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!

Weekly Check Up Wednesday, April 23

What did we even do on the long weekend? It already feels so long ago... The Easter Bunny came Sunday morning and we went to Granny's for Easter lunch Sunday afternoon. Chuck spent the entire weekend fixing his muffler and I worked in the garden taking out a tree that was sick, sadly. The kids played on the trampoline and Eric finished up some Lego sets.

Eric elected not to go to school on Tuesday. He is feeling okay, but was worried about his low white blood cell count, not wanting to get sick. On Wednesday he had his check up at clinic. It was a gong show there after the long weekend. We were lucky to get right into a room, but unfortunately it was a room with an exam table and not a stretcher/cot. Eric was not impressed. We had hoped to just get his access done there and then move if he needed platelets, which of course we had assumed that he would need. Eric didn't even want the access on the uncomfortable exam table, but he didn't have a choice so we made it work. Just before his access, I let his Nurse Clinician know that he had petechiae on his skin, which is a sure fire sign that he has low platelets, even beyond the multiple bruises. So his doctor ordered the platelets without waiting for the blood test results. This meant that we got out in about 2.5 hours instead of 3.5 which was great. Though we never did get to move rooms. They were all full and families were waiting in the hallway for rooms to become available. Eric's Nurse Practitioner came in to do his exam. We saw his Oncologist a number of times but he was running all over the place. Luckily we love his whole team so are happy with whoever comes to do the exam. His Nurse Practitioner says he looks really good. Yeah he looks great on the outside, but could we fix the inside please?!?! I showed her the petechiae that I had noticed that morning on his wrist and collarbone and also showed her some red spots in his ears and asked what those were. Turns out they are petechiae as well. It is basically a cluster of small red spots. His legs are also even worse than the previous picture I shared, with some large bruises along with the small dots. In addition, he now has a number of bruises on his arms and a few on his back. It's pretty awful to look at but mostly they don't bother him. I guess maybe it's not the smartest idea to allow a kid with a low platelet count on the trampoline. But there are so many ways he doesn't get to be a "normal" kid that I can't take anything else away from him. 

We did get Eric's blood counts before we left and, surprise, surprise, his platelets were "less than 5." His hemoglobin is down to 83. For reference, I donated blood yesterday and they test your hemoglobin level beforehand to make sure you are safe to donate; my hemoglobin was 145. I told his Nurse Clinician and said "and I'm tired!" It is truly amazing the way kids adapt. With a hemoglobin in the low 80s, you probably couldn't get most adults out of bed. We will plan for a long day on Monday for Eric to receive both blood and platelet transfusions. 

Eric's oncologist always says the greatest impact on his counts from the IV chemo is 7 days after it finishes, so that is this Friday. Since it is a pro-d day, and Eric hasn't been to school the rest of this week, we figured he may as well skip today (Thursday) as well and just have a good rest and hope his counts recover a little and it's safer for him to be at school next week. Of course, he is still on the oral treatment; today is day 11 of 28. He continues to feel pretty well, though he isn't eating much, and is a little lethargic. We're back to clinic on Monday and Friday next week. 

Monday, April 14 through Friday, April 18

This week we are in clinic every day for Eric to receive IV treatment. At least we are able to do it as outpatient and at least its a beautiful week to be in the car. I asked for mid-day appointments since its a quick treatment and that way we won't have to fight traffic either way. 

Monday, Day 1 of 5:

Traffic was great and we ended up at the hospital quite early so decided to look for our own parking instead of valeting, even though it was mid-day. However, we got a spot in the first row! It's one of my favourite spots because it's closer to the building and it's tucked a little so people don't realize it's there. (Who has favourite parking spots at the hospital?!?!) As we headed into the building we learned that April is dental health month. There were balloons and a poster informing us. But then also a large table of very friendly people who waved us over and gave Eric a Minions toothbrush and some toothpaste and a shark sticker about brushing. They also had an enclosed area for a quick check up but we declined that. Next we headed upstairs and noticed the family lounge had the cutest cookies. We stopped in and got to meet Rachel of Mighty Warriors Foundation, an organization that she founded after noticing a lack of mental health support for caregivers. The cookies had been donated to the foundation by Canela Sweets, a home baker in Port Coquitlam. They were super cute and delicious! Eric shared with me ;) 

