In July 2009, the world, that seemed to be going like every 17 year old expected, was completely knocked off its axis with the diagnosis of Multiple Myeloma. We are now on a journey that we never expected to be taking. We appreciate the support we have received from so many of our friends and family. This blog will allow you to join us as we charge head long into the unknown as we journey towards a cure.
Thursday, April 3, 2014
Trevor, Mom, & Tanner
I received an email tonight notifying me that someone left a comment on my last blog entry and when I went to Tanner's page, I saw that it has been a year and a half since I last posted. How have I let so much time go by without any updates?
When the blog was first set up for me, it was a way for me to update from Arkansas so that family and friends back home could keep up with Tanner's treatment and progress on a regular basis. Then, as time went on, I found that I leaned more and more on the blog as a way to survive the whole process... the fear and worry... the self doubt... the reflection on life as a whole. Then I reached a point where the unrelenting pain and worry of the whole process of getting through each day became too much to put into writing.
Tanner had done the remarkable! He had reached full remission and come home to go on with his "normal" life. He earned his high school degree while sitting in my office and celebrated with me and my work family (who supported us through the whole process) in Cancun where he was presented his diploma, he found a girl that he loved and got engaged... But his life was just falling apart on so many levels. He was trying to find his way back to normal - and it was not an easy thing to do!
Pain and stress were dogging his every step and choices were made and things were just hard. It was all just too much to put into writing. I had to just live it... He had to just live it... The whole family had to just live it... and we did!
Here were are, nearly five years from the time that Tanner was diagnosed with Multiple Myeloma and the good news is, we are doing okay! Tanner is engaged to Cearra and Trevor is engaged to Jaden... and no matter what struggles are being endured... love is enduring.
Tanner is working installing windows. They are saving money so that they can get married and get a small place for themselves (and their puppy, Moxie). He still deals with some bone pains, but the roughest part seems to be behind him at this point. He takes some pain medications but, other than that, he's not on any treatment at all.
Dr. Berryman told us last year that we had reached a point that we had to consider Tanner's quality of life. All the maintenance drugs were just keeping Tanner ill and he thought it was time for us to remove the drugs and follow him closely with lab work every few months - and let him just live life.
That's what Tanner has been doing for nearly a year now. Living his life without chemo drugs. Finding his way like most young adults. It sure has been a hard journey but here he is... Here we are...
Insurance has changed and Dr. Berryman is no long a provider on the network so Tanner has been just seeing a general practitioner for several months now. He doesn't feel that he's been receiving the follow up care that he needs. He says she tells him he "looks good" and to go home and not worry. He's changing providers and is hoping that the new PCP will refer him to an Oncologist at least every few months so that we can be assured that the cancer is staying in remission.
Dr. Barlogie always discussed with us about how he felt that it was very important that Tanner have regular PET Scans and MRI's to keep a check on the innumerable cancerous lesions in the bones throughout his body, and these general practitioners seem content to just check his blood work (which I was told in the beginning of his treatment did not indicate he had cancer at all... it was when they found the bone lesions that they found the cancer). I would just feel more secure if he was seen by an Oncologist at least twice a year (or every few months). When he sees the new PCP on April 30th, he's gong to ask for that referral - and make sure that they understand the importance of careful follow up for a Multiple Myeloma patient.
On a whole, things are good. Cancer is behind Tanner and he's living his life in full remission for 4-1/2 years now! I have hope that good things are coming for Tanner... Trevor... for our whole family. Hope is what keeps us going!!