47) Bloodwork, bewilderment, blasts, and barfs (Interim Maintenance II)

The past week has been whirlwind. On Tuesday February 20th, we returned to our satellite hospital for scheduled bloodwork. The previous week, E had been neutropenic, and our trip to SickKids for a lumbar puncture had been pushed back a week. E's blood was great this week, so we were told to proceed to SickKids for a lumbar puncture. We would be starting Interim Maintenance II on Wednesday. I messaged my mother, and she hopped on a GO train to come out and help. On days where we have a lumbar puncture and we need to get E down to SickKids early, my mother or my mother-in-law will sleep over so they can get J off to daycare and we can get a jump on the traffic.

E riding the halls of Rouge Valley Centenary

Wednesday February 21st, we ended up not waking up as early as I had liked, and we were a little late getting on the road. Combined with the pouring rain, it was a miserable 90 minute trip to downtown Toronto. E's lumbar puncture & chemotherapy went without incident, but he woke up after only 30 minutes, so my wife had to lie on the stretcher with him to try and keep him horizontal until an hour was up. Cancer patients need to lie flat for an hour after a lumbar puncture so that the chemotherapy is effective, and also so they don't get a headache.

E riding the halls of SickKids

Around lunchtime on Thursday February 22nd, the phone rang. I was on the computer, and my wife answered the phone in the kitchen. I wasn't listening in, but I overheard her say "I'm not sure what you're telling me. Should I be worried?" I then focused in on the one side of the conversation I could hear, but most of it was my wife repeating affirmative words: yes, uh-huh, okay. I didn't know what was going on, but I started having a panic attack. I felt a sense of vertigo, my vision went wonky, and my ears felt like they filled with blood. I could still hear sounds, but it felt as though I was listening underwater. I was transported back through time to July 22nd, E's diagnosis day. I felt like I wanted to vomit.

We've all had a few minor medical issues as of late. At first, I thought the call was about my wife. Immediate panic. If something is wrong with her, I can't do this all on my own. Somehow, I came to the realization that whomever was on the other end of that phone was talking to her about one of our sons. We had some bloodwork done for J recently, and we found out that he is anemic. Not surprising because the kid literally doesn't eat. I was panicking, thinking that they were calling because they found something else in his blood. Maybe J had leukemia too. Maybe it was something else. After what seemed like an eternity, but was actually at most a few minutes, my wife got off the phone. She told me that it was E's oncologist from SickKids, and that they had spun his blood after the lumbar puncture, and they had found a few blasts. My heart immediately sunk. The oncologist had said not to worry, that they see this from time to time, and it was definitely not a relapse. At E's next lumbar puncture they will take more blood, and check it again. Our oncologist said that when this has happened before with other patients, the blasts are usually gone by the next test. The good thing is that he has chemotherapy drugs in him after a break of a couple of weeks. There is nothing to do, and nothing we can do right now since the oncologist doesn't want to have to put him under anesthetic again.

It's been stressful, but we're trying to remain positive. They don't mess around with oncology patients. If the doctors are concerned about something, they tell you to go to your satellite, or come in to SickKids. SickKids is, if not the best, then one of the best children's hospitals in the world. If they're not panicking over this, and telling us to come in to the hospital ASAP, then it will hopefully turn out to be nothing. A Facebook leukemia support group that had I joined provided some answers, with one parent stating:

"It can happen when they're neutropenic. The bone marrow is trying to push out any cells they can to help their body recover and in the process they push out Young blood cells that aren't fully formed. Blasts are "forming cells" Don't freak out. I know it's terrifying though."

E had been neutropenic the week before, so this answer did quite a bit to soothe my anxiety. However, I am a worry machine, and it's one of the things I do best. We'll just have to wait until the next lumbar puncture, but the waiting is the hardest part.