We went to check in and were still 10 minutes early. Unfortunately, there was no room available! We waited until about 12:15 before getting a room, and not a minute too soon; Eric was just starting to get whiny about waiting. He got his port accessed and was given IV anti-nauseant and then his IV chemo. It's a super short infusion - 20 min for the anti nauseant and only 10 min for the chemo, but there was a lot of waiting so we were there about 2 hours. His Nurse Practitioner and Nurse Clinician did stop by and give him a quick once over, since we were just there Friday. His bloodwork showed his platelets had held from the transfusion Friday. Platelet count was 35; not high enough to heal all his existing bruises, but high enough he didn't need a transfusion. Luckily we got out early enough that traffic was still reasonable. We were home around 3pm on a lovely day, but we don't really have anything planned for this week since attending the hospital everyday uses up a lot of our mental bandwidth each day. Eric didn't even go to swimming lessons since he will have his port accessed for the week. He is not looking forward to sleeping with it accessed, but its much nicer than having an access daily in a spot made tender from the previous day. 

Eric started his oral therapy this evening as well; day 1 of 28. 

Tuesday, Day 2 of 5:

Not quite as early this time, even with no toothbrushes or cookies to distract us on the way. Luckily this time there was a room available for us upon arrival. We got the first room on the unit which is adjacent to a patio with the cutest mama and baby bear statue. 

This should have been a very quick visit with no bloodwork, no check up by doctor or nurse practitioner, and since Eric was already accessed. Our nurse did get the anti nauseant started pretty quickly, but then she got busy with something else and we had to wait about a half hour for the chemo to start. Even with all that waiting, we were only about an hour and 20 minutes, which is much faster than our regular clinic visits these days, and we were home before 2:30pm. It was a fairly uneventful day, which is a good thing; though Eric's dinner (tacos) did make him feel a bit nauseous. 

Wednesday, Day 3 of 5: 

Eric's port site is getting itchy under his dressing and we still have 3 days left, eek! Eric asked for an Ondans (anti-nauseant) in the morning before going to the hospital, rather than having it by IV at the hospital. Since he had the anti-nauseant in the morning, he only needed the chemo infusion which is just 10 minutes, but we were there for 1.5 hours. Lots of waiting! The chemo does only have a one hour expiry so the pharmacy doesn't makes it until the nurse calls. Eric's platelets were down to 15; however, since we are back every day, we are able to wait until Thursday and have the platelets pre-ordered so it goes faster. 

After the hospital, Eric finished building the Hungarian Horntail Lego set that Kristina, Child Life Specialist, gave him at the hospital last Friday when he was getting platelets. It is a very cool set; its wings actually go up and down!

Thursday, Day 4 of 5:

Chuck was able to take Eric to clinic today so that I could go see the Renaissance Fair and Joel's project on Shakespeare at his school. Unfortunately, last day before the holiday and clinic was packed. They had to wait 30 min for a room and then ended up with a room with an exam table, not a cot, just so they could get started instead of waiting another 30 minutes. They did eventually get moved to a more comfortable room. Eric received his 4th dose of IV chemo plus the platelets that had been planned for the day before. It was a long day for them and they hit rush hour on the way home, but Eric came home in a great mood with the new Lego set that Kristina gave him! 

Eric's white blood cell count has been low for awhile, impairing his ability to fight infection, but steady. On Thursday his blood work showed a drop in white count and his Nurse Practitioner suggested laying low over the long weekend. Though she did tell Eric it was okay to go to White Spot for dinner on Friday like he had planned. 

