Thursday, July 31, 2014

Battles, Victories, and Thanks

Clint started his regimen of Temodar chemotherapy (in pill form) Saturday, July 26, but not before having a final HUZZAH! at the Scottish Highland Games in Enumclaw, WA!  Here is a picture of Clint dressed in his Army kilt, and Felicity and me sporting our Strahan Tartans:

Clint did really well during this first week of chemo.  He was up sick the first night, but was able to sleep through the nasty side effects the rest of the days he took it.  I am so proud of him.

We do have a prayer request - Clint is having a decline in brain function, and we need some healing and further treatment ASAP.  He is unable to concentrate, complete thoughts and tasks, register emotion, respond promptly, and verbally communicate easily.  This tells me that the cancer is likely spreading, so please join me in prayer warfare.

In my last post, I listed Gamma Knife Radiosurgery as being one of the recommended courses of action for Clint, and all his doctors agreed on this option.  We were referred to the University of Washington/Seattle Cancer Care Alliance for this consult and procedure.  After a long delay, I discovered Group Health denied this referral and was refusing to cover this option, citing that standard radiation has the same benefits as Gamma Knife, and therefore they were not open to covering Gamma Knife.

First of all, Clint already had standard radiation three and a half years ago during his first battle with this aggressive cancer.  Second, he is not eligible for further standard radiation (there is a lifetime limit)!  Thirdly, ALL Clint's specialists agree that Gamma Knife would be the most effective treatment at this point!!!

OH boy, you better believe that lit a wildfire.  Clint is worth fighting for, he cannot fight for himself, and many of us stepped up to battle this outrageous decision to deny care.  With the help of several people, including an amazing attorney I work with (Jennifer Arnold), my aunt Debbie (a physical therapist), and RN Kat in Oncology (she totally rocks), we filed an expedited appeal on the decision.  My wonderful mom, upon the advice of her sister-in-law Beth, created a CHANGE petition at this link:
 (This link has been disconnected because we were able to claim Victory status!)

So far, we have had over 350 signatures on the petition.  To my understanding, each signature sends an email to the Group Health system with a prompt to change their initial decision.  This got someone's attention in the system, because I had a phone call today from Clint's amazing surgeon, who saw the petition and wanted to know what was going on!  He asked me to call him next time something like this happens so he can help sway the decisions with his medical advice.

I am happy to say that after working with Clint's superb oncologist Dr. Sui and RN Kat (did I mention she totally rocks?), we had immediate results, and the appeal was APPROVED!!!!!  They had 4 other specialists that have worked with Clint put in their recommendation for Gamma Knife Radiosurgery, and we have an appointment next week with UW specialists to form his treatment plan for Gamma Knife.

Two words:  PRAISE GOD!!!

RN Kat has been wonderful in reminding us of our motto:  Faith over Fear.  This was an ultimate test.  And God has granted us VICTORY.

I am so grateful for the amount of support and blessings given during this time, and I want to offer thanks to some specific people (please forgive me if I've missed anyone!).  Thank you to:

- ALL of Clint's doctors and nurses who have helped handle Clint's care (Dr. Lee, Dr. Sui, Dr. Ramneantu, Dr. Mrugula, Dr. Herstein, Dr. Abdulkhader, Dr. Berry, Dr. McNabb, Dr. Nash, RN Kat, RN Kris, RN Renee, just to name a few!)
- The appeals team who compassionately reversed Group Health's referral denial
- Clint's and my family for all their love and support and prayers
- Vic and Rosie for driving us up to Seattle during Clint's surgery
- Auntie Laurie for driving us to the UW for his initial consult on treatment, and for helping us do battle when the referral number hiccup almost caused us to miss the appointment
- My supportive workplace (the Code Reviser's Office) for donated leave, the kind card and generous cash donation, help with the surprise garden, lending of some great movies and TV shows, and overall kindness to us at all times
- Everyone who pitched in (financially and physically) to build Clint's surprise garden
- My mom for taking good care of our daughter Felicity
- My sister Steph for coming over once a week to help me with tasks around the house and yard, and those who watch her kids to make that possible (Joan, Shana, Grandma)
- My Aunt Debbie for helping navigate some of the medical aspects of Clint's case
- Uncle Bret for being such a good friend to Clint and being an advocate for him
- My brother Cameron for mowing our lawn and helping with other tasks
- To my friends (church, work, and other) who have surrounded me with so much love and compassion
- All who are praying - prayers are so needed, and THEY WORK!
- To everyone who signed the Change.Org petition
- The owner of Great Western Supply for the discount on flagstone for Clint's serenity garden
- The owner of the Japanese Garden Nursery on Henderson BLVD in Lacey for helping us with plants and giving us discounts towards Clint's garden
- and last, but most certainly not least, thank you JESUS for proving yourself trustworthy and faithful over and over again.

