As planned, we went to the hospital Saturday morning. Since the clinic is closed on the weekend, we got outpatient treatment on the inpatient ward which means a comfier bed for Eric and comfier recliner for me. Eric had to have his port accessed. He had numbing cream on and said at least the inpatient nurses are good at it (as opposed to the ER) but when it came time to access, he freaked out a bit. His nurse did a great job and the access went very smoothly. She did the bloodwork and platelets arrived quickly. Eric's Oncologist was working this weekend so he came by to review the bloodwork with me. Blasts were about the same and liver was slightly improved again. After the platelets, he had the chemo. This is a more intense chemo, but his doctor has ordered a low dose so it is actually done as an IV push over one minute. The whole time we were there, Eric was excited to go to Balding for Dollars and get a snow cone! It is a fun event with games, prizes, mascots, and food, but Eric's favourite part is the snow cones. We walked over and... no snow cones this year!!! Eric was so sad. He'd been looking forward to that for months. They did have ice cream, but Eric didn't like the flavour choices so he had a cupcake and then we left pretty quickly. It was very hot out and standing/walking has been difficult for him. He is having a fair bit of pain in his side and shoulder blade. It seems to be like the leg/groin pain of a few weeks ago, so his Oncologist thinks it is probably the blasts causing him the pain. Shortly after we got home Uncle Jon and Auntie Becky arrived from Prince George for a visit.
Sunday morning Chuck took Eric to the hospital. Eric usually won't let anyone but me go with him, even his dad, if he has to be accessed. However, since he was already accessed from the day before, he was happy to go along with his dad. As long as we (Uncle Jon & Auntie Becky) didn't do anything fun without him. They were there a little over an hour. He really only needed the chemo on Sunday, but they were waiting for the bloodwork results. Eric's Oncologist needed to make sure everything looked good because if it didn't, he would be admitted.
Monday morning Eric let Uncle Jon and Auntie Becky take him to clinic, since he was already accessed. His hemoglobin had dropped a little over the weekend, so he was planning to get a blood transfusion, in addition to the chemo, which made for a long day for them. It was amazing for me to get a day back and I puttered around the garden and the house all day. Unfortunately, Eric's blast count has not dropped, after 2 doses of the chemo and we had expected it to. Eric is still very ache-y and even woke up in the middle of the night from the pain. Grandma arrived via airplane mid-day and was able just to Uber to the hospital and catch a ride home.
Tuesday morning I am back on duty. Grandma came with Eric and I to the hospital to keep us company while Jon and Becky took Millie out for a walk. Eric did suggest that Uncle Jon walk Millie and Auntie Becky stay so they could play on their iPads together. After getting platelets on Saturday, we were off schedule, so had planned ahead to get the platelet transfusion on Tuesday, along with the chemo. 3 doses of chemo and the blast count is still not dropping. It feels like this round of treatment is not working at all. As a stronger chemo he hasn't had in 3 years, I just assumed that it would work and that it would take Eric's aches and pains away, along with the blasts. It is extra hard to have your kid pumped full of poison when it doesn't even work. My pity party was short lived though because after clinic we went for pedicures with Grandma and Uncle Jon and Auntie Becky. It was Eric's first pedicure and, despite the picture where I surprised him, he loved being pampered. He and Uncle Jon got matching blue toenails.
On Wednesday Uncle Jon, Auntie Becky, Grandma and MAMA (!!!) got on a cruise. It's just a wee little cruise; 3 days from Vancouver to Seattle to Victoria and back to Vancouver. But first...back to clinic for the last day of this round of IV chemo. It was a bit chaotic because Grandma was with me to head to the cruise and Granny met us at the hospital to take Eric home and look after the family for a few days. It was just bloodwork and chemo so we were done pretty quickly but had to wait for the bloodwork results before we could leave and the team wanted me to speak to another Oncologist who specializes in pain management. We had a good chat and she gave us a plan to help manage Eric's pain. The bloodwork arrived and finally the blasts had come down the littlest bit.
Thursday I was docked in Seattle where it was quite warm in the sun so I hung around the pool and drank the best margaritas! Meanwhile Granny took Eric to the Lego store and spoiled him rotten. I know because he texted me progress updates. By the next morning, he had finished the 2000+ piece set.
It seems like it was a good way to celebrate his first day off from the hospital after 6 days in a row there. I am also pleased that he was able to sit up and build that long. It seems like the pain management plan was working.
Since I was still on the boat, and Eric had chosen to remain accessed, Chuck took Eric to clinic that day. First thing I got a text from Chuck about an antibiotic resistant bug they'd found earlier in the week. Luckily, while Eric was at clinic that day, he didn't use the affected washroom and they were able to clear him. That's the first time that has happened to us and it was terrifying, even though it was short lived. Eric had a platelet transfusion and his Oncologist reviewed the bloodwork with Chuck. Blasts were down a little more but liver slightly angrier. He was asked to reduce the dose of the oral treatment that we had increased a few days before. We also finally got our hands on the additional treatment that had been approved almost 2 weeks before. We'd been waiting to hear from the special pharmacy for awhile and of course I got the call as I was waiting in line for security and customs for the ship. Luckily they deliver directly to the house so Chuck was able to bring it in Friday to review with the Oncologist and Eric started it that night. This is the one that is supposed to treat the mutation that was recently discovered. Eric's Oncologist is very optimistic about it. Despite that, this last few weeks have been very tough and his Oncologist has started talking seriously with us about a second transplant. We may not be able to put it off much longer, but I am still hopeful this treatment will work and allow us to be in a better, more stable place than we have been recently.
I arrived home on Saturday afternoon, just in time for Mother's Day on Sunday. During our time in Oncology land, I have learned that there’s no one way to experience this day. Some people are celebrating, some are grieving, some are holding hope, and some are just trying to get through. Whichever you are, I wish you love and healing today and everyday.
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