Post treatment - Looking ahead

I looked at this blog today and realized it has been a year without update. Eli completed maintenance treatment in August. He had his last treatment at Children's Hospital the month before so his end of treatment was a sort of anti-climactic final pill before bed one night. We opted to have cake and celebrate. We then had a big party in late August to celebrate the end of treatment! In October he had his port removed, marking the true end of treatment.

In the months that followed, life has started to get back to normal. The stress of Eli being immune compromised or at risk of complications from his port is gone. He is now just having monthly bloodwork to make sure everything is good. Just last week made a trip back to hospital for his 6 month check up and all is looking good.

As we settle into life after cancer, we're making plans. We lost a lot of time as a family over this journey and, we know many families that have lost more than time. Tomorrow is not guaranteed and thus we are shifting some priorities in life. We are most grateful to be able to go to Disney World in Orlando thanks to Make-a-Wish. We are also looking at taking an extended family vacation this summer as we have been unable to do so for several years.

Not sure when the next post will be here but for now, thank you for following the journey.

The long road of maintenance

I realized it had been a long while since the last update here. It has now been just over a year since the intense portion of treatment has concluded and our family left Ronald Macdonald House. 

Since Maintenance began, Eli has had to go back in every four weeks. For much of the past year those appointment were two in Vancouver, one here in Prince George before switching to one in Vancouver and two in Prince George. This made for a fair number of trips to Vancouver and we were grateful those trips became less frequent once winter hit and even more grateful that it was possible to fly for January's appointment.

The reason for appointments in Vancouver is that, those involve a lumbar puncture, for which he is put under because who wants to be awake for that!

Things have gone fairly well over this past year. Throughout maintenance, he not only has the regular lab work and appointments but also daily pills. We also have to be continually vigilant with regards to secondary illnesses. Its really hard through cold/flu season but if he has a fever, we have to take him into our local hospital for lab work and consult with his care team at BC Children's. Fortunately, we've been blessed in that this has only happened once in the past year. 

At this point we only have two more trips to Vancouver for LPs and come Aug 9 of this year he'll be done the daily medications. After that he will be scheduled for another trip to Vancouver to have the port removal operation. He'll then have regular bloodwork just to watch for relapse, which a small but still present possibility. We'll still have to make trips down to BC Children's from time to time as his oncologist will still want to see him in person from time to time for follow up. 

We pray all continues to go well but there is the small but, ever present, chance of relapse so we just keep moving forward, thankful for each day. We have been carried through so much and we know we will be carried on, no matter the road ahead. 

Reflections: The hardest thoughts...

There have been a number things I've held back from writing that deal with some of the really hard parts of this journey. Things that have caused an underlying stress at what could be but we didn't want to cause alarm or additional stress and worry to others. These are some of those things. I struggled with posting this but have learned the struggles and anxieties are not unique to us. Its also important to name your struggles and so this has been a long reflection and process of naming some of the things that have been, and continue to be hard. It is my hope by sharing this that others on this journey would know they are not alone and, if you know us or someone else on this journey, that you may know some of the not so obvious struggles. If you struggle with anxiety or worry about us or other loved ones walking this journey, this may not be the best post to read, its gets harder as it goes. Proceed with that warning.

The readied response:

This little sheet of paper and the items in the tray above it may seem normal enough in a hospital room but they are both a source of stress and reassurance. You see one of the medications Eli received multiple times has the risk of causing an anaphylactic reaction. The trouble is, no past reaction is not an indicator of no future reaction. We were told such a reaction isn't really common but common enough that all the staff on the floor know a patient is getting this medication and no one is on break. The calculations and supplies pictured above are the prep to deal with such an adverse reaction without having to waste precious time figuring out doses and getting things ready. We were told the team has to walk a fine line between telling parents the risk upfront and causing the stress of knowing what could happen, but having them prepared for when it does, OR not causing the stress of to deal with the stress of a reaction that brings a whole team into the room in a matter of seconds. So we lived with the knowing he could have such a reaction, but the reassurance that they were ready and we'd just have to step back and let them do what they needed to do to save our son.

