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.
Sunday, August 9, 2015
Sunday, July 19, 2015
Christmas in July
Mmm. Where to begin. It feels like we've lived a lifetime over the course of the past 2 weeks. Chemotherapy for Derek has begun (he seems to responding well so far), Zachary got his 2 month shots and was declared the size of an almost 4 month old (just shy of 15lb and 25in long), and Benjamin continues to be the Energizer Bunny (I oughtta do speed workouts with that kid- I'd get my running speed back super quick).
We have been overwhelmed with gifts, help, prayers, etc. Kind people from my work, friends, family, and people we don't even know have demonstrated their generosity. My children have a load of new toys, coloring books, etc. We've received discounts on yard materials as we work towards making our backyard more child-with-leukemia friendly (Derek can no longer play in the dirt and our yard is, well.... a diamond in the rough?, maybe). And, with lots of stray cats in the neighborhood that seem to infest our yard, we don't want him getting sick from all the microscopic nasties they carry (I really don't like cats anyways), we're going to finally fence in the yard.
This past Thursday evening a group of strong, burly men in the neighborhood helped tear down an old, dilapidated, wasp-infested shed in our backyard. Lo and behold a skunk was discovered living beneath it (yes, you read that right, a skunk). Thankfully no oatmeal baths were needed. The varment wandered off quietly.
Derek's medication makes him emotionally volatile, gives him a few girth units, promotes strange food cravings, and increases appetite. So, it's kinda like dealing with a pregnant woman, but it's a 5 year old boy. For breakfast this morning he ate:
1. 4 pancakes (2 with peanut butter and syrup)
2. 2 scrambled eggs
3. smoothie
4. a few glasses of milk
By 11am he was asking if it was lunch time yet. No! I'm not your slave in the kitchen!
His cravings as of late are potato chips, cottage cheese with salsa and chips, milk, and eggs. We've gone through a gallon and a half of milk in 3 days. Thankfully the particular med that has these wacky side effects is only to be taken every day during this 1st month.
We sincerely appreciate all the prayers, well wishes, gifts, service, offers for help, babysitting, etc. And if you've done something for us I didn't list, we thank you just the same. We're looking to make life as normal as possible. Mission Impossible, essentially.
Forward Ho!
We have been overwhelmed with gifts, help, prayers, etc. Kind people from my work, friends, family, and people we don't even know have demonstrated their generosity. My children have a load of new toys, coloring books, etc. We've received discounts on yard materials as we work towards making our backyard more child-with-leukemia friendly (Derek can no longer play in the dirt and our yard is, well.... a diamond in the rough?, maybe). And, with lots of stray cats in the neighborhood that seem to infest our yard, we don't want him getting sick from all the microscopic nasties they carry (I really don't like cats anyways), we're going to finally fence in the yard.
This past Thursday evening a group of strong, burly men in the neighborhood helped tear down an old, dilapidated, wasp-infested shed in our backyard. Lo and behold a skunk was discovered living beneath it (yes, you read that right, a skunk). Thankfully no oatmeal baths were needed. The varment wandered off quietly.
Derek's medication makes him emotionally volatile, gives him a few girth units, promotes strange food cravings, and increases appetite. So, it's kinda like dealing with a pregnant woman, but it's a 5 year old boy. For breakfast this morning he ate:
1. 4 pancakes (2 with peanut butter and syrup)
2. 2 scrambled eggs
3. smoothie
4. a few glasses of milk
By 11am he was asking if it was lunch time yet. No! I'm not your slave in the kitchen!
His cravings as of late are potato chips, cottage cheese with salsa and chips, milk, and eggs. We've gone through a gallon and a half of milk in 3 days. Thankfully the particular med that has these wacky side effects is only to be taken every day during this 1st month.
We sincerely appreciate all the prayers, well wishes, gifts, service, offers for help, babysitting, etc. And if you've done something for us I didn't list, we thank you just the same. We're looking to make life as normal as possible. Mission Impossible, essentially.
Forward Ho!
Wednesday, July 8, 2015
Kansas City, Leukemia, and the Elusive Milkshake
Yes, I have slacked off and not posted in a ridiculously long time. I'm going to use the "pregnancy brain" excuse. It's legit, so there.
Speaking of pregnancy, I hate it even more than ever before. I had heartburn almost the entire 9 months! Let me just tell you how much fun that wasn't. Getting enough calories was a serious challenge given that eating was painful most of the time. Evening stomach pain became routine. Ugh.
Zachary James Canova arrived 2 days before his due date on 20 May, 2015 at 8 lbs, 12.2 oz and 22 in long, with blonde hair. He first 5 or 6 weeks of his life were a blur. Lots of fussiness, me trying to figure out why, Derek and Benjamin and Daddy adjusting.
We all flew to Kansas City end of June for a Canova family reunion. Tyler's brother lives there so we all met there. We had a grand time getting a tour of the Sporting Kansas City stadium, visiting a few Church history sites, swimming, and more. Our flight home included delayed flights (into late-night and early-morning hours), a sleeping Benjamin peeing on Daddy in the Denver airport, a kind Southwest employee finding our bags for a change of clothes, and Derek having to wake up and walk through airports half asleep. But, we made it!
A few days after coming home, we celebrated Independence Day (we love you America!) by going on a hike with some cousins. Derek complained a lot that he was tired and then couldn't make it to the destination (he'd been complaining of fatigue and cold sensitivity a lot over the past 6 weeks-ish). This is HIGHLY unusual for him. He was white as a ghost and when he sat down at the furthest point he hiked to his lips were even white. This kid had been doing cannon balls into the pool 3 days earlier and just finished running around like mad during Spring soccer end of May! Something was wrong. Tyler carried him back to the car.
