Week of April 12/Day 1-6 of 5

Eric is much more interesting these days than I would like him to be. Since having a medically complex child, I've learned boring is best! 

Monday morning Eric had a dentist appointment at the dental clinic at the hospital. He hasn't been able to have a cleaning due to the risk of bleeding and infection, but it is really bothering him so we are hoping to be able to arrange that soon. In the meantime, they had a look and did some x-rays. We saw a fellow there and she kept having to go ask her attending questions so it was sloooooow. We went from there to the Oncology clinic. We ran into Eric's Onc on the way in so he called the surgeon who came up right away. The surgeon was feeling Eric's port to see what to do. Unfortunately, surgeons are used to unconscious kids, and combined with needing a good feel of what was happening, Eric found it very painful. The surgeon did say the port still seems to be in the pocket it is supposed to be in, so if it can be accessed then we don't need to do anything, but if it is bothering Eric, they could do a revision surgery. Obviously, we'd like to avoid surgery if possible so this was pretty good news, but Eric is uncomfortable so he was wanting it "fixed." The port is not quite in the same place as before and Eric was really scared to have the access and also afraid the port might move again on de-access. It did hurt a fair bit, but the access was very easy for his nurse. Even though the bloodwork was sent STAT, it took TWO HOURS to return the results, which is insane, so then the platelets were finally sent up. After the bloodwork returned, Eric's Oncologist sat down with me. The blast count in Eric's peripheral blood was up to 2.4 even though he only finished this round of treatment 5 days ago, on Wednesday. His Onc thought we should probably not delay and start another round of treatment soon. With just a few minutes of discussion, we decided to start same day. This was mostly because Eric's port was already accessed and we could leave it that way for the 5 days of treatment, rather than de-accessing and re-accessing when he is really uncomfortable with it. Since his blast count isn't *too* high (relatively speaking) we are able to do the treatment outpatient, but Eric didn't want to. It had already been a long day and we were looking at driving home during rush hour and he just didn't want to deal with the daily back and forth. However, I was able to schedule the appointments for midday and its a quick infusion so I know we can go back and forth pretty quickly. Surprisingly, when we were finally able to leave, the drive home wasn't too bad, only an hour. We were home late and Eric had a rough day so I told him he could pick something for takeout and he chose KFC because he loves popcorn chicken. 

Unfortunately, before the food arrived, Eric vomited. Mid vomit he said "worst day EVER." It is unusual for him to be that nauseous with this chemo and with an anti-nauseant administered before the treatment, but it could happen. Only, then he vomited again and again and again. I tried to give him some Gravol in addition to the anti-nauseant he'd had before, but he just vomited it up. Eventually, it was almost 8pm and we thought we'd try to just put him to bed. Which is when he said that he was so cold, he was shaking, so I checked his temp and it was 39.7 which means we have to go to the ER. I called the Oncologist on call and quickly packed our overnight bag. It is usually already packed, but I had unpacked it to go to Prince George over Spring Break and never repacked it. We hit the car and were already halfway to the hospital when the Oncologist called back. They called ahead to the ER and we went right into a room when we arrived. Luckily Eric was already accessed because ER accesses are not fun. They took blood for cultures and started him on IV antibiotics right away. The concern is a potential blood infection, due to his port; this is a remote, but life threatening concern. He threw up 3 more times in the ER. I think it was about 12 times in 5 hours, but it did stop around 10:30pm. Interestingly, Eric's Oncologist had mentioned to me earlier in the day that based on Eric's bloodwork, his liver was a little inflamed, which could be due to a virus or possibly some other reasons. Sometimes it feels like he has a crystal ball. Since Eric does not currently have any neutrophils (germ fighting white blood cells) he was admitted. We got into a room on T8, the Oncology floor, about 1am, and settled into bed about 2am. 

After a good sleep in until 11am, Eric woke up feeling much better. Luckily, the blood cultures aren't growing anything and while most of the tests came back negative, one did come back positive for Sapovirus. This is one of the viruses that causes gastroenteritis, or what we commonly call the stomach flu. Even with Eric's symptoms, there was no reason not to proceed with treatment so he had Day 2 of chemo on Tuesday. He doesn't have much of an appetite but no vomiting or fever. He also had a blood transfusion Tuesday after they took all of his blood on Monday at clinic and again Monday evening in the ER. 

On Wednesday, Eric seemed to be feeling quite well, though still not much appetite. He is on contact precautions (isolation) so can't leave the room, and I am not allowed to leave either, unless I leave the floor completely. So far Eric has watched both Moana movies, both Frozen movies, 4 Toy Story movies plus Lightyear, and both Incredibles movies and he did complete a small Lego set. He had Day 3 of treatment and we had a visit from a surgeon and to Radiology. During the time we had been in hospital, Eric had been complaining of pain in his left upper thigh and groin, but on Thursday the pain increased significantly, even with a lot of pain meds. A surgeon came by to check for a hernia, but no hernia. He went for an ultrasound of the area to see if they could see anything, but it came back normal. Despite a day without viral symptoms, the night was very rough; all night Eric was waking up and rushing to the bathroom, again and again. 

