The week between interim maintenance visits was the kids’ first
week back to school! Both kids have been loving it and both have claimed to be
friends with everyone. Hilariously, like older kids, they seem unable to tell
me anything that they’ve learned at school. Maybe this is a deep seeded part of
the developing human brain lol
Sick and in isolation
Video chatting mom and sister during the tornado warning to make sure they were okay
Playing games with mom
From the last visit, but Locke was on TV!
Also not surprisingly, Lochlan brought home some sort of
upper respiratory infection. His body seemed to handle it fine, but that meant
we spent the whole next week in isolation for his maintenance therapy. This was
our third week in the hospital. Other than being trapped in the room all week,
there weren’t any major complications. Locke’s creatinine levels were a little
elevated at the beginning (probably due to his kidney thing), so they put him
on extra fluids. We were originally worried that his lack of exercise might
slow down his methotrexate clearance rate, but those extra fluids kept us on
track. Locke was out of the hospital by noon on Friday, which was a new record.
Family hike in the neighborhood
A young berserker
spiderwebbing
Becca made this and Dr. Bones owned it
Feet loaf
Because Locke was out early on Friday, and it was Friday the
13th, there was time to have a FUN-FRIDAY! We started Halloween decorations and
ate Feet Loaf, Becca’s take on meat loaf. It tastes way better than it sounds…and
looks…
Just barely caught Angry Birds 2 in theaters
Another week of freedom, play, school, then it is Torren’s 3rd
birthday on Saturday! That will be a great way to cap this last week before what
I think is our last week of interim maintenance.
Well it has been a busy couple of weeks since the last post. Through the Children’s Hospital, Lochlan was nominated to have a horse come and visit our house thanks to Camp Casey ( https://camp-casey.org/ ) the weekend before last. Camp Casey is a horse riding program that started in Farmington Hills, MI in honor of a young girl named Casey Foote. When Casey was going through chemotherapy, for her brain and bone cancer, she found solace in horseback riding. This non-profit visits kids with cancer and throws them a pizza party with a horse! AT THEIR HOUSE! In fact, when they knocked on the door, our horse “Mosey” was standing AT THE DOOR! He even sneezed into our house lol We were worried that Lochlan wouldn’t ride the horse because he avoids all petting zoo animals. But, he actually did really well and both brushed the horse and rode it without much prodding. Torren, who loves animals, was ecstatic as expected. This was a really unique and fun experience, so we are grateful to have had them visit.
Playing Wii U
Late Thursday night with Torren the sleepless
I’m a kitty
GOING HOME!
That was followed by our second trip to the hospital for a dose of interim maintenance chemotherapy. We checked in on Tuesday morning and Locke’s counts were good (although hemoglobin was on the lower end, so they planned to do a blood transfusion once the chemo treatment was done), so we were given the green light to start treatment that night once Locke was sufficiently hydrated. The week was pretty low-key, but the highlight of the trip was that the hospital recently had some Wii U play centers donated, so we got to play a newer version of Mario Kart. While Rebecca stayed with Lochlan during the days, I once again stayed the first two nights and she stayed the third night. As a reminder, our check out day/time depends upon when Lochlan has peed out almost all of the methotrexate. The first time we did this, Lochlan started the methotrexate at 6pm on Tuesday night and hit his target blood level by Friday morning. However, this time Lochlan didn’t start methotrexate until after 9pm. This ended up being an important factor, because by Friday morning, Lochlan was sitting just above the threshold for being considered “clear” to go home. The nurses said that because of this, he wasn’t scheduled to be retested until SATURDAY MORNING. This wasn’t going to work because 1. We needed to be in Midland on Saturday morning for Grammy’s birthday and 2. Lochlan was only a tiny bit above the threshold, so we suspected that he might pee the rest out by that afternoon. Becca debated with the floor doctor and got him to schedule another test for 2pm, although the doctor insisted that kids often sit slightly above threshold for a whole day so he didn’t think Locke would pass the test. Pshhh… Locke was well below the threshold by the 2pm test. So we got cleared to go that night after the blood transfusion.
As another reminder, Lochlan tends to spike a fever 3-4 days after receiving vincristine. He got vincristine late Tuesday night, and as expected, spiked a 100.3 fever on Friday. I was worried bc we were still in the hospital when it happened. But clearly the nurses/doctors have finally taken our claim seriously, bc they still let us leave right after the transfusion (7pm). We gave him Tylenol, then he had no other fever issues that weekend. Locke and I drove home, we threw him into the other car, and drove to Midland.
Torren was very excited for her new coat
Playing good guys vs. bad guys
Locke took a selfie
Making breakfast
The birthday weekend at Grammy’s went well. It was primarily a combination between Torren and Grammy’s birthdays, but there was some celebration for Lochlan and Becca’s cousins Marcy and Ty as well (although Marcy couldn’t join bc she was sick). There were several trips to the playground, some runs around the neighborhood, and a few minutes of sleep. Lochlan had some struggles playing soccer with some kids who came to the party on Sunday. The medicine and cancer have slowed him down and little kids can’t really be expected to understand that they need to play with him a little differently until he gets off the chemo and gets his legs back. One kid pushed him pretty hard and Locke fell on the side of his bad kidney so was having a lot of trouble with pain and his pee was a little dark that night. Thankfully, that all cleared up by bedtime, but I got really stressed out and lost my interest in celebrating, so spent some time alone until the party calmed down. I’m getting too old to keep up with Grammy and Bop anyway lol jk
One last exciting thing that happened, was Locke started preschool today! This is his first time going to school without mom (previous preschool was a co-op). Tomorrow Torren starts her class! Lochlan was happy when mom and Torren picked him up, so I think it went well. He said that everyone is his friend.
