why, why, why

It still baffled me why - after clear blood, bone marrow and spinal fluid tests since June 2006 - that Andrea had an AML lesion show up in the corpus callosum (white transverse fibers connecting the cerebral hemispheres). The stem cell transplant doctor said blood in the central nervous system has a barrier against toxins in the circulatory system. So, the chemo Andrea went through before did not rotate around the brain. But, there was a possibility that a drop of blood during the DIC collapse in December 2005 had escaped in that area and is now showing up in this pesky little lesion. (He called this a unique case again.)
Well, "day 2 radiation" transpired as normal and the bone marrow biopsy went well. Thanks to Betty, Andrea got to all appointments and Betty made them a delicious meal since a biopsy with sedation requires no eating after midnight before the procedure. It will be at least a week before we know the results of the bone marrow biopsy.
We all know how valuable prayers are as we also pray for you and yours.

First radiation

Andrea had the first radiation Monday, 11/05, for about 30 minutes. She wore a special mask and plans are to have the 30 minutes sessions every day until November 28 except on Saturday and Sundays, and she gets to skip Thanksgiving Day. Then we went to the Stem Cell Transplant doctor. He needs a bone marrow biopsy which will be today, Tuesday 11/06, after the radiation treatment. He also said the plans for chemo have been changed. After radiation Friday, Andrea will receive the first dose of chemo.
Thank you for your prayers.

pictures - not the smiling kind

The doctor tested the Ommaya reservoir Thursday and Friday. He inserted a dose of isotope (i.e. radioactive fluid) and then had a scanner take pictures to track the flow through Andrea's body at 3 3-hour intervals on Thursday and 2 3-hour intervals on Friday. Needless to say, it made the day drag out long. Next step is radiation for the rest November.
Andrea is strong and we all are encouraged by your prayers.

Long day...

After a 12 hour day at MDA, Andrea did well through the Ommaya Reservoir placement into her right side-front skull. As anethesia wore off, she described it like having a knife inserted into her head but by the end of the day; it was more like a hatchet. Appropriate for Halloween, huh???? She has pain meds for tonight, so we're hoping it is better by morning.

Her eyes were bothering her after procedure, so the ophthalmolgy doctor checked her out and she was okay.

She also went to the Radiation Unit to have a special form-fitting mask made for her face to protect areas of her head while radiation is zapping the AML. Plans are to start radiation on Monday to the whole brain at a moderate dose for 2 weeks, then approximately 1 week for a more intense dose to the lesion site. The radiation doctor was reassuring and dispelled my fears with years of clinical trials and best practice under his direction.

Tomorrow and Friday we go back to test the Ommaya Reservoir to make sure it will function as they need it to.

Thank you so much for your prayers.

Faith is being sure of what we hope for (Heb.11:1)

I am sad to be starting the blog again because it means that the acute myleoid leukemia (AML) is back. The Brain and Spine doctor thought it might be lymphoma from the first signs of the biopsy from Andrea's right callosal lesion (1.2 x .9 x .2 cm) in her brain, but it came back AML after days of breaking it down to identify it.
Wednesday, 10/31/07, Andrea will have a Ommaya Reservoir implanted on the top right side of her head that will transport chemotherapy to the brain. But before she gets any chemo, the doctors will administer radiation at intervals for 3 weeks. Then the chemo to the brain begins. When that is over, Andrea will go back to her original Stem Cell Transplant doctor for what he calls a "boost" bone marrow transplant like she had before just to insure that it is not anywhere else. So far, it has not shown up in her blood or spinal fluid.
We have so many wonderful friends and relatives on both sides of our families who also lift up awesome prayers. We thank you so much.
Love to all,
Kathy

Final Good News

Hello to all,

I'm writing this blog because it will be the last entry. I wanted to let everyone know that the results of my bone marrow biopsy came back perfect! I'm still 100% donor cells and I never expect anything different from now on!! Thanks to God.

As for my eyes, I'm still seeing double, and I don't think that's going to change. Instead of two seperate images, the images I see overlap. It drives me crazy sometimes, but I have honestly gotten used to it and the idea that this is how it's going to be. I keep praying that one day our technology will be so good that I can fix the problems. J read an article saying there might be some crazy things happening in about 5 years with stem cell transplants for the retinal tissue. If that's the case, I might have a chance for normal again.

I now have a pair of driving glasses which has helped me gain a little independence. They are a pair of wire frames with no prescription. Their sole purpose is to hold a binocular above my right eye....super cool. When I'm driving, I "spot" with the binocular if I need to read a sign. Sometimes I get funny looks from the people driving next to me and when I'm at stop lights. These are the people I like to mess with. It's fun for me and it leaves them totally confused! My driving obviously comes with a lot of restrictions. I only drive during the day, and I don't go over 45 mph. Needless to say, I'm limited to doing several things, but it's leaps and bounds from a year ago.

I thank each of you from the bottom of my heart for all of the prayers. It's the only reason why I'm here today. I had to close out this blog sometime, but be on the lookout for my book that I'm going to start writing in August. Seriously, if it takes me five years to write it, it will be done. How else can I spread what God has done to a large audience? I'll give you a sneak peak to the end quote:

"Amazing grace how sweet the sound that saved a wretch like me. I once was lost, but now am found. Was blind but now I see."