Thursday, after very little sleep for both of us, Eric had Day 4 of treatment. Luckily the events of the previous night had at least stopped. Thursday morning Eric's Oncologist came to check on his leg and groin and sent Eric for another ultrasound. This time to look for a blood clot in the area, but that also came back normal. We were able to change rooms in the afternoon which was amazing! We had been in one of the rooms where the couch/parent bed doesn't fold down like a futon, and instead it was like sleeping on a park bench. So I actually hadn't slept much in 3 nights. Also on Thursday, there was some construction right outside our room where they are turning an open desk area into a closed office. We were pretty sick of the sawing and drilling and nailing by the time we got to switch rooms. 

Friday, Day 5 of treatment, and the day we are supposed to go home, right? Sadly no. While the viral symptoms are mostly gone and treatment is done, the leg/groin pain remains significant. In the morning Eric's Oncologist came by for me to sign some forms in an attempt to access the meds for the new mutation. He mentioned Eric would go to x-ray just to rule out bone issues as the cause of the pain since he has been on high dose steroids in the past which can cause bone problems. He also said that this virus, just like the flu, can cause body aches and pains, but it would be unusual for it to be just one concentrated spot. In the afternoon, Eric's doctor came by and said the x-ray was normal. She also said she would request an MRI, but that it was unlikely to happen over the weekend. By Friday evening, I think we have watched every Disney movie made in the last 30 years. Eric went over 6 hours with no leg pain and was able to start on another Lego set. At the beginning the lack of pain was due to pain meds, but it just kept on not hurting. I was very excited and may have jinxed him because sometime between 8-9pm it came back. He got some pain meds and eventually was comfortable enough to sleep, around 10pm. 

Saturday, today, is Day 6 at the hospital. A bonus day. Technically they are all bonus days since I had planned to do this treatment as outpatient. Eric slept in until 10am this morning which is shocking for him. Hopefully it helped his body heal. We don't have anything planned for today - no tests, no transfusions, no treatment. Our nurse this morning did say there was a chance he would get an MRI today, but on the weekend we could easily be bumped for someone more urgent. So far Eric hasn't had any pain or pain meds today, but shhh... I am not going to jinx it this time. We are pretty sure we are here for the weekend, but beyond that we just don't know. 

Today I am grateful for Eric feeling better, for tv and movies on demand and for a hospital couch/bed that folds down to accommodate my mattress topper. 

Update Week of April 5

Hard to believe the long weekend was only last weekend! On Friday I donated blood (have you donated blood recently???) and Chuck and the kids went to see the new Mario movie. Unfortunately, Eric had to come home about halfway through the movie due to the tummy problems he was having last week. Luckily, that turned out to be the last time he suffered from tummy problems. Saturday the Cops for Cancer were fundraising at Coquitlam Center with an 8 hour stationary ride so we stopped by to say hi. 

Eric was also very happy to get poutine and an Orange Julius at the food court. We didn't stay at the mall very long at all though, because Eric has no neutrophils (germ fighting white blood cells) so its not really safe for him to be in crowds. 

Sunday the kids had an easter egg hunt in the morning. Eric woke us up at 7:40 saying "there are eggs everywhere!" In the afternoon we went for Easter "linner" at Granny's with Uncle Dave, Auntie Jenny and Uncle Jay. 

Monday Chuck had to go to work but Joel, Eric and I stayed home with Eric vowing to do nothing all day!

Tuesday Eric went to school and I was home alone!!! He made it most of the day, but did ask me to pick him up about an hour before the end of the day because he was really tired. That's the longest he's been at school in months. 

Wednesday Eric and I headed back in to clinic. The site on Eric's chest from the miss last week is so badly bruised. It is quite a large bruise and the middle is about a quarter-sized purple/black splotch. Over the weekend, his port did slowly flatten again, but had moved further up his chest so it is above the bruise. I told him they could probably access it there, but he was having none of that. I put Emla in the same spot they did the peripheral IV last week hoping for the best and lucky they were able to do the PIV there. Eric's Oncologist looked at the bruise and Eric's unwillingness to try an access and said lets wait until next week. We will be back in on Monday, which will give the area more time to heal. He is going to ask one of the surgeons to come up and see Eric Monday so we can have a plan. Eric was annoyed to not have a plan that day because his port was bothering him. However, he really didn't want anyone to touch it and he was a bit cranky after not getting enough sleep the night before, so it was a bit hard to talk to him to make a plan. Due to the holiday, it was an extra day between Eric's appointments so no surprise that his platelets were <5. Normal is about 300. His hemoglobin is holding fairly well so far though, and his blast count is remaining fairly low. We were in and out of clinic fairly quickly which was nice as we've been having too many complications and long appointments lately. 

Thursday Eric's class went to the zoo and we had it all planned so that I would drive only him, so he could come home early if he needed to and we'd rent the Critter Cruiser so he wouldn't have to walk around the whole zoo. Unfortunately, he woke up with a headache, which he'd actually been having the day before as well. I didn't think too much of it because it didn't seem to be too bad, until bedtime. His neck was also hurting after he'd napped in the car the day before. I had hoped I could give him some pain meds and we'd still make it to the zoo, but he really wasn't feeling up to it. 

Eric doesn't go to school on Fridays, but he did have a meeting with his online teacher scheduled and we'd hoped to get a haircut. Unfortunately, he still wasn't feeling up to either. However, he did make it outside for a bit in the afternoon and said being outside felt really good. 

Saturday morning, Chuck, Joel and I headed out for yardwork. Eric is not only not up for it, but is not allowed to play with/be around dirt due to a risk of fungal infection. He still came outside though and serenaded me with bubbles while I weeded. 

Back to clinic Monday and Friday next week. 

Update Week of March 29

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!