Clinic Yesterday

Eric and I visited the clinic yesterday. Yes, on a Tuesday! It is not his doctor's regular clinic day, but our Nurse Practitioner had us come in for a count check before heading out to camping/waterslides. The bad news, his platelets and ANC have both dropped since last week. Actually his ANC/Neutrophils (germ fighting white blood cells) are basically non-existent at only 0.1. The good news is that they are still letting us go camping and to the waterslides! Our Nurse Clinician drew this picture for Eric:

The team still believes the drop in blood counts is a result of the most recent treatment and are planning to wait for his counts to recover before starting the next round. We have to be prepared for the next round to have a similar effect as well and hopefully that won't impact our summer too much. Camping prep now includes packing a thermometer and knowing where the closest hospital is, but we get to go camping for the first time in more than 1.5 years!!! 

Last Friday, I took the kids to The Outdoor Experience at the Aldergrove Community Center and they loved it. They thought it was a pretty amazing way to kick off summer vacation (after the previous day of pouring rain!) though Eric did get stung by a wasp x2!!! It was the first time he'd ever been stung and luckily there was no reaction beyond it hurting. I don't have many pics because we were busy playing, but here are the kids in the lazy river:

Over the long weekend, the kids kept busy riding bikes and playing a new game they've invented called Hide & Squirt. In case it isn't obvious, that is hide and seek with squirt guns.

We're back at clinic next week. Since his counts are low, we have to go every week for now :( 

Check Up at Clinic Today

Eric had his check up at clinic today to check his blood counts after they tanked last week. The good news, his platelet count is up, not normal, but up, which shows that his body is making fresh platelets. The bad news is that his ANC is now in the toilet. It is only 0.2 and those are his germ fighting white cells. While my brain is shouting relapse (re-relapse?) since he hasn't had this response to this treatment in the past. However, our Nurse Practitioner has assured me this is a normal response to the chemo and likely just a result of the repeated rounds. 

We're planning a couple nights camping next week to enjoy some water slides and I thought this might throw a wrench into the plans. So far, just a small wrench. The team wants him to come back again next week for a count check, before we go camping, so we've had to push our trip back one day. The real wrench would be if this significantly impaired immune system resulted in a fever, in which case, with counts this low Eric would end up in hospital and we'd have to cancel. So fingers crossed 🤞

In other very random, but good, news...the pet therapy program at the hospital is creating a calendar for next year with the pet therapy pets alongside past and present patients. Eric LOVES all animals and the pet therapy program went a long way to brighten his time in hospital. Last week when we saw the poster looking for patients to participate, Eric immediately told me to apply. We heard this week that he had been selected and he had a costume fitting today. He is going to be The Mad Hatter with Edward the bunny. Stay tuned for photos in the (distant) future. 

Tomorrow is the last day of school! Hopefully I will have loads of fun summer adventures to share 🤞

Catch Up

Well it's been awhile and we have been BUSY!

Starting with today, Eric had a check up at the hospital and his platelets have taken a nose dive since his last visit 9 days ago. He narrowly avoided a transfusion, but since he wasn't actively bleeding, we just have to go back early next week to check in instead. The platelets dropping is a common side effect of chemo, but Eric has sailed through on this treatment in the past. His Nurse Practitioner today said that he's had a lot of chemo and its probably just taking a toll on his body. He is definitely more tired, and more likely to get a bit snippy as a result. Of course, he is generally still in good spirits, trying to convince one of us to go in the (freezing) backyard pool with him this afternoon! He is on Day 19/28 of this round of oral chemo treatment. While we were in today, Eric's Nurse Clinician drew this picture of him and hung it on his door. 

Also today, before the hospital, Eric finished building this Star Wars LEGO ship. He's been begging me all afternoon to take him to the LEGO store in Surrey so he can buy a new set. His LEGO addiction is still going strong. 

Joel's been away at camp with his school for the last couple days. He's also grown again and is now 5'5". He's basically eye to eye with me and I don't like it! I expected him to get taller than me when he was 16, not 12! 

