Monday, June 30, 2008
I was recently given the gift of 1000 paper cranes from the foreign language students at Novi Meadows School (Hannah's school). They were given with a wish to make me well. It is a Japanese custom to give 1000 hand folded paper cranes to someone who is ill to wish a quick recovery. Our family feels very honored to receive this gift.
We have become friends with a Japanese family in our neighborhood the Nishigaki's. Etsuko has been working for many weeks to create 1000 paper cranes with the same wish of good health. She has made over 220 so far. Her circle of paper cranes hangs next to the cranes
from the Meadows students.
We are so appreciative of all of the support from the community!
Tuesday, June 17, 2008
Yes, the Steroids are working! I just got done taking 4 days worth and basically all my visible lymph nodes are normal size! It is simply amazing that these little pills can basically wipe out months of swelling.
I now get a few days off of the Steroids and then start back up for another 4 days worth. Our goal is simply to blast the cancer out of the lymph system. I will repeat this 4 day on/off cycle two more times.
We are making progress! And my overall health is improving! :)
I have to do this until mid July when we will evaluate my overall (Bone Marrow, Blood, Lymph Nodes) progress.
The ultimate goal is to get into the stem cell transplant process and cure this ugly beast of Leukemia.
I look normal and feel good! I am having a good start to summer and hope that each of you are enjoying yours!
Take care and thanks for checking in,
Friday, June 13, 2008
Do I look Green like the "Incredible Hulk"!
You probably guessed it and yes I am now on Steroids!
Not your common garden variety but Heavy Duty Man Size Steroids for the next month!
The goal is to lower the lymph nodes swelling and raise the platelets. In the process I can become:
- Huge like the Hulk :)
- Not able to sleep
- Large not hulk variety but wide (fat)
- etc., etc.
I am happy to be on Steroids because they work and work fast!
We met with our OSU (phone) and UofM (visit) doctors and they want to do this for a month.
After that we are going to re-evaluate and decide what to do next...
This is all good news if you weren't sure. Also, we get to take our vacation in mid-July!
I am getting close to transplant time and speaking of that we have expanded the search, so a donor is probably within the next two months.
On the Family Front
Hannah had her 11th birthday today and is very excited about all her presents.
All the kids are out of school and Summer is here! :)
I will keep you posted on the "Hulk" process and the transplant stuff!
Thanks for checking in...
Friday, June 6, 2008
You might have guessed but a big part of dealing with a disease is waiting.
- Wait for a Doctor's Appointment
- Wait for a Test / Procedure
- Wait for the results
- Wait for insurance
- Wait for your prayers to be answered
What I have been learning throughout this process is Patience!
It is very tough especially being the type of guy who goes nuts if my computer doesn't start fast enough. I live in a world where everything is fast and getting faster. So, it is very difficult to learn, let alone practice, patience from where I sit. But, that is exactly what I have to do.
So, here is the update!
We did not meet with the OSU doctor this week and we do not have an appointment for next week. He is in the process of putting together a plan for me which involves talking with the UofM doctor. We will learn more on Monday!
On the Stem Cell Donor Matching Process we have not found a match. We are still looking but at this point we have to wait for someone to join the registry who matches me. (Someone from Novi would be great!)
My Health, well it is not getting better but seems to have plateaued. Except for me platelets which keep setting new personal lows. Pray that I don't hit 10 or below or I will start getting infusions of platelets. Otherwise, from a way I feel I still go to work and go to the kids activities but I have to avoid large groups of people. (Immune system still low) I have been trying to get more exercise and have been riding my bike a few times each week. I really don't have a lot of extra energy but am able to do normal activities within reason.
My Mental Health, I feel happy and supported by God, Family, and Friends. It is really strange but this time around I have not been fearful but have trusted God throughout this whole process and he has really taken the burden off my shoulders. All of your prayers and help has made a world of difference.
So, I want to ask you to keep praying and to have a great weekend.
Thanks for checking in,
Tuesday, June 3, 2008
Well, we got mixed news yesterday!
The Good News!
The bone marrow biopsy showed that cancer has been reduced from 70% to 10% in the bone marrow. Since, I have had only 2 chemo rounds to reduce the cancer in the marrow we are very happy!
The Not So Good News!
Although, the current chemo I am taking is working in the marrow it is not working in the lymph nodes. So, what to do! Go Back To OSU (Ohio State University).
We are being encouraged to participate in a clinical trial being conducted at OSU. We will be meeting with our old friend, Dr. Byrd within the next week to discuss it. So, good bye U of M hello OSU!
Overall I am still feeling OK! Over the past weekend I did experience some low grade fevers but it turned out to be nothing. Of course to be safe I was given chest x-ray, blood tests, and antibiotics. I did not realize that people who's immune system is completely screwed up, like mine, can have a low grade fever with no other symptoms and die because of a rampant infection. So, we take any type of fever pretty seriously now.
My platelets are still low but the bone marrow biopsy showed that due to the chemo my manufacturing capacity has been lowered. Over time I should start producing more. We just need to watch it.
I realize there is a lot here but I thought everyone would like to know what is going on!
My spirits are high, my sister, Patti, is in town visiting, and my family is doing well. Overall, I am a happy man and trust in God to provide.
Thanks for checking in,