Bad News, Good News

So far, we don't have a stem cell match for my transplant. We do have a web sit that anyone between 18 and 60 can apply for a kit to be placed on the registry. There is a $52 fee, but I have some precious Wheatheart friends that are not eligible and have generously offered to pay for someone that would like to join the registry. You can't do it just for me, but you would be put on the National Registry and I am included in that search. If you are interested, just go to Be the match.com. It gives a brief summary of what is involved...no needles, just a cheek swab. Woohoo!!! I know a lot of you have asked about this, so I hope this helps. Hugs to all!

We made it through the first round of chemo with minimal side effects at this point. Now, I am on saline and then we will do the Ari-C for three continuous days on Monday. My fatigue level is super high, so if I drift off or don't make sense, we'll just blame it on the chemo. Thank you to everyone for your offers of support and help. Tony mowed our yard and taught Hunter how to plant the garden. We have tomatoes, peppers, onions and potatoes. He is going to be such a great little gardener. This will short as I am wiped out. Hugs to all!

The Vampires are Here

My counts are already low enough that I have to have two units of blood today. That didn't take long. I still feel wonderful, too wonderful to be in here! I do have to mask up when I have visitors, so just use the foam on your way in and that gives me plenty of time to get the mask on. No one under 12, that means our little Hunter, no fruit or fresh/dried flowers. As always, my nurses are the best and doing a great job. Thank you for all of your visits, calls, cards and especially the prayers. There are several of you that I know specifically pray at certain times of the day for me. One is in his morning shower (love it), another at 4:00 p.m., and another at 8:00 p.m. It is so wonderful to have so many prayer warriors. Love you all! Hugs!!!

Home Away from Home

I am finally settled into my room at the hospital. Spent most of the day in a semi-private room while mine was being "prepared." Prepared for what, I'm not sure, but it sure is nice to be unpacked and settled. It looks like I have three days of two kinds of chemo with four days off, followed by three more days of the final chemo. Then, we wait. They are still having some trouble finding a stem cell match for me, so please keep that in your prayers. We can't do anything without that. Our church has really been supporting us in this next endeavor. They had a special prayer session last Wednesday night before church, then the Elders, Preachers, and their wives came to the house Friday for prayers. Finally, Easter Sunday, all of us on the prayer list and our families went up front for congregational prayers on our behalf. I don't think there was a dry eye in the house. As hard as it was, it was one of the most uplifting experiences that I have ever had. Thank you to each and every one of you that keep praying. That is what it will take to get this done. Well, supper just arrived.

Kansas City, Here we Come!

I will try to give a condensed version of our flying trip to KU Cancer Center. We met with a great team, the team that will be with us for the next five months. We will start with a triple chemo treatment at St. Francis on the 13th. I will be in the hospital for 5-6 weeks while the chemo does its thing and we get in some kind of remission. The first two weeks usually aren't too bad, so visits will be welcome. Someone will let you know when I am in isolation and can no longer receive visitors.
Next, we go to K.C. for two days of intense counseling with a psychiatrist, psychologist, social worker, four doctors, numerous nurses and the finance guru. Then, I get seven more days of chemo with one day off before the transplant. If all goes well, I spend the next three weeks in the hospital in K.C. before being transferred to Hope Lodge, the home for cancer patients. One entire floor is dedicated to transplant patients. While I am there, I have to have a 24-hour caregiver. This can be anyone that can "read" the changes in me. Good luck with that! I will be at Hope Lodge for at least two months before I am ready to come home. By that time, the hospital visits will probably be every three days instead of every day.
As of this time, they do not find a match for me, but they are still trying. Big prayers needed here!
I know this is a lot of information. We are still trying to sort through it all. I was just reminded by a precious sister that "God can move mountains." I know this is true and he has certainly worked miracles in my life over the last six months. I'm not sure what he has in mind, but I'm ready to "git 'er done!" Hugs to all of you!

Bump to a Mountain

We went back to the doctor today (04-06-09) for the results of the bone biopsy. First of all, the rash is still a mystery. It is not on my face, but has spread over the rest of my body. It looks like it tried to connect the dots and has become one big mass. Doc did start me on an anti biotic along with the steroid, so we'll see what happens.
The big news is that the leukemia is back, worse than ever. In three weeks, my blasts have grown from 3% t0 42%. As if that wasn't enough, I have not one, but two kinds of leukemia. We just couldn't believe it. We are headed to K.C. first thing in the morning to meet with the stem cell surgeon and to be placed on the National Registry for transplants. None of my four siblings were a match. Unbelievable! The doctor at the KU Cancer Center will set up the protocol for chemo treatments, which will probably start on Monday, the 13th. I will have to have my Hickman surgically put back in some time later this week.
That is probably enough information for now. Please, please keep us in your prayers. I don't know what God has in mind and it is awfully hard to understand/accept all of this. I'm not always as strong as I seem, so please pray, especially when I can't. Love you all! Hugs!

Prayers needed

We hit a bump in the road. I was truly doing wonderful, so wonderful that we were able to dye Easter eggs with Hunter and take him on his first ride behind the tractor on a sled. Then, I woke up Wednesday with my face completely covered in a rash. I went to the doctor on Thursday and my doc was gone, so another prescribed some steroids and scheduled a visit on Friday. When Dr. Dakhil saw me, he couldn't figure out what in the world was going on. By then, it had covered my entire body. I look awful!!! He decided to do an unscheduled bone marrow biopsy, with a little extra morphine. Apparently, a rash is one of the first signs of Leukemia. I didn't have one with the initial diagnosis and they were surprised. No one ever said that, of course, so I didn't know. Anyway, now we are "patiently" waiting for the results of the biopsy, praying that it is something else. The "good" news is that I also have vomiting and diarrhea, which usually does not go with the rash. I never thought I would be thankful for vomiting and diarrhea. Please keep us in your prayers. Hugs!