With love,
Andrea

More Progress

One month after her left eye surgery, Andrea was examined by Grand Rounds again at Texas Children Hospital. Her left eye has straightened out, just like the doctors expected it to, but she is still seeing an overlapping image from her left eye. At least it is better than the double image that she was seeing before. We've also been back to the U of H Eye Institute where Andrea got what she calls her "really cool" (not!) eye glasses that she uses only when she drives. After a year and a half, she is starting to drive again on familiar streets and is doing well.
Praise God for another step forward in the healing process.
Thank you so much for your prayers.

Happy Birthday

Today is Andrea's 1 year old birthday. A year ago today she received her sister's marrow which saved her life and gave her a fresh start. When you look back at all the little things that she has gone through since, you realize that her life itself is the most important thing we have. Unfortunately she has to receive a bone marrow biopsy this morning at 10AM, so pray for her to be without any pain. What a wonderful birthday present? I don't know how see does it, but she takes everything like it is no big deal. Get me in there and I would be fighting and screaming. Don't forget the other new post below that covers the eye surgery she had last week.

Still Working On It (Perseverance)

On April 30, the specialist operated on 3 of the 6 left eye muscles to try to eliminate double vision. Andrea's left eye would tend to drift left and he wanted to align it straight to get rid of double vision. She said this last eye surgery is the worst of all eye surgeries to recover from. When she took off her patch, her eye was swollen shut. After a few days when she could open it, the eye was blood red and the conjuctiva (the outer clear layer that protects the eye) was swollen and raised over her iris. Because of this, it felt like there was something foreign in her eye at all times. Now, her eye is feeling better but the redness is still there. Instead of two separate images, now the objects are overlapping each other. The eye tends to look inward now, but by the end of the month at the Grand Rounds again with all the doctors, her surgeon anticipates it will staighten out more. We just pray that the overlapping images will come together competely and that her eyes will align properly.
Again we appreciate your prayers. Words cannot express how much your prayers mean to us.

Finally...

After a month of conversing with the Texas Children Hospital doctors and team, Andrea plans to have surgery on her left eye muscles to alleviate double vision in that eye on Monday April 30. She has been doing well with her new eyeglasses this past month, but it is easy for her to overdo and strain her eyes which has caused headaches.
We are asking you to remember her in your prayers, as we also think of all of you.
Thanks for checking the blog and thanks for your prayers.

Unique, once again

I have postponed updating the blog until we met with the third eye specialist as we are trying to get Andrea to regain as much sight as possible. The cataract eye doctor referred us to a Texas Children's Hospital eye muscle specialist. He said Andrea's case was quite unique. That is what we have been told by numerous doctors since November 2005! After receiving records from 7 eye surgeries plus the Low Vision Clinic evaluations, next month this new eye doctor wants Andrea to come in for a consultation with 5 other doctors plus "the Chief" in order to assure that she receives the best path forward. I am totally amazed when I go to these specialists and observe what they are doing to help so many people. I had never known there were so many sight impaired little children until I walked into this place. Amazing. My prayer life has certainly grown in this experience. Please keep the prayers coming. Miracles do happen!

In progress

I'm reminded of the bumper sticker, "Don't give up on me, the Lord isn't finished with me yet".
We had a good report from the Bone and Joint Clinic. Everything was normal on Andrea's soft tissue and muscle MRI. The broken ribs in her back are healing and she no longer has a cold so she does not cough to irritate those bones.
The visit to the Low Vision Clinic was also successful. Andrea got one pair of glasses that she uses to read the computer. The bifocal glasses will not be ready until next week. We just keep praying day by day that the retina swelling continues to go down and her sight improves.
We appreciate the encouragement from every single person. You all are dear to us. Thank you.

Hallelujah day!

I was surprised when Andrea did not jump up from the eye doctor's chair and dance a jig when he examined her eye and told her "Andrea, you do NOT have to put dilating drops in your eye anymore". It was a moment of anticipation and relief, though. He is pleased with the progress of the last operation, and said he hoped for more improvement with time. This doctor is very conservative and very, very good, so when he says there is more hope for improvemnt, I believe him. Patience. And time, and prayer.
We also went to St. Luke's today for a MRI on the soft tissues and muscles on Andrea's back. The bone and joint doctor will give us his last verdict before sending us back to MDA, but he did tell us from the bone scan that Andrea has broken 3 ribs in her back, so that is the most likely cause of the pain she has been experiencing. She is on estrogen, calcium and vitamins. All that will also take time to build up her bones that seem to break as easily as I break a toothpick.
We ask for your prayers as we continue to pray for all you, too. We are in this healing process together!