Last weekend, we went to Sicamous where we stayed in a cabin at the Sicamous RV & Cabin Resort courtesy of Starlight Children's Foundation Canada. It was absolutely pouring rain on Saturday, but the staff spoiled us with a pancake breakfast, burger BBQ and s'mores. They tie-dyed shirts with the kids and spent the day teaching the boys to play pool. During some lighter rain, we got out for a scavenger hunt, had a campfire and rode on the resort's train. The weather was much better on Sunday and we got to explore the area attending The Enchanted Forest and The Crazy Creek Hot Pools, followed by relaxation around the campfire. We are so grateful to Starlight for providing our family with this opportunity and to the staff at Sicamous RV & Cabin Resort for making us feel so welcome.

Our rustic cabin had a lovely porch swing (and a lot of mosquitos!)

We checked out Dutchmen Dairy in Sicamous and tried out some ice cream

Eric and I didn't realize this was a baby cow until we went to the other barn and saw the full size cows

The train at Sicamous RV & Cabin Resort. Eric rode around and around and around on it, dragging different passengers with him every time

Chuck's turn on the train

We even got to watch the hockey game

A waterfall only a few min walk from the resort

The staff did tie dye with the kids

Gophers everywhere. Millie really liked to put her head in all their holes

The boys thought perhaps Humpty Dumpty was pushed?

Millie did not like these horses. She barked at them. A lot. 

Chilling at The Enchanted Forest

Such a cool place; you can go into all the little buildings

The Cow Jumped Over the Moon

My favourite sign of the whole weekend

Chuck and Joel climbed to the top, Eric halfway. Millie and I stayed on the ground where we belong

Mama. Take a picture. Hurry up. This is really uncomfortable. 

Many s'mores were consumed, followed by some colourful flames

On Friday before we left, Eric had sports day and the classes performed the Hip Hop dances they'd been working on for a week.

Earlier in the week, Uncle Jon came to visit for a few days and Eric entertained him by playing in the (freezing) backyard pool.

The previous weekend, Eric finished up his IV treatment and it was an epic birthday party weekend! Saturday morning, Eric went to a birthday party at Lush where he got to make a bath bomb. Then we went to the hospital for his treatment and we asked for his port to be de-accessed so he could go to a birthday backyard pool party in the afternoon. That party was 4.5 hours long and when I went to pick up Eric, he was STILL IN THE POOL! The next morning, back to the hospital where Eric had to have his port re-accessed, which he thought was totally worthwhile for the chance to swim. He had his last (7/7) IV treatment and got de-accessed again. We went from there to Granny's to celebrate some family birthdays. I thought Eric would be exhausted and cranky after that super busy weekend, plus the treatment, but he wasn't at all. He got home on Sunday and immediately wanted a bath so he could use his new bath bomb!

Only 4 days of school left until Summer Vacation!

Day 4 of 7

Yesterday was Day 4 of 7 of the IV treatment (and Day 4/28 of the oral treatment.) Yay! More than halfway! Eric is doing quite well. He's been playing outside in the afternoons and feeling pretty good. He was a little nauseous last night around dinnertime. I gave him an anti-nauseant and within 30 min he was feeling better and building LEGO. We are both tired, Eric from the treatment and me from the driving. Aside from Monday which took longer just because it was the first day, the appointments have been nice and quick at only an hour, but that is about 3 hours round trip. 

We did get results of Eric's bone marrow biopsy and its still great news - all donor DNA and no evidence of the bad cells. Woohoo! 

Eric also had an ECG on Monday and the abnormality that had appeared in his heart rhythm is gone. There are some meds known to cause this so the Dr wanted to recheck now that Eric has been off the meds for awhile to make sure it had returned to normal. 

Everything is looking good! 🤞

Kristina, the outpatient Child Life Specialist has been spoiling Eric with LEGO all week. 

Next Steps

Strep test was negative and Eric is recovering well from his cold. He had a biopsy yesterday, and luckily there were only 2 kiddos on the procedure list since he had to go last because of his cold. He was into the procedure room at 10:10 which was great because he was just starting to complain of being hungry. Unusually, he slept for about an hour after. He never does that; always wakes up immediately! Everything went smoothly and now we just wait for results. Eric picked a Lego Dreamzzz set out of the toy chest at the hospital after his biopsy yesterday. 

