Cc's Journey

October 3,2010 update

2010-10-03T18:43:00.001-07:00

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

2010-09-06T12:20:00.000-07:00

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

2010-08-20T21:19:00.000-07:00

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

2010-07-30T11:00:00.000-07:00

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

2010-07-07T06:22:00.000-07:00

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

2010-05-18T20:03:00.000-07:00

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

2010-05-18T12:43:00.000-07:00

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

2010-05-17T17:32:00.000-07:00

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

2010-04-23T12:42:00.000-07:00

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

2010-04-20T18:33:00.000-07:00

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

2010-03-27T05:17:00.000-07:00

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

2010-03-13T06:45:00.000-08:00

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!!

2010-03-03T14:19:00.000-08:00

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

2010-02-26T05:13:00.000-08:00

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

2010-02-13T17:54:00.000-08:00

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!!!!!!!!

2010-02-02T14:30:00.000-08:00

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

2010-01-24T04:25:00.000-08:00

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

2010-01-15T04:54:00.000-08:00

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

2010-01-01T05:27:00.000-08:00

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

December 30th.......Update

2009-12-30T08:28:00.000-08:00

Charmaine has been doing very well but has developed a nagging cough that has me concerned so we are going to the clinic today for an unscheduled visit to get it checked. I am sure they will xray her chest especially since she had the blood clot earlier on.

She has been around the grand kids some and might have picked a bug of some sort???????

I will post you all later on the outcome of this visit.

Have safe, happy, and prosperous new year.

Sam

Christmas Day 2009

2009-12-25T06:25:00.000-08:00

Merry Christmas to you all. She is doing great. Cooking sausage balls right now about to go and see the grand kids' Christmas stuff.

Thanks to all of you this year for your prayers and support through the long journey we made.

God is faithful and has poured out His blessings on us.

This is my first Christmas without my mother. I miss her more than I thought I would now. She died last Jan 15th.

Looking forward to a wonderful new year and wish you all the same.

Be safe and happy.

Sam

December 21st ............UPDATE

2009-12-21T05:26:00.000-08:00

Charmaine is doing very well now. She is over most of the side effects of the chemo and radiation. She went shopping with Natalie yesterday and was out for about 4 hours. This was her 1st real trip outside the house in about a year. She still has to wear the mask and exercise care but was so excited to get out. Her hair is about 1/2 inch long now. It is a beautiful salt/pepper and feels like mink it is so soft.

We go back to the clinic this Wed for check up.

Thanks to all of you this year for your care and prayers. It has meant more to us both than you could ever know.

Sam

Sunday December 13th.......Update

2009-12-13T04:59:00.000-08:00

This past Friday was day 100 for Charmaine after transplant. That mark is a big deal in the transplant circle. Her Dr told us that the first 100 years would be the hardest in our lives and for a transplant patient usually the first 100 days is for them.

She is feeling well now but still has fatigue during the day. Seems to be on a pattern now of sleeping till 9 or 10, up till 12 or 1, then naps for 2 hrs.

Some days she has mild nausea but not bad and does not last long.

Her hair is growing like crazy. It is now about 1/2 inch long. It looks as if it will be a beautiful salt/pepper color. I hope she will leave natural and not color it. Just has more character to me.

We go back for lab work and Dr appointment on the 18th.

Still having to live in a bubble for the most part. Not sure how much longer.

I've started cutting firewood and selling it, so I leave her for a few hours each day for the 1st time since all this began. Can't hardly stand not being here with her.

Will post you all on any changes.

Sam

December 3rd................UPDATE

2009-12-03T17:50:00.000-08:00

Charmaine is doing well now. We went to the clinic Wednesday for normal blood work and Dr. appointment. All of her numbers were very good. The Dr. is starting to reduce her meds slowly weaning her off of them. We found out that her donor cells are 100% now which means the engraftment is successful at this point.

She had a bad rash on her face that is now gone with the meds the Dermatologist gave her.

Her hair is growing like crazy now. Maybe a 1/4 inch all over her head!!!!!!!!!!!!

She is felling well now but has to nap 2 to 3 hrs. during the mid day. Other than that she is just fine.

We are still living in somewhat of a bubble and will be till after the 1st of the year I suppose. That's OK as long as she is home and feeling well.

She was in Emory Hospital 91 days this year not counting clinic visits and ER visits.

We go back to the Dr on the 18th . She will get a PCR and FISH test to check details of her transplant again.

More later.................. Thanks for caring.

Sam

Tuesday Novenber 24th...PIC LINES OUT!!!!

2009-11-24T17:50:00.000-08:00

Today at the clinic Charmaine got her pic lines removed from her chest. For months 3 lines have had to be flushed daily and a new dressing put on once a week to prevent infection. She was very fortunate to have never had an infection, which is very common with an open line going into your skin.

Now she can sleep in different positions and take a shower without a plastic bag tapped to her chest. All of you reading this that have been through this know about these things.

She has developed a rash on her face that has consistently gotten worse. We saw a Dermatologist today and got meds for it. He is sure it is a reaction to the Sprycell . Hopefully this will go away in 2 to 3 weeks. She looks like a teenager with severe acne.

She is having a good normal day then a day of fatigue. Hopefully the fatigue will lessen as time goes on. This is a very normal side effect of the transplant. If any other families of transplant patients are reading this, please be very patient with them. The fatigue is completely overwhelming. Don't think they are just being lazy, it is very real. It's like you are so tired you can't hold your eyes open. Don't expect or demand too much from them. This is normal and part of the healing process. They will get back to normal in a while. They are under enough stress without us hassling them about being tired.

