October 3,2010 update

I am doing great. I still have GVHD in my eyes and can't drive yet but I feel good. PTL. I was able to go out this week for a couple of hours and it was great to get out of the house. I just pick the times when its overcast a bit and my eyes do so much better. Of course I have a driver.

We will be going to the Light the Night walk in Atlanta on Oct. 9th. Nat has organized a team and they have raised a great deal of money for the Leukemia and Lymphoma Society. This organization is great and helps so many and does so much research. We'll let you know how much her totals are after Saturday night. A special thanks to everyone who donated. God bless you!!!!!!!!!

I have a 3 week break from clinic and infusions providing everything stays the same. Lets continue to pray that it does.

Thanks again for the visits, cards, calls, and the prayers.

Charmaine

Update September 6, 2010

Wow can you believe it has been a year since transplant? I looked back on my blog entries today and we've come along way. Only through your prayers and us trusting the future to the Lord have I made it this far.

I am really doing good just a few minor issues going on but nothing I can't handle. I believe the IVIG infusions are beginning to give me more strength as well as steriods. Lets just continue to pray that the infusions will quickly do their job so I can go out in public a little more. I did take a field trip to Sam's on Friday and saw a friend Diane West. It's nice to see people you haven't seen in a long time. We go to church with the West family. Of course I went in the middle of the day when no one was there.

I've become a little OCD since I have to stay in so much. I not only have canned every tomatoe that I could get out of the garden, and frozen every pod of okra, I get up at 3-4 oclock some mornings(steriods) and count them and give the kids and Alicia a state of the union address on the garden. My address is alot more interesting than the Presidents.

I hope everyone is looking forward to fall as I am. I love this nip in the air. I can actually go out in am and pm to look over the garden. Sam is so good to me he takes wonderful care, to make sure I have everything I need and want. He's very protective of me not to let the sun get on me. This sets off GVHD immediately.

I will post just once a month now unless something new is going on.

Hope you have a great labor day!!!!!!!!!!!!!!!

Charmaine

August 20, 2010 Friday

A quick update on my progress. Since last post I've had many fevers, lowgrade thank God. So we know there is a little infection somewhere. My immune system isn't strong enough to fight them off, so once a week for the next 6 weeks I will have IVIG infusions at Emory Clinic. After these hopefully it will be back to just once a month.

These infusions don't hurt, it just takes all day to do them. And the headache that comes after is the problem for couple of days.

Deana took me today and Stefanie took me last time. It's so boring for them I know, but they never complain.

I can't really go anywhere much for fear of catching a bug, but I really enjoy being home and seeing kids and grandkids all the time. Wow how they bless me and make my day.

Sam and Anthony planted a wonderful garden this year and even though I couldn't get in it I have been able to freeze and can veggies. Reminds me of a child when we would go to the cannery at the Dallas High School with my mother and grandmother. That was so much fun, so I have reflected alot this summer.

I would like to request prayer for two ladies who are fighting this disease also. But are having a difficult time, Tami Payne and Stephanie Rakestraw. You can find them on the caring bridge website.

Thanks again for all your prayers, cards and kind deeds.

Charmaine

July 30th update

I haven't posted in a while so I just wanted to update you on a few things.

I am doing pretty good, really having to stay inside because of heat and GVHD of skin and eyes. I am still having issues related to radiation and chemo. Hopefully when I come off immune suppressants I will see a big turnaround. Can't wait for that.

My immune system is almost non existant so therefore I go to clinic once a month for next year for infusion called IVIG and respiratory therapy to keep me from getting fungus in my lungs and hopefully the IVIG will jump start my immune system.

Fatigue is a huge factor in this journey but I can handle that if just not in pain or sick.

God has been so good to me and my family. Thanks for your continued support my friends.

Charmaine

JULY 7, 2010..................... UPDATE

It has been a while since I have updated the blog. As I said before, if all is going well I will not update it everyday.

Charmaine is generally doing well 9 months post transplant now. She is still having lots of irritating issues healing from the radiation and chemo. The Dr. said her body won't heal until she can come off of the immune suppressant drugs. We hope to start reducing them on the next visit on the 23rd of July.

We just got back from a week in Florida with all of the kids and grandchildren. She was not able to go out in the sun any but did enjoy having all there. Spent a lot of time on the balcony looking at them at the pool with binoculars.

She is still taking a brigade of drugs and will be for a long while.

Some days she feels pretty normal. Some days she is still very tired but not as bad as earlier.

Thanks again to you all for your support during this very long journey.

By the way, somehow we are getting lots of unknown and unwelcome comments on the blog. Some in a foreign language are porn. DO NOT OPEN THEM. I fear some may be dangerous.


Sam

Charmaine Home at 7 pm May 18th

Charmaine is home now, resting well. Very tired and sleepy after the hospital stay.

