24 September 2012

You never know how many apples are in a seed...

It's been a while since I updated this post - seems quite funny since you'd think I would have had a ton of time, as we've been stuck at home this last 2 weeks. Keian hasn't been able to continue chemo for 3 weeks as his ANC count was below critical. It seemed they started their downhill slide about 4 weeks ago, with the week before last being the lowest yet, with a number of .2 - critical is considered .5. So, we've been pretty much under house arrest this last 2 weeks, avoiding everyone to protect Keian from any external infections. For the last 3 Mondays, we've gone to the lab to check his counts and every time we are given the results, we'd be left disappointed. This is definately not the time to have to stop chemo so early into his treatment, but they are unable to during the time that he is neutropenic.

We usually get the test results by late afternoon, but I was too anxious to wait and called on our way out of the orchard. AMAZING news!! His numbers were finally up! And to almost double what was required, sitting at 1.2 ANC. This was amazing news for a couple reasons - the more time he is not able to receive treatment, the more chance of relapse during this time and also that we won't be stuck in hermit-ville. Perfect timing for the gorgeous fall weather! Keian asked me last week if we could go to Bear Creek Park, so I think this week we will definately have to pack a picnic and head out!

Tomorrow now brings on a new week of treatment - we'll be back at Children's everyday this week. I expect Keian might be a little nervous when he wakes up, as he's been mentioning the fact that he needs an LP tomorrow quite a few times today. So far, he's been quite easily reasurred that we'll always be there holding his hand when he's there, and he's young enough that's actually enough. He's definately a boy that's easy to love! I'm actually quite nervous myself though about what this week shall bring after being off treatment for 3 weeks and then pumping all the drugs back into his system. When you're the parent of a sick child, no matter what sickness, you're prepared for anything - Mattress protectors, sick buckets, garbage cans and cloth and wipes beside their bed. We now have a rubbermaid tote in our trunk that holds extra clothes, wipes, blanket, sick supplies and water.

Now, onto the good stuff...

I promised Keian that no matter what the results were to be today, that we'd go apple picking at the orchard out in Abbotsford, as I knew that being outside in that setting, it would be easy to avoid others. What a perfect day to go apple picking. We decided to get 2 huge bags of Fuji apples, so that we can make homemade chunky apple sauce - perfect healthy nutrition for my boy! We made our way through the orchard and then headed over to the store to buy some fresh apple cider....best EVER! Keian drank atleast a cup of it on the way home! His first request? "Can we make some caramel apples?" Just the fact that he asked made me happy considering what his appetite has been like the last few weeks.

It makes me so happy to see that no matter what Keian and my family are going through, that we are stronger than ever, as our bond is growing stronger everyday. We'll always take care of eachother <3


8 September 2012

We'll take the sunshine, but not the 'heat' that comes with it

This has been a rough week all around. Keian's appetite has been going downhill all week and then on Thursday, he pretty much refused everything. His diet for the last 3 days wouldn't even fill a cup. He has been constantly complaining of a headache today and that he has no appetite. He won't even eat his once favourite foods. His liquid intake has been far less than substantial and since Thursday night, he has vomited 13 times. I can't even get him to keep Ondanse down, as the second it hits his tongue, he throws up. He has started to need naps during the day again - he is sleeping as I write this. He looks basically unwell - no other way to describe it really. I just got off the phone with the Oncologist and she wants me to watch him for a few more hours, and if things don't seem to improve, I will likely be driving out to Children's to get him admitted for IV.

We are booked in for chemo every day next week, but it is number dependant. 6:30 a.m. on Monday morning I will be sitting at the lab to get his bloodwork done.

I am stressed. It's honestly so hard to juggle a young baby, who requires alot of attention at this age, with a sick 5 year old having to go through this. I don't show worry around Keian, as I know it makes things worse for him, so I don't make much of a deal when I'm sitting with him and holding him and a bucket when he's getting sick.

Today is just one of those days I suppose I should expect. No matter what, he handles everything so well and tries to be so strong. Even when he's feeling as crappy as he is, he still has concern for others. Today, when Joren was fussing, he wanted to hold him. As he did, he kept cuddling into him and bringing his face close to his and repeated "It's ok, it's ok, Joren", while he kissed him on the forehead. He is literally the light of my life.

Earlier in the week, we finally switched his bed to the 'loft' style he wanted - he was feeling pretty yucky, but still wanted to show his baby brother what it's like to be up high!

Onto gearing myself up for a long night. ~Chantal

1 September 2012

Couch potatoes

Wednesday was a long day at the hospital. After the results came back from the lab, it was discovered that Keian's numbers were very low and that he would require a blood transfusion. Though he has required a platelet and plasma transfusion through his diagnosis, this was the first time he needed a full blood transfusion. Admittedly, it was a weird feeling for me. The most concerning for the nurses and doctors is to raise the hemoglobin, but Keian is also neutropenic, which means that his neutrophils, which are mostly responsible for his immune response, are very low. We've been told to stay away from public places until we go back on Tuesday to get his bloodwork checked again. During the time that Keian is neutropenic, he is at high risk for infection, including infection within his own body. Although we do have numerous bottles of Purell around the house, one of which is by the door so visitors can sanitize before entering, we will limit visitors during this time. He also needed to get Asparaginase via IM - this has a chance of anaphylactic shock, so he needed to be monitored for 3 hours after. They won't transfuse blood during this time, as they both have a chance of allergic reaction.

He was really scared to go to the hospital to get his LP - he cried a few times that morning. He told us that last time he had an LP that he remembers and that he could feel it and it hurt. They assured us that with the sedation they give him that he wouldn't. When we talked to the doctor, she told us that because Keian was doing so well with acceptance of the sedation, that she cut back on the amount. She assured us that she would increase the dose again for this and future procedures. This time went beautifully - soon after he was off in lala land and he didn't feel a thing. I definately had to call attention to Dr. Lucy - she cares so much for the kids...the entire time that we were in the procedure room, she sat at the head of the bed and gently rubbed Keian's head and cheek and talked to him in such a reasurring way. Things like this make such a difference, not only for the kids, but for the parents. It makes us feel like our kids are not only getting the best medical care, but also to make them feel assured and cared for in a personal way vs. a textbook case.

The day was filled with ALOT of video games! Keian and Joren both have a cough, and therefore, we were confined to a clinic room for the day and weren't allowed into the huge playroom.

Keian getting his blood transfusion

Hospital food is definately not enjoyed, so as Keian was stable, one of us was able to leave to go get lunch. Keian's request: Subway. I love that about him. Given a choice between any fast food item, pizza or anything considered junk food, he would choose Subway. Mind you, his sandwiches aren't exactly the healthy that you and I might get, getting lunchmeat and bread with tomatoes and cucumbers on the side make me feel alot better than filling him with greasy hamburgers.

I may not love the way our life is right now. I may not love what Keian needs to fight. But, I sure as heck love my boys!