I do hope you all have a wonderful Thanksgiving. Take a few minutes alone and consider your blessings.

More soon.........................

Sam

Friday November 20th.....Clinic Visit

2009-11-21T03:16:00.000-08:00

We went to the clinic today for a Dr visit and to have her pic lines removed. Her red blood count was a little low and a transfusion is needed. We will go back Monday for 2 units of blood. Since she needs this, they postponed removing the pic till Tuesday. The Dr said the low blood count is normal and caused by the Sprycell she is taking.

The Dr pulled her off Sprycell, the blood pressure med, and adjusted her cellcept and prograph for a while to see if the meds were causing her nausea or if it graft verses host disease. It appears that it was the meds because she is feeling great since he pulled the meds. She'll be off Sprycell till after Thanksgiving.

Her hair is sprouting out like crazy now. She is starting to look like Woodstock(the little bird on Charlie Brown) with the sprouts.

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

Sam

Wednesday November 18th...Back to Emory

2009-11-18T16:50:00.000-08:00

We were to go to the clinic Friday but the Dr. had us come in today because of the rash on her mouth and chin. He changed her meds around and eliminated 2 of them and took her off Sprycell (the chemo pill) for a few days to see if the nausea and throwing up are drug side effects or graft verses host disease setting in. We are just sure it is the drugs. If it keeps on after altering the drugs, she will go back on steroids to circumvent the GVHD.

We are to call late tomorrow and tell them how she feels. If still sick we go back Friday.

Good news is that the first of next week she has her 3 pic lines removed from her chest. No more flushing everyday with heparin and changing the dressing once a week. Finally she'll be able to take a shower without a plastic bag tapped to her chest!!!!!!!!!!!!!!

Will post you on her tomorrow. She had a very good day today with no throwing up. Just mild nausea, not a lot of fatigue. We were at Emory most of the day.

Please pray for her dear friend Alecia Griffith. She is at Douglas General being checked for chest pains. They are keeping her overnight doing testing to find the problem.

Thank You for caring enought to continue to read her blog.

Sam

November 17th Tuesday Update

2009-11-17T03:07:00.000-08:00

The side effects of the new meds and coming off the steroids are taking a heavy toll on Charmaine now. Yesterday she hardly got out of the recliner and was so very sick much of the day, so nauseated.

We are going to try changing some of the times she takes some of the meds to see if that helps.

We go back to Emory this Friday for a routine check up. I will post you on the results of that visit.

Hoping she will get to feel better for the holidays.

Sam

Thursday november 12th......POST TRANSPLANT SURFACES

2009-11-12T16:09:00.000-08:00

Everything we read about post transplant always mentioned severe fatigue. Until last Friday we thought Charmaine was going to be an exception. The Dr. told us Friday that when she came off the steroids she would be begging for them back. He is very near right.

This week she has been very tired most all day sleeping near 1/2 of the day. Because of the Sprycell she has started she has had nausea, headaches, and some mild diarrhea. The way she feels now is very comparable to the weeks after the chemo treatment.

These will take some time to go away. The fatigue could last 6 months to 1 year.

Also, she is loosing all of her finger nails and toe nails due to the powerful chemo and radiation she had before the transplant. This is a normal side effect.

We are still very grateful that she is home and on the road to recovery.

Count your blessings each day. Tomorrow all could change.

Sam

Tuesday November 10th

2009-11-10T04:12:00.000-08:00

As I said earlier, last Friday Charmaine got 2 flu shots, was taken off the steroids, and started taking Sprycell (the chemo pill to prevent leukemia from coming back). Since then, she has been tired most of the time, has had some nausea, and headaches. We are hoping these side effects won't last long.

The Dr. told us to expect fatigue when the steroids were stopped.

She is still doing quite well compared to some of the others. Living inside the glass ball and not being able to go out much will probable last a few more months. We hope she can be around the family for Christmas.

We only go back to clinic now every 2 weeks.

Sam

Sunday November 8th...Fatigue

2009-11-08T17:45:00.000-08:00

When we saw the Dr. Fri. he took her off the steroids, gave her 2 flu shots, and started her on Sprycell (the chemo pill to prevent leukemia from reoccurring). Since we started these changes she has had fatigue most of the time. We are not sure which of the changes caused it.

The good news is that her face swelling is going down daily, due to the steroid reduction.

She is having some leg cramps not severe. These may be due to the Sprycell.

We are still very grateful she is home and is doing so well and is leukemia free!!!!!!!!!!

Sam

Friday November 6th......Lab Results

2009-11-06T18:39:00.000-08:00

Today was a day of great anticipation for us. We went to the clinic to get the results of her FISH and PCR test which would reveal if any leukemia cells are present in her body.

When we went in the PA told us she tested negative in all aspects!!!!!!!!!!!!!!!!!!!!!!!!!

That's the best news we could have gotten.

The Dr. took her off all the steroids today and started her back on Sprycell which is the chemo in pill form to prevent the leukemia from reforming. She will take this for the rest of her life he said. Without it there is a 50/50 chance of leukemia coming back.

The steroids having been giving her all the energy she has had. Without them the doc said she would start to feel fatigue which is a normal side effect of the transplant for a long while. We are hoping she will not have it severely.

He also said that the pic lines would come out in about three weeks. She has three lines going into her chest now that have to be flushed with heparin everyday. They have a clear bandage over them with a bio patch to prevent infection. It is a real pain to take a shower and not wet them. This will make her life much easier without them.

We only go back now every 2 weeks. She is still doing much better than the others that went through this with her.