Code Blue:

If you've ever watched a medical drama you know a code blue is all hands on deck and there's lots of running and super-human feats to save the patient. If you've seen a code blue in a real hospital, you know its all hands on deck but with much less drama than on TV. Christmas Eve there was a code blue in another room. The alarms went off, every doctor and nurse headed, calmly, to the room for which the code had been called. I don't know anything about the patient, only that they, like our boy was in a state that warranted spending Christmas in Oncology ward. I walked by that room the next day and saw the door was still ajar. The bed was gone, Christmas presents were left on the bedside table unopened. Other items were in a state where they were obviously dropped because they weren't important in the moment the code was called. I don't know what the end result was for that family, I just know they were moved to ICU but the room left that way on Christmas Day hit me in the gut because its an ever present "what if" when you're in that place.

There must be a morgue:

Children's Hospital is the best place to be in one of the worst times that befall us as parents. The place that is so good, but you so desperately don't want to have to be there. One night, Dana came to realization that this is a hospital and hospitals have morgues, because not every patient leaves through the front door, fully recovered. In a hospital where everything is child sized and geared to brighten your day and make the whole ordeal a little easier, what does the morgue look like? The reality that we keep at bay for the sake of sanity is that not every child gets better, that some parents never walk out the door with their kids. We've met those families, the ones that know their time is short, the ones that one day just aren't around any more, the ones that have left the hospital life behind and going back to a life that has a hole that will never be filled again. 

We know more than one of the kids we were on the ward with have since lost their fight. Its not just a maybe, or a statistic of the percentage that doesn't make it, they are faces we know. Its a thought that sneaks up and levels you when you least expect. Its a nightmare that wakes you up in the night. Its a guilt that chews away at you when you are the one that takes your child home. 

Home again

Its hard to believe that we've all been back home for over a week now. We are starting to roll into a more regular routine. Eli has returned to school but only for about an hour and a half a day. We wanted to ease him into it as he really hasn't been very socialized for the past year but also to better monitor his stamina. Yesterday after Dana picked him up the stopped at the grocery store and he commented he was "so tired" so he's got a ways to go. 

He's happy to be home and to be able to play with his own toys and sleep in his own room again. Dana is even more grateful to have him sleeping in his own room after sharing with him for nearly a year. He and K are getting on fairly well and getting back to some typical sibling interactions ;-) 

As we all settle into being home together again things are starting to look a little more normal. The fridge *might* have more vegetables in it than the last year, the dishwasher is running everyday, there was only one pizza boxes in the recycling this week. We're figuring out how to get through bed times and mornings with all of us home again. 

There is still a real tiredness about it all as well as decent underlying anxiety that goes with this journey still being far from over. He'll go back in for his second maintenance treatment in a few weeks, which is an out-patient procedure but is still a trip back south. These trips will happen 3 out of 4 months for some time.

As we settle into home life again there are defiantly some adjustments and challenges but we look forward to moving ahead. We are most grateful for the generosity shown our family in so many ways over the past year, and particularly in this time as we try to take time to recover and reconnect as I shared in my previous post.

Fresh off the plane!

Even the cat is happy to have Eli home

Let's talk family recovery and support...

This isn't the easiest thing to talk about but we have been asked many times if we have a GoFundMe or if we need help getting through this. We have been blessed with provision through this journey and I really feel the need to acknowledge some of the provision we've received. (If you are just looking for the link to help us click here otherwise please read on)

I have to start with this, in Canada our direct medical costs are fully covered. This has included everything from the air ambulance the day of diagnosis, to hospital stays, to medications and supplies required for treatment. Eli has received hundreds of thousands of dollars worth of treatment for which we have never and never will, see the bill for. BC Children's Hospital is the best place on earth you never want to have go to. They take the absolute best care of sick kids and we have been amazed through this journey, and previous experiences there, at the level of care offered here. Our medical system is not perfect but the costs of treatment has never been a concern. What isn't directly covered, is medications considered optional while not in hospital. Things such as anti-nausea mediation or other preventative medications. For us, these are covered through another program.

