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...