I've only seen "Forrest Gump" once. Doesn't he say in there somewhere that life is like a box of chocolates- you never know what you're gonna get? I think he forgot to add that some have really strange flavor combinations. Some work. Some don't, therefore leaving a pretty nasty taste in your mouth. Then there are those that are complete perfection, whether they be caramel, peanut butter, dark chocolate, etc. (Must stop, I'm now salivating).
We had a 3 week delay between the last phase of treatment and the one we're currently in. Derek's blood counts were too low and therefore needed to rebound enough for his little system to handle more chemo. I gotta admit, the break was kinda nice, the kind of chocolate from the proverbial box that you can never get enough of. Even the first bit of this current phase haven't been too shabby. He's been going to school all day. Benjamin has adjusted, and we've experienced a hint of routine and normalcy. We've gone a few hikes, visited friends and family, played outside a lot, harvested the garden, went to a Halloween party for cancer kids that we'll definitely go back to next year, and lived in the moment (I'm learning to do that a lot more these days- quite the feat for me, the Eternal Agenda Maker).
This past Thursday we knew Derek was in for a long day of chemo. One of the drugs he had to get is an infusion of more than an hour. Then he has to stick around for surveillance in case of an allergic reaction. He also needed a red blood cell transfusion. Paradise-like streaks don't last forever. About 15min in to the infusion, Derek went in to anaphylactic shock. He was surrounded by nursing staff within seconds as they took care of business. Some of the future chemo meds are in the same class as the one he
reacted to, so he runs the risk of anaphylaxis again. Glorious. I'm still unsure of what kind of flavor this "chocolate" left in my mouth. I just know I don't like it and hope to never taste it again.
When Tyler went to the pharmacy to pick up the prescription for an epi-pen, he was told our insurance wouldn't cover it. Wait, what? #1. We met out out-of-pocket maximum quite some time ago. What gives? #2. There really isn't another drug option here. Any suggestions, morons? #3. (My favorite) Tyler called the insurance company and was told they cover the epinephrine for double Derek's prescribed dose. He frankly told her that would kill our child, therefore NOT an option. Who made such an asinine decision, where do they live, and where are the tar and feathers? Thankfully our hospital social worker had a voucher to cover the $400 epi-pen. The same insurance agent called back the following day saying she'd spoken with the head pharmacist there and he decided to override the lack of coverage. Clap. Clap. Clap.
Let's just say it's a darn good thing I LOVE chocolate. Perhaps I ought to pick up surfing so I can learn to ride the wave better. Utah is land-locked. Somewhat of a problem. Guess I'll stick with chocolate.
Saturday, October 17, 2015
Sunday, September 6, 2015
School Started?
The only real indication of fall for us is the drop in temperature. Everyone else has started a school year. We really haven't. Derek was cleared to attend school the 1st week for 1-2hrs a day. So he went til morning recess. We got oober lucky to have the same teacher he had for kindergarten (she now teaches 1st grade- we love Mrs. Benware!) Derek is such a quick learner and loved every second he got to be with all his classmates.
The last weekend of August we spent up at my sister's house for what we called "The Donovan Show." My sister, LaNan, had one son returning from a mission and another leaving for a mission (all within a week) so they both spoke in church. For the 1st time in a few years all my sisters and I were together. It was a par-tay! I went hiking with Minae (the oldest) and basked in the presence of my dynamic and powerful sisters. I needed their strength, love, and support. My 2 nephews whose missions brought us all together are stinkin' hilarious and completed the whole experience. Did I ever mention I am an aunt to the most rockin', cool, purely awesome nieces and nephews? If not, I just did.
That Sunday night, after arriving home, Derek developed a fever. This does NOT mean we give him Tylenol and send him off to bed. We have very specific instructions on how to handle fevers- depending on how high it is, duration, etc. We were instructed to take him to the ER. Blah. Blood cultures were drawn, but he seemed to be OK, so we were sent home about midnight. Bottom line, he'd gotten a cold and since he practically has no immune system, all his body has as a defense mechanism is to heat up, hence the fever.