When you see no new post on the blog, you may assume that she is doing well. I will post you for the next few days as she starts on the Sprycell and is steroid free on her progress.

Thanks again to you all for caring so much and for all the prayers and kind deeds you have done for us.

God had been so very merciful to us. To Him be all thanks and praise.

Sam

FRIDAY OCTOBER 30th

2009-10-30T10:14:00.000-07:00

Hello everyone, I wanted to report a wonderful week to you. And not going to clinic today, WOW. I feel lost. I have been there for the last 8 months or in the hospital. It is so nice to feel free for awile.

Good news also the dogs have a new home. The folks that got them have 4 children, and when they picked them up yesterday, the kids were so excited. So another answered prayer.

I need you to pray for Erin and Camille. They are my co-transplant friends that are having a rough time. Ann also was with us in transplant but is doing great.

I want to go and do more than the Dr. will allow and it's cramping my style just a bit. Since I can't I just cook and our grocery bill is rising. It's fun and my kids truly love mama in the kitchen again.

Thanks again to everyone who follows the blog, prays for me, sends cards and always offers words of encouragement to our family. I love you all so very much. Continue to pray for next visit with Dr as we will get critical information on how my donors blood is taking over my body, and make sure no leukemia cells are hiding.

Charmaine

Saturday October 24th.......

2009-10-24T03:47:00.000-07:00

We went to Emory clinic yesterday for lab work and routine Dr. visit. All of her blood counts continue to be in the normal range and her platelet count is rising. All seems good.

She is feeling fantastic with normal energy and appetite.

We now only have to go every two weeks.

Our next visit , we will get some critical news. They did a pcr and a fish test this time. These will reveal if she has any leukemia cells still in her and also show how the new cells are developing in her body. We are in high anticipation of this news.

Her face is still quite swollen from the steroids but they have been cut down even more now.

To our friends who went through the transplant at the same time, we think of each of you everyday. A reunion would be nice after you all recover.

Thanks for caring about her enough to continue reading this blog.

Sam

(By the way the dogs still need a home I got them back!!!).

Monday October 19th......Need Your Help

2009-10-19T10:49:00.000-07:00

First of all Charmaine is doing ok. Fatigue has set in on her today. Not sure if it is because of the reduction in steroids or just an off day. We have been expecting some fatigue.

I need your help. I have 2 wonderful lab puppies 8 months old. Both females one yellow, one black( clara bell and raven). I need to find a good home for them. It is too risky to have them with Charmaine's immune system so low. Bacteria or a scratch could be serious.

I think they are full blooded but I have no papers. I do not want any money for them just a good home. They are sisters and have never been apart. I want them to stay together.

They are totally safe with babies and small children. Nats little boy Reece drags them by the ears. They are very playful. I keep them out in a pen but let them out daily to play. The country would be better for them.

Let me know if you have any prospects.

I have put them on craigs list so hurry.

Sam.....................678-409-6325

Saturday October 17th

2009-10-17T09:11:00.000-07:00

Well guys this post has been long time coming. IT'S ME CHARMAINE. I MADE IT TO THE OTHER SIDE OF TRANSPLANT AND I PRAISE THE LORD. I wanted to post myself before now but just didn't have the brain power. I think I'm clear minded enough now.

I want to thank so many PRAYER WARRIORS for following the blog and lifting me up to OUR LORD AND SAVIOR during these last 8 months. There were times when I was so sick I couldn't even pray, just the name of Jesus would come out of my mouth. But I knew he knew what I needed and also the HOLY SPIRIT reminded me of all my family and friends who had my back in prayer. SO AGAIN THANK YOU!!!!!!!!!!!!!!!!!!!!

Then we come to the cleaning and dusting of my house several times by family and church members. THANK YOU. And what about all the food so many of you brought and gift certificates to Red Lobster. How sweet was all this!!!!!!

Cards and letters to lift our spirits and words from your heart to mine that I will never forget.
God bless you for taking your time to do so. Your cards would come just at a moment I needed to read what was in the card. That's God's timing not ours.

I was able to share my testimony so many times at the hospital with the nurses and other patients. That is what this journey was all about. I know it isn't over yet and I have a long way to go but I've got the fight left in me to finish it.

And what about my husband and children!!!!!!!!!! Wow talking about a family pulling a load. They jumped in head first and got organized with a schedule to help me. We had lots of funny moments at the hospital, Stefanie might disagree with that. I think she caught the worst of everything. If I acted crazy it was always with her, seeing things that weren't there, and going places I didn't go, oh yes I put her through it. She would just laugh it off and keep going for another 24 hours without sleep. Natalie would stay on Tuesday and Friday night and most of the time seems like I would act pretty good. God knew she needed a good night sleep with the 3 kids she has someone might just be up at any time. We had a chance to spend some quality time together though and for that i'm thankful. Deana stayed some with me also but most of the time anyone who knows Deana knows she was shuffling kids for Natalie and Stefanie. What a blessing from God she is and has been to me since the day she was born. Then we have KC, guys can't stay at the hospital much but he did visit, but mothers and their sons have a special bond, he could not stand to see me in pain or sick. But let me tell about KC, not a day went by that he wasn't praying and crying out to God to make his mama well. Many messages came from him saying, Mom I have been on my knees on my back porch asking God to take it from you and give it me. Wow that's powerful.

And Sam I couldn't imagine going through this without him. He was doing whatever it took to make me feel safe and secure. The stress this put on him has broken my heart. But hopefully we are getting back to normal. I love him more than life and appreciate him more than ever. You really begin to see how important family is when your faced with what our family was faced with.

