Weekly Check Up Wednesday, February 11

Today I am updating from the beautiful Sunshine Coast where we are, all 4 of us plus Millie and Granny, spending a relaxing long weekend. 

Eric went to school all day on Monday which was really nice (for me) after he only made it 2.5 hours all of last week, but he was very tired when he got home. Tuesday he woke up not feeling great; he had a stuffy nose and a headache for most of the day.

Wednesday morning we headed into clinic. Eric's hemoglobin had been 98 on Friday. Nowhere near the 80 where he would need a transfusion, but with the headache all day Tuesday and only making it through 15 min of his swim lesson Sunday due to headache and shortness of breath, we thought there was a chance he would need blood. We decided we'd better pack extra food and entertainment, just in case. Since Eric had a stuffy nose, we thought we'd be cautious, for the rest of the kids and staff on T8, so he was put on precautions. It is not as bad at the outpatient clinic because I can still use the kitchen there. His platelets were 6 and his hemoglobin was 86. Eric doesn't usually get symptomatic until 80, but we decided to do the transfusion anyhow because he had a headache the day before, didn't want to have a headache while we were away for the weekend and due to the long weekend, he isn't back in clinic until Tuesday. Two transfusion make for a very long day though. We were at clinic for 6 hours, leaving at 4pm and prepared for rush hour. We hit Starbucks on the way out to get Eric a snack (a grilled cheese) and me some caffeine for the trip home, and thank heaven we did. There was an accident on the highway, again, so we took an alternate route, but apparently so did everyone else. It took us 1 hour and 50 minutes to get home. It has never taken that long. We got home just before 6, and Eric can't eat after 6 because his med for this treatment has to be taken on an empty stomach. Luckily he'd eaten that grilled cheese on the way home and he grabbed an ice cream sandwich when we arrived home and was pretty happy.  

Thursday Eric had an appointment at the podiatrist for his ingrown toenails, but had planned to go to school until recess. However, he woke up in the morning pretty tired from the previous day and decided not to go to school in the morning. We had a relaxing morning before his podiatrist appointment. It was just an initial visit for the podiatrist to take a look and then we thought we'd come back for him to actually fix them. The podiatrist didn't want to leave Eric in pain though and had time to fix them right then, so we went for it! He gave us two choices: for him to cut them so that they wouldn't be so bothersome and then come back every 4 or 5 weeks for him to cut them again OR he could remove a sliver of the nail and apply something to kill the root so they don't come back. Obviously we opted for option 2 so that Eric can be done with this and not have them bother him anymore. The worst part was the freezing and Eric did scream when the needle went into his toe, but he couldn't feel anything after that. The doctor wrapped his toes in huge red bandages that we are not allowed to call "clown toes" hehe. 

He had to wear those until the following evening and now we have to do epsom salt foot soaks at night and antibiotic drops and bandaids in the morning. It doesn't even hurt and he's so happy to have it done. 

Friday we decided that Joel didn't need to go to school so we could take an early ferry after Eric finished catching up on math with his online teacher. The sun is shining and we're looking forward to the weekend ahead on the Sunshine Coast. 

Weekly Check Up Monday, February 2 and Friday, February 6

Joel is 14! And he just keeps growing - 5 feet, 10.5 inches now! He had friends over Saturday afternoon to play video games. They were loud, but it actually wasn't as scary for the rest of us as it sounds. We locked them in the basement and threw food at them. They were happy and left us alone. Sunday, Joel's actual birthday, he chilled in his pjs all day until we went to dinner with family to celebrate him. 

Monday, Eric and I went to clinic for his check up and platelet transfusion. He had a little nose bleed while we were waiting for his platelets. Since it wasn't bad at all and stopped fairly quickly, I assumed he must have some platelets. His Nurse Practitioner came in and said oh another of Eric's regular nosebleeds and I said no, this isn't normal, it isn't bad at all! She also confirmed that Eric's platelets were less than 5, so it is quite surprising, and lucky, that his nose bleed wasn't bad. She was very excited about the results of Eric's PFT. His lung function is up to 99%! His last test was quite awhile ago and was 90%. This is amazing after his pulmonary GVHD had him down below 50% with a chronic cough. He was treated for this with high dose IV steroids back in the summer of 2023, but we weren't seeing any improvement. Then, out of nowhere, it started getting better in the fall of 2023.

Tuesday Eric was feeling too tired to go to school. Wednesday he went to school, but I got a call at 11:10 because his head was hurting a bit. Thursday he was feeling a bit nauseous in the morning, so didn't go to school. All in, he was at school for less than 2.5 hours all week. 

