February arrived and Elijah turned 12, hard to believe. We all caught Olympic fever and were glued to the TV thrilled with how well our athletes did! Noticed Joel is now getting a couple headaches a week, I wondered if it was diet related.
March came along and we tapped 2 trees and started collecting sap and making our own Maple Syrup. YUM! We were blessed with a visit from the Clark’s over March break and had a great visit. Joel’s headaches were now happening every day often worse in the morning, even waking up with them and sometimes vomiting. I made an appointment to take Joel to our doctor’s office.
She didn’t seem too concerned told us it was cluster migraines. This did not sit well with us, we saw her on the Tuesday, David had Friday off work so we drove to the Children’s hospital in Ottawa. Of course, Joel woke up Friday morning feeling great no headache, we decided to go anyway.
When we got to the hospital Dave and I prayed in the parking lot that someone would take our concerns seriously. Thankfully, we had a wonderful resident who told us afterwards she doesn’t normally order CT scans for headaches but she had to go with her gut and ordered one. I had just finished telling Dave I had watched enough ‘Grey’s Anatomy’ that if she came back alone it would be fine but if she came back with another doctor it was not good. Shortly afterwards she came back in with a second doctor.
The news was not good, there was a large mass in his brain… it felt like moments later we had neurosurgeons in the room explaining that they would need to do an MRI, that he had a massive tumor in the posterior fossa that had blocked the flow of the cerebral spinal fluid and had caused hydrocephalus which was causing the headaches. They were shocked that Joel was not presenting with more symptoms.
Within moments a Child’s Life Specialist was explaining to Joel what an IV was on a stuffed moose that she gave Joel to take care of. Just like that our lives changed, never to be the same again.
I really can’t believe that as I type this it has been eight months since his diagnosis. I could right a book about this journey but I will do my best to sum it up quickly.
The very next morning Joel went into surgery to remove the tumor, it lasted almost 11 hours. It was a success but not without set backs for Joel. We had been told that he could possible die during surgery, so when he awoke we were thrilled. I was so unprepared for the sight of my precious little boy and how helpless I was to help him. I remember thinking all we had to do was get through the surgery; I was hit hard with the reality that we had a very long road ahead of us.
Joel could not sit up, he lost motor control of his right side couldn’t hold his head up, couldn’t walk, had some facial paralysis, and his one eye was turned in and couldn’t track. He also had double vision. A few days later he went mute. A normal side effect, BUT we had Joel. His pathology report confirmed what we had already been told his tumor was a Medulloblastoma a cancerous tumor. A month after surgery Joel started radiation. Next to his original diagnosis listening to all of the possible side effects of the radiation was one of the hardest days ever. As the cancer cells can travel through the cerebral spinal fluid his whole brain and spinal cord had to be radiated. Radiation does not normally cause hair loss but at the levels he was receiving he lost his hair. Joel received 30 treatments of radiation (6 weeks).
Easter, Mother’s day etc. all kind of blew passed us this year. We went into the hospital on March 26th and came home on June 7th. Life has been a series of appointments and hospital stays, Joel began chemo 4 weeks after the radiation ended.
He is now walking albeit wobbly, he uses his right hand only when absolutely necessarily, he eats and colours with his left. Facial paralysis is gone. Speech is improving; he still tilts his head a little and still has vision issues. He is working hard at recovery, the doctors have made no promises, we have no idea how long recovery will take or if it will be complete. Of course, we hope and pray for complete recovery.
Amongst all this there have been times of great joy. We have had the love and support of friends and family and even at times complete strangers. We have made some wonderful friends at the hospital. In some of our darkest moments we have been blessed with a peace that can only come from God.
In June we went on a steam train trip with 25 other pediatric oncology families, and had a wonderful time. We also had a visit from the Lodewyke family in June. The kids all wished they could stay longer. Summer brought a time of celebration as we celebrated Hannah’s 3rd birthday, Joel’s 5th birthday, Taliah’s 10th birthday and Joshua’s 7th birthday. We were also blessed with a visit from Oma. Uncle Victor and Opa drove her down and Uncle Jake, Aunt Cindy, Sarah and Alex picked her up it was wonderful to visit with family.
We also received some unexpected but happy news in Feb. 2011 our family will be welcoming a new little one into the family. We are thrilled and at times slightly overwhelmed as Joel will still be undergoing treatment until the end of May 2011. Joel keeps us amused with his many baby name suggestions.
Let us also rejoice in our sufferings, because we know that suffering produces perseverance, perseverance character, and character hope. And hope does not disappoint us, because God poured out his love into our hearts by the Holy Spirit, whom He has given us. –Romans 5:3-5
This past year we have put this verse to the test. We have not been disappointed. I know it may be hard to believe that I could be speechless but at times this experience has defied words. Did I want this path for Joel… absolutely not!!!! Have we benefited from it? This is so hard to answer because the answer is definitely yes, we are not the same people, we have been through the fire and we have come out refined. (Of course, there is still room for more refining.) The hard part for me is that Joel is so changed. He has so much recovery yet to happen, his life is harsh at times, and his future so uncertain. (Yes, I know everyone’s future is uncertain, but his has been scarred by this disease, in a way that ours hasn’t) I feel guilty that he has been the one to bare this while the rest of us have been broken hearted along with him we have reaped the positive changes in character and walked in the peace and hope. Yet my 5 year old is the one that will carry the biggest battle scars from this fight.
I do not want to send a downer Christmas letter and I apologize if that is what this is, this journey has revealed a depth of character we did not know that Joel possessed. This journey has stretched us and grown us as a family and made our family bonds stronger than ever. This journey has brought peace and hope. This journey has encouraged people that we have never met before. We as a family have found it hard at times but we have seen much good and many blessings. We have hope. It would be wrong to not share with you all where our peace and hope has come from.
We celebrate this truth this Christmas and always! It is God that has carried us through this time and we continue to hope in Him. May He carry you through this coming year. May you all see His hand of peace and hope at work in your lives even through the toughest times.
With much love,
Dave, Cheryl, Elijah, Taliah, Joshua, Joel & HannahPin It