Long few days

It’s been a long few days. Eli got his first dose of the next round of chemo last Thursday and that evening had a fever. This is a possible side effect of this particular treatment but he still had to go in for a round of bloodwork to make sure it was a chemo reaction and not an infection. It was 2am Thursday night they got back to the room at RMH. Friday morning the fever was back and Eli was readmitted so they could monitor him and treat the side effects. Dana has been with him the whole time and had 4 nights of a nauseated, feverish child. She’s a rockstar but pray for strength for her because it’s hard. He’s also not eaten much or kept everything down over the weekend.  The treatment that he was reacting to is a 4 day course given Thursday to Sunday. Yesterday he had perked up quite a bit and was getting to be more himself and even got to the playroom. He also got a unit of blood yesterday to top him up, (if you donate O+ thank you!) Really hoping for a good day today and some good rest for both of them before starting again on Thursday. 

This phase of treatment is eight weeks and we’ve just finished week one. It’s not the same chemo drugs every week but we are looking at several more weeks like this one over the next eight. They will likely keep him in the ward  for the duration of this phase now knowing show his body reacts and the level of monitoring and care he needs. Chemotherapy is nasty at time and there’s no way around that.  We walk through it with the end in mind and the hope we rest in. 

Once we get through this eight weeks we move into the next phase which is where Eli will be receiving a modified treatment as part of a study. This involves replacing one of the chemotherapy drugs with an immunotherapy that is already known to work in cases of relapse. The study is looking at using it earlier to see better outcomes. The advantage to this treatment is that it’s less toxic and should have fewer side effects. It also opens to the door to a week home at some point this summer as he’ll have times between rounds with much less need for recovery time. If not home, we will at least be leaving the hospital for a week here and there so we can have some family time. We are really hoping for this. 

At this point, given current travel and visitor restrictions extended through late May, I won’t be able to go down for some time now. It’s hard, but unfortunately necessary. We are grateful for the technology that allows us to stay in touch, it’s not the same as being together but think of how far we’ve come from mailing letters. 

Thank you again for your love and support.

Round two and the next phase of treatment

The past week was pretty quiet as Eli we awaited the result of the bone biopsy and were between rounds. Dana and Eli have been settling into RMH which will be home for the months ahead. They were able to take in some of the activities and resources at the house and enjoy some sunshine.

Yesterday (Thursday) Eli had his clinic appointment and we were to learn the results which determined the path forward. We talked with the doctor for over a hour and half and here are the key takeaways:

-Not full remission but close. Disappointing but actually a good thing because of treatment plan he'll be on now.

-Qualifies for a couple of studies aimed at refining treatment to improve outcomes and take a lesser toll on the body. This is a good thing.

-Though the treatment will be less hard on his body its longer and we're now looking at mid-late November for a return home.

-Depending on his number and on travel restrictions he *might* get a week here and there to come home.

-Yesterday/last night was rough and the days ahead have the potential to be the same as he had a not unexpected reaction to the chemo and Dana was in the ER with him until about 2am.

The longer version:

-Eli is not in full remission but he was really, really close to where they consider remission. This means the course forward keeps hitting the Leukemia harder. Though disappointed he is not in full remission we knew this was a likely outcome. On the plus side, the doctor told us this is good because they are finding the small percentage of children that relapse tend to be those who from this test appear to be in remission but there's a little bit of leukemia that's too little to detect and it comes back. So better to be in remission and and treated as if you're not than to not be in remission but treated as if you are.

-Being on the "not in remission" course does however mean that future rounds of chemo will be stronger and it takes its toll on the body. Because of where he's at, they had spoken with us at the outset about studies he may qualify for. Given his current number and risk factors he qualifies for study that will differ from the standard treatment. The overall goal of the study is to see if using a treatment known to be effective in cases of relapse produce better results if used earlier. The main thing is this isn't a new or experimental thing, its a tweaking with the recipe type thing. The big upside is that it's less toxic than the standard treatment as there will be rounds of immunotherapy in place of some rounds of chemo. 

-The benefit of the gentler treatment however is that its longer. We are looking at seven months from now before he's able to transition from RMH to home. This puts us in mid-late November for a total nine months away from home. After November, he will still need treatment for another year and half. Some of that my be done here in PG but it sounds like he'll be going done pretty regularly with many of those trips being fly-in/fly-out day trips.

-Between now and November there is the chance of him coming home once or twice between rounds but this won't be until at least July or August and will be dependent on a number of factors including his numbers but also travel restrictions and the public health risks. There is also the more likely possibility of K and I being able to travel down (we can't at present) to spend some time at RMH with.

