Friday, August 27, 2010

Happy "Birthday!!"

Today marks one year since Max had his bone marrow transplant. We celebrate his Birthday and THANK GOD for this day. The one year milestone is a huge accomplishment and I am so proud of my dear husband. It has been a long journey since that day in December 2007 when I heard him say the word 'leukemia' and a few months after that when I heard the doctor say 'T-PLL.' That day in December our lives changed forever and will never be the same. We have met some amazing people along the way, many from this blog. I thank Mark for putting this in place so we can connect, share and maybe in some way help others who have T-PLL.

The year was scary at first starting with 39 long days in the hospital. At home it was filled with lots of medical needs, doctor visits and uncertainty. There were frequent visits to the BMT clinic and very limited exposure to house guests - which resulted in an extremely boring social life. Gradually we emerged back into the 'real world' and reconnected with friends and family whom we dearly missed. SKYPE saved us by allowing us to SEE friends and family from long distance. I highly recommend it!

Max was very blessed to have little to no GVHD (only a slight skin rash) and therefore never had a need for steroids. He went off immune suppressants in November and continued to improve from that point forward. The number of oral medications was gradually reduced as well. Last week he began a series of vaccinations (baby shots!) including diphtheria, whopping cough, tetanus, pneumonia, hepatitis & polio. Our visits to the clinic are on a monthly basis now and soon we will be turned back over to our oncologist at the hospital. He will return to the BMT clinic on an annual basis from that point forward.

If you have a bone marrow transplant in your future, my advice to you is to be strong, stay positive, connect with your support system and pray to God. I am happy to share more details with you if you want to contact me.

Thursday, August 05, 2010

New clinican trial for T-PLL

I just received the following email. Let us hope this trial also produces significant advances in treating T-PLL!

Good afternoon,

I am contacting you since we recently opened a new trial for T-cell PLL at Stanford. I was made aware of your website from a patient who thought sharing that we have this trial open might be helpful. It is for patients with relapsed or refractory disease and treatment will be with velcade. All of the details are on

Holbrook Kohrt, MD

Here is the web page for recruiting:

Study of VELCADE for Relapsed or Refractory T-cell Prolymphocytic Leukemia