Friday, Day 5 of 5:

Good Friday! The clinic is closed on holidays, so back on Monday when our week of appointments were scheduled, we were booked into the inpatient ward for a day visit. However, as the week went on, there were more and more people being booked over there and they didn't have enough room, so clinic ended up having to open on the holiday. They were open only 4 hours with a skeleton staff, but it was nice to have the consistency of clinic. We spend a lot more time at clinic than inpatient these days, and we know all the staff and they know Eric. Our appointment was at 10am after being at 11:30 or noon all week and Eric was not impressed. Of course with the holiday, traffic was great, and with so few people at clinic we were in and out in under an hour. We were only 2.5 hours door to door. It was amazing, but the best part was Eric had his port de-accessed after a week of having it accessed. He was so happy to scratch under the dressing and was more comfortable playing outside once we got home. Unfortunately, he did burn his ear lobes, even though he was only outside for 1.5 hours and had sunscreen on. Stupid meds! 

We did go to White Spot, like Eric had planned, to celebrate the end of the long week. 

Eric has been feeling fairly well all week, just with one morning dose of anti-nauseant. Fingers crossed that continues! Next appointment is Wednesday. 

Weekly Check Up Monday April 7 & Friday April 11 + Biopsy Results

Buckle up; its a long one! 

Trying to remember all the way back to last weekend...that was when we had that beautiful peek of summer on Saturday. What a beautiful day and so warm! I got out and weeded the garden and planted some sweet peas, carrots & lettuce. The kids got out on their bikes, both of them on new bikes this season due to their rapid growth. Joel got a new bike for Christmas and it's so big that I don't think I could even get on it. Eric is on to Joel's old bike but could grow another inch to be really comfortable on it, and it needs a serious tune up. 

Check up scheduled for Monday morning, what a way to start the week... As always, Eric needed platelets. Everyone reading this now knows that platelets are for clotting blood, so low platelets equals bleeding. I don't think I've shared as much, but it also means bruising (which is just bleeding under the skin). When we get into the hospital, they always ask about bruising and bleeding as an early indication of whether he may need platelets. Eric has basically been covered in bruises since December. He's always getting new ones and the old ones don't heal very quickly. However his Nurse Practitioner, who we saw Monday, lifted his pant legs to take a look and we were both surprised by how many more bruises he'd gained since last time I took a good look at his legs. This is a picture of his legs Monday afternoon before swimming. He doesn't even know how he gets these bruises. 

There are usually snacks available in clinic and often the snacks are chips. Sometimes the chips are Old Dutch and Eric will never eat them if they are Old Dutch. On Monday, he wanted some chips but there were only Old Dutch so his lovely nurse went to ask Child Life if they had a stash of other chips and he got some Lays Ketchup chips. His Nurse Practitioner, who is of similar vintage to me and remembers when Old Dutch chips came in a box with the 2 bags inside, was flabbergasted that it really made that much of a difference and that Eric would actually refuse to eat the Old Dutch ones. This random paragraph will become relevant shortly. 

Anyhow, Monday's appointment was relatively quick at 3.5 hours which seems to be about the fastest we can do with a platelet transfusion. Unfortunately, we didn't receive any of the results from the biopsy yet, not even preliminary results. Eric's next appointment was scheduled for Friday, but the team did say they would call me once they had the results. 

Eric went to swimming lessons Monday evening and they were, thankfully, vomit free, though this time I did give him an anti-nauseant before we left the house.

Eric's oncologist called Wednesday afternoon. He only had a verbal heads up about the results and not the written report. However, it appeared as if the abnormal cells were fairly similar to the last biopsy, which were in the 80% range. It is these abnormal cells that are preventing his body from making platelets, hence all the transfusions. On the positive side, it looked like the blasts (the bad leukemia cells) had come down to less than 5%. This puts us back into a similar position to January. 

