Weekly Check Up Monday, May 26 and Thursday, May 29 + Biopsy Results

What a busy week! Since we are taking an extra long weekend, we had to move Eric's Friday clinic visit to Thursday. So we were in Monday and Thursday, plus had to pack, and Eric actually went to school on Tuesday and Wednesday! He had a great time, but holy was he tired! 

Monday our clinic visit wasn't until 10am, so we left at 9am and thought traffic would be good, but nope! The visit was overall quite uneventful, since platelet transfusions have been the norm for some time now. However, we did try something new and a little scary. Eric is allergic to platelets, so he usually has an oral dose of Cetirizine (Reactine) and a whopping IV dose of hydrocortisone before he gets platelet transfusions. They also used to give him special platelets that were referred to as "washed" but changed to a different method called psoralen treated. At first those had to be specially requested, but now it is standard. So one of the doctors suggested that we try giving Eric Reactine at home before we leave the house and skip the pre-meds at the hospital. The idea was that with the Reactine on board for longer and with the special psoralen treated platelets, he was unlikely to have a reaction and we could shorten our visits. It worked! (Of course, our visit wasn't any shorter.) 

On Monday, Eric's oncologist had partial results from the biopsy. Apparently the long weekend really threw a wrench in things. The report indicates leukemia blasts are <5% That's the reported amount but practically are in the 1-2% range, which is the same as before. It also indicates that the dysplastic (bad) cells are 69% I'm not sure there's any world in which having 70% broken cells is a good thing, except maybe when that is down 20% from the last biopsy. His doctor said we can be cautiously optimistic that this is improvement, but he'd like to see this decrease paired with an increase in donor DNA, but he was still waiting on those results. 

As I said, Eric went to school on Tuesday and Wednesday. Wednesday it was almost 30 degrees and after school Eric went to a friend's house after school to play on the slip n'slide. As I was putting sunscreen on his bruised legs I thought (out loud) hmm maybe this isn't such a good idea, but Eric said "too bad, you already said yes!" So that was that. He had so much fun and when I said did you get any new bruises he said "yep" and then continued on whatever he was doing before I asked. But really, who could tell if he had new bruises; he is one big bruise! 

Thursday back to clinic, and what a trip it was. We ran into construction, ambulances and police; it was just one thing after another. As we were exiting the highway, I called our Nurse Clinician to let her know we were running quite late, more than 20 minutes. I figured by the time we parked and got into the clinic, we'd be a half hour late. She said she'd let the clinic know and also get the Nurse Practitioner to pre-order the platelets. This turned out to be the best thing ever. Between the platelets being ordered and no pre-meds (we gave Reactine at home again) the platelets were started right after his blood was drawn. It was going to be the fastest clinic visit we've had in 6 months! Was going to be... Eric's team walked into the room and I said this is amazing, we're going to be late more often, and they said, his hemoglobin is 75 and we've ordered blood. Sigh. 

They did now have the rest of the biopsy results and they're "interesting." Eric's donor DNA is 12% The doctor was looking for that to come up to about 30% in order to match the drop in dysplastic cells. Obviously, that didn't happen. The doctor drew me a picture to explain what he thinks might be happening. It's a bit complex, and somewhat rare, but essentially he thinks that missing 20% (69%+12% = 81%) might be Eric's own cells, but healthy. It's hard to say if that is good or bad. It would certainly be better if it was donor cells, but it is positive that it is not dysplastic cells. The concern with both donor cells and Eric's cells is that they may not live in harmony, causing GVHD (graft versus host disease). Oh and there is no way to test to see if those are in fact healthy Eric cells. Basically we just wait and see what happens next. 

In the meantime, Eric will start another round of the same treatment on Monday. We will drive into the clinic 5 days in a row for the IV treatment and at the same time he will start the 28 day oral treatment. 

It's Thursday at about 2:30 pm and the blood is just finishing up. This is how Eric walks around the hospital; notice the ipad perfectly balanced on the IV pole. 