I am doing great, my first 100 days will be up in Dec and I will get a little more freedom. I feel so good that I forget I'm sick. Sam quickly reminds I can't be around crowds and gets me in check.
The flu season is here and my Dr. worries for me. So I must be very careful.

I will post again and I love all you guys!!! Charmaine

Wednesday October 14th

2009-10-14T03:12:00.000-07:00

Charmaine continues to be doing very well. Her hair is not sprouting back yet. The chemo and radiation on the last treatment will take longer to get out of her system. The Dr. said about December. Maybe she'll be singing "All I want for Christmas is a full head of hair".

The steroids have made her face swell a bit. I tease her about looking like a chip monk. This will pass as the steroids are slowly phased out.

We go back Friday for check up. I will post you on the results.

Sam

Saturday October 10th

2009-10-10T04:11:00.000-07:00

Yesterday we went to the clinic for lab work and Dr. visit. Her blood counts are still remaining in an acceptable range except for her platelets which were a bit low. The Dr. said this was normal and they should rebound. He is continuing to drop the steroids every week weening her off them. They make her jittery and a bit anxious.

Charmaine is still doing remarkably well. We saw some of the other patients there at the clinic and none are doing nearly as well as she is. About the only problem she has is an occasional leg cramp usually at night.

Thanks for caring and praying for her.

Sam

Thursday October 8th

2009-10-08T02:53:00.000-07:00

Charmaine continues to be doing very well. Almost on a normal routine except for still having to keep her distance from everyone for a while longer.

We had our first official date out to eat Tuesday night. Went early to Sam and Roscoe's and got in the corner. She was thrilled.

We go back to the clinic tomorrow for normal lab work and Dr. visit. We only have to go once a week now.

Please continue to pray that the graft verses host disease will pass her by.

Thanks for caring and for all that many of you have done for us.

Sam

Monday October 5th......Update

2009-10-05T07:25:00.000-07:00

Charmaine continues to be doing exceptionally well. This weekend she got to see all the kids and most of the grandchildren. She still has to keep a distance with little or no touching just as a precaution.

She has developed some pain in her knee joints and some leg cramps. We think it is just muscle atrophy from lack of use for so long.

She is doing all of her house work now and cooking.

Her hair is taking longer to start coming back this time due to the powerful chemo and radiation. We hope it starts this week.

When her hair is starting back she looks like Woodstock on Charlie Brown with little stubs. She will be mostly gray for a long time because she can't get any color for about a year.

It is so nice to have her home and for life to feel normal again.

Thanks for your continued prayers.

Sam

October 1st.............DOING FANTASTIC!!!!!!!!

2009-10-01T17:50:00.000-07:00

CHARMAINE IS DOING UNBELIEVABLE. She has near normal energy, normal appetitie, and has little to no side effects from the transplant. It is nothing short of a miracle.

We go to clinic tomorrow for lab work and Dr. visit at 2pm. Down to one a week now.

She is able to get up at 7am and stay up till 11pm now with very little rest.

Even the nurses and Drs. call her the miracle girl!!!!!!!!!!!!!

God does hear our prayers. To Him be all the glory for what He has done for her.

Sam

Monday September 28th.....Good News Continues

2009-09-28T07:02:00.000-07:00

Charmaine had a wonderful weekend. She was able to see some of the kids and grandkids. The Dr. said just to use good common sense being around them but no touching or kissing them yet.

She has been very busy with delayed projects around the house.

We continue to be amazed at how well she is doing. To God be all the glory for His mercy given to her.

The only lingering problem she has is mental. This will just take some time for the chemo to get out of her system. She is also still taking steriods which makes you kinda nervous/anxious feeling and a bit emotional. It still frustrates her to carry on a long conversation with anyone right now but is getting better each day.

We know we have a way to go yet. It seems that day 100 after the transplant is a big mark to cross. The way the Drs. talk about that day it seems that marks being nearly out of the woods on the graft verses host disease which could still surface.

We will not let our guard down on protecting her from catching a germ even though she is felling so good. To risky, so it will be a while before she can have vistors or be in public.

We will be forever grateful to all of you for so many prayers, deeds, cards, and for caring enough just to read this blog.

Sam

Friday September 25th..... Clinic Visit Today

2009-09-25T18:18:00.000-07:00

Charmaine is doing unexpectedly well. She has no pain and no side effects so far. Just a very mild rash around her neck is left. She has almost a normal energy level and a normal appetite. If she had hair and you saw her, you would not know anything at all had happened. Her ability to focus and her nerves are not not quite back yet but is improving everyday. She is sleeping well all night now.

We went to Emory today for lab work and a Dr visit. He was very pleased with her progress and her blood work all looked good. We now only have to go once a week for visits!!!!!!!!!!!!!!!!

The graft verses host disease is still a threat. Sometimes it does not surface for 6 to 8 weeks so keep praying it won't happen at all.

I will keep you posted on the progress. If you see no post, you may assume she is doing well with no changes.

Thanks,

Sam

Please pray for our friends still going through the transplant process. Ann, Erin, and Camille. We have a common thread with all of them.

Monday September 21......DOING GREAT!!!!!

2009-09-21T02:56:00.000-07:00

Charmaine has had a wonderful weekend. She feels very good with no pain. Has just a slight rash itch if she gets hot. Normal appetite.

She must have said a dozen times over the weekend "It's so good to be home". It's funny how we take even the simple things so for granted when things are going good.

We go back to the clinic on Wednesday for lab check and Dr. visit.

We are very grateful to all the nurses on the 8th floor at Emory for the extraordinary care they gave her. We will never forget them.