After the direct medical care, the biggest expense would be housing while needing to stay near the hospital. This need has been met by Ronald MacDonald House where families like ours can stay at no costs to us. In addition to room to call our own, there is communal kitchens that are stocked with everything you need. Though you do need to get some of your own groceries, there is also a large supply of pantry goods and numerous meals provided throughout the week. Save-on-Foods provides a large amount of the food available to families and numerous local businesses provide family meals throughout the week. The funds needed to operate RMH work out to $125/night/family. By the time Dana & Eli check out our stay will be just short of 350 nights pushing the benefit to our family exceeding $43,000. We cannot express how grateful we are and we will be passionate advocates for RMH.

A smaller organization we had never heard of is the West Coast Kids Cancer Foundation This organization fills a vital gap in supporting families of kids with cancer. There is family lounge in Oncology ward of BC Children's Hospital. WCK keeps a freezer stocked with ready to be heated meals as well as a selection of snacks for families. One thing you might not think of if you've never been in hospital with your child is that the child is cared for but parent's are not and you have to figure out how to feed yourself while not being able to leave your child. The meals WCK provides have been a life saver many times over the past year. The provide other helps as well but its the meals that have blessed us.

Fisherman Helping Kids with Cancer we learned about on Christmas Day when an envelope stuffed with gift cards was handed to us. Christmas in hospital was hard, these fisherman made it a little less hard with their generosity. 

There are other charities and foundations that have provided indirect support, from supporting RMH and BCCH and their programs we have benefited from directly. I will just say that each of these organizations we have benefited from first-hand and will be forever grateful, and in time, we hope to turn around and support them back.

We have also benefited from the At Home Program, which is provincial funding for children with special needs. This program has covered the cost of travel for Eli and Dana to come home and will cover travel costs directly related to future appointments down south. It also is covering some home support in the form of a cleaning service to help keep our house the extra level of clean Eli will need over the next couple years.

Beyond the above programs that have supported us, we were blown away by the generosity of so many at the beginning of this journey. From the school staff and PAC who jumped up to support us right at the beginning, giving and raising funds we didn't know we'd need to individuals who have given us cash or gift cards to cover food and groceries. I've found anonymous envelopes in our mailboxes and e-transfers from folks I have spoken to in years. We've had people bring groceries to hospital and an incredible amount of help from family. We were brought to tears before Christmas, when the highways were washed out and we faced the real prospect of being apart for the holidays but decided to buy plane tickets and figure it out later. No one knew about that situation and yet two different families felt prompted to just send us money and the plane tickets were paid for before we really had time to stress about it. It has been incredibly humbling at times to be the recipients of so much generosity over the past year. 

Looking forward now, things are changing as we transition from intense treatment in Vancouver to the Maintenance Phase which allows Eli to be back home with regular trips back to Vancouver for less intense and less frequent out-patient treatments. Our journey is not over, we are just moving to a different phase of it. This phase will require on-going care and its own stresses as we deal with live with an immunocompromised child. 

As we prepare to all be home again, we do find ourselves in need of rest. We are emotionally drained and we have largely been apart for the past year. Through out this entire journey we have been so blessed with every need met and steady work that I've been able to keep up with our expenses. Being self-employed has its challenges and times like this are where those challenges show themselves. If you know me, you know I have always worked and worked hard and so this is a hard ask for me because I can go out and work and pay our bills, but our family also needs time together and time to recover. We have savings that we have been dipping in to and will exhaust those if need be but it is a stressor. To that end, if you would like to help our family recover, to be able to take a break and be together, to not just survive but get a little closer to thriving this is where we need help. We have decided to set up a GoFundMe and if you feel led to help us recover we welcome the help. The campaign requires a target but we don't have a specific target, we just commit to use any support given towards emotional, relational and financial recovery. If you would rather give to a charity that helps families like ours, we'd be honored if you supported any of the organizations that have helped us, just visit the links above. It is the easiest vehicle for those far away but if you are local and would be more comfortable helping directly please get in touch.