Eric and I went into clinic on Friday for our regularly scheduled appointment. However, just as his nurse is about to access his port - all the supplies set up and ready to go, shirt off - she says "you put the cream on?" And Eric and I looked at each other in shock. We completely forgot to put Emla on his chest! And it didn't even occur to us until she was basically ready to stick the needle in. UGH! There was a presentation at Eric's school for the Grade 4/5 students about online safety that I had really wanted him to attend. So I dropped him off at school, came home to prep food for the hospital, picked him up and drove to the hospital. I guess with a different routine to our usual, we both completely forgot the Emla. His nurse put on Ametop instead of Emla because it works faster but we still had to wait 30 minutes before she could do the access. Unfortunately, Ametop doesn't work as well as Emla so it still hurt but Eric was amazing. He just sort of grimaced and said it pinched a lot more than usual. Since he was slow to get accessed, his Nurse Practitioner decided just to order platelets without waiting for results of blood test because his legs looked the same as Monday and after 4 months of this it was unlikely that he was going to have some miraculous rise in platelets since his last appointment. 

Later, his Nurse Practitioner and Nurse Clinician show up with a tray of chips in small cups and tell him they're going to do a chip taste test! Eric thought this was the best news he'd heard all week! They made him put a mask over his eyes as a blind fold and then gave him 2 cups of ketchup chips and he had to say which were Lays and which were Old Dutch and they did the same with All Dressed and Sour Cream and Onion. 

He got 2 out of 3 correct, only missing the All Dressed. However, he said he eats Ruffles All Dressed not Lays so he really didn't have a chance with that one. 🤣  Eric and his team had way too much fun with this activity, and also all enjoyed eating the chips after. 

Finally, just as the platelets were finishing, Eric's Oncologist came by, with his Nurse Practitioner and Nurse Clinician so we got the whole team. He came to review the biopsy results with me now that he had all of them. The hemopath report was just as he told me on the phone, with the additional comment that the T cells were active. T cells are responsible for fighting off things that affect the immune system (infection, cancer). Based on the previous split chimerism test, it appears Eric's donor cells are mostly (completely?) in the T cell line. So as far as I understand it, what this means is that Eric's donor cells are still trying to fight. In addition to the hemopath report, he also had the chimerism results, which show that the donor DNA is about 16% with Eric's DNA making up the rest. The last result the donor DNA was 21%. I don't love the decrease, but as long as he has donor DNA, we have options to stimulate it to fight off the bad cells. 

As before, Eric's doctor describes us as "stuck" or plateaued at this place. It's not a great place to be because it requires so much "maintenance," attending the hospital every 5ish days for platelets. Though, it is an okay place to be in that it is stable. Of course, this fine balance could tip (either way) at any time. For now, we've agreed to just do another round of the same treatment. This is because its been almost 3 weeks since he finished his last round of treatment and if we aren't doing anything, we risk the leukemia cells taking off. Additionally anything "new" that we wanted to try would require time and/or approvals to get set up. On Monday, Eric will start another 5 day cycle of IV Chemo (Azacitidine of 5-Aza) and another 28 day cycle of oral "therapy" (Venetoclax). This cycle he is able to do as outpatient, though we will have to drive to the hospital everyday for 5 days, including on Good Friday. He won't go to school next week, but after that will be able to if he is feeling up to it. The team and I have discussed something new to try for the next cycle, or perhaps later in this cycle if the stars align, but I will leave that for another time. 

For now, we're going to get outside and enjoy the sunshine this weekend!

  

Weekly Check Up & Biopsy Wednesday, April 2

Hello April! It's Eric's month on the calendar. 

Monday was back to school after Spring Break, except Eric didn't sleep well Sunday night and was too tired to go to school Monday. Joel went and Eric stayed home and I finished up my Spring Break chores/Spring purge everything from the house! Eric did go to swim class Monday evening and everything was great, until the class ended and Eric said he felt like he was going to throw up, and then vomited in the bushes. He finished his treatment a week ago and hasn't been feeling nauseous so hasn't been taking his anti nauseant, but maybe he needs it for swimming. No idea what is happening with this random vomiting. Then on Tuesday he planned to go to school, but his nose started bleeding in the morning and would not stop! Last time this happened, we were able to just move our clinic appointment forward a day, but since his appointment this week included a biopsy that he had to fast for, that wasn't an option. If we went to the clinic on Tuesday, we were still going to have to go back Wednesday. Luckily we had some medicine, tranexamic acid, that helps lessen bleeding. Eric took a dose orally (unhappily; they are huge tablets!) and I crushed some and put it on gauze and stuck it up his nose. It worked! His nose stopped bleeding and he got to go to school at about 9:30 and his nose didn't bleed again the rest of the day. What a start to the week, but sadly, vomiting and nose bleeds are two of the things that have become routine in our world. 