Has bad sinus infection and common cold. Treating with tons of antibiotics.

Will go back to Emory Friday for check up.

Thanks for you thoughts and prayers.

Sam

May 18th.............Update

Still at Emory as of 4pm hoping to come home this evening. The lungs are free of pneumonia but she has has a bad sinus infection that can be treated with antibiotics.

She is very sleepy due to not having her normal rest time and loss of sleep last night.

Is feeling much better today.

Sam

May 17th.........Back in Emory Hospital

Charmaine was admitted back in Emory today.

She has had numerous issues for the past month but got a bad cold last week that worsened. She was having trouble breathing and coughing really bad so the Dr. wanted her in to do what he called a 10,000 mile check up.

They are concerned about pneumonia and a fungal infection in her sinus. They will also be checking her blood for any other infections.

I am so very relieved that she is there to get checked.

I will keep you all posted on her progress in the next few days.

She is an amazing trooper in this journey. Always worried about putting someone else out!!


Sam

Friday April 23, 2010

We have just returned from Emory Clinic and had a good report on blood counts. However, do you remember in the last post I talked about GVHD. Ok it caught me. I have severe case in my left eye, and mild in right eye. Stefanie took me to cornea specialist yesterday and we have lots of meds. Damage has been done but Dr. Hayes thinks he can repair it with proper meds.

Dr. Khoury also ran PCR/FISH test today. This will tell if any leukemia cells have come back in blood and marrow. Pray that I will be clear.

My iron level was tested again today also. The results will come in next week on all of these. I will post and let you know how things are going.

Thank you from the bottom of my heart for following my blog and praying for me.

So many of you have been so amazing with your cards, phone calls and emails. Friends are so special and you really realize it in times like these.

God is so good and I want everyone to share in the joy that he provides for us if we will just accept His Son, Jesus Christ as our personal Savior. Yep just that easy. The walk of life may not always be easy but you will never be alone. That is a wonderful truth, and oh so comforting.

I have to be limited where I go, therefore have not been able to return to my church. I was able to attend for 3 Sundays then I got sick. That took care of those trips. But I long to return to worship with my friends.

I will write again soon
Charmaine

Tuesday April 20th

We haven't posted in awhile, but everything is going great! I am posting for myself today which is unusual, but I justed wanted to let everyone know how much I have appreciated the prayers and support for me and my family.

Can you believe it has been a year since I entered Emory Hospital and started treatment for this dreaded disease. And it has been almost 8 months since transplant. I still have a few issues going on and of course GVHD is always lerking around the corner. However, Dr. Khoury checks me out every month and adjusts meds accordingly.

God has been so faithful to us in so many ways I can't begin to name them all. Sometimes we go through trials to test our faith and sometimes to just bring us closer to him. Which ever we need always pay attention and Praise Him for the good and bad. That is hard to do, I know!!!!

Tomorrow will be mine and Sam's 33rd anniversary!!!! It is wonderful to be married to your best friend, soul mate, and great Father of your children. I thank God for him and especially in these last 2 years, what a trooper he has been. A caregiver like you wouldn't believe. Sam I love you so very much!!!!

I'm going to clinic on Friday and will give report after I get back. Big Praise is that my iron level has already come down alot.

Charmaine

Saturday March 27th

Charmaine continues to do well except for fatigue. The Dr has cut her steroids back and she is certainly feeling it. Some days she is pretty normal and other days she sleeps most of the day. Just no energy.

We only go to Dr now every 6 weeks.

Sam

Saturday March 13th....Update

We just arrived back from our 1st long trip since the transplant process began. Had a wonderful time with no problems. Charmaine even got to get a pedicure and manicure for the 1st time!! She was so excited.

The Dr. increased her Sprycell to the full strength of 50mg. She is having no side effects from it. He also decreased her steroids slowly weaning her off of them. He said her graft verses seems to be in check right now. Hopefully it is over.

We only go back to Emory every 6 weeks now!!!!!

All is very well now for her.

Thanks for caring about her so much.

Sam

March 2, 2010.....6 months Post Transplant!!

Boy do we remember where we were 6 months ago. Can you believe 6 months has past since her transplant!!!!!!!!!!!!!

Charmaine is doing fantastic now. She has very mild fatigue on some days but is mostly normal with little side effects from the meds she still has to take.

We are about to take our first trip away from home this weekend. We are going to Fla. with Anthony and Alicia to their place in Ozela down close to Crystal River for a few days.

We have a Dr. appointment Friday for a routine check up. I think the Doc will reduce her steroids a bit since all her skin rashes have gone.

Again, THANKS to all of you for your continued support and prayers for her.

Sam

February 26th................Update

Charmaine continues to be doing extremely well. Her days now are very near normal. Occasionally she will have some fatigue but not often.