Friday we headed back to clinic for another platelet transfusion. It was a pretty long and frustrating day. Transfusion Medicine still won't send the platelets without a platelet count and even though the bloodwork was sent to the lab STAT, it took them almost 2 hours to return the platelet count. We had been there 3 hours, just waiting, before the platelets showed up. They run for an hour, then a flush and de-access. We left the hospital a little after 2pm, 4 hours after the appointment time, only to find there was an accident on the highway. 

Eric's Oncologist stopped by during the appointment for an exam and to chat with us. Eric had only one question for him, that was more of a shouted statement - TOE! He gave me the go ahead to reach out to a podiatrist, so thank you for the recommendations Megan and Emma; we will give Coquitlam Podiatry a call on Monday. He also had the results of the bloodwork last week that was looking for the NUP 98 rearrangement. These are the dysplastic/abnormal cells that mark Eric's disease. They are 71% in his peripheral blood, which is the same as they were in his marrow at his last bone marrow biopsy just before Christmas. This is an improvement from the 80+% that it was before this treatment, though obviously not enough of an improvement. The doctor said in the trials it took 3-6 months, but also mentioned that he was thinking about next steps. For now, we keep doing what we are doing. Eric is "well" even if he's completely dependent on platelet transfusions and losing his tolerance for spending as much time at the hospital as we do. 

Now for the good news! We were given tickets to Collectopia, a trading card event. There were other cards, but it was primarily Pokémon. Eric was so excited that he had trouble sleeping Friday night! Saturday morning he had his backpack packed with his binders (to trade) and his wallet (to buy) and we picked up his friend Misa, who is also a huge Pokémon fan, and headed downtown. Starlight Children's Foundation had a table there and they took our coats for us and gave us lunch and the kids a stuffy. Starlight is the best! The kids were mostly interested in the vendors so we spent most of our time in there buying and trading cards. Not me for the buying and trading; my job was to hold things and stand by patiently. While in the room with the vendors, Eric saw Deep Pocket Monster. Apparently he is a famous YouTuber (Pokétuber.) They got cards signed and I took their picture with him. We also checked out the museum where we saw Pokémon cards under glass that were worth millions of dollars, as well as the original art work for the Black Lotus Magic card that is worth $20 million!!! In the museum, I took their picture with an Arceus statue. I didn't know who it was which is apparently quite embarrassing since he's the god of Pokémon. 

Eric said it was the best day ever and he'd go back today if he wasn't broke! He spent all of his Christmas money, but is very pleased with the cards he added to his collection. 

We're back at clinic Wednesday and we should get the results of split chimerism then. 

Weekly Check Up Wednesday, January 28

Eric has been feeling quite well this week. Joel had a pro-d day Monday and Eric had one Friday. However, Eric said that's not fair since he doesn't go to school on Fridays, so he took Joel's pro-d day off and stayed home Monday. Tuesday he went to school for the whole day, but he was exhausted after. 

Wednesday we went to clinic. Eric's appointment was 10am and we've been about 3 hours lately so we had plans for the afternoon. Eric wanted to go to the bank and we needed to get Joel a birthday gift. Unfortunately, shortly after we arrived at the hospital, his nurse mentioned something about a blood transfusion, which is when I remembered that his hemoglobin was dropping Friday and his Oncologist had said that he'd probably need blood Wednesday. Ugh! I like to mentally prepare for the long day and also bring extra snacks and entertainment. Eric wanted me to get him a grilled cheese sandwich from Starbucks so between that the snacks I did bring, he was fine. He had also brought his laptop, in addition to his iPad, because he's been playing Cobblemon, which apparently is a Pokémon mod for Minecraft. (I am not sure I understand that, even though I can type it.) So he was fairly well entertained for the day. Almost 2 hours into Eric's appointment with no blood products happening, I went to chat with the Charge Nurse. She said she was refreshing (the results on the computer,) but the platelet count still wasn't back and Transfusion Medicine won't sent the platelets without the platelet count. I was so annoyed. It should be sufficient that his doctor has ordered them; his doctor obviously determined that he needs them. Additionally, the reason it is taking so long for the platelet count to come back is because the lab has to manually count them because his count is too low for the machine to return the number. That alone should be sufficient reason to send the platelets. Argh! I am getting annoyed again typing this. Anyhow, I asked the Charge Nurse if we could start with the blood instead. She requested the blood and we were able to get started with that pretty quickly. It takes 2 hours to run and then we still had the platelets, but at least the platelets were ready by then and there was no additional delay waiting for those. Of course at that point, it had been 5 hours since Eric took his Cetirizine, his pre-med since he is allergic to platelets. Despite lots of entertainment, Eric was pretty done when the platelets started. He just wanted to go home. So did I. We finally finished just after 3:30 and the GPS said it would take 1 hour and 5 minutes to get home, but traffic kept building and building and it ended up taking us over an hour and 20 minutes. We arrived home right at 5pm. And then I had to make dinner. Eric had his hot lunch that he'd missed at school that day while the rest of us had scrambled eggs. It was the best I could manage after the long day and no plan. 

