Crawl for the Cause
RMC Awareness Event
March 21st, 2015
03/22/2015
Kyle's week started out on a low and ended on a high! Kyle headed out for treatment Tuesday morning and reluctantly found out he had bronchitis and was unable to get any treatment from his clinic in Illinois. He did get some great Vitamin C, Zinc and B vitamins via IV while he was there to help his overall health. We were hoping to get his full three weeks in before the baby is born, but that wont be the case because Baby Morgan #2 is due in one week! We are so excited to add an addition to our family. Most people would think this is more stress added to our already hectic lives, but a new baby is far from stress. Kyle has a extreme love for new little babies and can’t wait to enjoy every moment.
The past three days Kyle has been feeling awesome. He has been up running errand and feels like his energy level is coming back! This has been amazing to watch… feels like the real Kyle we all knew before is back. You can see the life in his face and that he is all smiles. For everyone that was at Kyle’s Fundraising Event, Crawl for the Cause, was able to experience this! We are so thankful for the people who continue to bless our lives. J God is showing his face upon Kyle…he can feel it, we can see it!
03/15/2015
It’s been about 2 weeks since our last update. Honestly, I have felt like it’s just been on thing after another these days. Every time I’m feeling ready to post an update another thing stands in the way. We have attended a close friend’s funeral, been notified of another young man’s life lost to RMC, Alivia’s trip to the ER, Kyle’s up and downs from treatment, and the soon to be arrival of our baby. I’m 2 weeks away from my due date and feeling exhausted and ready to have this baby!
Kyle finished his radiation for all 5 spots after a very tiring week a half. The treatments had to be extended due to the pain of Kyle laying on the table. It was a very rough week for him during radiation. He basically remembers going in for his first radiation appointment on Monday and woke up and it was Sunday. The fatigue, pain, and drowsiness just took over.
This was Kyle’s first week down to the Alternative Chemo Clinic in IL. The first day (Tuesday) was a bomb! Kyle’s treatment went a little hectic receiving the four chemos. On a much scarier note, our daughter suffered second degree burns on her foot from a hot water accident while at the clinic. It was a total accident and no one is to blame, but our hearts just sank to see her in this amount of pain. This was our first traumatic experience as parents and it was very difficult. The pain from the burn was so excruciating for her so passed out multiple times. No worries, she’s holding up like a rockstar and will have no lasting affects on her growing skin.
The second day (Thursday) went very smoothly and easy for Kyle. He did great :) Our biggest struggle right now is for Kyle to gain weight. After a brutal radiation week including lots of pain meds and the affects of radiation killing his appetite and making him feel extremely nauseous, he has lost even more weight. We pray for his body to sustain itself and be provided the right nutrients for him to feel able and for his body to gain the needed weight.
Kyle does have reduced pain from the radiation treatments that will allow him to sleep and rest his body! I’m so thankful! You can actually see the pain being removed from his face and increased activity level. Don’t get me wrong…activity level meaning, walking around and bending over! Now that’s an improvement :)
Treatment Schedule for March:
3 Weeks Total (2x a week to alternative chemo clinic in IL)
3 Weeks Total (2x a week to alternative chemo clinic in IL)
03/01/2015
This past week has been a mix of emotions for us as a family,
how to mentally prepare and process for what the next steps will look like for
Kyle. We have received feedback from both our oncologist at the UW
and the clinic in Illinois that Kyle’s scans weren’t as positive as we thought
originally. We met with our Oncologist on Monday and he let us know that
the scans were “low resolution” meaning not accurate as a scan would be in the
Midwest. His explained how we are privileged here in the Midwest to have
some of the best technology when it comes to scan machines verse other
hospitals throughout the US. He understood how discouraging this
was for us coming back. So much time, patience and money spent to feel
this blowback was very hard to process. We left in silence at a loss of
words on how to describe such feeling.
The oncologist doesn’t have many options for Kyle, the standard
chemo will be too hard for Kyle’s body to tolerate and would put him at
receiving transfusions every week. He will be presenting Kyle’s case to
other teams of doctors for opinions…for a second time around. The only
other option is there may be a general clinical trial he may qualify for in 4-5
months, which is far away and doesn’t seem very promising. This option
isn’t off the table, but would be a huge decision for Kyle to make when the
time comes. Kyle’s cancer is aggressive and grows at a rapid pace.
