We started with a great weekend. Eric was feeling good. He went to a birthday party on Saturday and was able to stay for the entire party. He had a playdate on Sunday and even asked to stay longer there. He did make a decision on Sunday to quit swimming lessons though. He's been doing them steadily for about a year and a half and has whipped through the levels, but he has missed all of them in the last couple months and even the ones before that were a bit challenging. Hemoglobin carries oxygen around the body and that makes swimming with low hemoglobin extra challenging.
Monday we were planning for a longer day at clinic. Based on his blood counts the previous week, we thought he would probably need blood. The port access was uneventful and Eric's hemoglobin was 86, which is certainly low, but not necessarily transfusion low. Eric did ask to have the transfusion on Monday because he was worried he wouldn't feel well if we waited until Thursday, and he was excited to go back to school on Tuesday. We had planned for a long day anyhow, so we went for it. I had brought a single serving of lasagna from the freezer for me and it had marinara on the top of it. As I was taking it out of the microwave, it just slipped through my hands and BAM onto the floor. The marinara splashed all over the floor, up the cabinets, onto the countertop and ALL OVER me! It was on my shoes, my pants, my t-shirt and my sweater. It even landed on my face! This was after the platelets but before the blood even started so we were still there another 2-3 hours and I smelled like lasagna!!! The rest of the day was much less exciting, thank heaven.
Tuesday morning Eric was excited to go back to school after a long 4 weeks away before Spring Break. I was so excited myself!!! It was the first time I was going to be home alone in 6 weeks! Also, it gave me time to reflect on the past 6 weeks. They were hard - headaches, flu, headaches, rising blast count, changing treatment, a week in the hospital, more headaches. Eric was feeling so poorly and barely left his room and at the beginning I wasn't feeling well either. The weeks were hard at the time as I kept waiting for Eric to feel better the next day, the next week. However, it's only in looking back from a place where he really feels better that you realize how truly tough those 6 weeks were.
I ended up with only an hour and a half to reflect before getting a call from the school to pick Eric up. His tummy was cramping really badly and he was having some intestinal distress. It seems like maybe he has picked up a stomach bug from somewhere. He wasn't able to go to school Wednesday either, but at least he felt pretty good aside from the stomach cramping.
Thursday we headed back to clinic for a quick in and out platelet top up. Or so we thought... Eric was so happy on the way into clinic. His Oncologist just happened to be standing by the entrance as Eric was laughing and smiling and race walking (and beating) me to his room. Unfortunately, that didn't last long. We didn't know the nurse that Eric had. She'd been off for a year, but worked on T8 before that, on the inpatient side, and in the clinic before that. She seemed very confident and comfortable, but she missed Eric's port. The misses hurt him so badly, but this actually seemed quite a bit worse than normal. He cried a lot and wouldn't let anyone go near him. Usually if we have a miss, we just go again right away. He doesn't like it, but he does it. We got a different nurse, one who has accessed his port successfully in the past, but he was begging me not to make him (speaking of things that are hard...) so we decided we'd give him a break for a half hour and then try again. Meanwhile, we see that the site is super swollen and sticking up in a huge point. We've never seen that before. His Oncologist came by for a look and he ordered an x-ray to see if his port was still in place. They came up with the portable giraffe x-ray machine. I love the giraffe. It's just so cool that they paint the machines like that for the children's hospital.
His Oncologist was there and looking at the picture on the portable machine but couldn't see really well. He said he would go downstairs to x-ray to look at it on the big screens down there. Also after a discussion with his Oncologist, I gave Eric a choice between trying the port access again or having a peripheral IV inserted. I wasn't sure which he would choose because he hates peripheral IVs, but he didn't want anyone near his chest so chose the PIV. We put warm blankets on his arms to make the veins stand out. Then his nurse put emla in like 5 different places on both arms to make sure there was a good spot. Eric was not having a good day, clearly, and emla with a sticky plastic dressing over top all over his hands just made him even more upset because it was difficult to eat and drink. At this point, we'd already been at clinic for more than 2 hours and now needed to wait another hour for the emla to work and numb the site where the IV would be inserted. His Oncologist came back and said that it looks like the sutures holding Eric's port in place have come undone. When this happens, it's possible for the port to flip right over, but he doesn't think that is what happened. He thinks it drifted toward his armpit, which I had actually noticed, but just assumed it was from him growing. It seems to have drifted so far that it's hit something on the way and flipped up on its side. So it is not that the nurse missed, it wasn't there to hit; however, since you have to grip it to put the needle into the flat part in the middle, she probably should have realized something wasn't right. The swelling at the site had decreased, but the bruising had started to set in and Eric still wouldn't let anyone touch it. He did say that he felt like it was on his side and pushing out on his chest a little. With his Oncologist, we decided we'd worry about it next week once the area has had some time to heal and hopefully he'll let someone feel. However, it is possible, probable even, that he is going to need surgery to correct the placement and put in new sutures. The emla was on for 1.5 hours by the time the IV team showed up and Eric and I were so ready to go home, but still no blood drawn yet, which means no platelets yet. This was 4ish hours into the appointment at this point. Eric has only had a couple of PIVs before and they've always been done by the nurses on the floor: once in the ER and the other time on T8. However, it was nice that they called the IV team and we didn't have to risk any misses. Aside from the fact that the IV team does it all day and are good at it, they also use an ultrasound to guide them. They were done and blood drawn so fast! We got the counts back in about a half hour. Big shocker, his platelets were low, so the platelets finally arrived from transfusion medicine, at which point we knew we had an hour to go. It was proving to be a very long day and we both really wanted to go home, but at least now we had a time frame.
Once the platelets started, Eric's Oncologist was finally able to sit down with me to go over some results that popped up following the last biopsy. Apparently there is an additional mutation that is common in MDS and AML patients so they've been looking for it on his biopsies. It has always been negative, until this last one. So basically his already abnormal, mutated cells, have mutated again, or some of them have at least. I told his Oncologist this didn't sound like good news. His Oncologist said the good part is that it's a known mutation and there are treatment options available for it. He said it's like his disease has given us a back door to treatment. That sounds like it might be good, but I am going to reserve judgement on this whole thing until I know/see more. In the meantime, his doctor is applying for a med to treat this and when (if?) he gets approval, we will discuss how and when to incorporate it.
We finally made it out of clinic after just over 6 hours there and just in time for rush hour. We got home just before 5:30. Eric collapsed on his bed and I collapsed on the couch and ordered take out for dinner. We are very happy to have the long weekend to rest and recover.
Cops for Cancer is starting their season this month. They start their training for the big long ride and do a lot of fundraising. The kick off is later this month, but on Saturday, April 4 (this weekend!) they will be at Coquitlam Center (near the Apple Store and Bath & Body Works) from 10-6 doing an EIGHT HOUR stationary bike ride. These people are incredible so stop by and give them some encouragement and maybe a donation. They provide funding for Camp Goodtimes and pediatric cancer research through the Canadian Cancer Society.
Back in clinic next week on Wednesday when we will learn more about what's going to happen with Eric's port.
If you read to the end, good job! I know it's a lot, but it helps me process what was a very rough day for me, and even worse for Eric. I asked him how he's doing today after the rough day yesterday and he told me he didn't want to talk about it. So we know he's good at compartmentalizing like his mom, but according to my counsellor, that is not actually how we are supposed to work through our feelings. Oops!
