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
Reini
Tuesday, July 22, 2014
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:
We'll post about our big appointment in Seattle Monday evening.
Much love,
Reini
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:
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| 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,
Reini
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.
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
Reini
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.
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| Becki showing Clint which brush to use. |
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| Clint securing Ben to the post. |
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| Clint giving Ben a good brushing! They got along great! |
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| Doing great, Clint! |
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
Reini
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
Reini
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
Reini
Tuesday, July 1, 2014
Pathology report
Hey,
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
Reini
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
Reini
Saturday, June 28, 2014
The Surprise Secret Garden!
So, I told Clint that people were coming over today to celebrate my 32nd birthday (which is tomorrow), but we would be hanging out outside to minimize the amount of germs he would be exposed to. He didn't guess his surprise, even with all the bark, sand, flagstone, and plants being hauled in. Hehehe...it was too easy!
But not the work....that wasn't easy. Boy was it rewarding though, and what a transformation! We had a dedicated crew show up just after ten, and most stayed until it was finished around six. A big thank you and shout out to: Dick, Lasse, Cameron, Michele, Michael, Trudee, Amanda, Shane, and Grandpa!!!!!!!!! (Grandpa kept Clint distracted in the house).
I want to give a special THANK YOU to Uncle Mike and Aunt Linda in Colorado for purchasing our beauty bark! It really made the garden look great.
Another special THANK YOU to my friend Matt, who beautifully made the wooden posts surrounding the Boulevard (pom-pom) tree!! They turned out GREAT!
Also, THANK YOU to Jack, our neighbor, who lent us many tools we needed for the job, as well as him taking ALL day Thursday to help haul in beauty bark, stones, sand, and all the flagstone... that was quite a task, and very appreciated!
Enjoy the progression of pictures:
But not the work....that wasn't easy. Boy was it rewarding though, and what a transformation! We had a dedicated crew show up just after ten, and most stayed until it was finished around six. A big thank you and shout out to: Dick, Lasse, Cameron, Michele, Michael, Trudee, Amanda, Shane, and Grandpa!!!!!!!!! (Grandpa kept Clint distracted in the house).
I want to give a special THANK YOU to Uncle Mike and Aunt Linda in Colorado for purchasing our beauty bark! It really made the garden look great.
Another special THANK YOU to my friend Matt, who beautifully made the wooden posts surrounding the Boulevard (pom-pom) tree!! They turned out GREAT!
Also, THANK YOU to Jack, our neighbor, who lent us many tools we needed for the job, as well as him taking ALL day Thursday to help haul in beauty bark, stones, sand, and all the flagstone... that was quite a task, and very appreciated!
Enjoy the progression of pictures:
And we have one very happy and thoroughly blessed Clint. Thank you for making this special Japanese garden for Clint to relax and recover in!!
Love
Reini
Wednesday, June 25, 2014
Clint came home!
This morning when I went into Felicity's room to get her up, she stood straight up in her crib and said excitedly, "Dad??" I asked her if she wanted to go get Daddy today and she vigorously nodded yes! And all day she's been saying "Dad! Dad!" So precious! I think she misses Daddy.
The plan this morning was to drive up with my mom and Felicity to see Clint. We knew there was a good possibility he would get discharged today. Clint called from the hospital right before we started driving to Seattle and said "I'm ready to get picked up!" Praise God, we did not hit any traffic going up (or back).
Felicity was VERY happy to see Daddy at the hospital, and Daddy was very happy to see his baby girl!
We got home at about 2 p.m. Clint was running a 100.7 F temp, but it went down to 99 F in just a couple hours, and he was able to get some good rest in before settling in to watch some Dr. Who (thank you Roy -from work- for letting us borrow all the seasons!)
I will post how he's doing as often as I can. Also, we have a surprise planned for Clint on Saturday...we have a crew coming over to bless Clint with something. I will take pictures and tell you all about it!
Love
Reini
The plan this morning was to drive up with my mom and Felicity to see Clint. We knew there was a good possibility he would get discharged today. Clint called from the hospital right before we started driving to Seattle and said "I'm ready to get picked up!" Praise God, we did not hit any traffic going up (or back).
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| Felicity is super excited to see Daddy! |
Felicity was VERY happy to see Daddy at the hospital, and Daddy was very happy to see his baby girl!
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| Daddy giving Felicity kisses |
We got home at about 2 p.m. Clint was running a 100.7 F temp, but it went down to 99 F in just a couple hours, and he was able to get some good rest in before settling in to watch some Dr. Who (thank you Roy -from work- for letting us borrow all the seasons!)
