I know that we both did not expect this... it just wasn't what we thought we would hear- AGAIN... so SOON... my mind immediately thought of how hard my sweet husband fought and this was not at all what we had expected the outcome to be again.
The cancer is so aggressive... so soon... and already we can see daily how fast the nodes are getting bigger. Yes, the CANCER is already spreading. We sat (in a daze) as he said that Ty needed to get test right then for a donor so he could have another transplant. I will tell you that they went in full blown action mode at this point. Dr. Sweetenham explained that we have to start chemo again to get Tyler in remission. They are going to do something "much worse" then before. He explained it is called the SMILE chemotherapy regimen. He said the plan of attack is to hit it hard and get this cancer in control so he can get another transplant. He said the SMILE definitely is not what it would imply in meaning and that this is a very aggressive plan of attack in order to fight his cancer.
I asked the doctor how did Ty test free of cancer just one month ago at his 100 day post treatment tests. I wanted to know if he just relapsed or if the cancer was never really gone. He told us that honestly he has no idea. He explained that there is no way to really know. I guess with cancer sometimes it is there and simply the tests do not detect it. Unfortunately, the tests are not always accurate. He said that regardless all the treatments he had previously- did not work. NOW... he wanted to get Ty tested for a donor. He sent his sweet nurse Nicole into the room to draw the blood. We both were crying and just truly feeling intense sadness. I was trying so hard to be strong but I simply could not hold in my emotions. My husband was doing the same. Nicole was truly sweet and asked us about our children and family. I tried to look for photos of my phone as I told her about our seven children and the grand babies. I simply was so in shock I could not get to the photos or think clearly.
Nicole asked Ty if he had siblings who would be willing to donate their bone marrow for the transplant. We fumbled trying to give her their phone numbers. It was hard to do anything. Ty texted both his sister and brother. He has a older brother Bret and a older sister Leann. Ty is the baby in the family. They both texted right back and agreed to be tested right away. Ty could not read the texts without crying. There was a very sweet and tender feeling in the room. I felt God with us and I know that Ty did too. I had to read them and he was overcome with emotion. They expressed their love and willingness to do anything for their little brother. Nicole sat with us and was so kind. Bret and Leann are scheduled to be tested tomorrow. It will take two weeks to know if one of them would match. There is a 1 in 4 chance that they will be candidates. We are told our children are a 12.5% chance. My youngest son Tyler told me this morning, as I drove him to school that his biggest dream would be to be the donor and save his dad's life. I held in the tears and then cried as I drove home from dropping him off at school this morning.
The doctor then explained that first Ty would be going through the chemo treatments again, but since it would be even worse than the first time that Ty will be admitted and administered the chemo in the hospital each time. We can expect him to be in the hospital each time for 3 to 4 days. I know this may sound weird, but this gives me great comfort knowing that he will be watched over during these treatments. Ty had such a horrible reaction to the treatments last time and he was in so much pain. I felt helpless to help him and worried nonstop about him. I am thankful that he will be closely monitored this time. They will do the SMILE regimen. They did not know how many treatments he will get before the allogeneic stem cell transplant.
- Allogeneic bone marrow transplant: “Allo” means “other.” Stem cells are removed from another person, called a donor. Most times, the donor must at least partly match you genetically. Special blood tests are done to determine if a donor is a good match for you. A brother or sister is most likely to be a good match. However, sometimes parents, children, and other relatives may be good matches. Donors who are not related to you may be found through national bone marrow registries.
The truth is, if his brother or sister does not match, they will have to find a suitable donor and he mentioned this could take 3 or 4 months. I am sure they will extend his treatments to get and keep him in remission as needed prior to the transplant. Then he will be go through the process again of going into the hospital with the bone marrow/stem cell transplant from a donor. Yes, this is basically starting over. They warned that this is going to be much harder and worst this time.
Ty's concern to the the doctor was that they had mentioned before that maybe they would do a clinical trial. He asked Dr. Sweetenham why he did not mention doing that instead. Ty wanted to know if Dr. Sweetenham himself was the one sick and had the same cancer and was Tyler... "WHAT WOULD YOU DO?" He told Tyler that he would be aggressive and fight it so hard from the start and not be conservative. The doctor feels with his cancer still present, so aggressive... so soon after the transplant that he has no other choice. He assured Tyler that he would do exactly what he wants Ty to do. Ty and I both felt he was right and so we are united in this "battle" to save his life.
I know this is a lot of information. I have thought nonstop of how I should share the details. The truth is we have a large family and many friends from our church, neighborhood, and life that simply love and support us. It took me two days to process it and write it down. I can't possibly share all that is needed in texts and emails to every one so I will be posting on my blog... updates as needed. I know that I am 1,000% feeling HOPE.
Tomorrow Ty will have surgery to biopsy one of the swollen lymph nodes in his neck. I know it's kind of crazy, but the doctor mentioned that it's extremely rare, but the cancer could be "back" as another type of cancer...but it's highly unlikely. So it is just protocol to test it again.
Nicole did send in the psychologist to talk to us during our office visit. I am sorry, but he had a proper title, but it's a blur. When he came in we were still crying and dealing with the news. He was talking to us and I can't remember anything he said. Finally, I said... "How do I share this with my children?" He said, tell them the TRUTH. They need to know you will always tell them the truth and they can trust this. He said, that even with the truth always express the HOPE that is felt and shared. I mentioned that part of my personality is being positive and just always believing that the treatments will work. That is what got me through it this last time. He said, it's okay to be this way, but to make sure I allow my children to express their sadness and concerns. It's okay if they are scared or worried that their dad might die.
We both came home and spoke to our children that night. I will tell you that we are all steadfast in our faith and love for Ty (their dad) as he faces many challenging and difficult days ahead. We are full of HOPE for a miracle that this new chemo regimen will work and that the transplant will be successful. As a family, we are going to do everything to support him. His mother and Taylor are going to be able to stay at our home and help us. Taylor will get her "old job" back in prepping and kitting all my workshop kits. Gentry is going to be helping and working more hours for me to help alleviate the many tasks that I need to turn over.
I am relying on HIM right now. I want you to know that I have had the blessing of feeling God so strongly in our home and life. HE is the one who will and can grant us MIRACLES in our life. I am going to be Ty's biggest cheerleader. We have seen the blessings of God shower us since the day we first found out that Ty has cancer. My business is booming and growing in a way that is through him. Opportunities and blessings for me to support my family have been granted and my workshops sell out (which always humble me... often bringing me to tears). I feel blessed. Once again... we will face this with an attitude of gratitude for life and each day. I will always wake up each day and remember as I face each challenge:
Will I be bitter or BETTER???? I will be BETTER. I will be strong and I will allow myself to be sad at times too. I am only human and I will rely on the huge support we have around us to get us through this. I believe this BECAUSE OF HIM...
I love you all...