drugs that he gets the most. Vincristine can cause a lot of ugly long-term problems. In older children, it is not uncommon for them to require hip replacement surgery after treatment specifically from the Vincristine. In both young and old kids, it is not uncommon for Vincristine to cause a permanent limp due to neuropathy. The pain from the neuropathy can last years after treatment has stopped. In the short term, it causes jaw and long bone pain (among other things). When Nico was first diagnosed, I noticed that he was less active after getting it. But as a parent with a younger child, the side effects of the drugs are downplayed and you are reassured that it is the older kids that have more of the ugly issues. Initially I did not worry too much about it, but early on (based on something a mom on the listserv said) I decided to give oxycodone to Nico after his dose of Vincristine just to see if it helped. I could not believe the difference. Rather than making him sleepy, the narcotics helped him to act more like a kid. After I realized that Nico’s pain looks more like lethargy I started regularly giving him oxycodone for about 48 hours after his doses of Vincristine.
I am told at his age, Nico will not and really cannot verbalize when he is in pain. But as he has gotten older (we are in our 6th month of treatment as of yesterday), he has shown more obvious signs when he is uncomfortable. For example, after he gets the Vincristine, he clicks his jaw and pulls on his teeth. A couple of times he has actually told me that his teeth hurt. I give him oxycodone when he does this. He becomes less active still as well, and I give him oxycodone when it is noticeable. But you always fear you are overmedicating your child and the oxycodone actually makes him really grouchy too. So, you try to balance it.
So tonight, as I was trying to help him fall asleep, he was really resisting, but this is not uncommon for a two-year old. Then I noticed his skin was a little clammy. The Methotrexate is really nauseating, so I kept asking him if he felt “barfy”. He told me no. But the way he was fidgeting, I knew there was something else. It has been over 72 hours since he got Vincristine, so I was focused on the Methotrexate. Finally, I just asked if something hurt. Nico whispered, “just my legs.” I do not cry very often believe it or not, but this opened floodgates. The way he confessed, and it was a confession because he hates taking pain medicine, like it is usually so much more than “just” his legs. It broke my heart.
People try to ease the burden that Jeff and I carry for our son by telling us that Nico will grow up to be a strong and resilient man. And he will be, and these words are actually comforting. But make no mistake, my baby, my two-year old, is suffering and will continue to suffer into the future. Tonight I was reminded of what my friend Jackie (whose own daughter also battled cancer) wrote to Nico on my Caring Bridge guestbook so many months ago: Your Mom and Dad would love to take your pain away and take the disease upon themselves so you can have a normal life...
Yes, Nico. We would love to do that. We would do anything to do that. But my son, you have to fight this alone, and all we can give you is our never-ending love and support. We love you so much, Nico and watching you hurt is the hardest thing for us in the world.
I just want this part of our lives to become a memory, a distant memory.
Nico gets a chemo that I particularly hate called Vincristine. I guess it is a love/hate relationship because obviously this monster of a drug is also saving his life, and it is one of the drugs that he gets the most. Vincristine can cause a lot of ugly long-term problems. In older children, it is not uncommon for them to require hip replacement surgery after treatment specifically from the Vincristine. In both young and old kids, it is not uncommon for Vincristine to cause a permanent limp due to neuropathy. The pain from the neuropathy can last years after treatment has stopped. In the short term, it causes jaw and long bone pain (among other things). When Nico was first diagnosed, I noticed that he was less active after getting it. But as a parent with a younger child, the side effects of the drugs are downplayed and you are reassured that it is the older kids that have more of the ugly issues. Initially I did not worry too much about it, but early on (based on something a mom on the listserv said) I decided to give oxycodone to Nico after his dose of Vincristine just to see if it helped. I could not believe the difference. Rather than making him sleepy, the narcotics helped him to act more like a kid. After I realized that Nico’s pain looks more like lethargy I started regularly giving him oxycodone for about 48 hours after his doses of Vincristine.
I am told at his age, Nico will not and really cannot verbalize when he is in pain. But as he has gotten older (we are in our 6th month of treatment as of yesterday), he has shown more obvious signs when he is uncomfortable. For example, after he gets the Vincristine, he clicks his jaw and pulls on his teeth. A couple of times he has actually told me that his teeth hurt. I give him oxycodone when he does this. He becomes less active still as well, and I give him oxycodone when it is noticeable. But you always fear you are overmedicating your child and the oxycodone actually makes him really grouchy too. So, you try to balance it.
So tonight, as I was trying to help him fall asleep, he was really resisting, but this is not uncommon for a two-year old. Then I noticed his skin was a little clammy. The Methotrexate is really nauseating, so I kept asking him if he felt “barfy”. He told me no. But the way he was fidgeting, I knew there was something else. It has been over 72 hours since he got Vincristine, so I was focused on the Methotrexate. Finally, I just asked if something hurt. Nico whispered, “just my legs.” I do not cry very often believe it or not, but this opened floodgates. The way he confessed, and it was a confession because he hates taking pain medicine, like it is usually so much more than “just” his legs. It broke my heart.
People try to ease the burden that Jeff and I carry for our son by telling us that Nico will grow up to be a strong and resilient man. And he will be, and these words are actually comforting. But make no mistake, my baby, my two-year old, is suffering and will continue to suffer into the future. Tonight I was reminded of what my friend Jackie (whose own daughter also battled cancer) wrote to Nico on my Caring Bridge guestbook so many months ago: Your Mom and Dad would love to take your pain away and take the disease upon themselves so you can have a normal life...
Yes, Nico. We would love to do that. We would do anything to do that. But my son, you have to fight this alone, and all we can give you is our never-ending love and support. We love you so much, Nico and watching you hurt is the hardest thing for us in the world.
I just want this part of our lives to become a memory, a distant memory.
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