Well thanks for following this adventure. We are planning on enjoying this hospital-free week before heading back next week.
I know I promised an update last Odin’s day or Thor’s day,
but it’s better to post on Máni’s (moon’s) day than never post at all
right? So originally Locke was supposed to start interim maintenance on 8/5. For
this stage of chemo, they want the normal bone marrow cells to get a full break
from heavy immune suppressive drugs. However, Locke’s blood cell counts were
low on 8/5, so we did not start interim maintenance until the following week
(8/13).
Mom accidentally packed Torren’s shorts in Locke’s bag so we thought it would be funny to send her this pic
Night lights outside the children’s hospital
Lochlan took pretend cooking super seriously
Playing with the hospital train set
Torren wanted to show Locke the crown she made
So what is interim maintenance? This is a 2-month “break”
where Locke gets a slight change in chemo to drugs that still strongly disrupt
highly proliferative cancer cells, while not overly preventing the proliferation
of the more moderate normal cells. Unlike previous stages of chemotherapy, Lochlan
HAS to spend a few nights in the hospital every other week, where they monitor the
levels of one of his drugs (methotrexate) to make sure he gets it out of his
system before sending him home. However, while they originally told us it would
be 3 DAYS, it turns out that it’s more like a MINIMUM of 3 NIGHTS and he leaves
whenever his methotrexate levels dip below a certain point. So it’s essentially
a full workweek, every other week. Yes. It is not our favorite. But this is
life now. There aren’t other options, so we take things as they come.
The drugs for this stage:
Vincristine
Vincristine. Same drug that he has been getting since we
started this whole ordeal. This drug primarily works by screwing up the cell
machinery that is involved in allowing cells to divide while they are
proliferating. In a normal cell, this gets sensed as a problem that the cell
needs to fix or at least slows down cell division. If this can’t be fixed, then
the cell kills itself. For cancer cells, they either sense this and die or they
divide and end up with an abnormal/incomplete number of chromosomes and this
greatly screws up their function and they will often die as a result of the
improper segregation of chromosomes/genetic information. This drug can cause
severe constipation. For those familiar with Lochlan’s adventure, he tends to have
a lot of issues with vincristine constipation. However, we seem to be on top of
it this week and haven’t had any issues that weren’t solved with some
laxatives/stool softeners. This drug also tends to give Lochlan a fever 3-4
days after administration (well low grade for 3-4 days and then it spikes). The
doctors did approve the use of Tylenol the day of, and the day after receiving
vincristine and this has seemed to help prevent the fever spike. This is great
bc usually the fever meant an additional 3 days in the hospital.
Folic Acid
Methotrexate
Leucovorin
Methotrexate. Previously Lochlan had only received
methotrexate in his spinal fluid. As a reminder, methotrexate interferes with
various cellular pathways by pretending to be the B-vitamin folic acid (one of
which is in the formation of the nucleobases that constitute DNA). It strongly
suppresses immune cells and was one of the first chemotherapies developed for
leukemia. It was originally given in the spinal fluid to prevent leukemia cells
from establishing themselves there. For interim maintenance Lochlan is
receiving methotrexate in his IV every two weeks. In addition to suppressing
the immune system, it can also be highly toxic to the kidneys. This is why
Lochlan is monitored and not allowed to leave until the drug is mostly cleared
from his system. To help clear the drug, Lochlan is given lots of IV fluid, beverages,
and is encouraged to run around the hospital. To make our hospital stay even
better, he(we) is(are) forced to wake up at least two times a night to pee.
Leucovorin. Leucovorin is a methotrexate “antidote.” Leucovorin
is given to rescue the normal immune cells from the suppressive effects of
methotrexate bc it can be converted to other folic acid derivatives while bypassing
the enzyme that is directly inhibited by methotrexate. So Lochlan receives
methotrexate for a few days, this kills off some residual cancer cells
(although also prevents proliferation of normal cells), then Lochlan is given
leucovorin, which rescues the cells that didn’t die in response to methotrexate
so that they can resume normal proliferation.
6-MP
6-Mercaptopurine. Lochlan received this oral chemotherapy during
consolidation/intensification. He takes this pill every day, but at half the
dose he previously used. This drug interferes with the formation of nucleobases
that constitute DNA.
But that’s basically it. Otherwise Lochlan has had a fun and
busy couple of weeks. His cousins Ava and Gabe were in town two weeks ago. Then
last weekend Lochlan and Torren got to spend the weekend with Grammy and Bop
while Becca and I went to Lake Huron with Becca’s cousins for our annual
cousins’ camping weekend. Sadly for me, I pulled a muscle in my back while I
was squatting on Friday. So I spent the weekend in excruciating pain. But it
was still fun. Although we did not get super restful sleep, so we are pretty
tired. Talk to you all soon.
Uncle Aaron teaching Lochlan some sports
Lochlan demonstrating a pretty good throw
Cousin photo
Riding bikes with Ava
Seriously lego building with dad
The NASA experiment I helped design last year made it to the international space station a few weeks ago. Here’s an astronaut changing cell media. Unfortunately, I was not there for the launch due to Lochlan’s leukemia, but the rest of the team got everything set up without me!
