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 🤞

Hospital Days 5 & 6 /?

Monday, Day 5:

Our sleep Sunday night was only marginally better. Eric's achy legs made it difficult for him to fall asleep and then his tooth fell out and then his nose started bleeding. It was midnight before he got to sleep. He has had 4 super loose teeth for quite awhile and that was the 4th one gone, thank heaven. They're a worry because of the low platelets, so they bleed, and they're also an infection risk when you are immune compromised. Eric also woke up at 3am complaining about his legs, but it didn't take him too long to get back to sleep then. He was up by 8:30. He said he tried to sleep more, but he couldn't. I told him 8 hours wasn't enough for a 10 year old. It certainly wasn't enough for me! 

He wasn't feeling great Monday. it is probably the lack of sleep as much as anything else. He did not have a migraine or any other pain, just feeling a bit off. He spent the morning lying in his bed watching tv in the dark. Later in the day I was able to turn on a little light and he sat up in bed to build Lego. He built the motorcycle that he received awhile ago from the Baker Drive Elementary community and I had saved to entertain him in hospital. 

Eric's Oncologist came in to see us first thing and I was so happy to see him. He says the medication should be completely out of Eric's system and since he still had a migraine Sunday, he doesn't believe it is a side effect from the medication. He says we will restart the treatment at half the dose. He reiterated that this is an important time while we wait to see if the medicine will work or if the blasts will take over. The blast count in Eric's peripheral blood is higher Monday, which makes me uncomfortable, but his doctor says it is still at a safe level and we will just keep an eye on it. He still wants an MRI done but is also having the team look into medications to prevent the migraines, instead of just treating them after they appear.  

Tuesday, Day 6:

Another bad night last night. Eric got tucked in early and was so tired that we were optimistic, but he just wasn't able to sleep. After awhile, he ended up so frustrated and upset, that he ended up vomiting. Then he blew his nose and it started bleeding, a lot. He ended up getting a platelet transfusion at midnight. Since he's allergic to platelets, he usually has Cetirizine (Reactine) first, but this time I asked for Benadryl instead to help him sleep. He fell asleep during the transfusion and slept through until 8:30am.  

After 3 rough nights in a row, he is super tired today, just laying in bed watching tv. We were able to get off precautions today since it's been 10 days since the onset of the flu symptoms. I went straight to the washing machine! 

He had an MRI scheduled for 3:30 today. He hasn't had one in a couple years and was able to be sedated for those ones. Now that he is older, they want him to do it non-sedated. He was a little nervous about staying still for long enough and the "coils" that go over his face, but he does get to watch a movie. They had also initially told him that they couldn't use his port for the contrast dye and he would have to get an IV, which he hates. However, we since learned that they can use his port and he won't have to get an IV. We are giving him some migraine medicine in advance, just to make sure that he doesn't get a migraine once we start moving around. He is such a brave kid who has to do way too many hard things. He did amazing, of course! 

Eric's regular inpatient pediatrician is the doctor he has been seeing this week, except when his Onc stopped by yesterday, and she wanted him to get out of the hospital on a pass today to see how he did moving around. Due to the MRI, we couldn't get out until later in the day so I took him to the Lego store to get a reward for doing such a hard thing today, and he got an Orange Julius too. 

No headaches for 2 whole days 🤞🤞🤞

Hospital Days 3 & 4 / ?

Saturday, Day 3, was much better than the day before. No appointments or 'ologies to see and no headaches!!! Also, not a heck of a lot of light or movement which were triggering the headaches, but for now we'll be happy about no headaches. He played video games for the first half of the day and built a LEGO set for the rest of the day. He chose dinner from Boston Pizza for his favourite Bugs and Cheese and here he is enjoying it. 

Unfortunately the night wasn't quite as good. Eric woke up sometime between 2 and 2:30 and could not get back to sleep. His legs were aching and nothing worked to stop it! It was 5:30 in the morning before he finally fell back asleep. His nurse came in at 8am to do his vitals, but then left us alone and we went back to sleep until almost 10am. 

Sunday, Day 4, the morning was ok, but about 12:15, Eric pushed away his Lego, grabbed the back of his head and told me to close the blinds. We called his nurse to try and get ahead of the migraine, but it's just coming on too fast. It was only seconds later and he was screaming in pain. This time it was his stomach and legs too, as well as the head pain. His port was hep locked, so it took a few minutes to get the IV access, but at least the IV meds work faster. They're now giving him a "migraine cocktail" of meds to treat and it does work well. It took him a couple hours to recover; no longer in pain, but just to feel "normal" again. At least this med does seem to allow him to feel normal again, which I don't think was the case before. 

The rest of the afternoon has been okay. Chuck came by for a visit and to bring us a few necessities, like a weighted blanket which I'm hoping will help with Eric's ache-y legs. We had a nice dinner and Eric is chilling with a video game, which doesn't seem relaxing to me, but I'm not a 10 year old boy. I finished the show I was watching earlier today, so I'm in the market for a new one and taking suggestions. 

Fingers crossed for a better night tonight and a plan from Eric's Oncologist tomorrow.