Since Eric is needing a platelet transfusion every 5ish days, I've been trying to schedule clinic Monday/Tuesday and Friday one week and then Wednesday the following week. At least that way every second week we only have to go to clinic once in the week! It's such a small thing, but so necessary. So this week, Eric was scheduled for Wednesday. Also, since it was just over a week since he finished the last cycle of treatment, he was scheduled for a Bone Marrow Biopsy. This was his 17th bone marrow biopsy since October 2022 when this all started. Initially, the nurse would feel his hips to determine the correct location to place the Emla (numbing cream) in advance of the procedure, but they no longer need to. You can see the location after this many biopsies. There is a permanent mark on his back about the size of a quarter. 

Due to the biopsy, we had an early appointment. It was 8:30am so we had to leave the house at 7:30am and I had to wake Eric up at 7am. He has to fast, so no food after bedtime the night before; he is allowed water or apple juice in the morning until we arrive at clinic. Traffic was ok for rush hour and it took about an hour to get there. We checked in, got our room and then waited, and waited, and waited. Eventually our nurse showed up and it turned out that she had another kid having a procedure that morning and it took awhile to do his access because he was quite young. Meanwhile, Eric was asking anyone who would listen, what number he is on the list. We found out there were 7 people on the procedure list that day, which is a lot; they will only do a maximum of 8 in a day. However, we didn't know where Eric was on the list because they don't make the list until everyone checks in because someone might have a cold which would mean they'd have to go last. Other than that, they generally go from youngest to oldest. 

So Eric's nurse arrived, did the port access and did his bloodwork. By now it is past 9:30. Unfortunately, when I went to check with the head nurse (because Eric would not stop asking) I learned that they wanted Eric's platelet count before placing him on the list. Then they decided to just order platelets right then and get started while we waited for the results of the blood test. Then, because Eric is allergic to platelets, the procedure team didn't really want him in procedure while receiving platelets, just in case he had a reaction. So the platelets had to be finished before he could have his procedure. We never did find out his place on the list, but they came to get him at almost 11:30am. Eric was, understandably, a complete wreck. He was so hungry and frustrated. He was alternately crying, and yelling that he hated the hospital, it wasn't fair and he was going to leave. All the things he goes through at the hospital and this sort of thing seems unnecessarily cruel. My mama heart was breaking for my poor boy.  

The procedure went just fine and they brought Eric back to the room around noon. He does usually wake up from the sedation pretty quickly, but I think they might have brought him back a little early because he was a little confused and also really, really funny! He wasn't sure how I got there or where he was and when I said he was back in his room, he thought we were at home. His social worker had stopped by and he was giving her a good chuckle. He had a pb and j sandwich and a chocolate milk and he started to feel much better. Although, just before he had gone in to procedure, his bloodwork results finally came back. His platelets weren't as low as I thought they would be after the nose bleed the previous day, but his hemoglobin was lower than I expected, and low enough that he needed a blood transfusion. 

It took forever for the blood to arrive upstairs and his nurse to be available to get it started. Luckily, Kristina from Child Life brought him a cute Lego panda set to keep him entertained for our unexpectedly long day. We finally got out of there around 3:30, just in time for rush hour. It took over an hour to get home so we arrived at about 4:40pm, more than 9 hours after we left, both of us absolutely exhausted. On the plus side, Eric is all loaded up on products, having received both blood and platelet transfusions, and should be good to go the next couple days! Unfortunately, he woke up this morning with his back quite sore at the biopsy site and elected not to go to school today (Thursday). 

Appointments Monday and Friday next week. Biopsy results will trickle in but probably 1.5 weeks until we get the full results with the chimerism (donor DNA) info.