Playing cards on the beach
Grilling dinner
Men can plan without needing to communicate with each other ahead of time
It has been quite a streak of good ol’ family fun since the last post. Lochlan did NOT spike a big fever before his birthday party, although it did go up to like 99. We gave him Tylenol for the first 24 hours after the vincristine. Then we gave one more time after that because he had some random ache/pain. So maybe hitting the inflammatory response early helps blunt the fever response.
silly string
Locke with the Benedict boys
Pinata prizes (yes, this is all in reverse order)
The snack table
Balloon race
Lochlan’s birthday went off super smoothly and Becca really loaded up on the party games and Star Wars themed food items. I was really impressed. She totally nailed it. Lochlan also had a great time and was full of smiles that whole day. Because Grandpa Bud’s birthday is the day before Lochlan’s, we also celebrated his birthday! We usually camp with Becca’s family for Lochlan’s birthday, but that obviously couldn’t happen this year. Instead, Becca’s family stayed until Tuesday and we played our typical yard games and had bonfires/cooked in our backyard.
Happy Birthday Grandpa Bud!
Stormtrooper homemade cupcakes
Flying
How many people CAN you fit in a hammock?
Water balloon fight prep. With a playset, things got pretty serious
Campfire cooking!
The week was after that was fairly uneventful, until my sister and her family came to stay with our parents. We spent the weekend with them at the beaches in Grand Haven. The kids had a blast together. The day we got back home, Torren was telling me all about her big sister (her cousin Ava) and other grandfather (her uncle Aaron). So it was another good weekend.
Sometimes he asks to have a selfie taken with him
Playing on Rosy Mound Beach
Needed a break bc it’s a long walk to the beach
Becca’s first attempt at a 5 strand braid on Ava
Let me tell you about our extensive range of microbrews
Love
Love
Beach bums
As many of you know, Lochlan was SUPPOSED to start interim maintenance this week. However, when Becca brought him in on Monday, his circulating blood cell counts were too low. So they gave him a blood transfusion and sent us home for another week. The interim maintenance is partially about letting the normal bone marrow cells rest a little from the super strong cytotoxic chemotherapies. Some kids take up to 3 weeks off from consolidation to allow the bone marrow to recover before they start interim maintenance. Therefore, there is some potential that it won’t start for an additional week. I will update next week regarding whether Lochlan’s counts are back up!
In general, Becca is the main person that interfaces with the doctors and then relays information to me, then I post about it. The problem is that I have pretty bad ADD, which can result in me missing bits and pieces of a message. Sometimes the details aren’t important (at least in my opinion), but sometimes they are. This is one case where the details were important. Becca sent me the following text before I wrote yesterday’s post: “So next we enter interim maintenance. Where every other week we go in for 3 days. That lasts for 2 months. What days would be best? Weekend or weekdays?” My brain skimmed the following: “So next we enter maintenance. Where we go in 3 days every month. What days would be best? Weekend or weekdays?”
So interim maintenance, is 3 days, every other week. The chemo is less intense than consolidation, but the schedule is actually worse because we HAVE to be in the hospital every other week. After 2 months, then we may re-enter intensification/consolidation phase for an additional 2 months before we go into actual maintenance. So unfortunately, we aren’t even close yet to maintenance/normalcy. Sorry for the false alarm.
Love
Kevin and Becca
Sorry for the lack of pictures, but I don’t have any new ones for this quick update. I’ll post again following Locke’s birthday.
Torren helping to wrap Locke’s presents instead of sleeping
Torren’s gift to Lochlan
Second-to-last chemo day of consolidation therapy
The kids looking cute together in hats from Brenda Kerr
This post will be extremely short, but Lochlan went in for his vincristine and asparaginase treatment today. Blood counts looked good (better than anticipated given the toxicity of Cytoxan that he received two weeks ago) so he didn’t need a transfusion. He will almost certainly need one next week. Doctors gave him prophylactic Tylenol to help combat the onset of fever in response to his chemo (which has been a consistent issue) and we were given permission to give him Tylenol for fevers at least through tomorrow. He usually spikes a major fever 3 days after vincristine, but this is at least a sign that the doctors are taking our notes into consideration. Who knows? Maybe being aggressive with the fever in the beginning will prevent the spike or at least delay it for after his birthday. Or maybe I’m wrong and there is no relationship and it has all been coincidence. I don’t think the vincristine-fever mechanism has been figured out or at least I haven’t seen a mechanism in the scientific literature (although the relationship HAS been observed in other kids). But good news! Next week, Lochlan will receive his LAST dose of chemo for the intensification/consolidation phase! Then WE GO INTO MAINTENANCE!!!! All I really know about maintenance at this point, is that it will involve us staying at the hospital 3 days in a row, once a month, for 2-3 years. That’s it. A weekend a month. His hair will start growing back. His normal cells will start living a mostly normal life cycle. His energy for the past month has been pretty good, but even that will improve. He will start his new pre-school in the fall pretty much back to normal.
That’s all I have for today. We are all really looking forward to celebrating Lochlan’s 5th birthday this weekend. This is an extra bit of celebratory material to add to the festivities. Thank you everyone for all of the love and support. I will post an update when we find out more details about how maintenance is going to work and I will continue to post periodic updates during maintenance.
