Isabelle’s Journey
Things began on 12/10/15 and Isabelle was complaining of
headaches. Initially we
thought she was dealing with a sinus infection or something else that was just causing
her to feel a little under the weather.
She seemed to feel a little better and then the headaches would start
back up. She was in good spirits but the
headaches were certainly taking a toll because she would get tired so she was sleeping
more than normal. We went skiing on
Sunday the 14th, this was the first time that the kids have ever
skied. It was great day and the kids had
a blast. Isabelle did start to complain
of the headache on the way home so we thought it was time to take her in to see
what was going on. We went to Children’s
Hospital (south campus) to get her checked out.
She was not presenting with any sort of infection (no flu, no sinus
infection, no fever or strep), they concluded that she probably has a viral
infection so obviously my mind started to wonder what was going on, to be
honest I did think there was a greater concern over just a simple viral
infection. We had a brain MRI planned
for the following Thursday as a precaution because we have recently learned
that Isabelle does have a genetic mutation that warrants close observations. So we did what we could to keep her headaches
at bay until we could get more answers from the brain MRI. We nervously waited over the next few days
for the MRI to tell us more as to what was causing the headaches. Thursday was upon us and we started the day just
like every other day. Struggling to get the
kids out of bed and out the door! We
went to Children’s Hospital for the brain MRI and ultrasounds. The ultrasounds went well and nothing of
concern there. We prepared for the brain
MRI and Isabelle decided to go with a pink lighting for the MRI room, that
little girl loves pink…no surprise there!
Things were going as planned and toward the end of the imaging Sarah
noticed that the technician was on the phone with someone. This obviously prompted a little worry from
Sarah given her recent treatment for breast cancer…..motherly instinct that something
concerning was going on! They promptly
escorted Sarah and Isabelle to another waiting room and indicated that a
radiologist needed to look at the image.
That is not good! Sarah quickly
called me since I was in the waiting room with Michael and said I needed to get
back there ASAP! So I nearly kicked down
the door trying to get back there, once I made it to Sarah the radiologist informed
me that my baby girl had a tumor in her mid-brain. Instantly I couldn’t believe we were going
through this again and now with my little girl.
I tried to maintain my composure and allow the radiologist to explain
what was going on and how this tumor was impacting the flow of her cerebral
fluid and blocking the fluid to drain into the 4th ventricle. I felt like I was punched in the stomach yet
again…..I was angry, upset, sad, frustrated all at the same time! Start asking why Lord are we going through
this yet again??
The doctor could not say with absolute certainty that the tumor
was a malignancy or benign so a biopsy would have to be performed to better understand
what we are dealing with and additionally they would have to deal with the blockage. So the doctors would have to perform an Endoscopic Third Ventriculostomy (ETV) which in
laymen’s terms is a procedure to allow the cerebral fluid to properly drain
into the 4th ventricle. This
would relieve the pressure buildup (hydrocephalus) that was taking place in her brain. The doctor said it’s a pretty standard
procedure and if successful Isabelle would not need shunt. So we were optimistic that this would address
the tumor blocking the canal. She would
also need a biopsy of the tumor so that added some complexity due to location
of the tumor. They would need to access
that through the back right side of her head going through her cerebellum. Now let me tell you when neurosurgeon explain
this stuff everything seems simple and routine.
They have an amazing talent of calming your concerns…..so bless them for
this ability to take brain surgery and make it seem normal. These doctors are truly amazing
surgeons. The plan was the needle biopsy
and (ETV) and possibly one or two night stay in the hospital. Surgery was planned for Friday at 5:30pm so we
nervously waited in the hospital for surgery time. Isabelle as in good spirits and enjoying her
time in the hospital with the attention she was getting but not happy that
should couldn’t eat all day….yeah that kind of pissed her off. Let me tell you what they are many people out
there that love us and love Isabelle….so many calls, gifts, stuffed animals,
blankets, etc came flooding our way! So
the surgery time came and it was planned for 3 in half hours give or take. I can tell you by this point Sarah and I were
completely depleted emotionally, physically, and spiritually. In looking back….I wish that I was stronger
when they rolled her back for surgery but I just broke down and cried from all
the heartache and pain I was feeling! I
was so scared for my daughter and that she was having to go through this…..as a
parent you want to protect your children from anything bad that can happen! I truly felt completely powerless and for the
first time there was nothing I could do to protect her or keep her safe….that
hurt more than I can even express! She
was in God’s hands and all I could do is keep my faith in him and his
plan! Friday was a long night as the surgery
started around 5pm and we didn’t get to see her until about 11pm. I want to personally thank my mother Theresa,
Sarah’s mom Barbara, Sarah’s sister Britt, my aunt and uncle Sandy and Rich,
our friends Brooke, Franny, Jim, and Kathy for being there for us during Belle’s
surgery….we were not alone at all in this process!