Tuesday, we had a consult with a different clinic in Illinois
and they also agreed that the cancer has progressed just by the amount of pain
Kyle is in. Increased pain= increased cancer. This Doctor also
explained how kidney cancer in general is hard to treat due to the kidneys
wanting to rebuild and also remove waste from the body…in other terms remove
the chemo from the body making it not effective. He informed us on
how they can manipulate different treatments for Kyle knowing what has already
not worked. He can’t promise the world or know this will be the answer
for Kyle, but options are limited and time is of the essence.
It’s always as feeling like we have to pick the best of the
worst. It was refreshing to hear a professional talk in this way and just
laying down the facts, but also was very difficult to take in so much
information within 48 hours along with a long drive there and back.
This Week:
Kyle will be getting radiation everyday this week on multiple
areas. They will be radiating both shoulders, both hips and lower back to
help restrict and reduce the pain. Back in June 2014, Kyle received
radiation on his brain and rib area. That went very well and he had great
response, we are hoping for the same response this time.
Later This Month:
Kyle will start treatment in Illinois the second week in
March. He will be going down twice a week for 3 weeks. After this,
he will receive scans right after the three weeks to see if this treatment is
going to work for him. If this treatment will work, Kyle would only have
to go down for treatment once a week. He would continue this a total of
12 weeks. The doctor wants to be proactive about what the results will
say and continue to monitor his pain. Treatment for this clinic will be
approx.. $1500 per visit paid out of pocket at time of service. Totaling
around $10,000 for the first three weeks.
Financial Update:
We have exhausted above and beyond our fundraising money.
We have spent any money we did have for treatment along with putting the
majority onto our credit cards. We are downsizing and doing everything
possible for Kyle to continue battling this awful disease which still not known
by many.
Mexico Treatment (Hotel + Hospital Scan): approx. $34-35,000
Flights: $2,000
TOTAL: $35-36,000
Supplements/ Pain Management/ Out of Pocket Bills
(May 2014 to present): ≈ $ 10,000
Upcoming Fundraisers/Ways to Support:
-Celebratory Yoga Flow
Thursday March, 12th 7:30pm-9:00pm
Studio Melt
RSVP:
https://www.eventbrite.com/e/celebratory-yoga-flow-with-cari-sims-and-live-dj-cdotsims-tickets-15776587197
-Crawl for a Cause
Saturday March, 21st @ 3pm
Starting at Craftsman Table & Tap
Find Out More Here: https://www.facebook.com/events/1538546276418319
02/21/2015
We have been home about a week now and are finally settling in
back at home. It's been a rough transition, finding our new normal and
figuring out even what day of the week it was! Our first day back home we
found out our Minivan had been declared totaled. Some of you may know,
but the day before we left for Mexico we got into an accident but we didn't
want to stress everyone out because there was already lots going on. We
are thankful that no one, ourselves or the other driver, was hurt in the
accident. This just made for another challenge for our return home!
On a positive note, Baby Morgan #2 is due in 37 days and we are so
excited to be blessed with another gift from God :)
I have been continuing to do as much of Kyle's treatment from
Mexico as we can until we reach the next steps.
This means juicing for Kyle every other day, routine coffee
enemas for detoxification, and giving Kyle 4 shots a week into his arm.
These were the same shots he was receiving from him nurse in Mexico to
help keep his body strong and fighting off this horrible disease. It
seems so easy to just be like "ooh...shots..no big deal." For those
who know me....I'm scared of needles and blood. Especially to give a shot
to someone whom you deeply care about, love and who you hate to see in pain.
These aren't your typical one and done type of shots. They are
extremely painful, leaving welts and bumps on your arms along with feeling
completely awful after. These shots trigger the immune response in your body
causing flu like symptoms, chills, fever and targeted pain to cancer areas in
the body. Unfortunately, this is the response you do want because
this means your body is working.