She is tolerating all of the meds well with few side effects.

We only have to go to Emory every three weeks for Dr. visits.

Her hair is growing like crazy. It is about 1 inch long , salt/pepper, and feels like mink. I think it is going to be beautiful.

Thanks for all of your prayers and continued support for her.

Sam

February 13th..........Update

We went to Emory Friday for a routine Dr. visit. All is just fine with Charmaine now. She still has excessive iron deposits on her liver but is taking a new drug called Ex Jade to correct it. It will take some time, maybe a year to go away. The side effects of the drug are very mild and livable.

Charmaine was home for the snow. I can't imagine that beauty without her seeing it here.

The Dr. told her she could go to church again now. She is so!!!!!!!!!!!!!!! excited. Been trying on clothes all evening getting ready. We will go tomorrow morning for the first time in over a year.
Just can't sit close to a large group.

We now are going every three weeks to the clinic.

The only new thing she has going on is a cramp on her left side in the lower hip area during the night sometimes. Can't figure out exactly what is causing it. Fells like in the muscle not the bone which is a good thing. She is still taking steroids which can cause some joint problems over a long use.

Her daily routine is very near normal now. It is unusual for her to even take a nap now during the day.

Will try to update you all weekly on her progress.

Thanks for all the prayers for Charmaine.

Sam

Feb 2..................5 Months post transplant!!!!!!!!

Today is Charmaine's 5 month anniversary after the stem cell transplant!!!!!!!!!!!! Boy how time flies with her home.

She is doing extremely well now. For the past week she has been feeling as if she has never been sick. Little or no side effects or fatigue. She has cleaned and reorganized every cranny of the house.

We did find out from the MRI that she has excessive iron deposits on her liver. The Dr. has ordered a new drug for her called Ex jade to reduce this and take it away. We are waiting now to get it. It has to be ordered by the Dr and comes in the mail??????

Her hair is about an inch long and a beautiful salt/pepper color and feels like velvet. Much thicker than her hair was before.

We only have to go the clinic every 2 weeks now for check ups.

She has started her Sprycell meds (the chemo pill to prevent the leukemia from reoccurring) and is tolerating it very well.

Thanks for all your continued prayers and concern for her.

More later...................

Sam

January 24th......Graft Verses Host Disease

We went to the clinic Friday for her routine check up. Generally Charmaine is doing good. All of her counts still are in the normal range except for the iron level. Normal iron count is around 20 but hers is 2000. It is normal for the iron count to spike after transplant but usually comes down. There is a new med that lowers your iron count that she will have to start taking but before she can start they have to do an MRI on her liver which we will have done Monday.

She also had to stop wearing her contacts because of dry burning eyes and some matting. We have an appoint with an eye Dr. at Emory on Thursday.

She started taking Sprycell again Saturday. That's the chemo pill to help prevent leukemia from coming back again. It is making her nauseated and weak. Hopefully these will go away as she gets used to taking this again. She will have to take this the rest of her life. This drug will lower her white cell count for a while so she is being bombed with antibiotics to prevent infections during this time.

She still has splotchy red spots on her skin on her back and arms. also, she still has some ulcer like burns in different areas from the radiation and chemo treatments. These are treated with oral meds and topical lotions.

She has had a nagging hacking cough for 2 or 3 weeks. No infection but quiet annoying for her.

All of the above problems fall under Graft Verses Host Disease the Dr. said. He said she has chronic GVHD. This is her body trying to fight off the new stem cells she got. It is normal to some degree and even favorable but can be deadly if left unchecked. Sometimes people 2 years after transplant have some problems surface due to this.

Will update you on the liver results. We were a bit concerned when he ordered the MRI on her liver.


Sam

January 15th

I haven't updated lately but Charmaine is doing good now. She is almost over the side effects of the chemo and radiation had on her body. She still has some fatigue but it is minor now because she is still taking steroids. She developed a very bad cough and head cold but the antibiotics have nearly stopped that.

Still having to live in a bubble for the most part for a while longer. Getting a little stir crazy having to stay home all the time.

Her hair is about 1/2 inch long now and is a beautiful salt/pepper color and feels like velvet. Her hair came back black instead of brown. They say a hair color change is not uncommon after transplant.

Her finger nails and toe nails are healing back slowly but ok. She lost all of them which is not uncommon.

Thank you all for your continued prayers and concern for her.

Sam

New Year Day 2010

She insisted on staying up last night to see the new year in. At times in '09 she wasn't sure she would get to see it.

The Dr put her back on steroids due to a mild rash and they are making her jittery and hard to sleep. The cough he said was just a virus she has picked up probably from the kids. Gave her some new meds to help that. Still coughing pretty bad but feels ok.

The results from the FISH test came back negative. This means they can see no live leukemia cells in her system.

Happy New Year to all.

Sam