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, 12^th 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, 21^st @ 3pm

Starting at Craftsman Table & Tap

Find Out More Here: https://www.facebook.com/events/1538546276418319

Get Signed Up: https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=6FBRD7UPVZBT2

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! 

01/23/2015

This week has been a bit disappointing for us.  Kyle will not be receiving chemo today.  Everyday is so crucial because the main reason we are down here is for treatment.  Kyle's whole body is out of hack and beyond sensitive from being blasted by aggressive chemo for months on end back home.  He is only getting about 20% from the total amount of chemo he was getting.  Just this small amount brings his vitals down an extreme amount.  

The Doctors here are going to try and give him more stimulates this weekend for both the red and white blood counts and check again on Monday.  They are thinking that he will need another transfusion soon.  I'm not sure if this means they will push his scans out another week.  

We are learning about alternative pain management while we are here using RS Oil, Castor Oil Packs, DSMO, Coffee Enemas and a long acting pain pill that is not a narcotic.  

Kyle is still taking oxycontin from the states to keep things under control.  He is still in a good amount of pain, but is trying to take as little narcotics as possible.