Eric's Oncologist did stop by to talk to us a couple times during the day. He's really pleased with how the blood work is looking. Blasts are down and neutrophils are up, but unfortunately no impact to his platelets or hemoglobin. They did extra bloodwork as well for split chimerism which will show how much donor DNA and Eric DNA is in each of the Myeloid and Lymphoid cell lines. In the past it has been all donor DNA in the Lymphoid and all Eric in the Myeloid. His doctor is hoping to see some more donor DNA in the Myeloid. Additionally, they took blood for a NUP98 analysis. NUP98 is the specific "rearrangement" that Eric has so they want to see if there is a decrease in those bad cells. However, this information from the peripheral blood, instead of a biopsy, has been falsely optimistic in the past, so I'm not sure if I will find the results helpful or reassuring at all. His Oncologist did not have the results of the PFT from the Respirology visit yet, but we did learn the reason that Eric had to do more tests was due to his age and Eric told us that it was all down hill from age 10. His Oncologist did talk again about potentially stopping the prophylactic meds, but has decided to keep them for now. The reason for that is because Eric has an ingrown nail on his big toe. It happened following an ice skating field trip a couple of years ago. Perhaps the skates were a little tight and with soft nails from chemo, it seemed to have turned in. So Eric has been dealing with this for a couple years now, with occasional flare ups where his toe becomes very red and sore. His Oncologist said now that he has a bit of an immune system (his white cell count) it is a good time to deal with it and he would request a surgical consult. Eric was so excited and wanted it fixed immediately! A Resident Surgeon came up and talked to us and looked at Eric's toes and took a picture and then went back to talk to her supervisor. She came back and said that they don't recommend surgery. That it is very invasive and recovery is awful and she mentioned they would cut off a part of this toe! Eric was so disappointed, but I told him we'd talk to his doctor and find another solution. When his Oncologist came by later I told him about this info from the surgical consult and he was really surprised. He said that he would chat with them and find out if there was any other option. He did also say that it was okay if we spoke with a podiatrist, which is the one thing they don't have at the hospital. I am going to wait to see if his Oncologist comes back with anything, but then I will probably be in the market for a podiatrist that works with children, if anyone has any recommendations. 

Very long story, short: it was a very long appointment with lots if information and we were both exhausted after. 

Thursday morning Eric went to school but the Secretary called me mid morning just to let me know that Eric's tummy was hurting, but he was laying down and doing fine, and also that there were 6 people away sick in his class that day. Eric was uncomfortable with the sickness going around in his class and wanted to come home. Fridays Eric doesn't go to school, and it was a pro-d at his school. He had a couple of appointments, but because he was so overwhelmed last week and the long appointment Wednesday, I decided to cancel them to give him a break. He has been spending all this free time playing Cobblemon. Though we did eventually get to the bank and to get Joel a birthday present. Joel's 14th (!!!) birthday is Sunday and we are going out to Denny's with his Granny and Aunt and Uncles. Saturday he is having some friends over for pizza and video games. Nine teenage boys in the house. Wish me luck! 

Weekly Check Up Monday, January 19 and Friday January 23

Eric and I really enjoyed our weekend to ourselves. It feels like it was a long time ago, not just last weekend. Sunday we headed to Eric's swim lesson and he greeted the head instructor happily, but when we sat down to wait for his lesson, his tummy started hurting. We ended up leaving just as his lesson started. This tummy pain has happened a few times and it seems to be quite bad, but goes away if he can lay down for a bit. 