I'll post more updates soon.

Much love,

Tuesday, July 22, 2014

Treatment Options

Yesterday was our BIG meeting in Seattle with one of the top neuro-oncology specialists in our area at the University of Washington.  My aunt Laurie drove us up, which I was very grateful for (she also took great notes, and it was good to have another set of ears in the room).  We almost missed our meeting with the doctor because Group Health did not properly enter the referral in their system, but I got on the phone with the business office and said "We are NOT going home until he's seen, this is important!!!"  We eventually got into the appointment an hour late (we were very thankful the doctor saw us late), and had a fantastic meeting.

We were so thankful to have a host of options for Clint, and even some for future use if needed.  Ultimately, this doctor did NOT want to use Avastin chemotherapy, as was anticipated to be used this time by our other doctors.  He wanted Avastin to be a last resort treatment.  Clinical trials for cancer vaccination was on the table, but we opted NOT to do that, as the vaccination was combined with Avastin, and we did not want to use Avastin at this time.

Here's what we DID decide to do:

1. Clint will be having Gamma Knife Radiosurgery in Seattle - it's only ONE sitting of fine tuned treatment and he's DONE!  He will have a specialized helmet screwed to his head and it does some really awesome radiation with lasers.  This will be very different from the broad radiation treatment he had before, this will highly focus the area of treatment and will minimize the amount of radiation he will be exposed to.

2. Clint is a great candidate for reuse of Temodar, the chemo pills he took the first time.  Temodar is usually only used for a first round type of treatment because the body builds a resistance or a tolerance for it.  Because Clint's cancer stayed away for such a long time (3 times the amount of time reoccurrence usually appears), he has not built up a tolerance and will likely do well on Temodar again!  We are very excited about this; he handled it like a champ last time.  We do not know how they will handle the dosage, but we will find out on Thursday.

3. AND the most exciting part of all, Clint will be using a new tool that's only been on the market for the last couple of years (invented in Israel, which is cool because Clint has been there) - Novocure!  Novocure is a device that consists of electrodes stuck to the head and hooked up to a battery pack that sends electrical waves through the brain and disrupts cells from splitting and spreading.  While it's not actually a cure, it DOES stabilize the condition and prevent it from spreading, which is incredible! This usually does well when paired with chemo.  He can use this device for the rest of his life to try and keep his condition stable.  We are very excited about this!  If this means he can live to see his little girl go to preschool, then who cares if he has electrodes stuck to his head all the time??

So, praise God there's some fantastic options.  Our biggest hurdle will likely be getting insurance to approve the Novocure device.  However, the Novocure company DOES have programs to help fund these devices for people whose insurance companies won't cover it.  So, either way, we will be using the Novocure device.  Thursday will be the day we find out when all of this starts.  Clint will probably have another MRI in the near future to help map out the area for radiosurgery.

Thank you for all prayers and support, they are VERY needed and appreciated.  We serve an amazing God, and we live in amazing times.  I am so thankful for advances in medicine.

Much love

Thursday, July 17, 2014

Radiology in Seattle

Clint and I met with a radiology specialist in Seattle today.  It SOUNDS like if we choose to go the conventional route of chemo and radiation, we could do it close to home in Olympia rather than going to Seattle for treatment (which would be GREAT).  They talked about the possibility of doing Avastin chemotherapy first to help kill and reduce the remaining tumor, which would minimize the amount of radiation exposure needed to complete treatment.

Ultimately, the radiologist wants to confer with the Seattle Cancer Care Alliance specialists after we meet with them on Monday so they can tailor the best possible treatment for Clint.  What was encouraging was hearing the radiologist tell Clint that his amazing attitude, young age, fitness, and positive response to prior treatment really gives him good cause to hope for prolonging his life.  We take that and add it to the greater hope we have with Jesus working on Clint's healing!

Clint had a whimsical moment outside the medical facility....we found a BIG slide for big kids:

There's a KID in each of us, and Clint isn't afraid to live it up!!!

We'll post about our big appointment in Seattle Monday evening.

Much love,

Tuesday, July 15, 2014

Clint's Monday

Yesterday was Horse Therapy for Clint through the Rainier Therapeutic Riding program for veterans in Yelm.  What a fantastic program!  Clint was quite a few lessons behind, as his class had started on the day of his surgery.  I had two hours blocked out yesterday morning for him to catch up on as much as he could with the class.

