Contributed by Kevin Toothaker
It has been 2 years 4 weeks and one day since our world changed. On December 17th 2013, my son was diagnosed with a tumor in his neck that was slowly paralyzing him. For weeks he was losing function in his left arm, but we all (his doctor, coworkers, and even myself) told him, “to keep moving forward, it will pass….just a strained back or possibly a torn muscle….just muscle through it”.
However he knew something was wrong and just kept calling and went to an ER multiple times, he knew better!
Thank God he kept at it until collapsed at home and couldn’t get up. There is no feeling that is more helpless than receiving a call from your 20 year old son in pain and crying because he can’t move… the drive home was the longest and the shortest of all time at the same time. Thankfully we had the wits to call the ER in Anchorage at the Alaska Native Medical Center and tell the doctor we had seen the previous day of the new circumstances.
He had them prepared for us when we rolled into the ER, he pretty much immediately went and received an MRI and they found the mass. It was compressing his spine to the degree that he literally had hours before his organs would begin to quit. The surgeons got into his spinal column and removed about 90% of the mass, the rest was inoperable because it was infused into his spinal cord.
Tim’s ability to walk unassisted and use his left hand was severely limited, so he and I were sent to Seattle on Christmas Day to begin an intensive physical therapy process at the University of Washington. Here he began the arduous process of learning how to walk again, how to hold things with his left hand, how to go the bathroom even; never once did he bemoan his situation, there was no “Why Me?” there was only “What do I need to do today”. He has kept that attitude and has truly only tried to worry about today because he has no control over tomorrow.
By the second week of January we knew that he was diagnosed with Ewing’s Sarcoma, a rare childhood cancer that afflicts only 300 youth nationwide. Thankfully we were able to have most of our immediate family near when the treatment plan was established which was devastating, but Tim’s demeanor helped us get back into the situation and the task at hand which was getting his functions back so he can have all his strength for the fight ahead. The tumor in his neck was treated through chemo and then radiation and the tumor was eradicated, but it had already spread to his lungs, he had full blown stage 4 cancer!
He stayed in Seattle for most of the next ten months, my wife and I switching each month so we could keep our jobs and the health insurance going, which became our life until August, which is when the other shoe dropped….my wife was diagnosed with cancer herself, also stage 4; but hers was spread throughout her abdomen, it was in her liver, lymph nodes, and esophagus. Her treatment plan is to create more time for her to be with us.
At this time my parents went to Seattle and stayed with our boy while I came home and took care of my wife while she began her treatment. In October, Tim was allowed to come home for the first time since Christmas and see his friends, family and dog Pippy….Finally.
It was also the first time he saw his car, he did not drive once while in Seattle, he was waiting for coming home and driving his own vehicle, I did not think it was a big deal until I saw him driving and wiping tears of joy from his eyes, then I knew he was home…Alaska.
This visit was short and my wife was allowed to return with him as she was in between her treatments, it was determined that Tim could continue his treatment here in Alaska during that last visit.
However, being away from the primary care doctor proved to be too much… there were too many holes that developed while in his treatment, delayed rounds of chemo, delayed screenings of the cancer, delayed blood work, and it felt as if the doctor up here was too busy to properly take care of him in that setting, so we changed care to Providence in July August of 2015.
These folks did more in two weeks than the whole staff did at the previous place, they found a clinical trial for him that created a lot of hope, and then in a short time he was out of it because the nodes began to grow again, so back home and a new treatment plan with different chemo’s because his body could not take much more of those specific Chemo’s.
Meanwhile my wife had had an allergic reaction to a chemo and was taken of it, and she began to become sick 10 out of 14 days with her treatment so her dosage was reduced and she was eventually given the Summer off of treatment in order for her to heal before the next cycle, which is where she is at now. She hasn’t been able to handle the chemo as well as Timothy, but her will is no less indomitable.
Somehow their circumstances have created a new weird comradery, they both have extensive knowledge of each other’s predicament and can anticipate when the other needs support or to be left the hell alone. Their health and ability to stay positive is linked, they find strength in each other, comfort in each other, and most of all understanding of what bothers each other, and they are amazing.
My daughter and I with her fiancé Scott are the outsiders looking in. We all get tired of hearing about how people don’t know how we do it? What? What else are we supposed to do? These two individuals get up and look at the reality of cancer streaming through their veins and folks wonder how my daughter and I do it? We don’t do anything except be there for Tim and Lisa and try to be as positive as they are…which is challenging. My daughter is an amazing young lady; she has truly handled this with class and dignity beyond her years. She is made of the same stuff as her brother!
I try to disappear to the garage and go through the “why my family” questions by myself, I have cursed God, but thanked him in the same sentence. I try to reason with God and find out if he is trying to teach me a lesson for not living up to my potential. I have always preached to my kids that everything happens for a reason, why is this happening? Why would my son, who doesn’t have a mean bone in his body be threatened like this, why would my wife who has had a lifetime of travails and tribulations be picked on at this time?
I have found these questions to be maddening, frustrating because there is no answer at this time, but it will present itself sooner or later, because I still believe that some good is going to come from this…it has to, I am just afraid the reason is going to be contrary to my desires of a whole family, of my wife becoming a matriarch to more grandchildren, of my son’s progeny and my branch in the Toothaker family tree could be shorter than I ever imagined…. these fears are more than I can say out loud, but I have to get them out somewhere, there is no more room to store inside any longer and the longer I try to stuff them back into a convenient corner the worse it will be when they eventually float to the top.
Hopefully writing these concerns will be therapeutic and help get these emotions outside in the clean air where they can go away…taking all of the “what ifs” and doubts away while we cope with our reality.