I suppose that it is probably safe to assume that if I don’t post for a pretty long time, that is because everything is more-or-less “okay.” The last time I posted, Locke had to be admitted into the hospital because he had a fever and a headache (July 2nd). All blood cultures and viral swabs came back negative. The fever went away after the first night we were there (staying consistent with the vincristine pattern). The headache stayed around an extra day. They wanted to do a Positron Emission Tomography (PET) scan to see if they could identify a source of active infection, however due to the holiday, they weren’t going to be able to get him in until the 8th. Because the fever and headaches were gone by the 4th, they decided it wasn’t worth waiting because they probably wouldn’t find anything anyway, so they let us go home on the 5th. For a PET scan, people are given a relatively mildly radioactive version of glucose (fludeoxyglucose) that is taken up by hungry cells, but isn’t broken down so sort of hangs out in the cell. This technique is best known for identifying tumors because they suck up glucose at incredibly high rates (unless they’re slow proliferating cancer stem cells), but active sites of inflammation also have bunches of cells that need a lot of glucose to fight an infection/repair damaged tissue. So PET scans can also be used to identify sites of infection.
Glucose
Glucose with radioactive fluorine atom
Example of PET scan. Red indicates high glucose uptake
I ended up coming down with a cold on the 5th and Locke got it within a couple of days, but his blood cell counts were back up by this point, so he didn’t seem to have any enhanced illness due to his crappy immune system. We celebrated the 4th a few days late with Nanna and Bud. The past two weeks he has been on his Cytoxan, Cytarabine, 6-MP cycle of chemotherapy. He seems to handle those drugs a bit better because it was another uneventful 2 weeks. Unfortunately, tomorrow he starts vincristine again. This is a concern, because his 5th birthday is on Friday and his party is on Saturday which is exactly when we expect him to spike a vincristine fever. We will discuss options with the doctors. According to a study I saw, kids who were also taking steroids (dexamethasone) tended to not spike fevers in response to vincristine.
Playing games on the 4th at the hospital
I left the room for 2 minutes to switch over the laundry :*(
Sinks are a lot of fun
Freyja loves magic tracks
Our family 4th of July pic from the hospital
Home
5th of July celebration
Dr. Bones found a missing car
Bob’s burgers
6th of July celebration
Other activities over the past two weeks, included a trip to Grammy and Bop’s, a few trips to friends’ pools, and a lot of hanging out as a family AT HOME. Hopefully this week goes smoothly and Locke has an AWESOME 5th birthday. He wanted it Star Wars themed like his friend Jude from Indianapolis. I also heard that Jude’s mom overheard Jude talking to some neighbor kids. Jude was trying to collect toys to send to his friend Lochlan who had cancer and needed cool things. Kids are great. Adults could learn a lot from kids. Enjoy the pics!
I’m a hipster now
Locke upset bc he thought I bought him fancy underwear, but I said I got myself matching underwear
Swimming at Dee and Kevin’s pool
Static electricity
The Octagon
Leaving the elementary school park
Yeah, we started playing Magic
Goodbye Becca’s car with no name
Goodbye for real William H. Macy
Torren “didn’t know cars could drive up curbs”
Lunch with Lee and Amy
Swimming at Lee and Amy’s
Bubbles
Roasting peeps over the fire
We forgot that we didn’t have marshmallows, but we did have some peeps!
So, when I last posted, Locke was delayed on receiving his asparaginase
treatment until the next Monday (6/24). The weekend before that, Becca and I
got to have a nice day away for our 9th anniversary. Saturday (6/22)
started out with a workout for me and a haircut for Becca. Then we went and
played disc golf at Cascade park, which we hadn’t done in like 10 years. They
changed the course a bit since the last time we played, but it was clearly still
well maintained. I had some worries that people stopped playing disc golf and
that Cascade may have taken their course out. Then thanks to Becca’s sister
Rachel, we were able to use her hotel credits to stay at the Courtyard by
Marriott downtown Grand Rapids. After getting cleaned up, we went to San Chez
for dinner and had some amazing tapas. We followed this up with a visit to the
hotel pool where we battled with our pool super hero moves and Becca showed how
much better she is at swimming underwater than me. After sleeping in a tiny
bit, we ate breakfast at Sundance Grille, then meditated, then took a long
casual stroll through Ada park on our way back home. It was a great weekend,
which was good because things have sort of sucked on-and-off from there.
Torren fake peeing on a target
Water fight
On Monday (6/24) Lochlan went in for his asparaginase treatment.
While there, he first had a coughing fit (unclear if it was in response to the
asparaginase or bc he freaked himself out which he does a lot now with medicine),
so they took a break and restarted the treatment. When he was about 2/3 of the
way through, he spiked a fever. Lochlan consistently spikes fevers ~3 days
after receiving vincristine (which was on 6/21) and bc our immunes systems can
develop antibodies against asparaginase after prior exposure (he had it during
the first month of chemo), it was unclear whether the fever was due to one or
both of those chemotherapies OR it was in response to a sudden bacterial
infection (which I was skeptical of based upon the reasons I just listed that
relate to chemotherapy). But because he had a fever and because he had low
neutrophils (~300ish), he was put on IV antibiotics and admitted to the
hospital. We figured that it would be a day or two of a hospital stay and we
were convinced it was probably the chemotherapy because Lochlan showed no signs
of illness and was running around the hospital the two days he was there.