Clint was not able to start therapy with his huge breed stock appaloosa named Root Beer.  Apparently Root Beer likes to knock people around with his head and neck...not a good thing for Clint just yet!!!  So they started him with their two mini horses, Ben and Jerry!  So adorable.  Here are some pictures of Clint grooming Ben.

Becki showing Clint which brush to use.
Clint securing Ben to the post.
Clint giving Ben a good brushing! They got along great!
Doing great, Clint!
 With book and journal in hand, I was really looking forward to sitting in the main office and having some "me" time (what's that?!), when half an hour later Clint walks in and says he's done.  YEP!  He caught up on his classes within fifteen to twenty minutes.  (He's not ambitious or anything...geez!)  And I was thinking, "well, can you teach him anything else!?  I need a few more minutes!"  Ah well, it worked out fine anyhow.

Later in the afternoon, Clint got to have his sutures removed.  So, I have just one tiny question:  Just how many medical professionals does it take to remove sutures??

They were awesome, really, but we did have FOUR people in there to work on the suture removal!  It was a bit humorous.  I guess the stitches were a little tight and some skin had grown over parts of them.  (Nice.) (Not really.)

The lady wearing the butterflies was our champion and removed them all!  The lady on the right in the blue was a very kind student - it was a fascinating experience for her to see this particular suture removal.

Clint is doing great right now, and his happy to have no more stitches.  We go up to Seattle radiology specialists on Thursday, and we see Neurology-Oncology specialists (through the University of Washington and the Cancer Care Alliance) in Seattle on Monday.  We will have our plan of medical action down next week.  I am looking forward to having a plan.  Sometimes waiting is really hard!

Thank you all for your prayers and support - they mean everything to us!

Much love

Friday, July 11, 2014

Faith over Fear

We met with Clint's surgeon on Wednesday.  We were informed that most of what they found was unfortunately Glioblastoma (the aggressive type of brain cancer...most patients rarely survive a year after being diagnosed.  Clint is very blessed to have had 3 1/2 years...but we ask God for more precious years).

After meeting with Clint's oncologist yesterday, our plan is to meet with specialists up in Seattle at the Cancer Care Alliance and the University of Washington.  Our oncologist wants a second opinion to make sure we are getting Clint the best possible treatment - we are even open for clinical trials!!!  Fortunately, Seattle facilities have cutting edge technology when it comes to treating cancer (and most health care, for that matter).  We are looking forward to consulting with the specialists up there.

On another note, Clint is starting horse therapy for war veterans on Monday, and he is really looking forward to meeting his therapy horse "Root Beer."  I think this will be a very good experience for him!

So, I admit, I've been having a roller coaster of emotions during this time - going from being strong to falling apart.  Ultimately, I TRUST GOD.  I have moments where I ask, "God, what's going to happen??"  A couple nights ago while I was reading my Bible, I asked God to give me a piece of hope, for I was desperately sad.  I opened to Matthew 7:7 (not on purpose), and it said, "Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you."  That made me smile, and I said, "Ok, God!  I ask you to heal my husband!!  Whether it be through a miracle or modern medicine, let him be HEALED!"  I trust God with my husband.

While Clint and I were chatting with one of our favorite nurses at the oncologist's office yesterday, Clint was asked how he was feeling about all of this "stuff".  His reply was that he had nothing to fear, but he was choosing to hold onto faith.  So our new motto was born:  FAITH OVER FEAR!

Though we may walk through the deep dark death valleys, we have nothing to fear, because God promises to be with us.  We choose to hold onto HIS word and HIS promises.  He is so good to us.

Will post more soon.  We have more appointments next week that will help determine treatment plans.

As always, all our love

Tuesday, July 1, 2014

Pathology report


I just read Clint's pathology report online...wouldn't you know Clint likes to keep things interesting!?  We won't meet with his oncologist until next week for our official report and plan for treatment, but it looks like Clint decided to have all three possibilities in his head.  So, the mass they removed was a mixture of necrosis, oligodendra tumor, and glioblastoma tumor.  Wow.  I am guessing they will want to do Gamma Knife Radiosurgery fairly soon, if that's the course they still want to go (that's what the surgeon recommended).

Clint is still recovering from surgery very smoothly and is up and about a little bit.

So, please be praying with us over all this stuff.  Life is so precious and crazy.  But God is good no matter what, and we choose to trust Him with everything.

Lots of Love