I usually bring a book to read but I finished my book yesterday and thought maybe I'd write this up today instead of starting a new book, since we are away for the weekend and I wasn't planning on bringing my laptop. Getting blood today was an unexpected delay, but it also means Eric will be feeling his best for our trip. We've spent the day asking everyone who comes in our room what their favourite road trip song is and adding it to our playlist. We are looking forward to some fun family time and s'mores! We have 2 nights in a hotel and 2 nights in a rustic cabin. Wish us luck for the drive home and the drive out of town! 

Weekly Check Up Wednesday, May 21

We've had a fairly uneventful week, which is never a bad thing when you're dealing with a medical condition. We had a nice relaxing long weekend. Eric had a make up swimming lesson to use so we decided to schedule it for the long weekend when Eric was feeling good. He got to go swimming on Sunday and Monday. Monday was the start of survival week so Eric swam lengths with pjs over top of his bathing suit, took the pjs off in the deep end and then learned about rescue. Joel went to a movie with friends; they were dropped off and on their own, which is a first for him. 

Tuesday Eric actually went to school and had a blast. Since half the grade 4/5s were at Track Attack, the two classes joined together and had lots of outside, gym, and computer time. 

Wednesday we headed to clinic for 9am. Access, bloodwork, pre-meds, platelet transfusion, de-access and home. As quick and straight forward as that sounds, it was 3 and 3/4 hours. Eric built more of the space coaster set for the play room. It is a huge set, but he's getting closer to finished. Unfortunately, no biopsy results because of the long weekend. Eric's bloodwork on Wednesday was not great though, which has me pretty worried about the results. 

Thursday Eric went to school again and received a recognition at the monthly Recognition Assembly. He was recognized for his positive attitude. Nothing has ever been so fitting; this kid is unbelievably positive in the worst of circumstances. 

Friday both kids woke up with a headache and stayed home from school. So frustrating for me as I ran all the errands on Thursday and was looking forward to my free Friday. Also concerning because Eric gets headaches with low hemoglobin. His last transfusion was less than 2 weeks ago and he's been getting about one a month, but with the bad bloodwork on Wednesday and waiting for biopsy results still, I start to think the worst. Luckily I was able to chat with our Nurse Clinician and she reassured me that Eric's Oncologist thinks things look about the same as last time. He is responsible for the inpatient ward this week and hasn't had time to call to review the results, but is on all weekend so said he would call us over the weekend. Of course the kids both felt fine by mid-afternoon. We made pizza for dinner and watched The Wild Robot for Friday family pizza night. 

We are back to clinic Monday and Thursday next week, not Friday, since we're headed out of town for the weekend. 

Weekly Check Up Monday, May 12 and Friday, May 16

I think I've been procrastinating writing this update. Monday was a hard day for me. 

But first, last Sunday was Mother's Day. My sweet family surprised me with a hanging basket and a book and cinnamon buns. Later we went to Granny's to celebrate the May family birthdays - Granny, Auntie Jenny and me. Finally, we headed to Boston Pizza for Mother's Day dinner out. Eric enjoyed it so much that he asked if we could go back for his birthday, which isn't until July! Eric also finished his 28 day cycle of oral treatment on Sunday. 

So, Monday... it was my birthday and we had to go to clinic, but that was fine. Eric would get his platelets and we'd get home and still have the afternoon and evening. However, Eric's bloodwork came back and he needed blood. His hemoglobin was 78 so the doctor said we could probably wait until his Friday appointment, but he typically will get headaches under 80 and I didn't want either one of us to have to deal with that for a week. I try and manage expectations and had told Eric that this was a possibility, but I guess I forgot to tell myself that. My eyes started leaking as soon as they told me he needed blood. Between my expectations for the day, and the conversation with Eric's doctor last week about how he hasn't needed blood for over a month and maybe that's a good sign, I fell apart. I was chatting with the Child Life Specialist and saying that I've become such an expert at keeping it all together, all damned up, that it only takes the slightest nick for it to all come pouring out. I kept crying on and off the whole time we were at the hospital, and it was a long day. Luckily Eric is still working on the project he is building for the playroom, so that kept him entertained. 