We are looking forward to our consultation to a clinic in IL to
hopefully continue this treatment or a treatment similar to what Kyle was
receiving in Mexico. We are praying that the doctor will be open to
hearing from our experiences and be willing to collaborate the best of both
worlds into a treatment plan for Kyle. This is are only hope for Kyle to
receive a similar treatment...clinics in the US that will even
"practice" this form of treatment are few and far between. At
this consultation, we will be learning more costs, treatment options
available/time line (for how long and how many days per week).
In
the meantime, please continue to pray for healing, mental clarity and
reduced pain within Kyle's body.
02/12/2015
We finally arrived back home in Wisconsin this afternoon.
I wanted to write an update sooner, but coming over the border back to the
states was a little rough physically and emotionally.
We left Mexico Tuesday morning crossing over the border and
stayed at my sister and brother in law’s home in San Diego until we flew out
this morning. The border crossing was fine, but a rough start to the
morning. Kyle had chemo treatment the day before and the nausea was
really hitting hit hard Tuesday morning. I finally get us packed and
Alivia got carsick on the way through the border in the driver’s car. I
bet you could only imagine this. Good thing my sister was there when we
arrived because this was the tipping point for myself.
It was nice to spend the last day and a half in San Diego
visiting Vanessa and Alex since we don’t get to see them much living far away
in Wisconsin. We also did a special photo session of maternity/family
photo to capture the memories of being away especially with the little one on
the way. Thank you Rachel for being able to do this for our family.
We are so happppppy to be home! Not that we take things
for granted, but you realize how blessed you are to have a warm home to come
back to. Simple things like water and your own bed are ranking high on my
list :) Even just breathing the fresh Wisconsin air is amazing! I'm
so so so happy to be home and more importantly, that we made it safely.
We are hoping to launch a fundraising event coming up in March
so Kyle stays motivated and for him to financially be able continue his
treatment starting March 1st. March is also Kidney Cancer Awareness Month
and we would love to raise awareness as much as possible!
One thing I have learned throughout this journey to keep the
drive alive. You can't do it alone..hearing the non-stop support and
encouragement of others to keep going is a powerful thing. Being able to
have a fundraiser keeps the fight going…pushing, praying and holding on for the
ride! Kyle has asked that people can pray for him to not loose motivation
and focus when returning home. It’s much easier to be distracted as far as
diet goes when you are in your comfort zone. Kyle likes to eat, but his
diet is very strict and restricted. This is to help his body heal and keep
inflammation down. Kyle’s pain is still strong and moves to different
parts of his body depending on the day or even hour. Praying for healing.
...The
Lord gives and the Lord takes away...He closes a door and opens a window...He
will cause me to walk in His statutes...and lay me down in green pastures
…leads me beside quiet waters...He will make me as a tree, planted by streams
of water...
02/03/2015
The Update Everyone (including myself) has Been Waiting for!
Kyle's scan came back positive! Kyle's PET/CT shows
significant reduction in all cancer tumor areas throughout Kyle's body.
Kyle areas of cancer include: both shoulders, upper and lower spine,
pelvic bones, both kidneys, lung, and liver.
The newest spots that were found both on his liver and lung from
November, 2014 are no longer visible! This is amazing news to find out in
just a mere 6 weeks.
I would love to share these scans with you because they are mind
blowing, but I will have to refrain for Kyle's privacy. The feeling of
being put under a microscope by doctors and checkups for the last 10 months..I
could only imagine!
Our Plan for Continuing Treatment Back Home...
We still have a long road ahead of us. There is still a
lot of work in order to execute this plan back home, but I'm working day and
night to continue the fight for Kyle. As many of you know, this treatment
plan is not recognized in the U.S. hence the reason we are out of the country.
I have gained so much knowledge here from the doctors and other patients
to use back home. We have found there are only a few professionals found
in small databases throughout the states to preform a similar protocol.
Much
of this treatment plan will not be coverage by insurance. We are working
with The Center of Patient Partnership to find an insurance company that
will hopefully recognize this treatment for Kyle. If that would happen
this would help keep the costs around 10,000 after hitting a deductible.
The Center of Patient Partnerships have gone above and beyond to help us
with our needs, especially on the insurance side. We are so grateful to
have them as a resource!
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