~ Update July 24, 2014 ~
Jonah is in Heaven
Hello friends and family! A lot has happened since our last blog post and I wanted to update everyone. Apologies for the long pause in writing but it seems that every time I sat down to try to write to you and let you know what we have been up to I was interrupted by a higher priority of hand-holding, laughing with the boys, talking with friends, taking in the sunset, and just plain soaking up each and every day.
Jonah's brain tumor began to grow again in mid-April so we kicked our "live each day" mantra into high gear. Dave and Jonah took a 3 week road trip covering over 4,000 miles together making all kinds of memories and visiting friends and family. They came home for about a week and we decided as a family not to pursue any further medical treatment, booked tickets to our house in Mexico, and took off again for a family getaway. When we got back from our trip at the end of June we knew that Jonah's tumor was taking more and more function from him and it was time to be home together.
We spent the last few weeks watching funny movies, hanging out with close friends, listening to good music, eating Jonah's favorite foods and treats, and just soaking up the precious time we had together. God has been so good and so kind to us during this time of suffering in our lives! This was made undeniably clear to us in the way that two of Jonah's heartfelt dreams came true in the last weeks of his life. He got to meet and spend the afternoon with one of his all time skate heroes, Christian Hosoi, and the addition to his skatepark, Jonah's Snakerun, was completed in record time with the help of the best skatepark building crew in the world who just happened to be available to come and help!
Jonah went to heaven on Sunday morning, July 20. We know that for him to be absent from the body is to be present with The Lord! We miss him terribly but we know with certainty that we will see him again.
Philippians 3:20-21 "But our citizenship is in heaven, and from it we await a Savior, the Lord Jesus Christ, who will transform our lowly body to be like his glorious body, by the power that enables him even to subject all things to himself."
Jonah's Memorial Service Plans:
Our lives changed forever on January 5, 2013 when the doctor at our little Ojai Community Hospital said, "ma'am, your son has a mass in his brain roughly the size of a golf ball". BUT, the story started well before this. You see, God was lining up many small and large details in the life of our family to place us here, now, in the exact right place when we would hear this news...
- Career transition for Rachel from Nike to Patagonia accompanied by family move to southern California.
- Perfect timing for David to step away from the daily operations of his business in Oregon to spend more time with our boys.
- Purchase of a home in Ojai next door to neighbors who have poured out endless generosity to us, stepping in as Gabriel's caregivers whenever we have needed it.
- Amazing insurance coverage...and I thought we had great insurance with Nike...
- There are many, many other details that all lined up perfectly to place us here, now, exactly where we need to be. This is NO COINCIDENCE. It is GOD'S PROVIDENCE in our lives and we are grateful.
Of course, after the Dr. in the Ojai Community emergency room stated those words that changed our lives forever, we entered a whirlwind. Jonah was transported to UCLA Medical Center late that same night after the ER Dr. tried to get him transported to Santa Barbara and then to LA Children's with no luck. Here's another little example of God's hand...Jonah was always supposed to go to UCLA. You see, the ROCK STARS of Neurosurgery, Neuro Radiology, Neuro Oncology, and all the rest of the best of the best are there!
Jonah had brain surgery on Janurary 9, 2013 and we found out that day that the "mass" in his brain is a "high grade" brain tumor--this is a nice way of saying he has cancer in his brain. We were devastated with this news but we also know that if Jonah was at any other facility, the neurosurgeons would have considered his tumor to be inoperable due to the delicate location in a very important part of his brain. Dr. Lazareff at UCLA made performing Jonah's very complicated brain surgery that day sound like a trip to the grocery store. You see, he is a world renowned Neurosurgeon and the Director of Pediatric Neurosurgery at UCLA. Yep, we got THAT guy!
Jonah recovered from his brain surgery like a champ and was discharged from the hospital on Janurary 14th to continue recovering at home. We waited about a week and a half after surgery for the pathology results to come back and we found out exactly what name Jonah's tumor has. He was diagnosed with a type of brain tumor called a Glioblastoma Multiforme. Bottom line, it is a very agressive type of brain tumor and is extremely rare in kids. Jonah's treatment plan is equally agressive to fight this tumor and he continues to be cared for by an amazing team of doctors.
Jonah's Neruo Oncologist, Dr. Tom Belle Davidson (Dr. D), is one amazing woman. She and her team work exclusively with kids who have brain tumors...that's it. She got Jonah entered into a Clinical trial for his treatments and we are continually thankful that we do not have to give a second thought to the level of care and cutting edge technology that is being used in Jonah's treatment plan. He is receiving an initial 6 weeks of combined Chemotherapy and specialized Radiation therapy that only UCLA offers in our area. Today marks 3 weeks and 3 days of the initial 6 weeks under our belts. Jonah is tolerating his treatments really well--he gets tired from the radiation but otherwise is not experiencing most of the typical negative side effects. Praise God!
We will continue to post updates here to keep friends and loved ones around the world updated on how Jonah is doing. We are thankful for the outpouring of support we have received and continue to ask for prayer for Jonah's healing.
"And the peace of God, which surpasses all understanding, shall guard your hearts and minds in Christ Jesus."
- Jonah had brain surgery on January 9, 2013. His tumor was considered "inoperable" due to its location but there was one neurosurgeon who was willing to operate. As a result of both the tumor location and the surgery, Jonah was partially paralyzed on the right side of his body with weakness in his right leg and arm and complete loss of function in his right hand. He also has some speech delays and short term memory challenges. Some of the function returned as he healed from surgery and then some was lost again due to the effects of radiation therapy.
- He was diagnosed shortly after the surgery, when the pathology results came back, with a Glioblastoma Multiforme which is one of the most aggressive and most deadly forms of cancer--also extremely rare to see in kids.
- 6 weeks of every-day chemo and radiation followed his diagnosis and he started monthly chemo and antibody treatments as a part of a clinical trial at UCLA in April. He is in the middle of his 8th cycle out of 12 on the clinical trial and we will work with his doctors to make the best choices about his treatments once the trial period is complete.
- Jonah's doctors are amazed by his progress and by how well he is responding to his treatments so far. He is now over 10 months past his original diagnosis with no new tumor progression and continues to regain function and strength in the right side of his body and particularly his right hand. He has been working very hard in physical therapy, occupational therapy, and speech therapy to gain back his normal function in his hand and his speech abilities.
- In August, our insurance coverage for Jonah's physical, occupational, and speech therapy ran out. These therapies are very expensive, adding up to about $2500 per month in addition to our other out of pocket expenses relating to Jonah's treatments at UCLA every month.
- We will celebrate one year of fighting brain cancer on January 4 of 2014, just about a month and a half away. This was the same day last January that Jonah was initially admitted to the hospital with a terrible headache and an inability to talk clearly. We will continue to praise God every day and thank him for everything we have and everything he has done for us this year--even in the midst of our storm.