On Monday, Eric will start his next cycle of chemo. This time, in addition to the 28 day oral chemo, he will also do the 7 day IV. The dr is recommending sprinkling in a couple rounds of the IV chemo the remainder of the year for best results. So he will do it this month and then not have to do it over the summer, assuming everything continues to go as expected. This means Eric won't be at school next week since we will have to drive into the hospital everyday for 7 days. On the plus side, we don't have to stay overnight! 

Luckily it is an exciting week at school this week while Eric is there and next week is just average. Today the class is having a pajama pizza party and Eric is very excited about it! Pic of Eric in his Pikachu pjs below. Tomorrow the class has a field trip for a Drawing Landscapes program. 

The Rollercoaster Strikes Again

This is a long one, buckle up!

I've been reflecting this week about how this journey truly is a rollercoaster; there are no gentle slopes, just very sudden peaks and drops. Well, maybe the peaks are more gradual, but the drops are definitely not. 

We've had a very busy week! For May long weekend, the kids and I went to Penticton to celebrate my Great Aunt Joyce's 100th birthday! I hope to be in her condition at 3/4 her age; she is amazing! It was also great to catch up with relatives that we haven't seen in awhile. Eric really connected with his 3 year old cousin (4th cousin???) Emma.

Despite the kids faces, they really did have a good time. Of course, the highlight of the trip was the hotel swimming pool. The kids were in there 3x a day, for hours at a time. Emma loved the pool too, so we called it ool-pay when she was around and Eric is still saying ool-pay because he thinks it is so funny! 

On our trip, we made it to a playground and for ice cream, of course. It was such a great weekend. The boys had so much fun and were so full of energy! 

On Tuesday, Eric finished his 3rd round of treatment and he is tolerating it very well. On Friday, I spoke with his doctor to discuss a plan going forward. First, his doctor recommends that Eric do this treatment for a year; he started in January. Even though all the tests are showing no evidence of disease, the Doctor says that is really about the sensitivity of the tests. So the tests are showing 0 mutations in 10,000 cells for example, but they don't have the ability to look at 100,000 cells and maybe there would be a mutation there. The continued treatment gives the best potential to put this all behind us in the future. Hopefully. But there are no guarantees, and no predicting what might happen when the treatment stops. The doctor is suggesting this is the best possible course of action, but with the caveat that there is very little evidence in Eric's particular unique circumstances and he is extrapolating from the information they do have. Additionally, we need to keep a close eye on what is happening in his system so we can re-evaluate if necessary. Traditionally we have done that via bone marrow biopsies, but his doctor says it is not reasonable to biopsy him every month for a year. He has spoken with the lab and they believe that they can gather the same info from his peripheral blood. They are able to look for Eric's specific mutation in the blood and also analyze the chimerism (donor DNA versus Eric's DNA) in the peripheral blood. On Wednesday, May 29, Eric will have a bone marrow biopsy and they will also conduct the new peripheral blood tests to ensure they are giving the same results. This was a very positive conversation with Eric's doctor that left me feeling very optimistic. There are definitely a lot of unknowns, but Eric is doing so incredibly well, and so much better than we ever could have imagined when he relapsed, and we have a plan to try and keep him that way. 