Given all that, we figured school the next week was out of the question. So, we tried to start a pseudo school routine at home. Yeah... I think Mrs. Benware has much better motivating skills than me. We did OK. Guess we have lots more time to practice since the school year just began. It's extra difficult when Benjamin gets bored and gets in Derek's face. Thankfully he starts preschool this coming week. It will be good for him on many levels, and therefore good for the whole family.
Thursday was a loooooong chemo day for Derek. He and Tyler got home about 6p. Not long thereafter Derek got a fever. Again. I left work early and rushed him to the ER at the childrens hospital. He'd received a blood transfusion as part of his clinic day and so the doctors were extra cautious to make sure it wasn't a transfusion reaction. His blood counts were quite low at the ER visit and he was admitted (smart Me hadn't packed anything for an overnight stay- brilliant!).
Derek stayed 2 nights, just long enough to make sure a new set of blood cultures wasn't going to go positive. I got some of the best sleep being there with him. Who knew?! Not having housework to worry about and little Benjamin to be an alarm clock I almost felt like a teenager on Saturday morning again. But, we were very ready for discharge. We can all only handle so much screen time.
Benjamin was an angel through it all for Grandma and Grandpa Canova. Zachary did OK. He's teething and was therefore a bit of a pill. Thank goodness for a patient grandma and Tylenol (totally justifiable in this circumstance, phew!).
Well now that was a fun, large, hiccup in our life!
The last weekend of August we spent up at my sister's house for what we called "The Donovan Show." My sister, LaNan, had one son returning from a mission and another leaving for a mission (all within a week) so they both spoke in church. For the 1st time in a few years all my sisters and I were together. It was a par-tay! I went hiking with Minae (the oldest) and basked in the presence of my dynamic and powerful sisters. I needed their strength, love, and support. My 2 nephews whose missions brought us all together are stinkin' hilarious and completed the whole experience. Did I ever mention I am an aunt to the most rockin', cool, purely awesome nieces and nephews? If not, I just did.
That Sunday night, after arriving home, Derek developed a fever. This does NOT mean we give him Tylenol and send him off to bed. We have very specific instructions on how to handle fevers- depending on how high it is, duration, etc. We were instructed to take him to the ER. Blah. Blood cultures were drawn, but he seemed to be OK, so we were sent home about midnight. Bottom line, he'd gotten a cold and since he practically has no immune system, all his body has as a defense mechanism is to heat up, hence the fever.
Given all that, we figured school the next week was out of the question. So, we tried to start a pseudo school routine at home. Yeah... I think Mrs. Benware has much better motivating skills than me. We did OK. Guess we have lots more time to practice since the school year just began. It's extra difficult when Benjamin gets bored and gets in Derek's face. Thankfully he starts preschool this coming week. It will be good for him on many levels, and therefore good for the whole family.
Thursday was a loooooong chemo day for Derek. He and Tyler got home about 6p. Not long thereafter Derek got a fever. Again. I left work early and rushed him to the ER at the childrens hospital. He'd received a blood transfusion as part of his clinic day and so the doctors were extra cautious to make sure it wasn't a transfusion reaction. His blood counts were quite low at the ER visit and he was admitted (smart Me hadn't packed anything for an overnight stay- brilliant!).
Derek stayed 2 nights, just long enough to make sure a new set of blood cultures wasn't going to go positive. I got some of the best sleep being there with him. Who knew?! Not having housework to worry about and little Benjamin to be an alarm clock I almost felt like a teenager on Saturday morning again. But, we were very ready for discharge. We can all only handle so much screen time.
Benjamin was an angel through it all for Grandma and Grandpa Canova. Zachary did OK. He's teething and was therefore a bit of a pill. Thank goodness for a patient grandma and Tylenol (totally justifiable in this circumstance, phew!).
Well now that was a fun, large, hiccup in our life!
Sunday, August 9, 2015
On to Phase 2
The 1st month of Leukemia treatment (Induction) is now over. At Day 8 they tested for what they call Minimal Residual Disease (MRD). They like the leukemia cells to be less than 1%. Derek's came back at 1.4%. What does that mean? Good question. All we know is that he will be put on the "high risk" course of treatment, perhaps the "very high risk" depending on his MRD value after this 1st month. We get that result tomorrow. At this point we know that means is Derek will get higher doses of chemotherapy, a few more hospital stays, and I'm not sure what else.