However, Wednesday the floor oncologist said Lochlan was not allowed to leave bc
he insisted that it was bacteria (even though the blood cultures also failed to
show any evidence of bacteria). I was at work when this happened and Becca was
clearly upset with how the conversation went with the doctor, so I headed over
to get a better idea of the rationale behind keeping Lochlan in the hospital. So
the rationale went like this: The doctor seemed skeptical that Lochlan spiked a
fever 3 days after vincristine, but that he would check Lochlan’s notes. The
doctor said that immune responses to asparaginase don’t just present as fevers,
but more as allergic reactions. So he was highly confident that this was bacterial
and that Lochlan had to stay on IV antibiotics because he didn’t have enough
neutrophils to be sent home and that there was a 30% chance of a worse
bacterial recurrence if Lochlan went home instead of staying in the hospital. I
asked if there was a broad spectrum oral antibiotic that we could give at home.
He said one didn’t exist. I was skeptical of that claim, so I asked a nurse to page
our primary doctor because she’s a better creative thinker. After talking to
her, it turned out that a study recently came out showing that patients who
essentially matched Lochlan’s characteristics, who took the oral antibiotic Levaquin
(which we had at home because it was the antibiotic they sent us home with when
Lochlan first came home from the hospital) showed major protection against
recurrence. So she ordered Lochlan to be given a shot of neupogen (to stimulate
neutrophil production from the bone marrow) and sent home as long as he agreed
to take his Levaquin twice a day. It also helped that we were due to come back
for chemo that Friday and that we only live ~25 minutes from the hospital. She
said that if he spiked a fever before Friday that he had to come back in
immediately. I promised and said that I would come crawling back, begging for forgiveness
if that happened. So evidence based medicine won the argument and Locke was
able to go home and play with his sister and all of his toys. He was very
happy. He did a great job taking his Levaquin Thursday and Friday, despite it
being the most foul tasting medicine that I think I’ve encountered. He didn’t develop
a fever and was able to get his vincristine without any issue on Friday.
However, Friday brought a unique stressor…
In hospital for fever A
Back home with sister thanks to science
Happy we bartered his freedom
Because Lochlan is taking some major chemo that saps his
normal blood cells (all of his counts were about 10% or less of what would be
considered normal last Friday), Lochlan consistently needs to get his blood
cells counted and a blood transfusion with his chemotherapy. Neupogen needs
about a week to really work, so Lochlan’s neutrophil counts tanked by Friday
(30 per cubic mm, when we want closer to 3,000). That was disappointing, but
the stressful part was that when they measured his circulating blood cells,
there was about 10-15% immature cells. There should be 0%. They were of the
myeloid lineage, so there was some fear that Lochlan had leukemia recurrence,
but that it switched from Acute Lymphoblastic Leukemia to Acute Myeloid
Leukemia. This can happen to people with Lochlan’s particular translocation and
our doctor had observed this in a previous patient of hers (who needed a bone
marrow transplant, but survived and is a young adult now). So Lochlan also got
a bone marrow biopsy while he was there in order to get a better idea if this
was indeed leukemia. Our doctor was hopeful because preliminary analyses
suggested that the immature cells were at several stages of maturation (a
leukemia would typically present as only one stage) and because several studies
have documented that neupogen can result in the presence of circulating
immature myeloid cells (neutrophils are of the myeloid lineage). We didn’t
actually get the confirmatory results that looked for translocations until
Monday, so the weekend was a little tense, but the results came back that the
cells were normal. So this and the fever issue from last week were the reasons
that I didn’t post an update until now. I didn’t want to leave you all with a
bunch of potentially serious cliffhangers.
Torren and baby Warren
Nude gardening
Sandbox with Warren
Dad takes short break from shed building
The tiniest cornhole
Lochlan’s Bulbasaur
Warren hugging boy
Warren hugging girl
That weekend, Becca’s cousin Marcy came to visit and brought
her 1 year old son Warren. Lochlan and Torren had a ton of fun playing with him.
Having everyone in the family distracted by Marcy and Warren freed up some time
so that I could put down the paving stones and start assembling my shed. I got
most of it up by Sunday afternoon, then Becca finished it while I played with
the kids. I forgot to take a final picture, but here’s a couple of progress
shots.
The instructions recommended two people work together to assemble the shed
It’s not absolutely level, but relatively level
Some of you may be doing some math and wondering whether
Lochlan got his fever 3 days after his vincristine injection. He did! Monday
afternoon/evening Lochlan had a temperature hovering in the upper 99.x F. Technically
we don’t need to call the hospital until Lochlan has a consistent fever over
100.3 F. But I packed our bags while we waited, because they tell us to come in
100% of the time once we call. Packing our bags was pretty easy because Becca
had already put out Lochlan’s clothes for several days on my dresser. Lochlan fell
asleep in our bed while we were trying to figure out if we needed to call the
hospital that night or in the morning, so we decided that I would sleep with
Lochlan and wait until he got hot and then bring him in. Around 4 am, I woke up
and felt that he was pretty hot, took his temperature (102.2F) and got ready to
go. He was in pretty good spirits, despite the fever, but also had a headache, which
was new. We don’t have any test results back from blood cultures or anything
(they were also supposed to take blood to test if his body rejected the
asparaginase from last week), but Lochlan’s fever is going pretty strong ~103F
at 8:30 pm and he last complained of a headache and dizziness. So I think he
might be actually sick this time. It’s not clear if it is bacterial or viral. I
don’t know if they’ve taken any mucosal swabs to test for viruses. They’ve
never successfully cultured a bacterial specimen from him, but they did get
positive results for viruses when we were first admitted at the end of April. His
neutrophil count is slowly climbing (back to 300), but I’m guessing that we won’t
be out of here until the end of the week at best. So I guess I am still leaving
this post as a cliffhanger, but I’ve gone too long without posting something.
