It's time for something new....

I have been trying to write this update for the last 3 weeks. Now so much time has passed it is hard to know where to start. I have put together several post, starting with where we are at with Kyle’s treatment, to add individually.

Kyle and the whole crew made the trip to Seattle for an MRI on May 14th. Kyle, again, did an amazing job of lying perfectly still for 25 minutes for the MRI. There is a telescope set up so he can look at me sitting across the room and I send him messages with our secret sign language. I am sure that the folks running the machine find it quite amusing as I make gestures to Kyle that only he understands.

After meeting with Dr. Olson we learned that Kyle’s brain bump is still growing, although slowly relative to most. Kyle’s dad and I decided, in conjunction with Dr. Olson, it was time to find a new way to try and keep the brain bump from getting any bigger. We headed back to Bellingham with heavy hearts and many things to research. But before we left, Dr. Olson, as usual, had a simple way of reminding us what is most important, he hugged each of us and said, "Go home and have fun with your boys."

While enjoying each day, Jocelyn and I worked with Dr. Olson to choose Kyle’s next course of treatment. We considered many options currently in clinical trial and some that aren't. The world of clinical trials is a maze of red tape and bureaucratic rules, which actually limit our choices. But after much deliberation and frustration we started Kyle on a “cocktail” of chemotherapy drugs. Each drug works on the tumor in a different way so our hope is using a combination will enable them to go after the tumor on three fronts at the same time inhibiting the tumor’s ability to work around the treatment. (For anyone interested in more specific information on his treatment, the trial number is ADVL0414.)

Kyle started his first course on Monday, June 2nd. His friend Campbell came with us to Children's for his first day of treatment, making the trip there and back a lot more fun. And I can't forget to share... Kyle is extremely proud he has learned to swallow pills! It sure makes things easier when we don’t have to find a way to mask the taste of one more thing that Kyle says tastes “disgusting!”

Kyle finished his first 5 days of chemo like a champ! He gets a couple weeks to rest before we start all over again...

A quick side note.... the Friday before starting the new chemo Kyle had another MRI. While we waited for the results he was able to see his friend, Mara Adams, who is 5 and has the same brain bump as Kyle. She was starting a new chemo protocol as well. Please keep Mara in your prayers with Kyle as each of them look for answers in something new.


Jill DeJong said...

Hi Kyle and Christin!

Thank you both for the beautiful forget-me-nots. What a perfect gift, as I will never forget all the fun I have had with you both at Happy Valley. The card you made is wonderful. Thanks so much!

It was so great of you to come and help me in my room this year, Kyle. My pencils have never been so sharp!!! The watercolor painting that the two of you made for me turned out so great. I framed it and hung it on the wall of my office at home. It makes me smile to see the "explosion" of colors. I loved seeing Cooper today and I felt like a real celebrity getting my picture taken with you and Erik. I am so happy that we have stayed good friends these past two years. I hope you have a fabulous summer filled with swimming, laughing, and lots of fun times playing with Nicolas.

I am taking my Kylie t-shirts and bracelets with me to Paris tomorrow, along with all my good thoughts for you. Stay strong and I hope to see you over the summer!

Au revoir, mes amis!!!

Lots of love-
Mrs. DeJong

Anonymous said...

I think about Kyle frequently and I will keep him and his family in my prayers. God Bless.

Kayley Westra said...

Your bravery is nothing short of inspirational. Look no further for a trip on a sailboat. We are going to be sailing in the San Juans for a couple weeks this summer and would love to have you join us for a weekend adventure!

Tammy said...

Hi Kyle,
I check your page often and pray for you every day. I think you may be the best chicken dance dancer there ever was! Excellent job!

Rachel Myers said...

I'm thinking good thoughts for all of you guys. Kyle - way to go with staying so still in the MRI AND learning to swallow pills. I still have trouble with that sometimes! Much love and many hugs to all of you!

:) Rachel

Anonymous said...

Just wanted to let you know Kyle is in my thoughts.

Also I was just reading on Alexis page, the mom uses essential oils that have anti-inflammatory properties. Maybe it would something that could compliment his current treatment.


This is what is said:

The mainstay of my routine is frankinsence. There is significant research out there on this oil. I rub approximately 2-3 drops on the soles of Alexis' feet at least 2 times a day. Also, I try to rub at least 1 drop of it on the base of her skull as well. I also have been using Idaho Balsam Fir, in the same manner in which I use the frankinsence. I also rotate an oil called Palo Santo, which is similar to the frankinsence, as well as Mryhh. I've also been using Lemon oil and grapefruit oil because they have limonenes which penetrate the blood brain barrier and have been shown to have anti tumoral capacities. Finally, I use clove oil one or times a week on the brain stem area. This you have to diffuse a bit with a vegatable oil as it can be "hot" or burn children. These oils are rotated throughout the week. The one that gets used every day is the frankinsence. I purchase the oils from a company called Young Living. The founder is doing amazing research on essential oils and has a clinic in Ecuador where he has cured people of many horrible diseases. Finally, each day Alexis drinks 2-4 ounces of a juice produced by Young Living called Ningxia Red. It's not cheap, but it's made from the Chinese Wolfberry which has great properties. I've written about this juice before. Young Living is on the cutting edge of natural medicine and finding natural cures.

God Bless

Anonymous said...

You are a remarkable boy Kyle. When we heard your story, it touched our hearts. Our family saw you swimming like a fish in years past at BGCC, playing basketball like a champ and kicking the soccer ball with determination. Our son Edward played soccer for Mrs. Clark. You are one tough cookie. We continue to follow your story and pray for your strength, your courage and your recovery.
In our thoughts,
The Hochsprung Family

Anonymous said...

Your blog is always an inspiration to me, as is
Kyle's strength and courage. I continue to keep
your family in my prayers.

PHDavis said...

Kyle - you rocked on that wakeboard!! You are one tough cookie, because that water was SSSSOOOOO cold!!

We love hanging out with you guys.

We love you!!

Julie, Paul, Andrea and Shane

Lindsey said...

Hi Kyle!

I just woke up, and realized I had the most fun dream of you and me! We snuck out in the middle of the night and "borrowed" a hot air balloon and took it for a ride all around Bellingham. We stayed up in the air long enough to see the sun rise. Then it came down, and we had quite an adventure trying to find our way home. I know it was just a dream, but it reminded me of all the fun things we used to do (although they weren't usually quite as exciting as a hot air balloon!). I think and talk about both you and Cola all the time. You are always in my thoughts and prayers. I miss you tons.

Love, Lindsey

Dane Faris said...

HI Christin and boys, it's Sam writing-Dane's in bed. Just wanted to let you all know that we are missing your faces and can't wait to see you at Dane's party. Kyle, I hope that the pill swallowing is still going good and that your feeling good. Dane has baseball camp this week and then I hope we can log some time at the pool or just playing. Thinking of you all and checking in. Lots of love and prayers. Sam and kids

Dana Hope said...

Thank you so much for keeping us posted through what was such a difficult post to write. You are sooo strong even though you may not feel like you are.
We are wishing, hoping and praying for an abundance of miracles as you walk this path of new treatment.
Our love is with you!
The Carpenters

Carrie said...

Just a note to let you all know that the Chutes are thinking of you all...
Wishing you all a happy summer.
Sending a hug!
Carrie for all the Chutes

Anonymous said...

Hi Squirt,
It was great seeing you at the pool last week. Although, you didn't have to squirt me so much :) Keep smiling & dancing and remember there are a lot of people praying for you. ~Brenda Dentel (aka Josh's Mom)