Things have been
moving right along since Belle’s last chemo treatment. We were able to get back up to the mountains
for some skiing during the recent blizzard, last time we went was the weekend
before we found out about her brain tumor.
Belle was concerned that she would get headaches but I reassured her
that would not be the case…Michael, Isabelle and I had a great day of skiing up
in Breck. The drive home was as
enjoyable as it took us 5 hours to get home!
So needless to say the kids hated the drive part of the two day trip but
they both loved the skiing. Can’t wait
to get back to there soon!
Sarah did
not join us that weekend since she completed her last reconstructive surgery
and also corrected a small hernia that she had on Jan. 29th. So mom got to stay home and rest that weekend. It’s good to know that Sarah is done with her
process and it’s amazing that it’s been about 1 year since her diagnosis. Time certainly does fly! She did great with her surgery and is already
back in OTF ready to get back into shape!
Belle has
been managing really well with the smaller chemo days (2nd and 3rd
Fridays of the regiment). It’s the 1st
Friday of the cycle when she is getting the double dose that seems to knock her
down and make her very tired and feeling icky.
This past Friday was a big chemo day (1st of this next cycle)
so we were cautiously optimistic about what he weekend would be like plus we
had the Broncos playing in the Super Bowl so we wanted everyone to be able to
enjoy that game with us! Fortunately we were
able to have a SB party at our house just in case she was tired and wanted to
rest! May I just break for a moment and
say how freaking awesome that game was and how great it is to have the Broncos
be Super Bowl Champions again! Anyways
back to Belle….she did well Friday night but by mid-day on Saturday she was presenting
with a slight fever about 100.6 which when on chemo is something to be
concerned about. Essentially a temp of
100 to 100.9 two times in hour requires blood draws to make sure the counts are
ok. By about 3:30 on Saturday the temp
was up around 101.3 sooooo yeah time to go to the hospital! Belle and I ventured over to Children’s south
and they took great care of her and did a great job accessing her port…that’s always
a concern! Long story short we spent about
2 hours there and the CBC came back with her counts “normal”…..well normal for
someone taking chemo. So they said she
probably just has a small virus and just to watch her to make sure she doesn’t
take a turn for the worse. So that was
our first post chemo hospital visit…and hopefully our last!
She started
to feel a little better by the time Sunday rolled around and was ecstatic to
see her friends. She was able to get back
to school on Tuesday. She also had her
last PT session and they said he is doing great…only a couple small things to
work on otherwise they want to see her in a month to check on her
progress. One more thing checked off our
list of things to overcome…..Way to go Belle!
The CBD oils
and THC tinctures are going well and she is at the recommended daily dose! It took some time to get there and to figure
out how to manage the THC dosage throughout the day such that she does not experience
any psychotropic effects. Funny story….after
giving her night dose a little earlier than we normally do before bed…she ate
her entire bowl of butter noodles from Noodles & Company, a granola bar,
fruit chews, some cheese blocks and more than likely a couple other things…..point
being her appetite certainly isn’t gone!
HAHA….I can say that the only time that she really isn’t in the mood to
eat is about the 3 days following the 1st chemo cycle. Otherwise she’s always hungry! Many people ask if we think the oils are
working……truth being it’s hard to say in regards to the tumor….is she doing well…YES!
So in that regard I think it’s helping with the side effects of the chemo and making
her feel better. We will know after her
next MRI beginning of March if it’s doing its job……I’m very optimistic and encouraged
that we will get good news! Too many
people in the field of study and articles out there point to how successful
this oil treatment can be for gliomas…..so yeah I think it’s working and doing
what it needs to! If you saw her and
didn’t know anything about her condition you would never guess she has a brain
tumor! I can tell you that we have been
flying through the oils so the generous donations from so many people out there
are helping us tremendously with those current costs and the costs that will
forever be with us! Realm of Caring that
helps with treatment doses and guidance for patients will be advising a maintenance
dose of CBD’s most likely for the duration of her life. So this will be a lifelong comment to giving
Belle CBD oils…most likely we will be able to stop the THC once the tumor is
completely gone! That’s my thinking at
least. We are currently using Charlotte’s
Web (The Stanley Bros out of Boulder) and The Remedy (out of Fort Collins)….best
to go with local grown and high quality!
Way to go Colorado….
Things are
good and we are just continuing to take one day at a time….we understand that
we have a long road ahead of us but we know that we are taking all the
necessary steps and precautions to get Belle healthy again! She will just like her mother will kick
cancer’s ass! We are looking forward to
the fundraising event at BCCF which should be a great time so I still want to
encourage all of you reading this to please come out and support belle and give
her a high-five and give some words of encouragement! I don’t think I will be able to get her there
by the 7 am WOD time but we will get her there as early in the morning as
possible! Her is the flyer again just as
a reminder.
The meal
training is going well and we greatly look forward to that on those “chemo
Fridays”….so thank you to Brooke Kelsey, Sarah Gates, and Jen Baker for providing
us with such great meals so far! The
support continues to flow in from so many different areas which is so amazing
and helpful! We would not have the strength
we do without each and every one of you out there helping us along the
way. I do want to take a minute and
personally thank my cousin Tracie for helping us around the house and allowing us
to just focus on Belle on those Fridays.
I also want to thank everyone that has taken time to bring by a special gift
for Belle….those great gift baskets, blankets, stuffed animals, toys, coloring
books, dolls, etc…..there are too many to name but I wanted to at least recognize
all of you and how much that means to us and Belle! The kid has definitely been spoiled
lately!!! I have trying to stay on top
of all my GoFundMe “thank you” but I have fallen a little behind recently….I
know I will get to all of them in time!
But those donation dollars go along way with her medical care in the cost
of copays, medications (oils not covered by insurance or the use of a HSA card),
imaging costs, etc! We know that this
year will be full of expenses and there will be more to coming as the years go
on! Just know that those donations are going
to help us in a tremendous way! So thank
you from the bottom of our hearts for your kindness and generosity! Belle is a fighter and she will continue
fight every day! Amen….
Thank you,
Mac
God Bless!
