“How are you doing today?”

A question we ask and are asked countless times. A societal pleasantry that we are rarely honest in our reply. I’ve struggled with this over the past month because I’m not fine and I’m not OK with saying I am. I can tell you the average store clerk is not expecting to hear you just learned your child has leukemia and so you’re really not having a good day. I’ve started to respond with a “I’m just hanging in there” and found some just move on with the norm, some care to ask what’s up. Some days its easier, or at least less hard.

We’re coming up on four weeks into this journey now. Not much to update on as Eli continues through the first round of chemo, with his last dose in this round coming tomorrow. His counts finally hit zero earlier this week, which is what they want but it also means he is in the critical stage of having no  immune system. His numbers are now starting to recover, which is good but he’s in a pretty vulnerable state. We were starting to wonder where things were at but had a good meeting with one of the doctors this week who told us he is responding exactly at he should which was encouraging. We still wait for April 8 however when he has his next biopsy and we learn if he’s in full remission or not. That will determine the path forward and we really can’t know what things will look like until then.

Good news this week was Eli was cleared of the temporary diabetes so he no longer has to have his block sugar checked throughout the day or get insulin shots. The diabetes was a side effect brought on by a combination of the treatments and hopefully won’t return in future rounds as the combination of treatments changes. The steroids he's on are definately increasing his appetite and he is pretty must constantly asking for second break, third breakfast and mid-noonsies. This is expected but still needs to be managed. 

Other good news is that they are talking about discharging him to Ronald MacDonald House this weekend. This will be good and he and Dana have been largely confined to the oncology ward for the past four weeks. RMH will allow a little more freedom and activities but will also come with the challenge of having to figure out a new normal. At RMH there won’t be the vitals checks throughout the day or the lights and beeps of a hospital room but the magic cupboard where you put dirty dishes and laundry and they just disappear will unfortunately not follow them. At RMH you also need to feed yourself. There’s a great big fully equipped kitchen along with a lot of staples provided but we’ll be needing to get groceries and such. In some ways this will be good as Dana & Eli will be able to get back to more familiar food. We have family supplying Dana & Eli with much of what they need but we’ll need to get groceries too. We’re thankful the world kind had to figure out the whole online ordering and pick up thing over the past year :D

So how are we doing? Honestly its up and down. Being apart is hard on all of us. Dana and I have both hit the point where we stopped running on adrenalin and the building exhaustion hit us. Last weekend was really the first time since this all went down I really had a good sleep and woke up refreshed. I took a break and got out into my shop for the first time this weekend and started making a charcutier board and ended up making six, which was probably more rejuvenating than a good sleep. We're both pretty tired overall. 

Our plans are somewhat fluid at the moment, waiting on the next week. I’ll be down to spend some time with Dana & Eli in the coming days. Due to Eli’s current lack of immunity, I’ve been pretty much isolated at while working from home so that I don’t risk taking anything with me when I go down. Due to COVID restrictions RMH does not allow visitors so even once Dana & Eli have moved they will still be fairly isolated but we’ll see how things go. We have months ahead of us yet and so we really do appreciate the love and support shown to us.

Family time!

Well I managed to get down to Vancouver for the weekend and am so thankful I did. Due to to the expediency of Eli’s transport to Vancouver on the day he was diagnosed there really wasn’t any time for proper goodbyes and quite frankly the day was traumatic for our entire family. This weekend was time for Dana and I to talk face to face and a brief chance to spend time as a family. Eli was allowed to leave the ward for a few hours to go to Ronald MacDonald House with us and we got to have lunch together as a family, these times will be rare in the months ahead. Dana was then able to spend the afternoon and evening and part of Sunday with K
for the first time in two weeks and I got to spend time with Eli. It was good for all of us. The hope is, that RMH will become home for Dana and Eli about Easter weekend but that’s dependent on his numbers. We got the tour of RMH this weekend and have a room ready (Katie and I stayed there) and it will certainly be a welcome change from the hospital. Unfortunately due to COVID restrictions there will be no visitors allowed. 

I was also able to bring a number of items from home for both of them to make the stay a little easier. I also brought Eli some cards and gifts from friends here in PG. He was most excited. 

Overall he seems to be responding well. The sugar tests and insulin aren’t fun and are getting tiresome. He also takes multiple oral medications, some of which taste petty bad apparently but he’s doing it. The temporary diabetes is connected to one of the treatments he’s getting but not as often so his blood sugars should stabilize between doses. He’s also at a point where he’s able to be off his friend IVY for good stretches. 

Right now April 8 is the day we’re looking towards when this first round is done and they do another biopsy to see where he’s at. We won’t really know what the months ahead look like until then. 

I’m back home for the time being as I continue to work and will start to tackle a few projects that will need to be completed before Eli comes home. There’s nothing besides a good cleaning that must be done before he can come home but like every house we have a few “should be done in the next couple years projects” that cannot be undertaken once he comes home so it’s deciding what to do in the next 4-6 months and what can wait for 2+ years.

Thank you again for your love and support. We are incredibly grateful.

World Down Syndrome Day

Today is 3/21 also known as world Down Syndrome day! Down Syndrome is the result of a 3rd copy of the 21st chromosome, thus 3-21. Down Syndrome is a part of our family as we journey through life with our little Eli. It's not a journey I was expecting and it has its challenges but it is an enriching journey.  It sometimes takes longer to get where we're going, it some times involves unexpected detours but I wouldn't trade this journey for anything. Eli brings much joy to our lives and those around us and we are excited to watch him grow into the boy he is becoming.

