28 days with a pump

Its been a while since an update. Though we've been quiet we've been busy. We had a great family visit over the July long weekend before Eli started his next round of treatment. There hasn't been much to report since then as this round is a 28 day continuous infusion. What does that mean you ask? Basically Eli has a pump that is loaded with this round's drug which is administered continuously for 28 days. He has a pump that’s hooked up to his port and he carries it around in a backpack. 

This treatment is called Blinatumomab, aka "Blina" (Recent article from the US National Cancer Institute or Wikipedia) and is what is called an Immunotherapy. In short, chemotherapy is basically a carefully administered poison that has a lot of collateral damage. Immunotherapy gives the immune system carefully crafted instructions that direct it to attack the the cancerous cells. This kind of treatment is one of the most exciting developments in cancer research because it is a very targeted treatment with far few side-effects. Eli was taken into a study in order to get this treatment. It has been around for a number of years but has only been used in cases of relapse where it has proven to be very successful. Given its success and its lessened impact on the body as a whole, they are wanting to move it into the regular course of treatment. If you didn't check out the articles above, just know this treatment is "take equity out of your house" kind of costly, which makes us INCREDIBLELY grateful for our Canadian Healthcare system. Our system is not perfect but not having to chose between having a home or having our son takes a significant stressor out of the equation.  This treatment should also lesson the long term impacts of treatment, particularly with regards to organ damage.

He has to go back in every 3 days to have the pump refilled but beyond that he's doing pretty well and he & Dana are able to have a little more freedom. This has allowed for some day trips and even a couple overnight trips to mama & papa's house. The great thing about this as well as there isn't recovery time needed after it like there is for chemo. He is scheduled to be finished the Blina next Friday after which he has a full week off!

At the moment, the plan is for them to return home for the week. This will be the first time home in 5 months. Praying for the treatment to end when scheduled (there the possibility of the end of treatment being delayed if there had been any interruptions over the 28 days) and clear travel through one of the worst wildfire seasons our province has seen. 

We also have an idea of what the next few months look like. The next round will begin the second week of August and will be 8 weeks of treatment in 2 week segments. This means 2 weeks of chemo, and then recovery before the next 2 weeks. This will involve minimum 4 day hospital stays every 2 weeks. With recovery delays, the 8 weeks will likely be more than just 8 weeks. After that round will be another 28 day course of Blina after which we have another one week window for a visit home before more chemo. 

Overall we're all getting tired. We knew this would be a marathon, and that is certainly true. We are very much looking forward to the next few weeks when we have the opportunity to be together when things are going relatively well. A home visit will be good for everyone but also comes with a decent level of stress with regards to travel. Day to day and overall we're getting by. We have been overwhelmed at times by the love and support and are most grateful. Thank you for every prayer, thought and act of kindness shown to us.

Canada Day & Family Time!

Canada Day and increasing blood counts gave us a family day away at my folks place. It was nice to have the whole family together (except for my nephew who was working hard hanging beef at his new job but we still saw him later) The Jays Care Foundation sent Eli a great big package of equipment so of course we had to play in the backyard!

Today (Friday) he starts the next round. This will be a 28 day 24/7 infusion and he’ll have a little portable pump that he’ll be hooked up to for that time. He will be in hospital for three days to monitor the start and then we’ll see how thing go. 

K and I are just about to hit the road home. For those who don’t know BC, the village of Lytton is on our usual route (we went through last Sunday when they were breaking the heat record the first time) and so we will be detouring as the highway is closed. The fire situation between here and home is pretty volatile so we’re praying for a smooth trip without additional detours. At this hour we have a clear path home but that can change on a day like this. 

We had a good visit. Dana and I even got to go out for dinner alone. It was good. We needed it. We are just about at the end of month four and this is definitely a marathon.

Update. K & I made it home without incident. Eli has also started on the next round and so far is doing well.

16 weeks... 112 days...

16 weeks down this road called leukemia. 112 days away from home. Some of those days have been harder than others. Last week Eli finished the second phase of treatment and was cleared to spend a few days away from the hospital and head to my parent’s house. He and Dana got a much needed change of scenery and some family time. 

