Tuesday, March 18, 2008
It's been a hard day today. The roller coaster of emotions just seems to be the norm. We've been so excited to be coming home. Frank did beautifully during this transplant. We are so pleased with how things went.
We woke up, packed the rest of the apt and headed to get labs drawn and see Dr. Barlogie. While in with him, he looked at the MRI first. It showed no change from the last one.
Then he went to look for the gene array from the fine needle biopsy out of the new hip lesion from a few months ago. (fyi: the gene array is a detailed break down of the myeloma's DNA. Little Rock is one of few places that can do that, making it another reason it's #1 in the world for treating myeloma). He's been waiting on this for a few months. It helps them identify prognostic indicators, and determine low vs high risk, as well as aid their research in looking for a cure.
The results were disappointing for us today. They confirmed that Frank's relapse is aggressive. It's high risk and requires a more aggressive treatment protocol.
I cannot describe to you how a heart breaks for one you love dearly, and I hope you never have to find out for yourself. I love Frank so much. He was hoping to come home and just "get back to work and do normal stuff". But the treatment plan will be more than intense than we were anticipating.
He has been working on a new treatment plan for high risk patients. He told Frank he was going to put him in Total Therapy 5 research program. He was first treated under Total Therapy 2. With #5 beginning, we found out Frank will be a charter member.
We will return next Wed Mar 26th for a smaller dose of what he just had: Melphalan + VTD-PACE (all letters are a different chemo, so 8 in all). He will not need stem cell support to recover from this, so he can come home as soon as the chemo is finished. We should only be in AR for a week. We still have the same apt so that's good. (We just have to unpack the car and move back in).
He waits 6 weeks, then returns to do that again. Then 6 weeks later, goes back for another transplant like he just had. At that time, Dr. Barlogie talked about trying to harvest stem cells again so he'll have some more. Right now he has 17 million in 3 bags frozen. Then a year of consolidation chemo on a monthly basis.
This website is to keep us connected with our loved ones and friends. It's not about saying what we think sound good. We hope we're "keeping it real" as Randy Jackson would say... and on that note.... hearing all that was not easy. It hit below the belt. Frank was mad. Mad about the loss of control he feels over his life, and his ability to be a husband and father, and a good and productive employee. I am scared ~ about so many things... couldn't even begin to name them all. This was just not what we expected.
We turned off our phones and took some time. We drove home and had dinner at Bone Fish for my birthday today. (Happy Birthday to Frances, too). We called the kids. We decided to tell them even though they are skiing, and trust God's timing. They are on a church trip, on a mountain, and have the opportunity to work out their emotions there on their own, away from here. Our pastor is there, their dear leaders and best friends that love them, and family is there too. We had a real peace about going ahead with that. My prayer is that they do work some things out. Cry, scream, pray, do what ever it takes. I want God to meet them where they are in a real way for each one of them.
God's timing is always perfect. He shows us up for me all the time in ways I know are not a coincidence. 2 verses came to my heart today as we pondered all these things....
John 16:33 "These things I have spoken to you, that in Me you may have peace. In the world you will have tribulation; but be of good cheer, I have overcome the world."
2 Corinthians 12: 9 Paul asked for his thorn to be taken away... "And He said to me, 'My grace is sufficient for you, for My strength is made perfect in weakness.' Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me."
I believe this, and claim it for Frank and for our family.... will you join me, please?