We are grateful to all of you for your continued concern, prayers, and all the help so many of you have given us.

We are grateful to God for the mercy He has given to her. We have experienced another miracle.

She is almost ready to start talking to you here on the blog.

More later,

Sam

Friday September 18th....3rd Day at Home

2009-09-18T02:46:00.000-07:00

Charmaine is still so excited to be home. She was at Emory for 3 weeks.

She is doing extremely well. Her appetite is almost normal now and her energy level is still good. One of her meds is a steroid that she will take for a short time. When she comes off of it we expect her to experience some fatigue.
She still has a bit of rash over her body. The Dr seems very concerned about it because it can go internal and cause problems.

We went to the clinic for a check on Wednesday and will go again today. I think we will be going 2 or 3 times a week for a while.

She has done exceptionally well with the transplant so far. The nurses called her "The Miracle Girl" because she did so well.

It will take 4 to 6 weeks and maybe longer for any graft verses host disease to surface if it does at all.

Thanks again for all the care all of you have shown for her during this amazing journey.

Will keep you posted on her progress.

Sam

Wednesday...Day 14...CAME HOME TUESDAY!!

2009-09-16T08:11:00.000-07:00

SHE'S FINALLY HOME!!!

Charmaine is so happy to be home. She is feeling great but just a little tired. We knew the fatigue would be setting in soon, and they warned us it would. Her skin looks so much better, and the rash is very light now. The doctor eventually told us that she didn't have true Acute Graft Vs. Host Disease (GVHD) because it didn't have all the right symptoms, just slight Hyper Acute GVHD during her engraftment which cased the rash. So her new cells are definitely making their presence known and are taking off like crazy...faster than most other patients at Emory we suspect.

She is still keeping up with her friends she met at Emory and their progress. Ann, Camille, and Erin. Erin was ahead of Charmaine with her transplant and got to go home last Saturday. We are praying for them and wish them well in their recoveries!

A SPECIAL THANKS TO THE GROUP OF FRIENDS WHO CAME AND CLEANED THE HOUSE ON SUCH SHORT NOTICE TO GET READY FOR HER RETURN HOME! SHE LOVES YOU DEARLY.

Monday...Day 12...packing for HOME!!!

2009-09-14T15:31:00.000-07:00

You think she's ready to go?????

Charmaine is still doing very well...her white blood count has risen to 4800!! If everything stays the same she is coming home tomorrow afternoon! We are all so excited. She is still not able to have visitors, as her home will be like her new hospital room. She is so very limited as to where she can go and the food she can eat. Her doctor is worried about her catching an illness so her exposure must be limited. She described it as her cells are like a new born baby and germs can be dangerous.

Pray that her body will continue to thrive with the new cells and not have any more signs of rejection!

Here is a picture of two special people Charmaine has met and gotten to know while at Emory. One of them had her transplant 5 days ago, and the other gets hers tomorrow! Their names are Ann and Camille. Charmaine would love for you to remember them in your prayers as well. They both have become very dear to her.

Stefanie

Sunday September 13th....11th day after transplant...NOTHING SHORT OF A MIRACLE

2009-09-13T16:26:00.000-07:00

The last post told you how very sick Charmaine was and the pain she was experiencing.

Today she just finished walking 3 miles here on the floor, is dressed in her own clothes (not pj's), is totally disconnected from all IV's, is eating normal (wants pizza), feels fantastic, her white count has risen to 3600 (4000 to 9000 is normal), and best of all........................................

HAS JUST BEEN TOLD WE ARE GOING HOME ON TUESDAY!!!!!!!!!!!!!!!!!!!!!!!!!

Thank You Erin (our neighbor here on the floor already home), you were an inspiration to us both and gave us hope in the low times. I suspect that God has some very special plans for you.

Will keep you all updated.

Thanks for your prayers!!!!! God is indeed in control.

"Sometimes God permits the very things He hates in order to accomplish that which He loves".

Sam

Sweet freedom from all her IV lines!!

Before her new cells from Germany take over she wanted to get a taste of her Paulding County roots with a Dr. Pepper and peanuts!!

September 11...........Day 9 after transplant

2009-09-11T03:46:00.000-07:00

For the last 3 days Charmaine has been so very sick and in extreme pain with the mucositis. She has been on morphine constantly until yesterday. The mucositis seem to be getting a little better so the morphine drip was removed. She has a button she can push when needed. She was able to swallow some liquids for the first time yesterday.

Wednesday she broke out in a rash over her entire body itching like poison oak. Nothing they could give her would stop it. They did not know if it was a drug reaction or graft verses host disease setting in so they took a skin sample and sent it to the lab. Turns out it is GVHD. They started treating it with steroids on Wednesday night even before it was confirmed which is the protocol for that problem. This brought on a new problem with the side effects of this drug. No sleeping, talking completely out of her head, seeing things that are not there, hearing peoples voices who are not there, and forgetting where she is. Someone has to be by her side at all times while this is happening as she tends to tug on all the lines coming in the IV.

Yesterday afternoon late the steroid effects let up a little and seem to be helping the itching some.

It is very rare for graft verses host to appear this early. Usually it is a month or two before it surfaces. That is her body realizing the new cells are there and they start to fight with the old ones. Some of this is normal. It can be mild or so severe it can kill you. We are not sure yet if this is good or bad.

According to the Drs., on the 10th day or so some new white cells should start showing up in her blood. This is the first evidence that the engraftment is starting. When this happens her mucositis will start healing.

She has to have lots of blood and platelet transfusions and will need more until she gets stable.