Monday Eli went in for a biopsy that would kick off the next phase of treatment. Unfortunately his bloodwork came back indicating he needed to be admitted and treatment needed to wait for him to bounce back. This was a discouraging setback for us and has causes some level of stress this week. Dana had the sense that the ward was really busy this week, just from the number of occupied room and the staff just being busier. This afternoon she finally had a chance to talk with Eli’s primary oncologist. It was a good talk and basically there are a number of more complex cases in the ward right now and Eli is pretty much stable so requires less attention. It’s a sobering reminder there are kids in much tougher shape than Eli.

The drop in his counts are within the window that such a drop is expected after his last round of chemo. Kids with Down Syndrome can be quite sensitive to the treatments, which is what we’re seeing. The upside of that is it is also an indicator that their leukemia is sensitive to the treatments.  So we’re seeing his body having a harder time but the leukemia cells are having a harder time. The treatments are also doing a number on his tastes and appetite and it’s getting really hard to get him to eat. 

Because Eli has Down Syndrome the doctors are monitoring him very closely and he’s spending more time in hospital than a typical kid would. This is because any child who gets sick during chemotherapy is at risk and requires immediate medical aid but kids with DS are just more vulnerable so they err on the side of caution and keep him in more. 

Going into the days ahead, we’re just waiting for counts to recover. Once they do he’ll have his biopsy and then should start the next round of treatment. The next round includes a 28 day 24/7 infusion which is administered via a carry around pump and he gets the bag swapped out every three days. This will allow for some more breaks with fewer clinic visits.  We also got approved for some respite support through the Blue Jays Care Foundation so that will be starting soon. Once this first 28 day round is done there is good chance they will get sent home to PG for a break. We’re really hoping for this so we can all be home together. 

How are we doing? We’re tired. We’re all tired. We’re taking things a day at a time but it’s definitely wearing. We look forward to being able to be together again and when we are together we need time together.  With school coming to an end and my slate of contract work changing our and growing we’re keeping busy and will have to continue to flex but also have more opportunities to for visits. 

We continue to be filled with gratitude for all the love and support we’ve received through this journey, it encourages us and eases our load. 

Pray for us all to have strength of endurance, for Eli’s counts, for his appetite and just to stay on course. For us to have some good family time together when we can. We know we’re cared for and we have faith and trust for the road ahead.

Family Time!

Last week was some family time. With travel restrictions easing and the adults in our family one shot down K & I were went down to Vancouver for a visit. Eli's counts had dropped as was expected so he was again in-patient for the entire time we were there. This meant that K wasn't able to see him much as he was in the ward so Dana & I basically just swapped kids in the lobby and the girls went to Ronald MacDonald House and the boys hung out in the hospital room. I spent 4 nights in the room with Eli giving Dana the first break in over 12 weeks.

Eli & I settled into a bit of a routine that included a fair number of movies as well as some Lego and other fun things. The nurses and other staff are really good at helping to make things fun when they can. That included going Trick or Treating for some supplies (see picture below) doing scavenger hunts and other games in the halls. For most of the week Eli's counts were so low he couldn't go outside and he needed a couple transfusions as well, which is par for the course. Near the end of the week he was able to go over to RMH on a day pass so we were able to all be together for a few hours at a time. Beyond a brief time during our first visit in March when we were just trying to get things set up for Eli's stay, this was the first time we'd all been together in 3 months. 

Dana & K were able to spend several days together doing some projects and just having a good time being together. One day they were able to go on girls day with Mama & Auntie as well, a definite highlight. Dana & I didn't get very much time together this trip but this we really about the kids getting to see the parent they haven't been locked up with for the last 3 months and to see each other. As we move forward through the months ahead and Eli is able to be further away from hospital and for longer periods of time we'll get more time together. 

Today (June 8) Eli is getting his last dose of chemo in this phase of treatment. Bloodwork results from today will determine if he stays in hospital or goes back to RMH. Depending on how this week goes he may even be able to go out to Mama & Papa's house for a night or two this weekend. Next Monday he will have another biopsy to see exactly where he is at this point. 

The plan ahead involves various treatments through the next phase which will take us into November. This phase however should involve longer periods of time without as much recovery time between treatments. This means he'll be able to be away from the hospital for days at a time and go out to stay with family and even better, likely come home for a week at some point in the summer. I'll also go back and forth with a little more frequency in the months ahead.

Thank you again for all the love and support shown our family. We are continually left speechless by the love and kindness shown us in so many ways.