On Friday February 23rd, and Saturday February 24th, we had our first two nausea induced vomits. I guess we've been lucky so far, in that E has been pretty good about not losing his appetite during chemotherapy. He has vomited during treatment before this, but those vomits were directly related to his sensitive gag reflex issue that we are still trying to work through. This time, there was no gagging or choking. His lunch went in, then for no apparent reason at all, it came right back out again like a science fair baking soda volcano. We have a prescription for an anti-nausea medication named ondansetron (I laughed when I firs heard the name, because I thought it sounds like the name of a Transformer), but we usually only give him the meds for 24 hours after a chemo treatment. It's difficult with E being only 22 months, since he doesn't have the words to communicate to us of how he feels. Everything we do is guesswork; our interpretation of how we think he's feeling. I gave him a dose of ondansetron, put him in the bath, and then he was able to keep down a bottle of milk. Solids later in the day were kept down no problem. E must have been feeling better later on, because he was running around playing (fighting?) with his brother.

E & J, mesmerized by PAW Patrol

Overall, I'm happy that Delayed Intensification I & II are over. I have a number of questions for E's medical team about the presence of the blasts. We've been told to not worry, so I'll just have to try to keep that thought front and centre.

46) The Williams Toy Drive, Brandon Cook's Holiday Toy Drive, and other thanks

First off, I'd like to write my appreciation for the Ronald McDonald House room located on the pediatric floor of Scarborough Centenary. They offer snacks, food, water, coffee/tea, shower rooms, and sleep rooms. Ronald McDonald House is a great charity that helps many parents who have sick children, so please support them on May 2nd 2018 for McHappy Day, or consider them if you are making any charitable donations. I would also like to thank all of the doctors, nurses, and staff in pediatrics at Scarborough Centenary for taking such great care of us during our hospital stay. Days, nights, weekdays, weekends, holidays. Medical staff are caring, selfless people who are devoted to caring for us in our worst moments when we are ill, and I cannot say enough good things about them.

I'd like to take this time to recognize The Williams Toy Drive (Facebook), and Canadian super welterweight boxer Brandon "Bad Boy" Cook's Holiday Toy Drive (Facebook, Twitter, Instagram, Web), and everyone involved in both toy drives.

The Williams Family has been doing toy drives for 8 years, and this was their 4th year supporting Scarborough Centenary. The Williams family has also supported WINGS maternity home, the Red Door women's shelter, and Toy Mountain.

Brandon Cook has been doing toy drives for 4 years, and this was his 1st year supporting Scarborough Centenary. Brandon Cook's Holiday Toy Drive has also supported SickKids, the Salvation Army, and Durham Regional Police.

Christmas Eve fell on a Sunday in 2017. That morning, I was surprised by appearance of our POGO Satellite Clinic nurse-practitioners. For one, it was Christmas Eve, and for two, it was a Sunday, and the clinic is only open Monday to Friday. They told me that they had arrived because they were receiving a big toy drop, and I didn't really think anything more about it. Maybe half an hour later, nurse-practitioner L popped her head in our room, and asked me if I wanted to bring E to the floor reception desk, because the group of people who had donated presents were actually here to give toys to all of the kids who were in the hospital over Christmas. My wife was still at home, so nurse-practitioner L helped me with E's IV pole while I pushed him in his stroller.

At the reception desk, there were a couple of carts full of toys, from teddy bears, to My Little Pony, to trucks, to Star Wars figures, to mini hockey sets, and more! We were encouraged to have a look, and pick whatever we thought our child would like. I felt a bit hesitant and awkward rummaging through everything, but I was looking it all, taking it in. Before long, Brandon Cook walked over to where I was standing with E, and he had an armload of toys. He was asking me what E liked, and was showing a few different things to him. A particular gift, a set of 6 little trucks, had him grinning ear to ear, so we knew that was the one!

I spoke to both Brandon Cook, and Byron Williams to thank them and their supporters for their wonderful generosity, and to let them know how much I appreciated the fact that their kindness had put such a big smile on my little E's face.

All smiles near the reception desk after The Williams Toy Drive & Brandon Cook's Holiday Toy Drive delivered gifts.