Daykin Family Recovery GoFundMe

11 Months but almost home!

Today marks 11 months into the Leukemia journey. It was March 5 of last year we got the phone call that sent us rushing to the hospital and then he and Dana flying to Vancouver that afternoon. Eli has had countless pokes and medications and blood products and more. We’ve been through round after round of chemotherapy and immunotherapy and we’re now near the end of treatment that requires him to stay down south at BC Children’s. This week he will finish intense portion of treatment and, after a one week break, will begin the maintenance phase.

Next weekend, after ~345 days Ronald McDonald House BC and Yukon will no longer be home away from home. As Eli has to be back for his first maintenance treatment the following week they will be spending the week at my folk’s place before flying home to PG on Sunday Feb 20, not just for a short visit but for good. This is by no means the end of the journey, he will need to go back for maintenance treatment and check ups about 3 out of 4 months for the next couple years as well as checks locally.

Coming home is a big deal and we’re all looking forward to being together again. We don’t expect it all to be smooth sailing, it’s been a nearly a year we’ve not been under the same roof and there will be adjustments for everyone as we find our way back into routines. Eli will also be transitioning back into school and we’ve been warned kids can really struggle with going back into the structures of school. Parents also often experience a fair amount of stress and an anxiety upon returning home and being so far from the medical team that you were so close to. So the difficulties and stresses of this journey are far from over but at least we will be together. 

316 and counting....

Its been a bit without a good update so this will be a little longer. The last couple months have been tiring, not any one thing but really the cumulative effect of this journey. Sometimes it seems like this has been going on forever, sometimes it seems like it wasn't that long ago. Today, however is day 316. There is no real significance to that number, I was going to write an update on day 300, but that day came and went.

As you would see in the last update, we were able to spend Christmas together as a family. Eli was coming off a round of chemo that left him very immuno-compromised and thus in hospital for closer monitoring and immune support. We were all four together for nearly two weeks and grateful for the time. Siblings can't stay overnight in the hospital so Dana & I took turns sleeping in the hospital with Eli and at Ronald MacDonald House with K. 

It was good to be together but it was Christmas in the Hospital with no other family which was hard. We are most grateful for the organizations, donors and volunteers who gave us so much. Christmas has always been somewhat low key in our family when it comes to gifts and such, we really try to not make it about what you get but the being together and celebrating the true meaning of Christmas. There's no way around it, Christmas in a hospital room sucks, but we are so grateful for the generosity of so many that want to make it suck less. It was overwhelming at times as items were dropped off at room from different organizations and even other families who have been where we were and just wanted to bless us, and the others on the ward.

Eli was kept in hospital until after New Years as we waited for his counts to recover which they did this week. He and Dana were able to get back to RMH for a few days while his counts continued to recover to the point he could start his next round, which he did yesterday. This is his third and, last round of immunotherapy which involves being hooked to a pump 24/7 for 28 days. This is the study drug he is on and has shown good results. The big bonus with it is that this treatment boosts his immune system which gives he & Dana more latitude as he just needs the pump refilled every three days. This treatment also does not get delayed once its started, unlike chemo which has often required recovery periods.

Once this 28 days is finished, there will be a rest week before starting the maintenance phase of treatment. Maintenance will involve out-patient care about three times every four months for which we'll travel down to Vancouver from home. Some of these checks may be done at the Prince George hospital but there will be a lot of trips down to Vancouver. These will be mostly single night trips but will go on for about two years. Bottom line is, Eli will be home, as we'll start moving back to normal activities in mid-February.