This year we’re back in BC Children’s Hospital as Eli was recently diagnosed with Leukaemia (DS B-cell ALL) which has a really good outlook but is going to be a 2 year journey. In this case DS was in a way a gift as it was due to his regular health checks and bloodwork they caught this early. We love our boy and we have faith to make it through this season.

Thursday - End of Week 2

Well it’s Thursday and we’re wrapping the second week of this journey. Thursday is Chemo day and today he’s getting another lumbar puncture to test his spinal fluid and make sure it’s still clear. Overall he’s doing well but it’s getting harder in ways. One side effect of chemo can be temporary diabetes which it would seem he’s developed as his sugars are spiking so he’s getting finger pokes to test his blood surgar and insulin shots. He’s being brave but it’s getting hard. The treatments also make his skin very sensitive and more things are getting uncomfortable. Please pray for strength and courage for us all. 

Our family has been so blessed and at times left speechless but the support and love we’ve received. We cannot thank you enough, especially as it’s sinking in that this is going to be a marathon of a journey. Thank you for standing along side and cheering us on.

Time for an update

 Time for an update. I’ll be setting up a blog, just haven’t gotten to it yet. It’s been a busy few days both in the hospital and back here in PG. Eli started Chemo with a dose on Thursdays he’ll get weekly for this first round and another dose of a different one he’ll get less frequently today. He’s doing well, slept a while today after the chemo.

Dana and Eli have a stocked fridge and have been blessed with care packages this week. We are most grateful for all those who have reached out to us and our family and thank you so much for the love and generosity so many have shown us.

I was able to get a suitcase down to Dana with the stuff she couldn’t take with her on short notice. She was quite excited to get it. I’ll be taking some more stuff down when I go.

Katie and I will be heading down shortly so she can stay with family and I can be spend some time with Dana and Eli. I’ll return home to continue working. I had a fair amount of work booked for March with less in April so I’m pushing through to have some more breathing room next month when we’re not sure if he’ll be at Ronald MacDonald house, the hospital or somewhere else.

We continue to covet your prayers. Some specific items include, a good day tomorrow as he doesn’t have any procedures or treatments tomorrow, safe travels for Katie and I, that I can keep up with my various responsibilities, strength for Dana as she stays with Eli and of course for Eli’s treatment and his response to it.

Here’s Eli with his new “auntie hug” blanket

.

Port and starting chemo

 It’s hard to believe a week ago we were celebrating Eli’s 8th birthday unaware what the next days would hold. The last few days have been full. Eli had the bone biopsy on Monday and we had a meeting with his medical team yesterday evening. The Leukaemia we are dealing with is the most common form of childhood leukaemia and has a well established treatment plan and a very good outcome. The bottom line is however that we’ll be on this road for about 2 years.

Big picture, he will need to stay in Vancouver for 4-6 months. The first month will be in hospital while he goes through the first round of chemo. How well he responds to the first round will determine the exact course of treatment and where he stays after the first month, be it if he’s at Ronald MacDonald house or something else near the hospital. After the 4-6 months we’ll be a maintenance phase of treatment where he’ll likely be able to come home between treatments. 

Today he had his chemo port put in and tomorrow he gets his first chemo. He slept much of the afternoon after they put the port and is getting some food in his tummy now. We’ve been FaceTiming lots which is great as we are apart. 

In the next few days we’re going to set up a better means of putting out updates, we’ve just been taking a lot in and much has happened over the past few days. We also figuring out what we will need to get through this journey.  Now that we have a general timeline we’re working out what it looks like for us. We are deeply humbled and grateful for the number of people who have offered to help us through this and will put out those needs as they arise. What we do know at this point is there will a fair number of trips between PG and Vancouver over the next couple years. There will also be expenses related to staying in Vancouver but there are also a lot of supports available to offset some of these expenses, we’re just trying to find out what those supports are. 

We don’t know what all this journey will include but we walk this road in faith and we are immensely grateful for the medical professionals and the resources available to us.

Hungry boy after coming out of his port installation

Well we’re on the third day of this journey. These past days have been trying to say the least. Dana Daykin and Eli got to BC Children’s Friday night via air ambulance where there was more tests. He is scheduled for a bone biopsy tomorrow (Monday) morning. This will tell us what kind of leukaemia we’re dealing with. From what we’ve been told thus far the outlook is very positive, it’s a long road but we’ll get through this. 

We are so grateful for the outpouring of support. We appreciate it and treasure each prayer, word of encouragement and positive vibe sent our way. We’re not sure yet what or when we’ll need help but we’ll reach out when we do. Whether Katie and I head down will be dependent on Monday’s results and the treatment plan is. 

Dana and Eli are in the oncology ward at BC Children’s which is in the new part of the hospital and they have private room with a pull out couch/parent bed. This will likely be home for some time. The ward has patio that they were able to get outside to today for some fresh air. My mom and sister have taken food in for Dana and one of the organizations that supports sick children had provided a bin of good toys. 

Overall he’s doing fine right now. We really had no indications he was sick and had it not been for his routine bloodwork we wouldn’t have caught it so early.

This isn’t going to be a short or easy road but we know we don’t walk it alone.