MRI Update 6/25/16
It’s been
awhile since we have provided any updates on Belle simply because we have just
been staying the course and have not had much new information to share. Since our last Blog update we have had the opportunity
to finally take our first family vacation in more than 2 years. We did have a couple snafu’s in process of
going on vacation but nothing that the McAllisters couldn’t handle. We were so fortunate to travel to Watercolor,
Florida….absolute paradise by the way.
The plan was to leave early morning on Monday May 16th and
stay for 10 days. Sunday before planning
to leave Belle woke up with what appeared to be pinkeye so we headed over to
urgent care to get some drops to take of the eye infection. When we arrived they took her temperature and
informed me that she had a temp of 102.3…..oh great!! I had no idea…I simply thought she had a
local infection but there was much more going on. She was coming off her last chemo of her 5th
cycle and normally there are no complications but of course we weren’t that
lucky! We rushed over to Children’s
Hospital south to figure out what was going on and see what her counts were
at. In the game of chemo….a temp over
101 and a ANC count lower than 500 typically means a guaranteed stay in the hospital
for 2 day…..so needless to say that is the direction I thought things were
going. We got her counts back after they
accessed her port and they were at 480.
Of course Sarah and started wondering if this vacation was going to
happen at all….She was not very happy!!
First thing first…get Belle better!
We spent about 8 hours at Children’s where they gave her antibiotics and
an immune booster shot (similar to Neulasta).
They said we need to see her in the morning and check her counts….sorry
to say but you cannot go on that airplane in the morning! We did get a little lucky that they didn’t admit
her to the hospital for a mandatory 2 days of antibiotics and other
medications. Yeah that sucked to hear….I
told Sarah that “no matter what Michael, her and my mother will be on that
plane tomorrow to Florida, you guys deserve this trip!!!”….Belle and I will be
there as soon as we can get down there! Well
off to Florida they went and Isabelle and I headed to Children’s hospital Monday
morning to see where her count were at…..great news they jumped to 980. They said we are getting you on a plane to
Florida no matter what it takes. The
staff at Children’s Hospital is truly amazing!
Belle got one more round of IV antibiotics and another immune booster shot! I told Belle that we would be heading to
Florida the next morning 1 day later than planned. Everything ended up working out other than
the additional cost by United Airlines to change flights so that was
disappointing. In hindsight…things
happen for a reason and God is watching over us! Had we gone to Florida and her infection/temperature
presented itself down there……well that would been a lot more difficult to deal
with given our location and having to deal with staff and facilities that we
are not familiar with. I’m sure she
would have been in great hands in Florida had that situation had taken place
but it was nice to be here at home and working to get her well here in Colorado.
Florida was
so much fun….beach, pools, great food, and relaxation…..we had 10 days to just enjoy
life and not constantly think about fighting cancer!! I miss the days before we started this
journey with Sarah and now Belle….days when our biggest concerns were petty in comparison. I wish and pray that those days come back
again for us when we do not have to consistently concern ourselves with
cancer. It’s very draining emotionally
and physically….all we can do is do our best to navigate each day…appreciate the
time that we have with another and not miss the good moments that life gives
us! There is certainly something to be
learned and appreciated as we go through these challenging times….
So overall Florida
was great and the time we got to spend with each other will always be
memorable!
We have not
had any setbacks since her minor hospitalization leading up to Florida. She had her big chemo session for 7th
chemo cycle yesterday 6/24/16…..Michael’s 11th birthday! Happy birthday big guy! We also had her first MRI since March….I can
tell you that going into these MRI’s whether it’s with Sarah or Isabelle…its
very nerve racking…hard to explain because you have emotions of optimism and
concern all at once! We had her MRI
first before chemo….the MRI takes about 45 minutes or so…and then up to chemo
for about 4-5 hours….yesterday was a long day!
We got the MRI results back and they informed us that the tumor has not
grown but it has not shrunk….what does that mean some of you may ask? Sarah and I were very much looking to see it
shrink as anyone would. We were
disappointed to say the least….I think when you see this tumor in the MRI
images and your hope and wish is to see it start to go away…in our mind that
means positive progress. Well I guess in
the world of fighting cancer…shrinkage/stabilization are one in the same! The oncologist would have liked to see some
shrinkage but was happy to see that it was still stable and no growth was
taking place. I was even walking down
the infusion area hallway and one of the main nurses came up to me and said
congrats!! I was a little confused at the
time because my mind was still stuck on this concept that we need to see
shrinkage to support that things are working.
Honestly I would have to say that Sarah and I struggled yesterday with
the MRI results…we wanted to see shrinkage…so much wanted to see that the tumor
was starting to go away!! It took some
time and reflection for us to realize that stabilizing the tumor and no new
growth is a blessing and that we should be grateful that it’s not growing! So after some tears and frustration yesterday…..we
determined that yesterday was a GREAT day and stabilizing the tumor is great
new We will continue to fight for Belle
and she will continue to fight as well!
We will take what the Lord grants us and pray that he gives us the strength
to get through each day! I pray that he
will bare our burdens and comfort us when we need him the most! The nest MRI will be in 3 months…..no changes
to her chemo regiment at this time! No
need to take more aggressive steps!
Sarah and I
have discussed making some changes to our nutritional dietary habits as a
family since those brain tumors just love glucose. So our next step is to approach Children’s Hospital
next week to see if they can provide us with nutritional support for a more
Ketogenic diet for ALL of us not just Belle.
This is a team effort and we can’t expect just Belle to make these sacrifices! We are also planning on modifying her CBD/THC
oil regiment…from further research it has come to my attention that other
people/children fighting cancer and eliminated cancer with the aid of cannabis
oils were taking 5-6 times more than Belle is currently taking…..so needless to
say we aren’t giving her enough! As it
is with chemo and other medications they say “hit it hard and hit it fast” so I
think we need to take the same approach with this alternative options that we
are using in addition to the chemo. If
anyone has any insight to dosing regiments that would be great….we are
certainly in uncharted territory here!
We are going to push it to the max over the next 3 months both in our
dietary habits and oils to see if we can get that shrinkage that Sarah and I
are so desperately wanting!
Other than
that I will be taking Michael and his buddies to the Rockies game to celebrate his
birthday…no need to let cancer stand in our way of celebrating his special day
or enjoying LIFE! Belle is doing great….truly
she is doing so well……physically and mentally she is completely “normal”….well
as normal as any other little 7 year old princess can be! HaHa
Until next
time…thank you to everyone out there continuing to support and pray for us…those
that are always keeping us positive and staying the course! We appreciate each and every one of you!
God Bless,
Mac and
Family