With the end in sight we are certainly looking forward to all being home together again. It will be difficult and stressful at times. We've been told families often struggle with the transition home after being in the hospital so long. It can be unnerving to not see the medical team on a near daily basis and to be so far removed from the hospital while your child is still vulnerable.

We are grateful for the love and support we've received from so many places. The journey is still far from over but we're certainly heading into a less difficult part of it.

In hospital Christmas

Pizza and movie again tonight. Eli is just over the halfway point of the current chemo round. Yesterday his counts dropped (as expected) below the line requiring he be admitted. Katie and I flew down on Monday night, grateful to get on a flight after 4 days of significant delays at the PG airport. Eli should be in hospital until after New Years so we’ll be spending our Christmas holiday in this room. We’re grateful visitor restrictions have been eased so siblings can come in for the first time since we began this journey. 

There are a number of things happening here and at Ronald MacDonald House including “The North Pole” where parents can make arrangements with the big guy for deliveries to our room. There’s a wonderful group of volunteers who coordinate this and many, many donated toys to make this happen. There will also be a turkey dinner on Christmas Day that we can bring up to the hospital room. 

This will definitely be a Christmas like no other for our family but at least the four of us can be together. Just being together in spite of the circumstances puts things in perspective

.

Visit Home

Well the days flew by but we had a good time together. The plane is “wheels up” and they are on their way back to Vancouver. We largely stayed home all week and just spent time together. We enjoyed takeout from most of our favourite restaurants and had some home cooked favourites. Dana Daykin enjoyed being in a kitchen that isn’t shared or the size of our first house (the RMH kitchen is *really* big and everything takes ten steps or more to get to) We had some fun in the snow and around our fire pit. We decorated for Christmas and gave the kids gifts. This year it wasn’t at all about the when but the fact we were together. 

When back in Vancouver they’ll check back into Ronald MacDonald House and grab the stuff they left in storage. Tomorrow Eli goes in for lab work before starting the next (and last!) round of chemotherapy. This next round is intense as it’s the last blast. We don’t know what it will look like or how he’ll respond. This round is supposed to last four weeks and he will likely feel the effects of it increasing as the days go by. They will stay at RMH for the most part as this round is mostly out patient but once his counts have dropped to certain level he’ll be admitted. 

Katie and I will be heading down for Christmas but we don’t know if Eli will be in hospital or not so we really will be taking things a day at a time this month. Christmas might be at RMH or it very well could be in the oncology ward. We don’t know but we’ll be together. 

Saying goodbye today was a little easier knowing the next time we are together is not far off. 

Though this is the last chemotherapy round, we’re not quite done. Once he has recovered from this chemotherapy there will be a third and final round of immunotherapy where he has the backpack 24/7 for 28 days. Once that is done around early to mid-February, it’s home for good! There will continue to be medications and monthly appointments for about a year and half but these will mostly be day trips.

For today we are just thankful for time together and a brief rest in this marathon.

Stilling fighting on...

Overdue update...

Its been nearly a couple months since the last update. Life has been crazy busy. While Eli continued through rounds of chemo we had our ups and downs. The latter two doses of this round of chemo had delays due to low counts and it took some extra time to recover which stretched things out. The delays in treatment and a couple other factors, resulted in a visit home in October not being possible. Due to commitments here at home K & I were unable to travel down until the end October. We finally got down the last week of October and were able to have some family time together.

Treatment-wise, Eli is on another 4 week round of immunotherapy until Nov 25. This round is much easier on the body but does require him to connected to a pump 24 hours a day. He's got a backpack for is so he is mobile but its one more thing to always be aware of.

The good thing is after this round is finished on the 25th they will be coming home a week! This will only be the second time home since March. Hoping for some good family time and some rest. At this point, Eli will almost certainly be in hospital for much of December so Christmas will look very different for us this year. 