The crazy part: he's hardly been sick. He's not his usual active self, but is still happy, does stuff, plays with Legos, colors, reads, etc. Yes, we went through a phase where I was continually coaxing him off the couch, but no longer (he probably tired of my nagging). His oncologist said it's super rare for a child to not really be sick like he's been. We are beyond grateful! However, she also said this next phase or 2 of treatment can be pretty harsh. So, guess we'll brace ourselves. He's done with the appetite-increasing steroid, for now. The oncologist said it can be a good thing that the children put on weight from it since the next phase can seriously decrease appetite, so it's like they've built up some fat stores for what's ahead. Oh boy...
School starts in a few weeks. Apparently the district has a program for children with chronic conditions so the children can get their assignments, work somewhat with the teachers, etc. I'm not entirely sure how it works, but will soon find out. I figure we'll get a taste of home school to see how we like it?...
We met a family at a soccer game whose son just finished his 3 years of treatment. Apparently the mom saw the funny way Derek's buzzed hair sits on his head and immediately recognized it as a "chemo head." Needless to say, we became instant friends.
Derek turned 6 yesterday. He has a new love for Spiderman and therefore got a Spiderman hat, toy, mask, balloon, and cake (Tyler did a pretty awesome job decorating it). He requested hot dogs, mashed potatoes, and oven fries for his birthday dinner. Hello potatoes! He also got more Legos. No surprise there!
Benjamin and Zachary are their cute, normal selves. Zachary is a size of a 6-9 month old (at 11 weeks) and the most delicious baby. Period. Benjamin loves playing in the tub and the other evening we overheard him, "Where. Is. My. Supersuit?" (from "The Incredibles") He got a new Dusty Crophopper backpack for preschool and wore it through the store. Tyler sat him up on the belt for the person at the cash register to scan it without Ben having to take it off. What a good dad!
Sometimes I tell myself it's a good thing I run marathons thus giving me an idea of enduring things that are long, arduous, and grueling. Then again, I know we have no clue what we're in for. One treatment at a time, one day at a time, one moment at a time. All with the Lord by our side.
The crazy part: he's hardly been sick. He's not his usual active self, but is still happy, does stuff, plays with Legos, colors, reads, etc. Yes, we went through a phase where I was continually coaxing him off the couch, but no longer (he probably tired of my nagging). His oncologist said it's super rare for a child to not really be sick like he's been. We are beyond grateful! However, she also said this next phase or 2 of treatment can be pretty harsh. So, guess we'll brace ourselves. He's done with the appetite-increasing steroid, for now. The oncologist said it can be a good thing that the children put on weight from it since the next phase can seriously decrease appetite, so it's like they've built up some fat stores for what's ahead. Oh boy...
School starts in a few weeks. Apparently the district has a program for children with chronic conditions so the children can get their assignments, work somewhat with the teachers, etc. I'm not entirely sure how it works, but will soon find out. I figure we'll get a taste of home school to see how we like it?...
We met a family at a soccer game whose son just finished his 3 years of treatment. Apparently the mom saw the funny way Derek's buzzed hair sits on his head and immediately recognized it as a "chemo head." Needless to say, we became instant friends.
Derek turned 6 yesterday. He has a new love for Spiderman and therefore got a Spiderman hat, toy, mask, balloon, and cake (Tyler did a pretty awesome job decorating it). He requested hot dogs, mashed potatoes, and oven fries for his birthday dinner. Hello potatoes! He also got more Legos. No surprise there!
Benjamin and Zachary are their cute, normal selves. Zachary is a size of a 6-9 month old (at 11 weeks) and the most delicious baby. Period. Benjamin loves playing in the tub and the other evening we overheard him, "Where. Is. My. Supersuit?" (from "The Incredibles") He got a new Dusty Crophopper backpack for preschool and wore it through the store. Tyler sat him up on the belt for the person at the cash register to scan it without Ben having to take it off. What a good dad!
Sometimes I tell myself it's a good thing I run marathons thus giving me an idea of enduring things that are long, arduous, and grueling. Then again, I know we have no clue what we're in for. One treatment at a time, one day at a time, one moment at a time. All with the Lord by our side.
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