Thanks again for all of the love and support. Becca and I discussed it a little
and we think Lochlan’s spirit is becoming a little stronger during these
terrible months. He does a better job of appreciating things around him (he
talks about how beautiful the trees are whenever we drive anywhere) and he has
been voluntarily helping out with some basic tasks around the house like
feeding the cats. He also tells some of the nurses how great they are.
How Becca and I communicate
Fever B
At least there’s tons of toys here
Lochlan got a tractor for his poke prize. He told the nurse that he wanted to get the whole set when he made enough money. She gave him the whole set. Nurses love this kid.
This isn’t the life I would’ve picked for any of us, but I
do think we’re all getting stronger. Tired and often walking a fine line across
the cliff of despair, but we haven’t fallen.
Love
Kevin and Becca and Torren and Lochlan and Orion and Freyja
Lochlan reading cards from his cousin Ava’s Brownie group
Out for a ride with Torren
Driving the neighbors’ cars
Cruising with Heidi’s girls
Torren drew this lion for Locke
It has been about a week since my last update. Life has
started to get to a somewhat stable level of abnormalcy. Since the last update,
we had Father’s Day. That was fairly low-key. Nanna and Grandpa Bud came over and
brought some ribs and other fixings. My Impala (William H. Macy) has had the
death rattle shake for over 6 months (13 years, 220,000 miles, a hidden oil
leak, a coolant leak, a minor steering fluid leak, multiple electrical issues,
a broken muffler, leaky tires from rusty wheels, etc.) Grandpa Bud generously
donated his gently used Toyota Camry Hybrid (now Steve Buscemi). It is a nice
ride. It’s 5 years old and still smells mostly new. A couple of years ago, I
left a watermelon and a gallon of milk in my trunk for a hot Indianapolis week.
I’ll leave that smell to your imaginations. But I now feel safe driving my kids
in my car. Well I haven’t technically driven them in the new car yet, but I
will feel safe about it when I do. If you’re wondering about how I decide on names
for my cars, my black jeep in high school was Don Knotts. If anyone can guess my
pattern (besides great male actors), kudos to you.
Goodbye William, hello Steve
I love Torren’s face
My pony tail is finally coming in super classy
My friend Gabi brought her elephant femur to work
The week was filled with fairly normal work. I’m doing a
bunch of CRISPR/Cas9 in some pancreatic cancer cell lines. The kids continue to
need someone to sleep with them every night. Lochlan has been doing okay with
taking his at-home chemotherapy. And the kids have been doing a lot of normal play,
including play dates with our friend Heidi’s girls and the neighbor girls. Locke
even got a special short visit from his good friend Jude and his older sister Ella
(who Torren loves) as they were heading back to Indianapolis after what I think
was a Father’s Day camping weekend with other family members in Michigan.
Visiting our friend Aimee’s house
Chemo with mom
Ultrasound with sister, kidney wound looks a tiny bit healed
Bubblessssss
Torren wanted her picture taken with our new friend Bobah
Lochlan went in and got his methotrexate dose in his spinal
fluid, an IV dose of vincristine, and a blood transfusion (all of his counts
are low again). The plan was to give him asparaginase today as well, but because
the blood and asparaginase both have the potential for immune rejection, they
didn’t want to give him both in the same day. So unfortunately, Monday he will have
to go back in to get the asparaginase. This is his first time having vincristine
in like 3 weeks, so his poop has been mostly normal. He will also get
vincristine next Friday (2 weeks on / 2 weeks off) so we will have to stay on
top of his stool softeners and laxatives. But because these are vincristine
weeks, Becca gets a break from giving him his at-home chemo IV (cytarabine).
This also means that he doesn’t have to have his tubes hooked up to his port,
so he gets like two weeks of warm baths!
Tomorrow Becca and I will be celebrating our 9th
anniversary! First I will lift weights while Becca gets her hair cut. Then we
are going to drink some Traverse City Cherry Bourbon while we play disc golf.
Then we are checking into our hotel downtown. Then we are going to dinner. We
don’t really know where, we are just going to wing it. Then we are going to go
in the hotel pool and hot tub. Then we are going to watch a movie in our room.
Then we are going to sleep in. Then we are going home to play with the kids
again. Our anniversary is technically the 26th, but Becca’s parents
were coming to town this weekend, so we figured this was a great opportunity to
leave for a whole night.
That’s it for now. Enjoy the pictures.
Love
Kevin and Becca
As a reminder: if you’re interested in donating to Lochlan’s
medical fund (we hit the goal, but I imagine the bills will rack up even higher
over the years), please check out his GoFundMe link below. Thank you to
everyone who has contributed to the fund and/or has given support to our family
in other ways. We are grateful for all of it.
Dinner at Big Boiler Brewery with Jeff and Jon Kollnot
Oh and an old friend of mine (Jon Kollnot) was recently
diagnosed with stage 3 gallbladder cancer. He does not have good insurance, so most
of his medical care is not being covered. The drug that the doctors want to
give him, is going to cost him $1800 like every other week. They really need help.
So please consider donating, even if it’s only a few bucks.
Sorry for the delay; we’ve been enjoying our time at home!