Brandon Cook and his recently-won junior-middleweight IBA Intercontinental Title

When everything wrapped up in the reception area, E and I returned to our room. I sent a quick message to my wife, and our families to let them know what had just happened, and then I lost it for a couple of minutes. I took in the gravity of what had just transpired, and cried some (mostly) happy tears. I've never really been on the receiving end of charity before this, and it hit me at that exact moment: we were that family. The family who has a child with a critical illness. The family who are in the hospital over Christmas. Complete strangers had gone out of their way and spent their hard earned money on a gift that ended up in the hands of my son. That gift put such a big smile on his face. I was overwhelmed by incredible generosity of all those involved with these two toy drives. Even now, almost 2 months later, as I finally put the wraps on this long simmering post, I still remember the way E's face lit up when he saw the trucks.

45) My fuzzy peach

Taken 2018-02-13. My fuzzy peach.

E's hair has grown back a little bit in the past couple of weeks. His head somewhat resembles a fuzzy peach.

The weather here in the Greater Toronto Area has been weird lately. Last Friday-Saturday-Sunday (February 9th-11th), we had off-and-on snow for nearly 3 days, resulting in some accumulation on the ground. Maybe 20-25 cm where we live. This time, the snow fell on the weekend, and when we had no appointments, so I was able to shovel the sidewalk in a timely manner without feeling guilty. When the snow stopped, it got cold. On Monday February 12th, we could have pulled J to daycare on his plastic sled. The other day (Wednesday February 14th), we had quite a thaw, and we actually pulled the wagon out of the garage, and comfortably walked to pick up J from daycare. I think it did E a bit of good to go for a ride and get some fresh air. Of course, we kept him outside at the daycare, with my wife going in to gather J and his belongings.

We were supposed to begin Interim Maintenance II this week, but a trip to our satellite hospital for some bloodwork before heading to SickKids showed that E's neutrophil counts were 0.3. Anything less than 0.5 is considered neutropenic. Because he was neutropenic, our trip to SickKids was cancelled and bumped back by a week in hopes that his counts will go up. A pediatrician checked out E's ears, and while there was no redness, he did tell us that E could be fighting a cold or a virus. If he's not currently fighting a germ, he's more susceptible to one with his neutrophil counts being low. My wife and I had our own medical appointments this week, but otherwise, we've mostly been at home. We're hoping the low neutrophil counts are just a small blip, and that E doesn't end up with a fever because I don't think we can hack a hospital stay at the moment.

I've been feeling extra stress the past couple of weeks, and I haven't felt overly motivated to write. I have a few drafts of ideas that I want to write about, but the words aren't coming out properly. All the way back to elementary & high school, I've never been one to write multiple drafts of work. I'd write once, edit as I go along, and then fake a rough copy if my teachers were anal enough to want to have a draft submitted along with the final work. What I have written seems forced to me, and it currently remains in draft so that I don't forget my ideas until I feel inspired to complete them. I still have a thank you/gratitude post half done that is about Christmas, but I just still don't feel like I'm in a positive enough frame of mind to complete it properly. Many times I write, because it feels cathartic to concretely put my swirling thoughts down in written form. For me, this blog is similar to scooping ice cream into a bowl. The negativity, or stressful thoughts are scooped out of my head where I put them into this space in the form of words and sentences. Naming them, and writing them out makes me feel better, I guess because I can work through specific issues, thoughts, or feelings. I gave up my insecurities about sharing personal thoughs fairly early on. If someone thinks any less of me for writing down honest feelings about my son's life threatening illness, that is their problem, not mine. Lately though, I've felt completely overwhelmed by many different sources of stressful thoughts. My mind feels muddy in a way that I'm finding it difficult to focus on each of the specific things that are bothering me. Jumping from thought to thought, and from worry to worry, I suppose that is why I have a few ideas in draft, and the feeling that what I have written seems forced.

Here's to hoping for lowered anxiety, and calmer thoughts.

44) Child with cancer lives here

We live in suburbia on a busy-ish street. It's a tertiary road, but it has a lot of foot traffic. It also connects to major roads at either end, and people use it as a shortcut to bypass traffic. The street is busier than what I thought it would be when we got our place. Now with two young boys, I'd like to move to a quieter street, but I don't see that happening anytime soon. There's too much going on with E, and his treatments/appointments, as well as dealing with an intensely busy 3 year old.

