Good News!

Mary Kathryn cleaning some of her treasures from Vero Beach




Dan and Bob at the Cancer Center


Dan had a non-eventful morning at the cancer institute this past Friday. He enjoyed having his father with him and the oncology nurses were running at max speed. I spent the morning having my hair done (quite a luxury!) and I met up with the boys after lunch. The minute that I walked into the office, I found out that Dan was in a patient room with his neuro oncologist. I ran back (feeling quite guilty that I had taken the morning for myself) only to see them all shaking hands and laughing. Apparently, they had just sat down for an unscheduled meeting moments earlier (providence at work).

We had a lovely talk with Dr. Nick about Dan's treatment routine and the next few steps (barring any adverse reactions). It was wonderful and encouraging. As we were winding down Dan asked Dr. Nick what he thought of the last MRI (we hadn't had a formal meeting over it for various reasons). Dr. Nick just beamed at Dan. He told Dan that it looked great! He even went so far as to say that it looked "squeaky clean!" Dr. Nick is not the type of doctor to just give us false hope. He is very optimistic, yet utterly truthful. If Dr. Nick says that Dan's last MRI is sqeaky clean, then it was. YAHOO! What does this mean?

It means that (a) the chemotherapy is effective and there is no visible cancer growth, (b) the cancer is being held in a non-reproductive state, or (c) Dan has been miraculously healed by God. Time will tell, but this is good news. We now know that Dan's current discomfort is probably from chemo (not cancer) and that his pain is possibly a lingering effect of the brain surgery, not tumor invasion. It also gives us time to work within the boundaries of Dan's particular strain of cancer. If we find out that one of the 3 chemotherapies allow the tumor to regrow, then we have a good chance of stopping it again with one of the other two chemos.

Dan's immune system is taking a big hit with this chemo and so we are still laying low for the time being. He will finish this course of treatment on March 14. We will have another MRI at that time to see if the CPT-11/Avastin combo worked, and we will fly up to Duke on Easter Sunday. Two weeks later we will begin the CCNU chemo. This will involve a pill dose every 6 weeks for a total of 2 pill doses. It sounds easier (and due to the lack of IV dosing it will be much more convienent). He will have to take the pills at the oncology office to make sure that he doesn't have an allergic reaction, but then he will be home to recover for 6 weeks. How does that work?

Believe me, I asked how one pill dose every 6 weeks could possibly be as effective as IV chemo every 2 weeks. Apparently, each chemo is gauged by how it effects the cells verses how much your body can tolerate berfore the toxins kill you. Different chemos hit your cells at different stages in the cellular life-cycle. The pill form of chemo that we are taking in the next round is much harder on the bone marrow. The CCNU attacks the younger versions of the cancer (and healthy) cells and has a longer "effective zone" as the cells mature. Therefore, if you take it too close together you would destroy the bone marrow completely as there wouldn't be enough young cells to mature into adult/fully-functioning cells. The current IV chemo is tough on the white blood cells and any fast growing cells (like Dan's digestive system). So, each chemo is tough in its own way. That is why we are doing this form of treatment. We are attacking Dan's cancer from every possible vantage point and due to Dan's strong body, the doctors are able to use the most powerful and effective treatments available.

As for now, we are winning the fight! Dan is sleeping late this morning (a minor miracle thanks, in part, to my parents who are watching our children today). Dan and I couldn't be more content and energized by our meeting with Dr. Nick. Bob, Dan's dad, flew home yesterday. Boy, was it nice to have him here. It was nice to know that Dan was in loving hands while I was able to take a little vanity break (never underestimate the effects of a good hair day). I know that Bob needed to hear some good news as much as Dan and I did. We are all walking on cloud nine right now.

It is amazing to live such an emotionally raw exhistance. I feel everything so intensely and deeply. I can no longer shield myself from the pain that I see in others. Each visit to the cancer center I meet another family suffering the painful effects of cancer. This week I met a lovely woman in her 30's with GBM. She was diagnosed in November and has just finished her chemo/radiation regimen. I met her as she was being sent home without treatment due to failing veins. Her veins could not support the IV line that would allow her body to receive chemo. She will have to have a port put in next week before she can begin her chemo. There is a real sense of sorrow and loneliness/disconnect surrounding many cancer patients. I was able to give this woman a hug and I have added her to my ever growing prayer list. I am so priviledged to be able to look these men and women in the eyes and say that I understand how hard it is to face this disease. It is a blessing to be able to look suffering in the eyes and not feel uncomfortable. It is a priviledge that is not unique to those of us who are suffering.