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| Max was happy to see Clint too! |
I will post how he's doing as often as I can. Also, we have a surprise planned for Clint on Saturday...we have a crew coming over to bless Clint with something. I will take pictures and tell you all about it!
Love
Reini
Tuesday, June 24, 2014
Visited Clint today
My dear friend Amanda drove up with me to see Clint today. He looks great! I was super surprised when the doctor told me they had considered releasing him today, but it's most likely they will discharge him tomorrow (...yikes, gotta get the house cleaned tonight!!!)
Clint was in good spirits today, he was lucid, able to remember everything and follow conversations normally. I think he was happy to have company. He got a chance to chat with his dad in NY for a few minutes on the phone.
Clint had his lovely head wrap removed at 2:00 p.m., and has some nice stitches...I'll have to count them when we get home. He had 50 last time.
Dr. Lee, his surgeon, came in while we were there and showed us the before/after MRI images. He was able to remove 70% of the affected areas, but the 30% left in there is right against his speech/motor center, and it would be devastating to risk touching any of those areas (he wouldn't be able to walk or talk).
We won't know our course of treatment until the pathology comes back, but if the remaining mass is just necrosis, Dr. Lee says we will leave it alone (no chemo). If it IS a tumor, Dr. Lee is hesitant for Clint to start a regimen of chemotherapy and would prefer him to consult with a radiologist about something called Gamma knife radiosurgery (a very targeted and fine-tuned form of radiation...very different from the last kind of radiation he had and is no longer eligible for). The surgeon is very pleased with how Clint is doing. So am I!
God is GOOD. All the time.
Mom, Felicity, and I are going up to see Clint first thing in the morning, and hopefully if they are discharging him tomorrow, they will send him home when we get there.
More updates soon.
Love
Reini
Clint was in good spirits today, he was lucid, able to remember everything and follow conversations normally. I think he was happy to have company. He got a chance to chat with his dad in NY for a few minutes on the phone.
Clint had his lovely head wrap removed at 2:00 p.m., and has some nice stitches...I'll have to count them when we get home. He had 50 last time.
Dr. Lee, his surgeon, came in while we were there and showed us the before/after MRI images. He was able to remove 70% of the affected areas, but the 30% left in there is right against his speech/motor center, and it would be devastating to risk touching any of those areas (he wouldn't be able to walk or talk).
We won't know our course of treatment until the pathology comes back, but if the remaining mass is just necrosis, Dr. Lee says we will leave it alone (no chemo). If it IS a tumor, Dr. Lee is hesitant for Clint to start a regimen of chemotherapy and would prefer him to consult with a radiologist about something called Gamma knife radiosurgery (a very targeted and fine-tuned form of radiation...very different from the last kind of radiation he had and is no longer eligible for). The surgeon is very pleased with how Clint is doing. So am I!
God is GOOD. All the time.
Mom, Felicity, and I are going up to see Clint first thing in the morning, and hopefully if they are discharging him tomorrow, they will send him home when we get there.
More updates soon.
Love
Reini
ICU visit
One thing I forgot to mention yesterday when talking with the surgeon - he mentioned that oligodendra tumors are notorious for causing seizures, which totally makes sense because Clint started having major seizure activity on May 10th. I am confident the surgeon is correct about the diagnosis.
My precious friend Amanda is going to go with me to visit him later today. I will get some pictures and post again this evening.
And the news I know you all want to hear....I won at cribbage! Mwahahaha!
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| Here's the cribbage board reflecting my win (black pegs) |
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| Auntie Laurie admitting cribbage defeat! |
Love
Reini
Monday, June 23, 2014
Awake
Clint's wonderful surgeon, Dr. Lee, came down to the waiting room and let us know that Clint is now awake, coherent, and talking. Yay!
I just have to say that God is so good to us. He has always been faithful to us, and I am thanking Him every moment for all He's done, from guiding the surgeon's hands to allowing Clint to wake and function normally.
On a side note, I am no longer allowed to shuffle cards for Cribbage. After the first surgeon visit, I was shuffling the cards, and my family asked me if I was ok. I said, "yes!" - and at that very moment, I lost control of the cards and exploded them all over the table. (I am winning though!)
More updates to come after visiting Clint in ICU.
Love
Reini
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| Dr. Lee letting me know Clint is awake |
I just have to say that God is so good to us. He has always been faithful to us, and I am thanking Him every moment for all He's done, from guiding the surgeon's hands to allowing Clint to wake and function normally.
On a side note, I am no longer allowed to shuffle cards for Cribbage. After the first surgeon visit, I was shuffling the cards, and my family asked me if I was ok. I said, "yes!" - and at that very moment, I lost control of the cards and exploded them all over the table. (I am winning though!)
More updates to come after visiting Clint in ICU.
Love
Reini
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