When we changed from the short stay side to the infusion side of clinic, we didn't see a nurse for awhile. Oh, and the room we got moved to didn't even have a recliner! Eventually the nurse started the premeds, but then the platelets weren't ready right away, and then blood wasn't ready when the platelets finished. We were there for 7 hours, hit rush hour both ways, and didn't get home until about 5:20pm. A couple of wonderful friends had left a bottle of wine and some bubble bath at my door while we were out, and that was the start to a much better evening. I put the wine in the freezer, ordered sushi and laid down for 10 minutes. The evening was lovely: wine, sushi, gifts and a cake made with so much love, topped off with a bubble bath before bed. 

With Eric loaded up on all the blood products and having finished his cycle of treatment, I was hopeful he would go to school during the week. However, on Tuesday, Eric and I both needed a day to recover. We both spent the day in our pajamas, which is normal for Eric, but I got a solid 36 pajama hours in and it was amazing. On Wednesday I had hoped Eric would go to school, but he had a big sleep in and then a bleeding nose and just wasn't feeling it. On Thursday he was a bit more motivated to get to school and was able to spend the whole day. It's the first time he's been to school in a month maybe. 

On Friday we were back to clinic for a scheduled bone marrow biopsy, so we had an early appointment. After the platelet disaster surrounding the last biopsy, I had asked the doctor to pre-order the platelets so the transfusion could be done in advance of the biopsy. Eric, as always, just wanted to know how many people were on the list. We were initially told 6, but turns out 2 people dropped off and I think Eric ended up third. His platelets were actually just finishing as we walked into the procedure room. When Eric woke up he had his pb & j sandwich and a chocolate milk, followed by all the rest of the food that I had packed. Eric likes to chill a bit while the anesthesia wears off. About an hour after he woke up, they kicked us out, nicely, but they needed the room. I was pretty happy about it because I didn't have to convince Eric that it was time to go and we ended up home before 2pm. 

We are now waiting for the biopsy results, along with the split chimerism results from the previous week. Next appointment is Wednesday and in the meantime, we will enjoy the long weekend! 

Weekly Check Up Wednesday, May 7

We had a great time at the Balding for Dollars fundraising event on Saturday. Eric held a snake and petted a turtle, won a stuffy and some candy, and ate 4 sno-cones. I won a lovely basket with wine and snacks in it; Eric immediately claimed the sweet and salty popcorn. I told him he had to share his popcorn and I would share my wine. Apparently, I am not funny 🤷  

Sunday the kids both went out to a birthday party where they watched the Minecraft movie. It was nice to have a few hours kid free! 

Eric didn't want to go to school Monday. Apparently, Balding for Dollars and a movie was a busy weekend and he was tired. He planned to go to school Tuesday, but then didn't sleep well Monday night, so didn't go Tuesday either. He doesn't seem to be feeling nauseous at all, which is great, but the treatment does make him quite tired. 

Wednesday we headed into clinic for Eric's check up. We didn't have to leave until 9am, but traffic was still brutal and we ended up a few minutes late. Appointment was same old: port access, bloodwork, wait, platelets ordered, wait, pre-meds, wait, platelets, home! Though, Kristina from Child Life had purchased a roller coaster toy that she thought would be fun for the play room and it turned out that it actually had to be built, similar to Lego. She enlisted Eric to build it for her and told him she would reward him for his efforts with a Lego set. He was more than happy to help! The set is pretty big, over 1000 pieces, so even though our appointment was over 4 hours, he didn't quite half finish it. Kristina put it on a big tray so he can keep building at his next appointment. 

We had a Fellow come in to do Eric's exam and then his Oncologist came in to chat with us a little. Chuck and I had a follow up Zoom call with his Oncologist at 5pm on Wednesday as well, so that we could have a more detailed conversation. These conversations are always hard, even though we decided literally nothing and didn't even learn much more than that. 