I think the catheter will be removed today. It's early now so I do not know what has happened during the night. Stefanie is with her. She is relentless in taking care of Charmaine and is as informed on whats going on as the nurses. I don't know what I would have done without her. Natalie helps all she can but has 3 babies at home and is restricted somewhat.

It is almost more than I can bare to see her in this condition but I do know each day we are one step close to getting her well and home again.

I still know that God is always in control and He is always with us but I guess sometime humans emotions take over.

Pray that she will not have GVHD to a high degree and that her white cells build back fast and soon.

I hope this post makes sense.

Sam

****UPDATE****

Charmaine was able to sleep all night! Very much needed sleep for both of us!! The doctors have said they are very pleased with her body's reponse to the steroids and the rash looks much better. The catheter was removed and she has sweet freedom from that. The side effects from the high doses of steroids are still very evident and require us to stay close by her side at all times because she gets very confused and disoriented. Her white blood count is up to 700! It has been 300 for the last 2 days, and zero the 4 days before that. This could be the beginnings of engraftment, which means her new cells are growing. She was able to drink an ensure, and eat an entire packet of oatmeal this morning for breakfast!! Her mucositis is much better. Keep up the prayers that the GVHD will get nipped in the bud so her body will allow the new stem cells to grow.

Stefanie

Tuesday, Day 6.....She's Very Determined

2009-09-08T19:05:00.000-07:00

Charmaine had a very difficult day on Tuesday. Pain was very intense due to the mucositis over entire internal organs. Any mucous membranes get ulcers on them. Mammy (her mother) had a funny saying that she repeated yesterday. She said she had ulcers from the rooter to the tooter. She is on a constant morphine drip with a side button she can push for more if needed. So far she has had 4 units of blood and 2 units of platelets. She has had a reaction to antibiotics for 2 days, thus the red swollen face. She is much better today since they reduced the morphine drip a little.

This is the low point we all knew would happen but could not imagine how it really would be. The good news is that she won't remember hardly any of this later.

The mucositis will stay for 4 or 5 days until her new stem cells start producing white cells to fight the infection.

Another painful issue is the burns on her skin inside from the radiation.

Yesterday they had to catherize her because it was unbearable pain to urinate. Just like pouring alchol on an open wound.

Today is much better. She is trying to nibble and sip some things and is certainly making more sense.

Her temp has been 101.5 to 102.5 almost all day but has just broken.

The pictures are of Natalie and Stefanie walking her doing her laps. She must walk everyday or will get pneumonia very easily. The breathing treatments also help keep her lungs expanded to prevent fluid buildup.

Yesterday at her lowest point, it was more than I could bear to even look at her. Today is better.

The nurses all say she is doing much better than most patients.

Will keep you posted. Wish the next 7 days were passed.

Sam

Sunday...Day 4

2009-09-06T20:31:00.000-07:00

Charmaine is hanging in there, but is still experiencing alot of pain in her mouth and throat from the mucositis caused by the radiation and chemo. It's where the tissue is raw down your throat and all the way through the digestive track. This is completely normal and expected to happen when the old cells die to make room for the new ones. Most everyone here on the 8th floor is going through the exact same thing and feels each other's pain. Us caregivers just smile and nod at each other as if to know we are on the same team.

She is starting to run a low grade fever tonight as the nurse warned us she would. It's another expected occurrence with the process. If it gets too high, they will give her different antibiotics to control infection.

So far, everything seems to be going as planned according to the doctors and nurses, so we just pray the new cells will start growing within a week or so and she can start healing!

Thanks again for keeping up with Charmaine's journey, and for all your prayers.

Stefanie

Saturday September 5...........3 Days after Transplant

2009-09-05T13:12:00.000-07:00

Charmaine has done very well since the radiation, chemo, and transplant. The Dr's say much better than average. The effects of the chemo and radiation are kicking in now. Her throat is extremely sore to the point that she is on a morphine drip continuously to control the pain. This they say is very normal and will go away when her numbers start rising again. This time the nausea and diarrhea were mild and short lived compared to some of the other regiments. So far this has not been nearly as hard as we expected.

The effects of the transplant will take 2 or 3 weeks to surface and maybe even much longer if she has them to any degree. Some people hardly have any, some have them for very long time. This is GVHD (graft verses host disease).

She has still been able to walk nearly a mile everyday.

Because of the morphine she is sleepy and very drowsy all of the time now. She can not eat at all because of the throat but sips on liquids some.

She is still in very good spirits and looks strong.

We don't know how long we will be here. 2 or 3 weeks more I would guess if no complications set in.

Emory almost feels like a second home to me now.

Thanks for all your prayers.

Sam

Day 2 after Transplant

2009-09-04T07:33:00.001-07:00

Charmaine is feeling a little more weak now because of the radiation and chemo she had before the transplant. Her doctor still says she's doing better than expected at this point. Her mouth and throat are getting sore from the old cells dying off due to the chemo...the new cells will soon replenish her loss. Her new cells should start to engraft (grow) in about another week. Please pray that engraftment happens as soon as possible.

She is hanging in there and her spirits are still high. She has continued to walk her laps everyday, though it seems to be getting a little harder. She can feel the power of your prayers...so keep it up!

Stefanie

A little info we forgot to share: We peeked at the label on her stem cell bag during the transplant and saw some words in German underneath...so we think that's where her donor is from. We won't know for sure for quite a while.

TRANSPLANT DONE!!

2009-09-02T10:51:00.000-07:00

Charmaine got her new Stem Cells this morning!!! She's doing great; just still a little groggy from the meds. She has a long way to go, but WOW! what a milestone! The nurses from this floor came in and sang Happy Birthday to her while she was receiving her gift! Watch the video of the song!!
Isn't technology great?? Isn't GOD even greater???

