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When a baby is sick, how do the parents navigate the day-to day reality?
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Parents Kat Ast and Jeff Kindree with son Bo.

It is a journey no parent wants to take, but many local families must.

Parents Kat Ast and Jeff Kindree, originally from Squamish, know the journey all too well.

Fourteen-month-old Bo, the couple’s only child, is being treated for Acute Myeloid Leukemia at BC Children's Hospital.

Earlier this month, the family chronicled some of their journey on the Pemberton-based Winds of Change Wellness Almanac Instagram account.

The social media account and associated website are meant to be “an interactive gathering place and community-powered almanac to help neighbouring communities share what we know about where we live,” according to the site.

While media representations of cancer often portray two polarities — a devastated family worthy of pity or impossibly positive  — this Sea to Sky Corridor family shows the truth lies somewhere in between.

The Chief caught up with Bo’s parents during one of their recent stays at Children’s Hospital. What follows is an edited version of that conversation.

 

Q: Recognizing that things can be up and down daily when you are fighting cancer, how is Bo today?

A (Kat): Today is day nine back in the hospital. We are in our third round of chemo. His Absolute Neutrophil Count is at zero as of today. That count is basically a measurement of his body’s ability to fight bacteria. What happened is, the chemo has killed all of his cells, not just the bad ones. So he bottomed out today in terms of his ability to fight bacteria. Therefore, he is at super high risk for any infection, which is why they keep us isolated to our room.

Q: On Instagram you posted an adorable photo of Bo using the vomit bowl as a hat, even though he had been through chemo. How is he feeling today?

A (Kat): His spirits are high most of the time. You wouldn’t even know.

A(Jeff): If you didn’t know, you would never guess he was sick. He just seems completely normal.

Q: How long are you in hospital for? What is next?

A(Kat):This round we should be isolated to our room for two to three weeks. And then we get a little break. We will be back at Ronald McDonald House for about a week’s break and then we are back in here for the forth round of chemo and that is the final round. After that, we are back in hospital for about a month or so and then as long as he is doing well and his counts are up then we are good to go home.

Once we are home, we will have to come down to the city for monthly checkups and as we get further and further out we will switch to every three months for checkups and then every six months and so on. The further out we are, the safer we are in terms of the risk of relapse. That is the biggest fear and the chances are way higher closer to the release from the hospital.

Q: When did you realize something was wrong with Bo’s health?

A (Kat): We were admitted to hospital on Oct. 7, but it was a long process to get to that point.

Prior to that, the doctors all thought he had a virus. It is really rare for a baby to get this. He had cold and flu symptoms and they just said that viruses can take up to six weeks to go away.

Coincidently, he was also getting in his top four teeth. Nobody was really worried about it being serious.

It was eventually discovered he had pneumonia and so they sent us home with that diagnosis. I just woke up the next morning after a rough night with him and I just really wasn’t comfortable. We have medical professionals in our lives so in talking to them we decided he really should get blood work if he is so sick — I mean he wouldn’t let me put him down. There were other signs too, he had some bruising and petechiae — red and purple spotting on his skin.

We finally went to Whistler and got the blood work done there and were sent immediately down to Children’s Hospital and admitted.

Q: What you are going through is every parent’s worst fear, so how has it been to navigate the emotional side of this?

A(Kat): I think you go into survival mode pretty quick. You don’t get much time, really. I was on my own at the Whistler clinic when we got the news. At first I was boarder-line hysterical, but I would say within minutes I switched immediately to survival mode. It is my job to take care of and protect my baby and I have no choice but to be strong and there for them.

Q: I saw your beautiful wedding pictures from 2015 on social media. How was going through this been on your relationship since you so recently got married?

A (Kat): Oh, we have been together a long time, 11 years.

Q: Wow! Do you think that familiarity helps then when you are going through this?

A(Kat): I think this is super hard on a relationship — living in a hospital. I am really grateful that we are a really great team. Right Jeff?

A(Jeff): Yeah, we are. It does have its challenges. It is like you are in a fish tank, a small, small fish tank. Someone is always peeking in the windows and opening the door. About every half an hour there is someone else in the room.

Q: What about having to work now with all these hospital stays?

A(Kat): We have been so lucky. I was on maternity leave and was immediately able to transfer to medical leave and there’s a 35-week government benefit available for parents of critically ill children so I am able to go on that benefit.

Q: Being away from home for so long must be tough?

A(Jeff): You are really just going one day at a time. You get to nap time and then you get to bedtime and then you just do that again.  I try to not think about too many other things.

Q: What would you like people to know who may have their own ill child and are just starting on a journey like this?

A(Kat): You really do have to trust your intuition and fight.

A(Jeff): It was really strange going to all the doctors and every time we went to see a doctor, Kat would really have to advocate to get things done. No doctors wanted to do blood work because they don’t want to poke him and make him cry. Obviously, you don’t want to put him through anything if you don’t have to, but at the same time if we had the blood work done two weeks earlier... Of course, 90 per cent of the time it is unnecessary, but we are the one per cent that it was necessary. You don’t want unnecessary medical procedures, but I feel now that is the prevailing mentality in the Sea to Sky Corridor is that no one wants to go to doctors and so that was just not working to our benefit.

Q: Is it a blessing that he is so young and so doesn’t know what is happening or is it hard because you can’t explain to him what is going on?

A(Kat): I think it is definitely both. We think about that a lot. People think that he won’t remember, so just the parents that are being traumatized. But I find it a bit dismissive when people say that. Yes, he is a baby and he is not going to have any conscious memory, but this is part of his life and development and I believe it is going to have an impact on him.

 

**Please note, this story has been corrected since it was first posted. The originally posted story had a typo in the name, Winds of Change.

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