First, Eric's bloodwork continues to show a much higher than normal number of reticulocytes. This is an indication of functioning bone marrow, making these baby red blood cells. However, they are not (yet) materializing into an increased hemoglobin count, which is a bit confusing. They ordered some additional tests on the bloodwork and a urine sample to ensure nothing nefarious was happening, like his body attacking and breaking down his red blood cells, but everything was negative. Eric's doctor says that the increased hemoglobin may still materialize and reminds us that he hasn't had a blood transfusion in over a month, so we are seeing some stability, even if it is at a low number. With all the caveats, his doctor says this might possibly maybe be a positive sign. 

At the beginning of this cycle, I had mentioned another treatment that we had planned to add in. This was called a Donor Leukocyte Infusion (or DLI) and basically is a "top up" of cells from the original donor. However, in discussion with Eric's Oncologist we've determined that doesn't make sense at this time. It has a relatively low success rate, especially for someone who has all their donor cells in the T Cell lineage, which Eric did when we last did the split chimerism test back in January. I'm always willing to give things a try, even with a low success rate; however in this case, there is a fairly large chance of a negative outcome. The DLI could spark GVHD (graft versus host disease) in any of Eric's organs and especially in his lungs, where he had it previously. We would then have to treat that, which complicates matters, and there's the potential that treatment would not be successful. Another bout of GVHD would also limit our ability to engage in other potential treatment options down the road. All this to say, at this time, this is not the right option for Eric. 

Eric's doctor ordered a split chimerism blood test on Wednesday. Between that and the results of the bone marrow biopsy that will come at the end of this cycle, we will be able to decide on next steps. I believe that if things stay the same or get better, we will repeat another cycle of IV and oral treatment. If things are worse, either lower donor cells or increased leukemia blasts, we may be forced into a more aggressive treatment. 

Eric finishes this round of oral treatment on Sunday and has appointments Monday and Friday next week. Friday will be a bone marrow biopsy. 

Weekly Check Up Monday April 28 and Friday May 2

Another Monday morning clinic appointment to start the week! Eric's hemoglobin was low last week at 83 and he was a bit lethargic through the weekend, so we planned for a long day at clinic for both platelet and blood transfusions. I packed the big food bag, though Eric hasn't been eating much so it was mostly just fruit and cheese. We knew that the Child Life Specialist who feeds Eric's LEGO addiction was going to be on vacation, so we brought in our own LEGO set. Following Eric's last hospitalization, he was gifted quite a few LEGO sets from all of you lovely people. I am holding on to them for his next inpatient stay because he goes through them so fast as an inpatient, but I did let Eric pick one to take on Monday. 

So we were planning for a long day and in the evening Eric had swimming lessons and Joel had track and somehow I had to fit in voting. We were leaving the house at 8:30 and I thought maybe I'll just vote on the way and we'll be late to clinic and whatever because when will I have a chance otherwise. Chuck went a few minutes before me and was able to text me that it wasn't busy so I did decide to stop on the way. Turns out there was only one person in line and it was Chuck, so he let me go ahead of him 🤣 I was in and out in the blink of an eye and back on the road to clinic. And then, traffic was great and we actually got to clinic early! 

Eric had his port accessed and blood work drawn and then we waited, and waited, for the results. His platelets were 9 so he needed a platelet transfusion. However, his hemoglobin was 85, which was unexpected. It's not much of an increase, but we had expected it to fall under 80. I suggested to his Nurse Clinician that we go ahead with the red blood cell transfusion anyhow, if it was just a matter of having a long day at our next appointment Friday, instead of Monday. Our Nurse Clinician went to discuss with our Nurse Practitioner who requested a reticulocyte count. Reticulocytes are immature red blood cells. It turns out that his reticulocyte count is pretty high, so his Nurse Practitioner thinks it is possible his red blood cells will recover on their own without needing a transfusion. I was happy to not have the transfusion Monday and be able to go home earlier, with the possibility that Eric may not need one on Friday either; though I will believe it when I see it. 