Tuesday September 1st.....TRANSPLANT TOMORROW

2009-09-01T18:22:00.000-07:00

Charmaine is ready for her transplant. It should be in the morning Wednesday September 2nd. The international flight bringing it in was supposed to have landed at 6pm today.

She has felt good the last 2 days with little side effects so far. Mostly fatigue from the meds they give her for nausea.

She has walked almost a mile the last two days. 21 laps around the floor is a mile.

The transplant itself is fairly non eventful. Just like getting a blood transfusion. The big stuff happens before and after. In the next two to three weeks we will know how her body is reacting to it.

Please pray that her graft verses host disease will be mild and that her body will not reject the new cells.

For the record, she is getting a stem cell transplant; not a bone marrow transplant. The end result is the same but the process is different.

We will keep you all posted as this unfolds.

Thanks for your continued care and prayers.

Should happen about 10am.

Sam

Charmaine and her favorite, Dr. Khoury

Transplant moved to WEDNESDAY!

2009-08-31T09:26:00.000-07:00

We were just informed that her stem cells were not going to arrive until tomorrow evening, so they have planned it for Wednesday. They are going to remove the old picc line tomorrow so she will only have the new one with 3 ports they installed last week.

Charmaine is feeling better this morning! The nausea has subsided due to additional meds, and she was able to eat her frosted flakes for breakfast. She has already walked 7 laps, ate some chicken and dumplins for lunch, and when dad just got here they started walking together...he's so happy to see her feeling better.

Keep up the prayers! She has a long way to go, but she is keeping the faith and knows this will all be worth it in the end!!

Stefanie

Sunday...Finished all Chemo

2009-08-30T18:19:00.000-07:00

Charmaine had to receive 2 days of high dose chemo...one yesterday and one today. Yesterday she did great! The pre-meds they gave her worked very well and she felt good, ate, and walked a mile. Today, however was a little harder. They said that her side effects would intensify, and they have.

She has been nauseated most of the day with a few other side effects, but is taking plenty of meds and is resting quietly now.

This process is awesome but complex, and its hard to include every detail...I hope you understand.

Keep up the prayers...she's a fighter!!

Stefanie

Friday...Completed Radiation

2009-08-28T21:30:00.000-07:00

As you know, Charmaine has been getting full body radiation twice a day for 3 days to prepare her body for the new stem cells. Today she finally completed the last two radiation treatments. This was a new experience for her and she had to rely totally on what the doctors told her to expect as far as side effects. The unknown was a little scary for her...you know she's a planner!

The side effects she is experiencing (headache, nausea, upset digestive system, tingling/itchy/stinging skin, swollen facial glands) have been minimal so far. The effects on the first day were slightly worse, but the doctor said that was normal. She is relieved that the radiation is over.

On Saturday, I'm not sure exactly what time yet, she will receive an hour of high dose chemotherapy, then again on Sunday. The side effects are expected to be more intense, but there is a list of medicines they plan to give her before the chemo starts to lessen or pre-treat the effects. We hope and pray that the meds will help and the effects won't be severe. Either way, this hard part is only temporary and will have such a happy ending!!

One of us will try to keep you updated on her condition over the weekend. Nat is with her tonight (Friday) and said she is feeling better and was resting good.

To those of you wondering..."Everybody's Pizza" was great and she thoroughly enjoyed it!

Keep Charmaine and her donor, all the doctors, nurses, and caregivers in your prayers!

From a little plaque in her kitchen at home..."She believed she could do it...so she did." Author Unknown

Stefanie

Thursday August 27th...Update also PM Update

2009-08-27T05:11:00.000-07:00

Yesterday at 630am and 12:30pm Charmaine did get her first 2 rounds of full body radiation. The actual process is painless like getting an xray. In the early evening she did get nauseated some and had a bad headache. The nausea went away but the headache persisted until they had to give her stronger meds to contain it. She slept ok during the night but is still very tired from yesterday. We had to get up at 4 am to leave home.

She has just got back this morning from 3rd radiation treatment. She will have a total of 6 treatments.

I need to correct the info on the radiation on yesterdays post. Each treatment lasts 20 minutes not 2 hours.

We were told yesterday that the transplant may be delayed 1 day because the donor is out of the country which means it could be the 2nd instead of the 1st of September.

Thanks for caring about her so much. I'll keep you all posted.

Sam

7:30 PM Update

She had her 2 rounds of radiation today with little or no side effects so far.

Thanks be to God for his never ending mercy!!

Tonite she and Stefanie ordered a pizza from Everybody's Pizza and enjoyed it. Charmaine said she was going to eat it while she could. She has a wonderful upbeat spirit.

Will update you tomorrow. It is her last day for radiation.

Sam

Wednesday August 26th.....TRANSPLANT PROCESS STARTED

2009-08-26T01:36:00.000-07:00

Yesterday we went to Emory for an additional 3 pic lines to be put in Charmaine's chest. These are IV ports on plastic lines to her heart. They left the original two in so she has five total now.

This morning at 620am she will start her 1st round of full body radiation. It will last for two hours; then another at lunch for two hours. This will happen for three days.

Saturday and Sunday she will get heavy dose chemo. These two things will neutralize her blood cells and platelets making her ready for the actual transplant.

She is good spirits now. We met a man there yesterday that was there for his 100 day check up and had done very well with hardly no real problems other than loosing 53 lbs.

I'll try to post you all daily on whats is going on and her condition.

Getting up at 4 am is exhausting by mid day.