-Yesterday/last night. Eli has shown from the first round he is sensitive to the side-effects of treatment. As he started round two yesterday they came with a new round of side-effects. One of those is flu-like symptoms, which they treat very seriously. Dana had to monitor his temperature and about 8pm he started running a fever. This always requires a call in to check with the oncologist for direction. They said to wait a half hour and without improvement take him to the ER to be checked. As a cold or flu or inflection of any kind can escalate very quickly they have to do bloodwork to eliminate those possibilities and ensure its a reaction to the chemo. The bloodwork was cleared but they kept him until his fever came down and also his heartrate which was elevated came down and they got back to RMH at about 2am. This morning his fever is back and so they moved the appointment he had for today up.

Settled into RMH and start of being apart...

Yesterday was a full day. After moving over to RMH on Wednesday we had our first night there. First night without nurses coming in for vitals checks or beeps and blinks from various pieces of equipment in the room and outside. RMH will be home for Eli and Dana for the months ahead. It’s an incredible place with so many supports and provides a place for families like ours who are from out of town to stay during treatment. 

Eli had his biopsy and lumbar puncture yesterday as well. It went seemingly well and we should have preliminary result soon but it will be about a week for the full lab work up. With COVID restrictions, only one parent can go into the hospital for appointments and treatments so I said goodbye when they went in for the procedure yesterday. 

With COVID restrictions due to rising cases in our province RMH is no longer allowing parents to come and go between RMH and their home community. This means I’m not able to return until further notice so at this point we don’t know how long it will be until I can return. It sucks, there’s no way around that but understandable considering the number of very vulnerable children there for whom any sickness can cause significant consequences. 

K and I drove home yesterday as well. She has spent 3 weeks with my parents, sister & brother-in-law and nephews where she had an incredibly good time. All good times must come to an end however as she will return to school on Monday. 

A transport truck that went off the road closed the highway ahead of us on the way home so we opted to take the detour around via Lytton -> Lillooet -> Cache Creek. If you’ve ever driven that road, you know it’s not for the faint of heart or weak of stomach. We made though and enjoyed some new scenery and got back on track just a couple hours behind schedule. It was good to get home and Rosie was very happy to have some of her people back. 

Looking ahead, we wait the results of yesterday’s biopsy to set the exact course of treatment. RMH is great and will afford more flexibility in the day for Dana and Eli which makes some things easier but sometimes harder for them. There’s a full kitchen where Dana can prepare meals which is great because they can eat familiar meals, the trade off is meals aren’t just delivered to the room on a tray like at the hospital. I went grocery shopping for Dana before leaving so she’s got what she needs for the time being. K and I will be home for the foreseeable future. I’m teaching for the next 2 months at the college along with a few other contract positions I have. It’s going to be a different season of life for us but it’s not going to be forever.

One month in....

Well we’ve passed the one month mark on the leukemia journey. Hard to believe that long has passed sine that morning phone call that upended life as we knew it. Eli has now nearly finished his first round of chemo known as the induction phase. On Thursday he will get another lumbar puncture when he has his bone biopsy. Things have been mostly stable as he responded to the treatments. His ANC which is the white cells that go on the offence in your immune system needed to hit zero and then start recovering. They hit zero last week and then started the expected rebound. He needed to hit a certain number to be able to relocate to Ronald MacDonald House and was on track to move Friday but then the numbers dropped again. This is not unusual but it we sure disheartening to take a step backwards. His count has been moving back up and we’re hopeful he’ll hit them tomorrow. 

The side effects are starting to show now. He’s losing hair, some folks shave their heads to show solidarity with loved ones going through chemo, I’ve been practicing for over 20 years 😜 Other side effects will surely come. We’ve been told some of them will build with each round of chemo as his body reacts to the cumulative impact of the treatments. He’s also tired and losing muscle from not being nearly as active. It’s hard when most days he hasn’t been able to even go for a walk outside and you can only walk the halls around the ward so many times. 

Today his vitals pointed towards needing a transfusion which he received this afternoon. He kinda just needed a bit of a top up to keep him going in the right direction. It’s a little emotional to know someone who we’ll never know gave him this precious gift. I’m sure it won’t be the last time he gets a top up of O+ so I’m immeasurable grateful to those who give it. 

This journey isn’t easy but we have a lot of support and trust we will make it through. Some days are harder than others. We’re taking just a day at a time  and trying to just keep looking ahead. We know there will be a lot of tough days but we know we’ll have folks cheering us on.