Transplant consultation today

Hi all, it's Ali typing this entry.....
Kancho and I traveled to Chapel Hill today for our consultation appointment with Dr. Serody at the Bone Marrow Clinic. Given that the session included 3 1/2 hrs of information and I am exhausted, I will share the "short" version :-) Dr. Serody would like to see Kancho proceed with completing cycle 3 part B of the Hyper CVAD regimen here locally followed by another PET scan. The reason behind this is that they want to make sure the remaining pelvic tumor has reduced in size as much as it can before moving onto stem cell transplant. Stem cell transplant can only be administered one time and as long as the tumor is not gaining in size, there is no rush to do it sooner. The doctor described the transplant tx as a "seal the deal" kind of option, however there are little clinical outcomes to define cure rate for Kancho's rare type of lymphoma. Ball park is about 30% success rate from stem cell transplant for similar non-Hodgkin's lymphoma patients. The doctor estimates that we will enter phase 1 of the transplant process (collection of Kancho's stem cells) in September and then phase 2 (actual transplant) in October where we will be hospitalized in Chapel Hill for at least a month. This overall timeline for transplant could vary depending on Kancho's recovery time after cycle 3 concludes, and the response his tumor shows over the next 3 months. We met several UNC hospital staff who will be involved with us from now forward, and all of them were very supportive. Kancho is scheduled for outpatient chemo tomorrow which will conclude his cycle 3 part A tx. We will observe his blood counts for the next few weeks and update you as we approach another hospitalization at NEMC for part B. Thanks again for all your concern and prayers. This will be a long process and the sustained support we have received from family and friends has been amazing. Keep it up!

Luv,
Ali

Coming home today........fingers crossed!

I have had an uneventful hospitalization this week. Things went pretty smooth and if all goes as planned I should be discharged this afternoon. I will have completed cycle 3 part A of the initially prescribed Hyper CVAD chemotherapy regimen. We are headed to the Lineberger Comprehensive Cancer Center at UNC Hospitals this Thursday for our consult appointment with my transplant doctor (Dr. Serody). We should find out more about when we will be staying there for the 6 week treatment process. Ali has had a childhood friend Nicole in town for a "girls weekend" and Kylee has been having a blast with them getting toes painted, hair fixed and playing dress up! I will keep everyone updated once we return from our appointment Thursday.

Love,

Kancho

Philippians 4:6,7

‘Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding will guard your hearts and your minds in Christ Jesus.’

Acts 4:30

‘Stretch out your hand to heal and perform miraculous signs and wonders through the name of your holy servant Jesus.’

Back in for chemo treatment 5/19/09

Lots of clinic visits this past two weeks. I think I have been up there daily whether for count checks, to get platelets or blood transfusions, or for a neupogen shot (helps to jump start my white blood cell production). It has been nice to have Ali's godfather John here for the past few weeks to help out. He is traveling back to Florida as I write this. I am scheduled to be admitted to CMC Northeast this coming Tuesday for cycle 3 part a. The doctor wants to keep me on the Hyper CVAD chemo regimen until UNC Hospital's bone marrow transplant unit is ready to admit me. We have our consult appointment in Chapel Hill with Dr. Serody on 5/28/09 where we will likely learn a whole lot more about the estimated 6 week stay there for my transplant. As you can see I allow Kylee to sleep with me some before I have to leave the house for hospitalization. I'm a sucker for her puppy dog eyes! Thanks for all your continued prayers.

Kancho

May 10th 2009

Ali's birthday and Mother's Day were reasons to celebrate this weekend and value our time together. We attended the NC Research Park "Village Fest" Saturday evening where there was food and live music to enjoy. My favorite local band "Super Glide" took the stage at 7pm and Kylee danced with a friend near the stage for hours. Sunday morning Kylee helped Ali fill my med box which can take an hour or more, but Kylee takes great pride in her role to nurse me back to health. Hope everyone has a restful Mother's Day weekend.

Love,

Kancho, Ali and Kylee

Mixed Emotions

We left our Thursday doctor's appointment with mixed emotions. We were informed that the PET scan taken yesterday indicated all but one tumor had disappeared. Unfortunately the remaining tumor is stubborn and has not decreased in size since January. I was originally 11 centimeters long by 5 centimeters in diameter. It is now 5.5 centimeters in length and 3 centimeters in diameter. Since the current chemo regimen is not strong enough we have to move to stem cell transplant or the tumor will continue to grow. This means we have to go to UNC Chapel Hill for a consult appointment, then a 6 week stay for the transplant to be performed. Basically the chemo regimen they administer is so strong it eradicates your bone marrow where cells are born. They plan to perform autologous stem cell transplant which means Kancho's own cells will be harvested and then injected into him after the heavy duty chemo treatment. He has been in the clinic daily since discharge getting outpatient chemo meds, platelets, and red blood cell transfusions (1st photo). Stress can lead to strange things like "gown dance night" where Kylee and BaBa put their hospital gowns on and dance around while mommy films it. For some reason the video would not load so a photo will have to do. We are hanging in there and awaiting a call from the transplant case manager who will follow us through the whole transplant process. They will not allow too much time to pass before stem cell transplant occurs so we expect to go to UNC Chapel Hill within a couple weeks. We will keep everyone posted a usual via blog.

Love,

Ali and Kancho