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Apr 28-May 04

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Hello all. I apologize I have not been better about posting in the past few months. It certainly has been a busy time but just an excuse none the less.
I want to start by thanking all of the people that have supported us on our pediatric cancer journey over the past nearly 3 years. It has and continues to be the most trying thing our family has ever faced. Not close. Our friends, family, community etc have supported us and we appreciate it. Although I won't mention many people by name you know who you are and how you have been part of our journey. We are thankful. The prayers have worked and will still be needed as the coming months unfold. There are some specific names I will mention though. Dr. Andrea Watson, Dr. Ross Perko, Dr Jaquelyn Wiermaa, and Jessica Witty RN. The 4 of these people along with their support staff at Essentia Health are directly responsible for saving Blake's life. There is nothing I can do or say to repay you.
The balance of the post will be a bit long.
Approximately 9 months ago the Children's Oncology Group (COG) changed the standard of care for boys with Leukemia. Over the past decades boys were treated for 3 years after front line treatment and girls for 2. There was data at the time that supported testicular relapse as a probable cause. The other 2 institutions around the world that also have protocols are St. Judes and the UK. Neither of those institutions treated boys and girls different. It was specific to COG. Although all 3 have similar survival rates how they got to the end of treatment was a bit different. This was a monumental shift in treatment for boys.
Given that data, had this protocol been in place when Blake was diagnosed in 2018 he would have finished treatment on February 11, 2021. Over 6 months ago. But still has 6 months to go from our original protocol.
So over the past few months at each appointment it has been discussed if we should continue with treatment as is until February 11, 2022 or should we stop. I found the new COG study. It is complicated and has 3 different arms, however one of the arms of the study is Blake's exact treatment plan minus the extra year. One of the arms is NOT 3 years. Medically they have concluded that the extra year for boys is not necessary for Blake's type of cancer.
So over the past few months Sara and I have found ourselves agonizing, praying, reading, studying etc trying to figure out what is the best plan over the next months for Blake. See the issue here is this has never been in play for parents during treatment. In all other cases a study starts, stops, gets analyzed and then treatments changed.
Our oncology team is amazing and at each appointment we discussed where Blakes was at: side effects, toxicity, long term ramifications and of course the worst topic.. relapse. The other issue was now Blake was willing to do his spinal taps with NO sedation. His last one in July we put numbing cream on his back and he got on the table and they put a needle in his back and injected chemo with no sedation. Needless to say he is now good at it and was again a pioneer in that he was the first child his age to do that with no sedation. They are now offering it as an option.
So one side of the coin: foot warts, potential ankle issues, mouth soars, no reflexes amongst other things, oh and he wants to go back to school where infection can be prevalent.
Other side of the coin: We think potential relapse....but that is not what the data says, that is where my head goes if we shorten treatment.
So now we have a decision to make. Do we continue on until February or stop now given what we know.
So that being said Sara and I, along with our oncology team, the good lord and of course Blake decided it would be best to start our post cancer journey on August 16, 2021. He finished treatment.
The most difficult decision of my life. I won't tell you at this point that we celebrated as I thought we would. I will tell you, for the first time we had Jack and Grace with us at the appointment. Clearly gods hand. Once the decision was made we stood in the middle of a room at 430 in the afternoon, hugged each other and cried. I will tell you that I hope peace is something that happens in the future, it isn't here yet. What I would tell you is it is unnerving and relief at the same time. An emotion I hope no one else ever feels.
In true Blake fashion when the oncologist explained it to Blake he says "well if there is the same chance it won't come back if I do or don't take the chemo, why am I taking it?" I found myself when I divorced myself emotionally that I was advocating continuing treatment because we started at 3 years and damn it we are going to make it... but that was the only reason I found and one of emotion not current facts. I never thought the new facts would change so much as our journey unfolded.
Blake is scheduled to have his port removed on September 9. He will ring the bell on September 13. I cry as I write this. He did it. I don't know if I should celebrate, cry, be scared. Maybe all of the above. It is raw, he has killed cancer but I am afraid of the future.
I could go on and on about the decision and how we arrived here. I just ask for continued prayers as the emotional healing and restoration for Sara and I is just beginning. I also ask to not be removed from prayer lists as Blake will have many follow-up appointments and will take many months for his body to recover from almost 3 years of hell. I will pledge this to all of you... We will do all we can to help others going through this and go to the ends of the earth to kill this disease forever. What does Blake want to be when he grows up... A pediatric oncologist. Leukemia....he is coming for you.

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