Monday we went to the clinic and the access went well, thank heaven, but the platelets took forever to arrive. We had such a nice run of quick (2ish hours) appointments when the team started pre-ordering the platelets. They started taking longer and I've learned that even though the platelets are pre-ordered, Transfusion Medicine is waiting for a platelet count (from the bloodwork) before preparing the platelets. Our Nurse Clinician had called to see if she could fix this problem, but they told her just to put a STAT sticker on the bloodwork to get the results quicker. The platelet count was back in 30 minutes, which is very unusual because they are so low, they have to be manually counted. An hour later our nurse came and said she'd called Transfusion Medicine to check in and they hadn't realized the count was back, so hadn't prepped the platelets. AHHHH! This was frustrating for us, but worked out nicely for Grandma. She was flying in from PG and meeting us at the hospital for a ride back to our house. Her plane was delayed an hour, but since the platelets were also delayed, she made it before we left without her! 

On Monday, Eric's platelet count was less than 5, but his white blood cell count was way up and his ANC (neutrophils) were 1.5. His Oncologist was so happy. That's the first time Eric has had a normal ANC in well over a year. His Oncologist was pointing to some things that we don't usually follow in Eric's bloodwork, because they aren't usually there, that indicate the new treatment is doing what it is supposed to. I told him to tell me when it is positively impacting his platelet count because that is what will actually change our quality of life. 

Eric went to school Tuesday and stayed the whole day, but he was so exhausted by bedtime on Tuesday that he ended up having complete meltdown on Tuesday night. He was overwhelmed with all the hospital stuff and how long we've been doing this for, and trying to keep up with school, and a couple other small things. He was saying this is too much for a ten year old. Absolutely, kid. Absolutely. I can't believe it's taken 3+ years for him to get to this point. He is so courageous and deals with all of this so much better than we could ever expect or ask him to. He finally fell asleep Tuesday night and woke up Wednesday his regular, happy self. Though we decided he would take the day off school on Wednesday to rest. He had such a good day and decided to take Thursday off as well. 

Friday we headed back to clinic. Another good access, another long wait for platelets. Eric's Oncologist is still happy with the bloodwork. He said we might even be able to take Eric off some of his prophylactic medications - an antibiotic and an antifungal. He has also put in another request to Health Canada to extend use of this new treatment. Next week he has ordered additional bloodwork to look at the chimerism (donor versus Eric DNA.) We've done this in the peripheral blood before and it has been misleading, but the Oncologist doesn't want to do another Bone Marrow Biopsy for awhile after the last one was so rough. Hopefully he will be able to interpret the chimerism results along with the changes in Eric's bloodwork in a way that makes sense. 

I know this is good news, but it is difficult for me to be optimistic. We've been through this too many times, for way too long. The best I can do is to be relieved that we don't have bad news. 

After the 3 hours in clinic on Friday, we had to go to Respirology for Eric to do a PFT (pulmonary function test.) This is to monitor his lungs from the GVHD (graft versus host disease) that he had following his transplant. His lungs have been fairly stable for awhile now, but the viruses do hit hard. It has been quite awhile since we've checked in at Resp so his pediatrician when we were inpatient ordered the test. After 3 hours in clinic Eric was tired and ready to go home, but a PFT is pretty fast so we thought we'd be in and out fairly quickly. Unfortunately, there were a bunch of other tests along with the PFT that we hadn't realized were happening. It was 5 tests in total, each fairly quick on their own but they add up. Eric started out well, even though he was disappointed that it wouldn't be quick like we thought. However, part way through the long day, the effort involved in the tests and the appointment not meeting expectations overwhelmed him. He was able to pull himself back together and finish the tests. 

It was a long week and we were happy to have an uneventful weekend at home. Eric did make it to, and through, his swimming lesson today and even got his breaststroke checked off the list of skills, meaning it's basically perfect. He was happy about that and excited to come home for a bath, a grilled cheese and a relaxing afternoon. 

Eric with Grandma's dog, Lily. 

Weekly Check Up - Wednesday, January 14

The boys just finally did their gingerbread house last weekend, after the rough holiday we had. 

Monday morning Eric slept in until 9:15 so he was late for school, but then made it through the whole day. Tuesday he only made it through about an hour of school when his tummy started hurting. Of course, he didn't seem to have any trouble eating the cupcake he brought home from school. 

Wednesday Eric had his check up at clinic. His nurse was someone that we have a lot and she never has any trouble accessing his port. Unfortunately this time it really hurt and he cried. We all thought she had missed his port, but she didn't; it was in and we have no idea why it hurt so much. As with everything else, Eric usually handles the access with a lot of grace and a minimum of fuss. His Oncologist is responsible for the inpatient ward this week, so we didn't see him, but we did see other members of the team. Eric's hemoglobin is holding up well from the last transfusion, but his platelets were down to 5. His white blood cell count continues to increase, but his blasts are up again too. His Nurse Clinician was telling me there are some signs in his bloodwork that the new treatment may be working. His Oncologist said something similar last Friday, but I will save the details until I understand them better. After Eric's platelet transfusion, a different nurse de-accessed his port and again it really hurt and had him in tears. After clinic, we headed to the heart center for an ECG. 