I think I was creating a path in the carpet from all of my pacing in the waiting
room. Everything went well during
surgery just a little longer than planned.
She did end up getting some bleeding at the biopsy site which can be
problematic and also some slight paralysis of her left side of her face and her
left arm so they did a quick MRI which they had to resedate her to take. I was kind of freaking out at this point
wondering what was going on. The
neurosurgeon was relatively ok with the amount of blood and did think it
warranted any surgical intervention. He
said the paralysis should completely resolve soon. So we were happy that she did well and was
out of surgery. Everything seemed to be going
as planned…..one night in the hospital maybe two at the most….let the healing
begin so we can get Belle home! Well let
me tell you what not everything is easy or as we plan it! What was supposed to be a short stay turned
into 7 days….yes 7 days in the hospital filled with long nights and stressful
moments. The paralysis did completely
resolve which was a God sent…..she did experience extreme dizziness, extreme
facial swelling on the right side (completely closed her poor little eye), nausea,
headaches, and the inability to walk on her own without assistance. Not to drag out our hospital stay…..things
did improve a little each day with some setbacks during the process. The neurosurgeons said all of these things can
be expected for the surgeries that she received…..well let me tell you what I
don’t remember hearing any of those things possibly taking place. I think that they don’t want you to sleep at
night when you stay at the hospital between the twin “bed” aka fold out uncomfortable
couch they provide (mind you both Sarah and I were sharing that) and constant interruption
throughout the night like every 2 hours it was hopeless to get any sleep! Sarah and I were frustrated but rolling with
the punches. We just wanted Isabelle to
be well enough to be home for the holidays!
I want to take a moment and explain to those of you that have never been to
Children’s Hospital PICU….there are many sick kiddos there far worse off than
Belle and it gave light to our situation and we wouldn’t help but feel and pray
for those hurting far more than us. Life
is fragile and every day is a blessing!
Give thanks for your blessings every day and appreciate the important
things in life! Too often we focus on
the wishes and wants in our life rather than the small things that we should be
thankful for that we already have….lesson learned for me…I count my blessings
every day!
So back to Belle…she was improving and got the thumbs up to go home before
Christmas! We made it home by Wednesday
and our bed at home never felt so good! Isabelle’s
dizziness had resolved and the headaches were getting better (only needing
Motrin about every 8 hours). I guess
going through the cerebellum with a needle is quite easy but very disruptive to
brain function so it causes swelling and disrupts balance and other things so
it just takes a little with for things to reset if you may. It felt kind of like we had a newborn again as
we had to wait on her hand and foot since she was unable to walk on her own and
she did have difficulties feeding herself certain foods that required more hand
skills. But praise the Lord things were
improving and getting better every day and Christmas was great and we were so
happy to be home!
The only thing left lingering in our minds was the biopsy results and what the
plan was to address the tumor. We asked
the oncologist to wait until after the holidays to discuss the results so we
had an appointment for Monday the 28th to discuss that. I can tell you as each day neared I was more
nervous and sleep a little less. I was
praying constantly for God just give Sarah and I peace of mind and to continue
to trust in his plan…..sometimes we stand in the way of that….I’m continuing to
learn to let go and let God take the lead!
I’m a work in progress J Thank goodness God is patient!
So Monday came and we were hopefully but cautiously optimistic about the results. Something that I have learned since dealing
with Sarah and her journey with her breast cancer. Belle came with us so that the oncologist
could do an examination on her to see her progress since surgery. So the results were not completely what we
wanted (which was a benign tumor) but to be honest what we expected. Belle has a grade II Glioma Astrocytoma…which is best described
as a low grade cancerous tumor…..this certainly gives us hope of successful
treatment options.
