It has been a busy and trying week. Last Saturday Brant took me up to clinic and I had a fever of 101.6, so they admitted me to "keep an eye on things" and make sure nothing else was brewing. I was able to get IV antibiotics and extra transfusions. Brant spent the night on Saturday and then swapped up with mom on Sunday. It was kind of boring sitting around without any of my gadgets and paperwork (my son's backpack got put in the car instead of mine!). I had my biopsy Monday using a Cat Scan to guide the needle. I was totally out and don't remember anything after they said "we are going to start some of the relaxing drug". The only pain I felt was sitting on my bum for the ride home.
I was able to spend Tuesday at home and go to Chris' Spring Orchestra concert. They played his arrangement of 21 Guns by Green Day and it was really good. What a blessing that the timing worked out that I could be there.
Wednesday Brant and I headed out for clinic to get my platelet transfusions and finalize plans for our trip to Duke. We drove to Durham from Richmond and got there in time to relax a little. Today was a long day of talking with the doctor, Nurse Practitioner, and Research Nurse. They have one clinical trial open that they think I qualify for. They are ready to start me Monday, but we need to find out if I have the correct genetic mutation to qualify. Thankfully they did not do a biopsy and instead think they can determine the information from my peripheral blood. Also, it is a Phase 1 trial so we will have to find out if insurance will cover it. It is surreal to me that on Monday I could be in Durham for quite a while. There don't seem to be many other clinical trials around, so we hope this one works out.
The leukemia is definitely more active with my fevers and pains being more frequent. We will be challenged with the decision to start "standard" reinduction chemotherapy and hope for a response if no trial presents itself. But it is clear that I need to start some sort of treatment sooner than later. Please continue to lift us up in prayer that miracles can happen. And also to keep the whole family in mind. So many people have been making sure the kids make it to all of their appointments, activities, etc. We are so grateful.
This blog was started in Jan '07 as a way to update family and friends on my fight against relapsed Hodgkins Lymphoma. I underwent chemo and a stem cell transplant at Sloan Kettering in 2007 and then spent six years in remission. The blog went dormant as life became less about cancer and more about living. Now I am facing Acute Myelogenous Leukemia (AML) that has developed from previous chemo. So I have dusted off the old Blog (still very un-tech-savvy). Time to get up and fight again!
11 comments:
Always , always in my daily prayers. Wish I could do more, but my cousin told me the Most you can do for someone is pray for them . It is such an emotional roller coaster ride but you just have to hold on. love ya kandi
Mom and dad think think that you walk on water, and definitely think God had a hand in choosing your faithful, loving husband. God bless you. M & D
Rachel, you are in my thoughts and prayers every day.
Your positive attitude helped me get through many dark days.
- Toni Alger
Rachel - you, Brant and the kids are always in my thoughts and prayers. I will send extra prayers that you will get into the clinical trial at Duke. Know that I am here if you guys need anything!
Kirsten Tynch
Great to hear that Duke is having a look. I think your genes are just wonderful - especially the HLA ones ;-)
Love you,
George A
Keeping our fingers crossed and hoping for the best for you and your family, always. Stay strong!
Love you, Linda A.
I say a prayer for you every morning. I'm so happy to hear there's a trial that sounds hopeful. Stay strong and go kick butt :-)
Carol
I will keep praying for you and your family.
It's Jim Wright and like so many, I'll keep praying!!!
Rachel, I have been thinking about you so much. Praying daily. Hopefully clinical trials at Duke are starting or somewhere else. You are amazing and I know you will muster the strength needed for the trial. I love you, Rachel. I hear your awesome laughter in my head still and it makes me smile. If you are in Durham, I want to come by if I am allowed. I will email to find out. - Lisa P
Prayers and hugs for you from Blacksburg. Linda M (Rachel's mom)
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