Week 10, 11 & 12

Its been a bit since the last update and I realized a few weeks have passed. Though we've been quiet, much has been going on. We're in the midst of the second phase of treatment which is 8 weeks long. The first four and second four weeks more or less mirror each other but there is often a delay between the two halves of this cycle. Though Eli was actually able to move forward without a break numbers-wise, the doctors decided it would be good to give him and Dana a break for a few days after being in the hospital for four weeks without a break and with many tough days (and nights) so they went to RMH. The following week Eli started the second half of this phase and thankfully did not experience the side effects he did in the first half. They were able to spend about two weeks at RMH, only going across to the hospital for clinic treatments. This week is now the third week of this four week cycle (seriously you should see the calendar we have to keep track of this stuff) and he was readmitted on Tuesday as his counts had dropped (expectedly) to levels where he needs the on-going monitoring and supports available in hospital. He will likely be there for the next week or two. Hoping that all goes well but also well aware that the side effects can come on at any point. 

This phase will bring us to about mid-June when he'll have another biopsy to see where he's at and then beginning the next phase of treatment. The next phase of treatment will be several months and take us through November. This round does however offer us the possibility of Dana and Eli coming home for about a week at some point this summer. This would be a very good break for all of us after several months and how abrupt Eli & Dana's departure was after that phone call that rocked our world. With the loosening of health orders and those family members who can be, all vaccinated and my work becoming more flexible K & I will be able to visit more often as we go into this next phase of treatment we're more likely to actually be able to be together as a family. 

As we continue on this journey, Its been harder to find things Eli will eat. Changes in taste and preferences are common through chemo and its a struggle at times. Dana has gotten creative with slipping extra calories in with things like subbing out milk for whipping cream and other fun substations. If you've found your clothes have gotten too big and baggy over this past year ask Dana for some creative ways to increase your calorie count.

I have now concluded my teaching contract at the college and get a break from that for a bit. There is a good chance my course will be funded again and then there's the possibility of the course which I've taught twice now going into regular rotation. I'm also working on a few other interesting things that are keeping me busy and paying the bills. I’ve actually got a couple of very exciting things on the horizon professionally.

Once again we are most grateful for the love and support expressed to us in so many ways. As we head into summer and school is out our schedules will change again. We are looking forward to relaxed restrictions and having some more flexibility. We are hoping for some time together as a family over the summer but also will be having some time with just K & I. There's the possibility of some road trips and other fun times. There's also the likelihood of Eli being able to be away from the hospital for days at a time which will give more opportunities for breaks. The hope of these breaks is giving us a glimmer of light at the end of the tunnel, which is welcome after such a long stretch of just a tough go and the length of the journey starting to wear on all of us...

Another week or so gone by....

Well it been over a week since our last update, lots has happened, but not much has really changed. Eli is now finished week 3 of 8 of the current phase of treatment. The first week was pretty rough in terms of side effects and we were bracing for the second week to be as well but he ended up just sleeping lots. This past week's treatment came with the warning that there could be an anaphylactic reaction which caused some anxiety for us. The doctor told us its not really common but happens enough that they are ready for it and the whole team gets the heads up. Some doctors don't give the heads up to limit anxiety ahead of time, some give the heads up to limit the panic from parents in the cases it does happen. So its kind of a low level stressor for every parent or extreme stressor for a few.

Eli's counts have been too low to even allow him to go outside for the last while. His numbers are starting to go up but are expected to drop again with each round of treatment. He & Dana are pretty much staying in the room but trying to get out and walk around the ward. The days are getting long. K & I are home and trying to keep up with life. I'm working a number of contract pieces at the moment while continuing to teach at the college through the end of May.

This past couple weeks we were blown away by the love and support we've seen from our community. The PAC at the kid's school arranged on online silent auction and it was an incredible success. We are so grateful as we don't really know when or what the unexpected expenses will be on this journey but they do keep popping up and it has taken a huge stressor off of our family. 

At present, we are waiting on Eli getting strong enough and his immune system to recover a bit so he & Dana can go back to Ronald MacDonald House, even for a few days here and there. We are also waiting for the current health orders and visitor restrictions to be lifted before K & I can return to visit.

From the list of things that we really didn't want to deal with right now, Dana actually broke a tooth over the weekend. Fortunately the amazing nurses on the ward helped her find a dentist and then my sister was allowed to come and sit with Eli for a few hours while my brother-in-law took her to her appointment. It was the first time in 2 months Dana left the hospital. Fortunately the tooth was an easy fix.

 

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.