Eric made it to school Thursday for the whole day. He doesn't go to school on Fridays, so I took him to the pool. He doesn't get to go to the public pool very often. Only on days the rest of the kids are at school, I can call ahead and make sure there are no school groups in, and his neutrophils aren't in the tank. We had a great time. Also on Friday, Eric finished his last, and largest, Christmas Lego set. It's only him and I and Millie at home this weekend. Chuck and Joel are on the Sunshine Coast for the weekend. 

Back to clinic Monday and Friday next week. 

Hospital Day 9/9

Day 9, Friday:

We got out on Friday as planned!!!! Eric needed both blood and platelet transfusions, which take forever, especially inpatient. They run it slower since it's safer and they have a captive audience. However, we wanted to GO! In the evening, I asked our nurse to let the day shift know we wanted to get started early so we could get out. Our day shift nurse must have taken that as a personal challenge. She was in at 8am for vitals and meds, called for blood and got that started by 8:30. She had platelets ready to go just before the blood finished and was done the transfusions by 1pm. In the meantime, Eric made me play Yu-Gi-Oh with him and I won! Eric said he might have been too big for his britches, ha! I guess he was pretty confident he would win and forgot about beginners luck. I told him I needed to pack up so he asked Ashley from Child Life to play more Yu-Gi-Oh with him and he beat her twice!

I was all packed up when the transfusions finished at 1pm. Our nurse de-accessed Eric's port and we hit the road! The doctor had brought discharge papers in the morning so that we could go as soon as the transfusions were ready. We got home about 2:15pm. Eric was so funny. "We're home and we get to stay!" "Oh, the couch is so comfy!" "I get to sleep in my own bed!" 

He slept for more than 12 hours last night and spent all day today on the couch in his pjs. It was a good day :)

We're back to clinic Wednesday for a check up and blood work. 

Hospital Days 7 & 8 / 9

Wednesday, Day 7: 

Eric finally had a good night sleep! Thank heaven; he really needed that. 

His doctor ordered the full/regular dosing of his treatment today. However, we didn't learn this until 9:15am when Eric absolutely refused to take the medicine because he isn't supposed to eat for 2 hours after. He usually takes it at 8am. His doctor said that was ok, that he could go back to full dosing the next day instead. 

Neuro left a pamphlet for me about migraines in kids. It includes some vitamins and minerals that are supposed to help prevent migraines. Eric's doctor has added those to Eric's daily meds, but apparently they take 2-3 months to work. 

Eric's doctor (pediatrician) also suggested that we leave the hospital on a day pass in order to test Eric's head in his normal day to day conditions. We decided to go home for the day. We got home about 1:15pm. Eric watched tv and built Lego, so the same thing he does at the hospital, but at home. We were able to eat dinner with Chuck and Joel and give Millie lots of cuddles. Unfortunately, it was only a day pass and we left about 7:15pm to go back to the hospital because we were supposed to be back by 8pm. It was really hard to leave; getting that little taste of home is almost harder than just being at the hospital full time. 

No headache for 3 days now!

Thursday, Day 8:

Another good sleep, yay! 

Back to full/regular dosing of treatment today 🤞

Doctor came in early this morning to give us the okay to go out on pass so we could have a longer day at home. Eric hasn't even finished his meds and I am still in my pjs drinking tea. The plan is to discharge Eric tomorrow if everything goes well today. Unfortunately, it looks like he'll need blood and platelet transfusions tomorrow before we can get out, so we won't be out until later in the day. 

This morning before the doctor came in, Eric finished the Lego set that was his prize for the MRI. It is a Ninjago set that transforms from a plane to a mech. 

He is excited to go home to work on the Lego set that he is building there - Hogsmeade Village - that he got for Christmas. He also dug out his Yu-Gi-Oh cards and is threatening to make me play with him tomorrow. 

While at home this afternoon I was able to make it to my blood donation appointment. It is hard to believe I didn't use to be able to find the time for this and yet I was able to go today with only an 8 hour pass from a week in the hospital. I was actually only out of the house for exactly one hour and I stopped to get gas on the way there and milk on the way home. 

We are back at the hospital for the night. 

4 days no headaches 🤞