Picked Eric up from school on Friday; he has his Freezie Friday freezie in the pouring rain; I explain the plan from his doctor (overview) and he's all good. Home and hanging out until 6ish when dinner is ready and Eric says "my throat hurts." And with that simple statement, I know we're going to be headed to the hospital. Eric ate a little pizza but not much of an appetite. Then he says he's really cold, really really cold, why is it so cold in the house - it isn't. So I check his temp and its 38.2 oral. At 38.5 orally, oncology considers it a true fever and we have to call the oncologist on call. At 7:30 I check his temp again and its 39.2 orally. I called the oncologist on call and she said to head into the ER at Children's. We were out the door before 8 and at the ER by 8:30. The one nice thing about being an oncology patient is they call ahead to the ER so they are expecting us and we don't have to wait in the gross waiting room. It was so busy Friday night. And now, things get even worse. They have to access Eric's port so they can do bloodwork, and start IV antibiotics. The ER is NOT GOOD at this. They wait so long that his Emla (numbing) cream has worn off, so it hurts to have the needle poked in, and they miss! Luckily, they stopped there and called someone down from T8 (the oncology floor) to do it since they have so much more experience with ports. Two nurses showed up, both of whom we know and I was so happy to see them. They get his port on the first try and start drawing blood, but they only get one vial and it stops, they can't get any more. They want to try a few "tricks" to see if they can get it flowing, but mostly it involves adjusting the needle within the port, which isn't so much taking it out, but sort of massaging and poking and prodding, which Eric finds way worse than the actual needle. So he's screaming in pain, and don't forget, he's got a fever and is feeling miserable. They still can't get any more blood, so they take out the needle and try again to access. More screaming and also crying and saying "mama." My poor baby; he usually sails through these port accesses, but this was awful. Anyhow, they still can't get any blood out, so they put heparin in to sit there and unclog the port, but after about 5 min they still can't get any blood out. So the doctor decided we should try another way because we need to get the bloodwork to find out if he is neutropenic and get treatment started; time is important here. She wants to do an IV so they can also deliver antibiotics that way, but Eric hates IVs because they pinch his hand, so I said no, they could get the lab to draw blood from his inner elbow and we'd worry about the antibiotics later. Meanwhile they also wanted a throat swab and nasal swab - more screaming. And the lab came to do the blood draw - no screaming. Finally, Eric could settle down to sleep for a bit; I think it was around midnight. 

His bloodwork came back and he is not neutropenic; in fact, his ANC (germ fighting white blood cells) are the highest I've seen them since all this started. Around 2am his nurse tried to get blood out of the port again, which is still accessed, and hooray! it is unclogged and she gets blood back. We don't need blood now, but she knows it is in the right place, so can start the IV antibiotics. I went out to the car to get Eric's stuffy and see the ER is still packed. Around 3:30 am, I find out they have recliners in the ER and you just have to ask for them. WHAT?!?! After all the night time hours I have spent in those uncomfortable chairs, now you tell me??? So I asked for a recliner. It arrived and was followed by the doctor who said that she'd talked to the oncologist on call and since he wasn't neutropenic, and we were able to get a dose of IV antibiotics in, she could send us home with a prescription for amoxicillin to start the following morning. (I didn't even get to use the recliner!) We left the hospital just before 4am and arrived home at 4:30. I think we were both sound asleep by 4:35. Eric woke up Saturday morning after a good sleep in with just a sore throat, no fever and no other complaints. By Saturday night, his throat doesn't even hurt anymore. Right now, Sunday mid-day, he is building a fort in the living room, as if nothing ever happened. 

His nose is a bit congested. The oncologist on call called this morning, she still doesn't have results of the strep test (throat swab) and isn't sure she will get them today. His nasal swab did show rhino/enterovirus - the common cold. She said as long as he's feeling well, he can go to school tomorrow. The rollercoaster dropped fast and furious Friday night, but seems to have levelled out for now, until next time. 

I also donated blood this weekend, so here's your reminder to book an appointment if you haven't done it in awhile. There are people in need of your donation.  https://www.blood.ca/en

Clinic Today

Eric had an appointment at clinic today, but not much to report, which is a good thing! Eric does have a cold with nasal congestion and a bit of a cough. The doctor said it's a virus, but he wasn't going to go looking for which one (that would involve a nasal swab, eek!) Eric was also complaining a bit about a sore ear yesterday, but not today, and the doctor said he couldn't see anything in either ear. He figures it's all related to the virus. Eric's blood counts are good, so he should be able to fight it off relatively easily. We do have plans to go away for the long weekend. I was going to say it is our first excursion since Disney World in December, but actually we did go to Prince George for a few days at Spring Break. Regardless, it feels like an exciting adventure anytime we are allowed to go anywhere out of the Lower Mainland! We do have to call the doctor Friday morning to check in and just confirm that Eric isn't any worse, before we go. 

The doctor talked a bit today about next steps, and basically doesn't have any! He and the team are going to pull together some info and review a plan with our family in the next couple of weeks. Eric only has 6 more days left in this treatment cycle - yay! - but what to do next remains a bit of a mystery. This treatment hasn't really been used in children with his condition; it has generally been used for adults who are unable to have a bone marrow transplant. Since Eric has already had a bone marrow transplant, and his new marrow is now happy, happy, it is quite a different situation. 

Pic of Eric hanging out on the couch this morning with his Millie pillow.