Friday night at the hospital was fairly uneventful and Lochlan didn’t have a
fever, so we were cleared to head home early Saturday afternoon. Once we got
home, there was plenty of time for Lochlan to play with Torren and Aunt Rachel and
explore all of the new yard toys (playset, sandbox, and hanging tent). The play
has continued over the past several days and Lochlan has been showing the most
energy and enthusiasm that we’ve seen since before he got sick. On Tuesday, he
even dressed himself and put himself on the potty, so we’re relieved to see
that he hasn’t given in to helplessness and seems rededicated to pursuing a bit
of self-sufficiency.
Flower petal angels
Hugging the tree right after getting home
Socrates
The first hug
Normalcy
Exploring the new playset
The hanging tent
As I have mentioned a few times before, this stage of
chemotherapy has MORE drugs. I now have a list of these drugs so I’ll give you
a rundown about what drugs he’s taking and a bit about how they work. The
reason for increasing the number of chemo drugs, is that if there are any
leukemia cells still hanging out in his body, they must be resistant to the main
drugs that he received during his first month of treatment (vincristine,
dexamethasone, and daunorubicin). Drug resistance can be due to mutations that
prevent the binding of drugs to their cellular targets, increasing the
expression of enzymes responsible for degrading the drugs, or by increasing the
expression of drug transporters that physically pump the drugs out of the cell.
We will continue to incorporate some of the old drugs because we know that they
were able to suppress the vast majority of leukemia cells and even if there’s
some resistance to them, the combination of the old drugs and new drugs might
be more effective than the old or new drugs independently.
Here’s a list of the current cocktail:
Mercaptopurine (6MP): orally, 5 days a week at home
Cytarabine (ARA-C): by IV, once a day, 4 days a week at home
Cyclophosphamide (Cytoxan): by IV, every 4 weeks at hospital
Methotrexate: In spinal fluid, typically once a week, at
hospital
Vincristine: by IV, weekly (two weeks on, two weeks off), at
hospital
Asparaginase: by IV, once every 3-4 weeks, at hospital
The first warm bubble bath in 2 months
I told you that it was a lot. And Becca has to use her Vet Tech skills and give IV pushes through Lochlan’s port for the Cytarabine! How that will happen is that on Fridays, when Lochlan gets his weekly chemo treatments, the doctors will install an IV line into Lochlan’s chest port, then Becca will use that IV line to give Lochlan his at-home chemo through Monday, then she will remove the IV line after the Monday dose. While Lochlan is hooked up to the IV line and for 24 hours after its removal, Lochlan cannot have a bath. Lochlan loves warm bubble baths, so he’s not super pumped about this. However, he had his first full bubble bath since getting sick this past Tuesday. As you can see in the picture, he was in heaven. At least he gets to take baths 3 days a week now. That’s better than zero. But what are all of these drugs? (In the chemical structures, if you see a line with a kink, that kink represents a carbon atom (C), which typically also has 1 or 2 hydrogens (H). But that’s as far as I’m teaching organic chemistry today). I got all of the structures from Wikipedia.
The building blocks of DNA and RNA
Mercaptopurine
Mercaptopurine: Used to treat leukemias, Crohn’s disease,
and ulcerative colitis. “Mercapto” means that the compound has a sulfur atom. A
purine, is a type of double ring structure that contains carbons and nitrogens.
The purine structure is found in adenosine and guanosine, which are 2 of the 4
building blocks of DNA (adenosine, guanosine, cytosine, and thymidine). Because
mercaptopurine has a similar structure to adenosine and guanosine, it sneaks
into the pathways that cells use to make adenosine and guanosine, thereby
preventing cells from copying their DNA and thereby blocking proliferation. Mercaptopurine
is classified as a thiopurine and anti-metabolite.
Cytidine
Cytarabine
Cryptotheca crypta, the sponge where cytarabine was discovered
Cytarabine: Used to treat leukemias and lymphomas. Also
known as cytosine arabinoside. This drug has a cytosine nucleobase, but instead
of being attached to a deoxyribose (as it would in DNA), the cytosine is
attached to a ribose sugar. This compound was originally discovered in some
species of sponges, so maybe that can appease the anti-drug pro-natural cure
crazies out there. Cytarabine functions in multiple ways. Cytarabine can be
incorporated into DNA during cell proliferation, but once it is inserted, a DNA
damage response is initiated in the cell, and the cell should kill itself.
Cytarabine also interferes with enzymes responsible for making DNA and RNA,
also screwing up cell function. Cytarabine is classified as an anti-metabolite,
as well as a nucleoside analog.
Cyclophosphamide: Used to treat many cancers, including both leukemias and solid tumors. It is classified as an alkylating agent (adds a carbon containing structure to the bases in DNA) and nitrogen mustard (has a nitrogen with carbon “arms” that terminate in chlorine atoms (Cl)). Mustard gas (as pictured above) was a chemical weapon used in WWI and WWII, which had a scent similar to mustard plants, was yellow-brown in color, and caused severe burns and depleted white blood cells in people who came into contact with it. Wonderful how humans have treated other humans over the millennia… The white blood cell depletion was considered pretty interesting and the sulfur group was replaced with a nitrogen to make it less caustic and turned into a drug to combat lymphoma in 1942. Nitrogen mustards function by attaching their carbon “arms” to guanines in DNA and this causes neighboring guanines to chemically “stick together.” Think of the molecule as having two arms and one arm grabs one guanine and the other grabs another if it is close by, in a death hug. This leads to major DNA damage and triggers cell death. Cyclophosphamide is the pro-drug version and becomes activated by oxidative enzymes once it enters cells to create phosphoramide mustard. Creating a pro-drug, helps to increase drug stability and can reduce the ability of the drug to function in non-target cells. The remainder of the ring that gets removed is known as acrolein. Acrolein can be pretty toxic to the bladder, so we have to make sure Lochlan stays super hydrated, particularly right after he gets dosed with this drug.