So what’s the plan…..well its long one but we will fight every day and be
there to support Belle to get through this journey! She will require a full year of chemotherapy
for all of 2016. She will start this
process on January 4th…..with the surgical placement of an access
port in her chest. Given the sheer
volume of chemotherapy that she will receive doing this intravenously is not an
option so a port is the best option and with be less painful for her over the long
run. The port will be placed under the
skin so she will be able to go back to her swimming class…..yeah for
Belle! I just love watching her go to
swimming class she see that smile on her face! I take the time to really watch her and see
her joy…I often times see other parents sitting there on their phones texting
or looking at Facebook and missing what is right in front of them and not being
in the MOMENT! I share this small gift
with you other parents out there….don’t get caught up in the hustle and bustle of
life but rather just be in the moment with your kiddos whenever you can…..
She will start the chemo regiment on the 8th. The regiment will be three Fridays in row of
chemo and then one off and then start the cycle over for a full year. She will be receiving a fairly lite dose of chemo
if there is such one and as a result will most likely not lose her hair, it may
thin a little but it shouldn’t fall out which is good! As always with chemo there are some side
effects most commonly nausea and constipation but we will do our best with available
medications to combat those side effects.
We have not explained everything to Isabelle yet since I know that the initial
surgery was pretty traumatic for her so we just want to wait a little longer
before we go through all of this with her.
Otherwise she a strong and brave little girl and is taking this situation
with strides and still laughing and having fun during this winter break! I just want her to be a kid and not worry
about these things….allow mom and dad to worry about it!
So that’s where we are right now…..just taking one day at time! Still trying to heal from Sarah’s journey but
ready to start the next with Belle….
I know that God has plan even though I can’t see it right now….I have to
put my full faith and trust in him that he will care for our Belle! Life isn’t always easy or how we planned it…..I
have let go of the anger! That does me
no good and it doesn’t help my family! Instead I have replaced it with hope,
joy, thankfulness, and faith! I know with that we will get through this journey
too.
Michael is doing well and of course worried about his little sister. We are trying to maintain as much normalcy for him as possible. I know it was difficult to see his mother go through cancer treatment and now having to see his little sister do the same can be difficult to comprehend. I do want to thank Jen & Chris Woelkers, the Brian & Sally Wetterling, and Mike & Emy Ross for their help taking care of Michael when Sarah and I were at hospital caring for Belle. It was nice to know that he was in good in hands and being taken care of and being able to enjoy the winter break with his buddies.
Michael is doing well and of course worried about his little sister. We are trying to maintain as much normalcy for him as possible. I know it was difficult to see his mother go through cancer treatment and now having to see his little sister do the same can be difficult to comprehend. I do want to thank Jen & Chris Woelkers, the Brian & Sally Wetterling, and Mike & Emy Ross for their help taking care of Michael when Sarah and I were at hospital caring for Belle. It was nice to know that he was in good in hands and being taken care of and being able to enjoy the winter break with his buddies.
I want to thank everyone out there that is sending love, support, and
prayers our way! I can’t say enough
about your resilience to continue to help during these tough times! My mother
will be starting the meal calendar again for the next year to coincide with the
chemo Fridays so that we do not have to worry about a meal on those
evenings. We have been conflicted about the
GoFundMe account since so many of you have already donated toward Sarah’s
medical expenses. We are going to look
into any funding support that the Children’s Hospital Foundation can provide
but many of you have asked if you can donate toward her medical expenses so I
will attach the link to medical GoFundMe account if some of you do still want
to donate toward our families upcoming medical expenses. GoFundMe Link: https://www.gofundme.com/mcallister-family-medical-fund
Again I want to thank everyone for your continued support and help…it’s
going to be long 2016 but we know we will get through it! God bless you all and praise him in his
glory! We will continue to keep this
blog updated and let you know of her progress….please pray for her to continue
to heal and for the chemo to do its job and eliminate the tumor! As always if anyone out there is aware of new innovative treatments please let us know, its always good to know about other treatment options over chemotherapy to discuss with her oncologist!
Thank you,
Mac