I sometimes feel like a bad neighbour. It snowed a couple of weeks ago. Twice. Monday January 29th overnight into Tuesday January 30th, and again on Wednesday January 31st. I didn't get out to shovel the sidewalk either time.

On Tuesday the 30th, we were at the hospital with E for bloodwork. E ended up needing a transfusion because his hemoglobin levels were low. We were at the hospital for most of the day since we first had to wait for blood, and then the hemoglobin transfusion process takes 4 hours: 3 hours to transfuse, and 1 more hour to monitor for allergic reaction. We were at the hospital longer than anticipated, so I had to leave and pick up J from daycare. I grabbed some dinner from home, and went back to the hospital to eat, and wait a couple more hours. By the time we got home, and got the boys put to bed, I was completely exhausted.

On Wednesday the 31st, my wife and I had an appointment in regard to J, and we both needed to be there. My wife's aunt helped us out by coming out to stay with E so that we were both able to go without the distraction of having to drag E along with us. Again, with travel time, the appointment, dinner prep, baths, and bedtime routine, I was once again completely exhausted by the time the boys fell asleep.

Luckily, on February 1st, we had a thaw, and the warm temperatures melted away the snow and my feelings of guilt.

I feel embarrassed when I'm not able to shovel the sidewalk. I imagine that people walking by see an unshoveled mess of snow and assume that we're lazy. I feel like we're that proverbial house that has a broken down, rusting car up on cinder blocks on the front lawn. I almost want to put up a sign that reads "child with cancer lives here" to explain away the lack of snow removal.

I suppose I shouldn't project my feelings of guilt on to what others may or may not be thinking. I shouldn't really care what people might think, since they don't know our situation. It's not an ongoing thing, it just happened that it snowed over a couple of days where I had pre-existing commitments where I couldn't get the snow cleaned. I have a limited amount of energy, so first and foremost, I am going to direct it to ensure that E gets to his appointments so he can undergo the treatments he needs.

43) The ports make the cyborg

cyborg (ˈsʌɪbɔːɡ), n. a person whose physiological functioning is aided by or dependent upon a mechanical or electronic device.

Since E has a port implanted in his body, and this port is used to administer chemotherapy drugs, I guess you can technically say that he is by definition, a cyborg. Under different circumstances, it might be cool, or interesting, but given that he needs it so that toxic drugs can be administered in a less harmful way to his body, it's just a part of the process of him getting better.

The first week of E's treatment after his diagnosis was hell. He didn't yet have a port, and all blood and medications had to be drawn/injected through an IV in his arm. It's extremely difficult to get a 15 month old to keep their IV in, and it had to be redone a number of times. I just checked one of my earlier entries, and the number was 5. He had to have his IV redone 5 times in a week, and because he was so little, they always had such difficulty finding a vein. The morning we were to be discharged, there was finally a spot for E in the OR, and he had his port surgically inserted near his upper right shoulder.

Here's a picture of a Bard PowerPort. I'm not 100% sure this is the exact model that E has installed, but his is similar. It is slightly triangular in shape, and it also has the three palpation bumps, similar to the ones seen in the picture. E's nurses use these palpation bumps to find the specific location on the port where the needle is to be inserted through the skin.

A Bard PowerPort, similar to the one that E has implanted under his skin.
Taken from http://www.bardaccess.com/products/ports/powerport

Another picture of the Bard PowerPort with a human hand for size reference.
Taken from http://www.bardaccess.com/products/ports/powerport

When port access is required, we apply an EMLA patch at least one hour before his port is accessed. EMLA patches contain lidocaine, and prilocaine, which are topical anesthetics. The EMLA patch makes it less painful for E when he is poked with the port access needle.

E's port site, unaccessed.

The following is a picture of E with his port accessed. Looking at this photo, I know that it was done at our satellite hospital. The satellite uses button style port access needles, while SickKids uses a slightly different butterfly style clip.

E's port site, accessed by button-style port access needle.

Similar to the button-style port access needle used by our satellite hospital.
Taken from http://www.bardaccess.com/products/infusion/powerloc-max

Similar to the butterfly-style port access needle used by SickKids.
Taken from http://www.bardaccess.com/products/infusion/powerloc

E is incredibly brave when his port accesses happen. I feel so badly that such a little guy has to get so many pokes all of the time. On the days where he's a little cranky or crusty, letting him watch a bit of Paw Patrol is enough to distract him while he is accessed.