Folic acid
Methotrexate
Methotrexate: This is a drug used in the first month of
treatment. It is used for several cancers including leukemias and solid tumors.
Because it is an immunosuppressant, methotrexate is also used to treat
autoimmune diseases. It is an anti-metabolite that mimics folic acid and
therefore screws up chemical reactions that require folic acid, most notably
the formation of nucleobases, which are required for DNA. This was one of the
first drugs used to treat leukemia. Lochlan only receives this in his spinal
fluid and it is meant to prevent leukemia cells from getting established there.
So far all of Lochlan’s spinal fluid analyses have come back negative for
leukemia.
Vincristine
Periwinkle
Vincristine: This is a drug used in the first month of
treatment. Vincristine is derived from the periwinkle plant. This molecule is
obviously very complex, so much of its historical use involved deriving it
directly from the plant, which should please the naturalists out there.
However, the yield from periwinkles is incredibly low (1 ton of leaves = 1 oz
of drug). Current methods involve a combination of isolation of natural
intermediates and chemical synthesis. Unlike every other drug I’ve listed,
vincristine does not have a direct influence on DNA synthesis. Vincristine
functions by binding a protein known as tubulin. Tubulin is involved in
grabbing newly formed chromosomes and pulling them into separate cells during
cell division. When vincristine binds tubulin, it prevents this process, cells
fail to properly separate chromosomes, and the cells fail cell division. A major
side effect of this drug is extreme constipation. If you’ve been following
Lochlan’s journey, you’ll be familiar with this negative effect. However, he
won’t be receiving this drug every week, so hopefully the constipation isn’t as
big of a problem as it was in the first month.
Asparaginase: Asparaginase is a protein that was originally
discovered in bacteria (commonly produced from e.coli the main poop bacteria
that always finds its way into lettuce) and is an enzyme that breaks down the
amino acid asparagine to produce another amino acid aspartic acid. All human
proteins are made from 20 standard amino acids in a particular combination,
depending upon the sequence dictated by that protein’s gene. Usually a protein
contains nearly all of the different types of amino acids. So if a particular
amino acid is completely unavailable, then there’s going to be massive problems
in synthesizing proteins, and cells are going to start dying. In human biology
9 of the 20 amino acids are considered “essential” which means our cells cannot
make these amino acids from scratch and have to obtain them from our diet: histidine,
isoleucine, leucine, lysine, methionine, phenylalanine, threonine, tryptophan,
and valine. The remaining 11 amino acids are considered “non-essential” because
some or all of the cells within our body can make them from other molecules in
our bodies: alanine, arginine, asparagine, aspartic
acid, cysteine, glutamic
acid, glutamine, glycine, proline, serine, and tyrosine. So
if L-asparaginase breaks down asparagine to aspartic acid, both of which are
non-essential amino acids, couldn’t the leukemia cells just make more
asparagine? That’s the catch. MOST cells in the body can convert aspartic acid
back to asparagine. However, because blood cells (including leukemias) are used
to being exposed to high levels of asparagine in the blood stream from our
diet, they do not need to express the enzyme necessary to make asparagine. So
L-asparaginase is really effective at starving leukemia cells of asparagine, while
the vast majority of cells throughout the rest of the body could care less
because they’ll just continue making their own. This drug has a special
modification to it that greatly extends the amount of time it stays in
circulation (weeks) so it doesn’t need to be given frequently and can continue
to starve the cancer cells until they die a miserable death. However, the
biggest risk with this drug is that our immune systems are keen on detecting
and building a resistance to foreign proteins. So there is always the chance
that Locke’s body will begin to recognize the enzyme as foreign and produce
antibodies to destroy it. Or he could have an allergic response to the protein,
necessitating that he be under close surveillance during the first few hours of
receiving this drug.
Well that’s the update for now. Hopefully we will maintain
this current level of abnormalcy. Also awesome news… We received several offers
from some very generous and wonderful people who wanted to buy Lochlan one of
the MINI pedal go-karts that he fell in love with at the children’s hospital.
While people were putting in their offers, Becca’s former co-workers/friends
from Dorr Vet clinic all chipped in and ordered one for Lochlan and one for
Torren! Thank you so much! However, apparently the go-karts were supposed to be
a surprise and I must have missed or ignored the memo. Both seem likely. I must
have been too excited to listen or think about surprises.
Torren’s silly straw bouquet
Lochlan’s silly straw bouquet was more modest
Swinging!
Enjoying the sand box
Having a conversation with Torren
Everyone in our house is expected to love each other maximally
Don’t forget, the T-shirt campaign is back for a second round. If you still want a shirt and forgot to get one during the first time around, you have a few days left to order one. They’re super comfortable. Kid sizes are in the darker orange.
As a reminder: if you’re interested in donating to Lochlan’s
medical fund (we hit the goal, but I imagine the bills will rack up even higher
over the years), please check out his GoFundMe link below. Thank you to
everyone who has contributed to the fund and/or has given support to our family
in other ways. We are grateful for all of it.
The Lion-Heart's War on Leukemia 