We're now over 8 months into this journey and honestly we're all tired. People often ask what they can do to help and honestly its hard to answer. We've been supported by so many but the journey gets pretty lonely at times when you are unable to interact with other people. Being apart as a family takes it toll on everyone. Its hard on all of us in different ways as we go through this and we look forward to all being together again. There will be some recovery needed for all of us when we get through this. Don't know what that will look like but we know we'll need it in due time...

More Chemo and the roadmap ahead...

Its been a while, we've been busy but also just really tired. Eli is on the third of four doses of this round of chemo. They are supposed to be spaced two weeks apart but that depends on him recovering enough. As you'll see below, the first round was delayed a week. The third one however was on time. I have been very busy on the work front and looking forward to some quieter weeks ahead.

Longer term, we are looking at as much as two weeks at home in October before the next 28 day round of the immunotherapy, which is followed by another 4 weeks of chemo. That will bring us to Christmas which will be spent away from home. Eli's last round will be another 28 day immunotherapy which will take us through January. 

Below are a couple updates I didn't get posted here earlier.

Aug 22

UPDATE: due to bloodwork showing he hadn’t quite recovered enough from the last round, he got pushed off. Try again on Thursday. This happens. 

Tomorrow is another chemo day, the second of four in this 8-week round. The hope was each dose would be followed by about 4 days in hospital but the first dose he was hit pretty hard with side effects. We were told the possible side effects and nothing was outside the realm of expected side effects but it was hard. 

This was one of the hardest weeks we’ve had thus far. The main struggle was this chemo can cause sores in the mouth which he got quite badly.  This made it very difficult to get him to eat because he was just in pain. He was put on morphine but it caused itching so he was switched to other pain meds. In the below picture he has a wet cloth in his mouth because it was one of the only things that gave relief. Honesty he looked worse at times this past two weeks but is doing much better now. By Thursday (day 11) he’d recovered enough to be discharged and his appetite started coming back. Over this weekend he’s been eating and drinking well. 

He goes in tomorrow (Monday) morning to start again. Because he reacted the way he did they’ve given him some meds to try and lesson the side effects. The doctor also gave Dana some tips that seem to provide some relief. It’s tough to know what side effects will hit which kids so the first dose has unknowns but does inform subsequent doses and which side effects to prepare for.

On the home front, one of my on-going commitments is with Elections Canada so I’ve been very busy this past week and will be until well after Election Day. Katie is enjoying a few weeks with family and by all accounts is having a great time. She will come home before school starts and we’ll have a couple weeks of juggling her and my schedules. 

We continue to appreciate the love, prayers and support. It’s been a harder couple weeks, we knew there’d be harder stretches and this is definitely one of the harder parts of the journey.

===================

Sept 14

It has been a busy few weeks. Eli received the second dose of this phase of chemo. This two weeks went better than the first dose. He did get some mouth sores but not as bad. They had tweaked the dosage and put a nasal tube in so his nutritional intake could be kept up. He just went in this morning for dose 3 and PTL his bloodwork showed he had recovered enough from the last one to proceed. He’ll be in hospital for several days to allow the chemo to clear his body. After this he has one more dose scheduled in two weeks before moving to the next round of treatment. 

Things continue to progress though there is still a ways to go with the timetable to come home pushing well into January at this point. 

On the home front, last week was the beginning of school. K had been having an adventure down south with family for the last few weeks of summer and came home just in time to start school. It was a busy week between back to school and my working for Elections. We did manage to get away for a quick road trip to Valemount on the weekend as I had to drop off and pick up some materials. We had a lovely lunch as the Swiss Bakery there. Super yum! This week will be very busy for us but we have mama coming into town for the week to provide reinforcements 😁

Back to school was hard on both of us parents. Hard with just one going back right now and each of us missing one of our kids.

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.

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.