Derek already had an appointment with the pediatrician in conjunction with Zac's 2 month check up 2 weeks from that point, but we knew he needed to be seen earlier. We got him an appointment the following business day (July 6). One look from the dr. and she knew Derek was severely anemic, but needed labs drawn to figure out why. A few hours later we knew that his platelets were at 15,000 (normal range 150,000-400,000), and hematocrit at 12 (normal is above 35). We were sent to Primary Children's Hospital and Derek was admitted immediately. By the end of the day the doctors were almost 100% sure little Derek had leukemia. They even let me look at the blood smear- it did NOT look good.
Our lives drastically changed faster than a peregrine falcon spots, catches, and devours its prey (or so it seemed).
The next day we got the official diagnosis of B cell ALL (over a 90% cure rate), then they put a central line in, took a bone marrow aspirate, and put a little chemotherapy into his spinal fluid. So it was 3 procedures with 1 sedation (that's 3 birds with one stone folks- they throw stones like hobbits around here!). And in the course of all that Derek was transfused with 1 pack of platelets and 3 units of blood. He spiked a fever and was put on big-gun antibiotics. Crazy to think of how much his little 5 year old frame can handle!
The next day (today) the 1st round of chemotherapy was administered, some favorite friends came to visit, and our brains began to process this whole shenanigan a little more. Our hope is to go home after 4 or 5 days from admission. The 1st month of treatment will be pretty intense including daily pills at home and weekly outpatient chemotherapy appointments. Then we will be on treatment cycles with their own time tables (I'll figure out what they are when they're closer). The grand total for treatments will be 3 years and 3 months.
The cute kid loves chocolate milk shakes and has ordered one almost every meal. Each time he either is asleep, busy being poked, prodded, the like, or not up to eating. Another sits untouched as I sit here now. He's sleeping.
Tyler and I are grateful for such a great support system! There are so many who want to help and be a part of what's going on. Prayers are more powerful than I think we give them credit. We have witnessed countless miracles already and can feel extra help and buoyancy from the Lord's grace.
Let the crazy roller coaster ride begin, even though we didn't know we were in line for it!
Speaking of pregnancy, I hate it even more than ever before. I had heartburn almost the entire 9 months! Let me just tell you how much fun that wasn't. Getting enough calories was a serious challenge given that eating was painful most of the time. Evening stomach pain became routine. Ugh.
Zachary James Canova arrived 2 days before his due date on 20 May, 2015 at 8 lbs, 12.2 oz and 22 in long, with blonde hair. He first 5 or 6 weeks of his life were a blur. Lots of fussiness, me trying to figure out why, Derek and Benjamin and Daddy adjusting.
We all flew to Kansas City end of June for a Canova family reunion. Tyler's brother lives there so we all met there. We had a grand time getting a tour of the Sporting Kansas City stadium, visiting a few Church history sites, swimming, and more. Our flight home included delayed flights (into late-night and early-morning hours), a sleeping Benjamin peeing on Daddy in the Denver airport, a kind Southwest employee finding our bags for a change of clothes, and Derek having to wake up and walk through airports half asleep. But, we made it!
A few days after coming home, we celebrated Independence Day (we love you America!) by going on a hike with some cousins. Derek complained a lot that he was tired and then couldn't make it to the destination (he'd been complaining of fatigue and cold sensitivity a lot over the past 6 weeks-ish). This is HIGHLY unusual for him. He was white as a ghost and when he sat down at the furthest point he hiked to his lips were even white. This kid had been doing cannon balls into the pool 3 days earlier and just finished running around like mad during Spring soccer end of May! Something was wrong. Tyler carried him back to the car.
Derek already had an appointment with the pediatrician in conjunction with Zac's 2 month check up 2 weeks from that point, but we knew he needed to be seen earlier. We got him an appointment the following business day (July 6). One look from the dr. and she knew Derek was severely anemic, but needed labs drawn to figure out why. A few hours later we knew that his platelets were at 15,000 (normal range 150,000-400,000), and hematocrit at 12 (normal is above 35). We were sent to Primary Children's Hospital and Derek was admitted immediately. By the end of the day the doctors were almost 100% sure little Derek had leukemia. They even let me look at the blood smear- it did NOT look good.
Our lives drastically changed faster than a peregrine falcon spots, catches, and devours its prey (or so it seemed).
The next day we got the official diagnosis of B cell ALL (over a 90% cure rate), then they put a central line in, took a bone marrow aspirate, and put a little chemotherapy into his spinal fluid. So it was 3 procedures with 1 sedation (that's 3 birds with one stone folks- they throw stones like hobbits around here!). And in the course of all that Derek was transfused with 1 pack of platelets and 3 units of blood. He spiked a fever and was put on big-gun antibiotics. Crazy to think of how much his little 5 year old frame can handle!
The next day (today) the 1st round of chemotherapy was administered, some favorite friends came to visit, and our brains began to process this whole shenanigan a little more. Our hope is to go home after 4 or 5 days from admission. The 1st month of treatment will be pretty intense including daily pills at home and weekly outpatient chemotherapy appointments. Then we will be on treatment cycles with their own time tables (I'll figure out what they are when they're closer). The grand total for treatments will be 3 years and 3 months.
The cute kid loves chocolate milk shakes and has ordered one almost every meal. Each time he either is asleep, busy being poked, prodded, the like, or not up to eating. Another sits untouched as I sit here now. He's sleeping.
Tyler and I are grateful for such a great support system! There are so many who want to help and be a part of what's going on. Prayers are more powerful than I think we give them credit. We have witnessed countless miracles already and can feel extra help and buoyancy from the Lord's grace.
Let the crazy roller coaster ride begin, even though we didn't know we were in line for it!
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