At some point in the future, when the maintenance phase is done, E will return to SickKids for another surgical procedure where they will remove his port. I look forward to that day.

42) Words of wisdom

I saw the following thread on Twitter the other day. I read it, and it destroyed me. We are so lucky that E has a good prognosis for his leukemia, and we aren't in the situation of needing to think about palliative care. I thought I'd embed the tweets and share them, because all these brave children have words of wisdom that are beyond their years. Everyone can, and should take their advice.

For an assignment, I asked some of my terminal paediatric palliative care patients what they had enjoyed in life, and what gave it meaning. Kids can be so wise, y'know. Here are some of the responses (Thread).

— Alastair McAlpine (@AlastairMcA30) February 1, 2018

First:
NONE said they wished they'd watched more TV
NONE said they should've spent more time on Face Book
NONE said they enjoyed fighting with others
NONE enjoyed hospital
/1

— Alastair McAlpine (@AlastairMcA30) February 1, 2018

MANY mentioned their pets:
'I love Rufus, his funny bark makes me laugh.'
'I love when Ginny snuggles up to me at night and purrs'
'I was happiest riding Jake on the beach.'
/2

— Alastair McAlpine (@AlastairMcA30) February 1, 2018

MANY mentioned their parents, often expressing worry or concern:
'Hope mum will be ok. She seems sad.'
'Dad mustn't worry. He'll see me again soon.'
'God will take care of my mum and dad when I'm gone'
/3

— Alastair McAlpine (@AlastairMcA30) February 1, 2018

ALL of them loved ice-cream.
/4

— Alastair McAlpine (@AlastairMcA30) February 1, 2018

ALL of them loved books or being told stories, especially by their parents:
'Harry Potter made me feel brave.'
'I love stories in space!'
'I want to be a great detective like Sherlock Holmes when I'm better!'

Folks, read to your kids! They love it. /5

— Alastair McAlpine (@AlastairMcA30) February 1, 2018

MANY wished they had spent less time worrying about what others thought of them, and valued people who just treated them 'normally'.
'My real friends didn't care when my hair fell out.'
'Jane came to visit after the surgery and didn't even notice the scar!' /6

— Alastair McAlpine (@AlastairMcA30) February 1, 2018

Many of them loved swimming, and the beach.
'I made big sandcastles!'
'Being in the sea with the waves was so exciting! My eyes didn't even hurt!' /7

— Alastair McAlpine (@AlastairMcA30) February 1, 2018

Almost ALL of them valued kindness above most other virtues:
'My granny is so kind to me. She always makes me smile.'
'Jonny gave me half his sandwich when I didn't eat mine. That was nice.'
'I like it when that kind nurse is here. She's gentle. And it hurts less' /8

— Alastair McAlpine (@AlastairMcA30) February 1, 2018

Almost ALL of them loved people who made them laugh:
'That magician is so silly! His pants fell down and I couldn't stop laughing!'
'My daddy pulls funny faces which I just love!'
'The boy in the next bed farted! Hahaha!'

Laughter relieves pain. /9

— Alastair McAlpine (@AlastairMcA30) February 1, 2018

Kids love their toys, and their superheroes.
'My Princess Sophia doll is my favourite!'
'I love Batman!' (All the boys love Batman)
'I like cuddling my teddy' /10

— Alastair McAlpine (@AlastairMcA30) February 1, 2018

Finally, they ALL valued time with their family. Nothing was more important.
'Mum and dad are the best!'
'My sister always hugs me tight'
'No one loves me like mummy loves me!' /11

— Alastair McAlpine (@AlastairMcA30) February 1, 2018

Take home message:
Be kind. Read more books. Spend time with your family. Crack jokes. Go to the beach. Hug your dog. Tell that special person you love them.

These are the things these kids wished they could've done more. The rest is details.

Oh... and eat ice-cream. /End

— Alastair McAlpine (@AlastairMcA30) February 1, 2018