Back to baby steps

Andrea's eyes have been dialated since her last eye surgery, January 23. She has 1 1/2 more weeks to go before she sees the retina doctor again, and maybe by then he will let her quit dialating her eyes. He's the expert, and we trust him. We have had gorgeous sunshine this past week in Houston, but with dialated eyes, it is hard to enjoy it. She is seeing a bit clearer each day.
Also, Andrea's back pain has gone from irriating to a lot worse. She quit physical therapy and saw several doctors this past week. St. Luke's will take a total bone scan Wednesday to try to figure out if it has to do with her bones, or just her muscles. Then, back to the doctor a week from today to see what he thinks.
Her cold turned out to be the RSV virus that a lot of babies get due to not having immunities built up in her system. Since her bone marrow transplant wiped out all bodies' defenses, Andrea can start getting the baby MMR and other baby shots on her one-year-birthday-from-transplant, May 10, 2007. Nothing like starting over, right?!?!
Despite the aches and pains, Andrea is still a joy to be around. Zeus helps by keeping us laughing.
Thank you all for your prayers and we'll continue to pray for you all too.

Keep On Keeping On

Andrea saw the cataract doctor on Monday and her retina doctor today. Both doctors are pleased with the way the surgeries went. Healing is a slow process, though, and will take weeks or months to know just how the retinas will settle down. The steriod shot has not totally absorbed, so Andrea still sees a haze, plus she has to keep her eyes dialated at least 3 more weeks, which is a real obstacle to knowing what she is seeing. The scan showed considerable shrinkage of the swelling on the right retina, so we were very, very pleased about that.
Andrea has been going to physical therapy for several weeks and the muscle pain in her back is getting worse. Plus she has a very bad cold that makes her feel rotten all over.
We appreciate your prayers, so we will "keep on praying on" for you all, too.

The cloud is lifting

This is the 6th day after surgery and Andrea told the doctor that the cloud now looks more like a haze that she is seeing through. After his usual thorough examination, he noticed that she was reading the letters that she could see faster than before. That is a good indication that the membrane peel took away some of the blank spots she was experiencing before. It is still going to take time for the rest of the steroid to absorb, swelling to go down and the retina to settle. She sees the doctor again in 10 days. In the meantime, she is going to Physical Therapy at M.D. Anderson to strenghten her back and feet. It is unreal how much the body can get de-conditioned in 61 days and how long it takes to try to regain strength.
Thank you for continuing to check the blog and pray for Andrea's sight. It means so much to her and all of us. We continue to pray for you too.
Love to all,
Kathy

One step back but hopefully more than 100 forward

Since it had been less than a week at St. Luke's for Andrea's left eye cataract surgery, she had to bandage up her left eye. Then after surgery for her right eye Tuesday, she was a 'sight to be seen'! Everything is blurry for her now since it took the doctor nearly 2 hours to peel off scar tissue and put in a steroid injection to try to minimize swelling that has persisted for a year. He said it would be a week for the steroid to absorb and even longer for the retina to settle down. Nonetheless, we are prayful and hopeful. We take tasks day by day, and Andrea has a great attitude attempting to deal with everything. It is a great comfort to know you are praying. Thank you!
She sees the doctor Monday for an interim assessment.

Awesome Marathoners!

Linda and Ann finished the marathon! They are the two in the purple jerseys. We caught the picture of them between mile 8 and 9. They still had smiles on their faces! We are so appreciative of them. Thank you for your dedication.

Andrea's Jan. 17 cataract surgery went as the doctor planned, but when the patch was removed Thurday, she is seeing crooked and double. The doctor said the left eye could/should/maybe work itself out in the next 3 months, but if it doesn't, there are more surgeries they could do. In the meantime, Andrea is gearing up for a retina surgery on Tuesday Jan. 23 on her right eye. At present she can see 20/70 near vision with this eye. Her retina doctor is striving to get Andrea driving again with her right eye. I feel like a broken record, but please pray for this surgery Tuesday. Everyone has been so wonderful to pray. We have prayers of thanks for you, and including your life struggles.
Love to all,
Kathy

Cheers for the "Marathoners"

We are so grateful for Linda Jarnagin and Ann Locke. They have been preparing for Sunday's Chevron/Aramco Houston Marathon for months. Both Linda and Ann raised their goal for their generous donation to the Texas Gulf Coast Leukemia Society which provides so much support to the fight for lives and research for a cure. Also, we give a special thanks to all who donated to this worthy cause. We need to pray for good weather because the forecasters are not sure when the wintery blast will hit Houston. Linda and Ann said they are taking all kinds of weather gear. We have confidence they will make it through! A local TV channel will cover the event Sunday morning and the online site is www.chevronhoustonmarathon.com where you can go to "athlete alert information" to follow their progress. These are two very special ladies who are driven by Andrea's struggle for life and health, and we appreciate them so very much.

Better Christmas this year!

We received the final reports from the bone marrow biopsy with an "All Normal and Merry Christmas" note from M.D. Anderson. What wonderful news!
Andrea goes to the retina doctor this week and the doctor who removes cataracts just after the beginning of the year. The left eye cataract surgery is scheduled for Wednesday, Januaray 17, 2007. Progress is slow but we are still hopeful Andrea will be able to drive again. Please keep her eyes in your prayers. God has answered so many of our prayers. Praying and believing are so important to us all.
We wish everyone Merry Christmas and Happy New Year.