Meanwhile, we were waiting for the platelets to arrive, and waiting and waiting. It was nice to have the additional 2 hours that a blood transfusion would have taken, but we were still there 4 hours, just under 6 hours round trip. Also, Eric decided that he was actually going to eat for the first time in a couple weeks, so he plowed through all the food that I brought plus the seaweed, apple sauce and Fruit by the Foot snacks that were available at clinic, and I still had to go to Starbucks and get him a grilled cheese and a chocolate milk. 

Once we were home, Eric had a couple hours to chill before heading out to swimming lessons where he graduated from Turtle 2 to Shark 1!!! (These are the British Swim School levels.) This kid amazes me everyday. Imagine having a hemoglobin count of 85 and not only getting out of bed, but enthusiastically attending swimming lessons and then excelling at it also. All that after spending the day at the hospital. Me and my hemoglobin of 145 had a nap after the hospital day. 

I had told Eric that he was free to go to school Tuesday and Wednesday. However, Tuesday morning Joel woke up stuffy and was staying home, so then Eric wanted to stay home too. He was happy to go to school Wednesday morning, but not too early; he's developed his mom's love of slow morning on the couch, oops! So he did go Wednesday, but arrived late and left early. He's not feeling too badly, nausea-wise, but he is tired, and out of practice attending full days of school. 

On Thursday, Eric's class had a field trip to UBC and they were taking a bus there. It sounded fun, but Coquitlam to UBC is pretty far and I was concerned about him feeling poorly and being stuck there. Eric and I discussed and elected not to attend the field trip. Thursday morning I surprised Eric with a trip to the pool! He was SO HAPPY! I don't let him go to the public pool due to being immune suppressed, but I figured it wouldn't be too busy mid week during the day and I called in advance to make sure they didn't have any school groups in. We stayed for more than 2 hours!!! Eric jumped off the diving board a bunch of times, and made me go a few too! We swam under water, did summersaults and hand stands, the lazy river, and tried to sit on a frog mat without falling. We raced until Eric realized that just by virtue of being taller than him I am much faster. There was also a fire alarm and the pool was evacuated, but luckily, they determined it was a false alarm before we made it out to the parking lot in our bathing suits. Three fire trucks came and turned off the alarm, thankfully; it was loud so we were floating with our ears under the water waiting for it to be turned off. All in all, I think it was a pretty successful substitute field trip. Though I am not sure Eric got off the couch again that day; he was pretty tired after. 

Friday we headed back to clinic for a 9am appointment. Eric was super annoyed that we had to leave the house at 8am, interfering with his slow morning on the couch. Traffic was surprisingly good for that time; got to love Friday traffic! We got our room, Eric's port was accessed and blood drawn. Then we waited, and waited. It took quite awhile to get the results, but no surprise that he needed platelets. While his pre-meds were running, to prevent an allergic reaction to the platelets, his doctor and Nurse Clinician came in to review the numbers and do an exam. His hemoglobin was 84, so those reticulocytes from Monday haven't materialized into anything significant, though they are managing to hold his count relatively even. over the last couple weeks his hemoglobin was 83, 85, and then 84. Eric also hasn't had a red blood cell transfusion since April 2, so a whole month. We didn't need to do a transfusion, but could elect to have one in order to give Eric a little more energy. However, we chose not to. We didn't want to stay at the hospital all day, and Eric is doing okay. He does have plans for the weekend but nothing too strenuous. Also, we know we're back in a few days for another check. Eric's doctor was going to get the reticulocyte count again to see if that was just a blip on Monday or if the count is still high. However, we didn't have that number when we left. With all the waiting, it ended up being a 4 hour appointment, even though the platelet transfusion only takes an hour and another 30 minutes for the pre-meds. Though with the early appointment, we still got home at a very reasonable time. 

Today, Saturday, we're headed out to the Balding for Dollars main event on the grounds of Children's Hospital. No one in the family will be balding this year, but it's a great family event with face painting, mascots, a magician, and, what Eric is most excited about, sno cones!