Phase Two

This past week has been a rough one. After our lovely long weekend at home, we returned to the Oncology unit Monday night, they took Sebastian's blood and his neutrophils were 1400! Well above the 750 count needed, he was ready for his next Chemo phase to start. Bash went for his bone marrow aspirate and lumbar puncture Tuesday morning. It went really well, he was given the Intrathecal Methotrexate in his spinal fluid and once back in his room they went ahead with his IV Methotrexate (MTX), it runs for 24 hours and they run intravenous fluids called Sodium Bicarbonate with it to help break down the MTX. This chemo is extremely hard on the body and we want to get it out as fast as it goes in. He tolerated the first 24 hours so well, started to get a bit puffy from all the fluids on Wednesday.

By Wednesday evening his kidney function was starting to show signs of strain. The Leucovorin drug he was getting to help rid his body of the MTX wasn't working well. His little body showing all the symptoms of chemo toxicity. To protect his kidneys and other vital organs, a special medication called Glucarpidase (an MTX antidote also known as Carboxypeptidase) that they didn't have on hand was ordered from Vancouver. Bash was put on cardiac monitoring overnight and his blood drawn every 6 hours to check that the MTX levels were dropping. Here is a great article I found that explains how these drugs work for all those curious.

Thursday morning he looked like the Michelin man, so puffy his right eye almost wouldn't open. His skin started showing signs of breakdown, anywhere he had a bit of irritated skin seemed to flare right up. He has a blister on his thumb, and red sores on his fingers and toes. He started refusing to eat anything, including breast milk. I have been so worried about him getting a nasogastric tube, and have been trying everything to keep his weight up (full fat yogurts, even ice cream). As much as it hurts my heart, an NG tube may be a blessing in disguise, We're also worried he isn't getting the proper nutrition that he needs to stay strong.

Friday he started looking less puffy. His MTX levels had come down significantly but were still high, and intravenous hydration continued. The doctors increased his Leucovorin from every 6 hours to every 3 for Friday and Saturday. Bash continued to show signs of skin breakdown and was now refusing to take his medications he has been previously so great at taking. He was irritable and seemed to be feeling nauseated. As he can't tell us how he's feeling, it's a real guessing game choosing what medications would help him feel better.

On Saturday night Bash awoke with blood curdling screams, I quickly swooped him up, but no amount of cuddles would soothe him. I was terrified that something was really wrong, our nurse heard his cries and came to see him promptly. He was gagging and dry heaving and crying so hard. We both decided to give Gravol and Tylenol ASAP and she ran to grab both. Bash continued to cry and I'm sure he woke up the whole unit. He finally settled back down, I held him very closely for a long time, my heart ached for him and I would have kept him next to me in my bed if I could. Only 3 hours later he awoke with the same horrifying scream and started choking and gagging, vomiting up a huge ball of mucus. The nurse came quick again with meds in hand, and thought he must be pooling mucus secretions while he was sleeping and that mucositis - another side effect from MTX toxicity was starting. He held on to me so tightly and did not want to let go, it took everything in me not to break down sobbing - I want to stay strong in front of him. I raised up the head of his bed to hopefully help his secretions.

Sunday the doctors thought about giving the Glucarpidase again as his MTX level still wasn't cleared out, but changed their minds and kept up the Leucovorin. His puffiness decreased quite a bit but he still looks different and his weight is up by a kilogram. It is unusual for it to take this long to clear the MTX level - I thought we would have been spending another weekend at home. Because it's taking so long to clear, we may have to postpone his next cycle and let his body recover first. We asked the doctors if they would skip this dose as he is to get this drug on day 1,8, and day 15, protocol says not to skip any as it could put him at risk of not being cured, which I completely agree with. We also asked about a change in the dose, is this too high an amount for him? The doctors said they will review the protocol but likely they will just push more fluids earlier next time and have the Glucarpidase on hand and available right away. Appears that our 3 week in-patient stint will be much longer than anticipated and unfortunately no passes as he needs around the clock IV fluids and medications. His electrolytes have been thrown off by all the fluids as well and he has needed a few infusions of magnesium and potassium as they have been dropping frequently.

Today (Monday) his MTX level was so close to being cleared, it's currently sitting at 0.19 and needs to be 0.1. His skin breakdown remains, but is no worse except for some mouth sores starting to pop up. We are putting Polysporin on his sores, and doing a mouth rinse 4 times a day when he'll tolerate it. Tylenol around the clock and Morphine when he needs it. He still wakes up after long naps with excess mucus accumulation, and we have suction set up at his bedside. Today after a nap he started choking and couldn't breathe for what seemed like eons (was really only a few seconds) - he scared us really badly. Crossing our fingers he is clear by morning and the next treatment goes better than this one. Two more rounds for this phase.