I am so comforted by your prayers, gestures of love and listening ears. It is not a trite and little thing. Offering prayer is wonderful. There are moments and days when my spirits are low and forming a coherent thought is almost beyond me. Those are the times that I know that my dear friends (some of whom I haven't even met, yet) are petitioning God on Dan's behalf and I can rest in the peace that comes from living in a community of believers. I draw strength from knowing that if I stumble that one of you will lift me up and help Dan and me (and all our family) to press forward. I fervently pray that there will be a cure for this and for all cancers. I also know that God has the power to intercede at any time and change all of our lives forever.

Praise God for Dan's "sqeaky clean" MRI!
Love,
Leah (and Dan)

Round 4 of 6 this Friday!

Dan and Dr. Morris (Hugh) going hunting.

Ross and Dan on the class field trip to Sea World

This week will mark the 1/2 way point in Dan's first cycle of his new chemo regimen. We will take our children to my parent's house on Thursday, Valentine's day, and Dan will receive his fourth round of chemo the following day. This should be a peaceful week. Dan's dad is flying in for a few days and he will be able to spend Friday with Dan at the cancer center. It will be nice to have Bob here.

Dan was feeling well enough to go hunting with his friend, Hugh, this past weekend. Hugh is one of Dan's former clients, and has been a dear, true friend and advocate over the past 7 months. I wasn't worried for a minute knowing that Dan was in good company for a restorative weekend away. (It didn't hurt that 1/2 of the men hunting were orthopedic surgeons--I figured that the odds were pretty good that Dan would return safe and sound.)

Both of our kids were sick this past weekend (in fact, they are still home today). God's providence is evident in all things, though. I was able to get the children on antibiotics 24 hours before Dan returned home! Hooray!!! Now, if I can only get them well enough to return to school things will really be on track.

My mom sent me an article from the Vero Beach newspaper about a man who had a quick wedding on a hospital helopad after being diagnosed with GBM. He decided that he wanted to formalize his long-time relationship with matrimony now that he was facing the "end of his life." It was written as a feel-good story and talked little about the diagnosis. I was amused and saddened by the concept that this man and woman had waited so many years to enjoy the true commitment of a sacred covenant with one another. For those of you who don't already know, I will give you a brief synopsis of what having a GBM entails. I will also take a minute to give you our personal "take" on this disease...

GBM is also known as Glioblastoma Multiforme, it can be a primary or a secondary brain tumor. We happen to have the primary (a level IV--the fastest growing). If left untreated, GBM patients usually die within 3 months. With treatment the odds increase to a median survial rate of 12 months. The average GBM patient is between 45-70 years old. Most patients suffer from seizures, motor loss, memory loss, mood and personality loss, headache, nausea, loss of cognitive functioning and visual loss. These are the ugly stats and facts that we were given seven months ago.

Dan and I were devastated. We were overwhelmed with the little hope that was offered. Like the man who married (in the above-mentioned article) we grasped at ways to try to put our lives into perspective and derive meaning from the chaos. Since then, we have begun to hope for more than just time. We have begun to build new dreams for our future and we have found doctors who believe that a cure is just around the corner. We have faced the potential for death and have decided that we would rather hold onto the truth of life. We know that God loves us and didn't give this disease to our family. Rather, God knew Dan before he was born. He knew that Dan would face this awful disease. He created each of us uniquely to be able to live with this trial. He gives us the strength to face and find joy in each new day. He gave us special family and friends that were created to help us through this trial. In the end, whenever that comes, God will welcome us home. It is our fervent wish that we are able to look Him full in the face and he will say to each of us, "Well done!" Until then, we depend on all of you to help us keep our feet firmly on the path of hope.

I just wanted to give you all the opportunity to know how amazing my Dan is. When I was told his prognosis, I was all but defeated. Danny's strength and determination are infectious. He leads our family with true grace and courage. As we approach Easter I ask for your prayers of praise and thanksgiving that we have not become a statistic. I know that many of you have been praying continually. Thank you. We live on those prayers and we grow in them. Please remember our extended family in your prayers. I think that in many ways it must be harder for them, being away with those ugly statistics hanging around. We are doing amazingly well and we are incredibly grateful for where we are today.

Lots of love,
Leah (and Dan)