We expect to be there 4 weeks.

Thanks for your prayers.

Sam

Monday August 24th.......Last Full Day at Home

2009-08-24T05:09:00.000-07:00

Today is Charmaine's last full day at home before going in for the transplant.

She has been feeling fantastic. Normal in every way except for sleeping till 10 or so everyday. Her hair is even starting to sprout back.

We have been counting down the days with much anticipation and dread. For at least a month this will be very difficult on her depending on the severity of the ulcers she gets in the mouth from radiation and the degree of graft verses host disease which can cause an array of issues.

Last Friday night at 9pm, somewhere between 60 to 75 of our friends came over with candles in our yard and serenaded her with praise songs. Some drove long distances to come and do this. We will be forever grateful to all of you for caring so much and giving her your Friday evening.

Thank You all for all you have done for us with cards, calls, visits, food, cleaning our house, praying for her, reading the blog, and many other things. We have been overwhelmed by what you have done for us.

Tomorrow at lunch we have to go to Emory to have a third pic line installed in her chest. She has had two for three months but must have three for the transplant. They look like small lines coming out of her chest with an iv receptacle on the end.

Wednesday we will be there at 6am for the 1st round of radiation. She will be there at least 3 weeks to a month.

I will pick back up on daily updates for you on this post.

Please pray for her. Especially that her body will not reject the transpalnt.

Thanks again to all of for caring so very much.

Sam

Transplant Date and Tentative Schedule

2009-08-17T09:32:00.000-07:00

Charmaine is still feeling very good and enjoying her time at home getting prepared for her Stem Cell Transplant! She is ready to git-r-done, but dad is starting to get a little nervous and anxious...and as he says...this is normal. Of course we have been told by many people what to expect and what all could happen, but we know that everyone reacts to their transplants differently..so we are going into this part of the journey with a positive attitude and we have faith that she's going to be just fine!

Here is the schedule we are expecting:

Aug 25...Another picc line will be added to the 2 she already has because they need more ports to access for the transplant.

Aug 26...She will arrive at 6am to start her countdown week of "Conditioning" which are days -5 to -1 and will prepare her body for the new cells. She will have 3 days of full-body radiation twice a day, then 2 days of high-dose chemotherapy. The side effects from these could be nausea, vomitting, diarrhea, loss of appetite, and possible skin irritations like a sunburn. She will also begin taking the immune suppressant meds to prevent rejection of the new cells (GVHD or Graft vs. Host Disease). Please pray that her side effects won't be severe.

Sept 1...This is called Day 0, and is the day she will receive the new stem cells! It will be like getting a bag of blood through an IV. She will then have an additional 2 days of more chemotherapy.

By the end of conditioning and into the first week of the transplant, her white blood cells (WBC) will disappear as well as her platelets and bone marrow, all to be replaced by the new cells when they start growing. When the new cells start growing it is called "engraftment" and this must happen before she can leave the hospital. She will probably be in the hospital for 3 to 4 weeks or until her WBC and platelets rise to the level the doctors require. During this time, her immune system will be non-existant so her environment and the food she eats will have to be extremely germ-free and almost sterile. The 8th floor at Emory is very effective at keeping everything protected and sterile. She will not be able to have visitors for quite a while, but please send her cards if you wish. She's been told how important it is for her to try to exercise everyday to retain her strength...from walking laps to just sitting up depending on how she feels!

Please pray that Charmaine will stay strong both mentally and physically throughout this whole process, and that her body will not reject the new stem cells. Also pray for her donor that he will remain safe and healthy, and that he will be blessed and rewarded for this selfless gift of life he's giving Charmaine.

Thank you all for everything you are doing for our family!

We will keep you updated.

Stefanie

Friday August 14

2009-08-14T05:36:00.000-07:00

Charmaine is having a wonderful week. She's able to do almost anything she wants now with near normal energy. She is still sleeping till 930 to 10 each morning. I suppose just catching up on rest.

Yesterday we, with Natalie and Stefanie, went to Emory for an orientation session on the transplant process. It was very informative hearing a doctor and a nurse both speak on what to expect. We go back today for lab work and routine doctor visit.

We are still on the calendar to check in August 26th for conditioning and the transplant on September 1st.

As you might guess, she is getting very very anxious about having to go through this. Actually its more than anxious, it's more like dread but she knows she has no choice.

The biggest risk/concern is called graft verses host disease. That's when her body starts fighting a stranger being there for a while. Everyone gets it to some degree. They do have meds called immune suppressants to minimize it. It can have some very uncomfortable side effects. It may last a couple of weeks or up to a year. Yesterday I asked the doctor what the mortality rate on GVHD was. He said about 20%. That's scary.

Please pray that she will not have a severe case of this and that her body will not reject the new cells.

She is definitely getting a stem cell transplant instead of bone marrow.

Looking so forward to the next 2 weeks with feeling good.

Sam

Monday August 10th

2009-08-10T13:43:00.000-07:00

Yesterday Charmaine celebrated her 55th birthday here at home and had a wonderful day. All 4 of our kids were here and almost all the grandchildren. We made 3 freezers of ice cream and had 2 small pools full for the little ones. Her energy level was good all day. It was also the 33rd anniversary of us being together. Our 1st date was on August 9, 1976 and have never been apart since.

We go to Emory Thursday for a seminar on the transplant process then go back Friday for normal lab check and Dr visit.

I can't tell you how good it is to have her home and feeling near normal just for a while.

Thank You all for all the kind things you have done for us. Thanks to many of you for remembering her birthday.

In closing, I wanted to share something I saw at Emory last week. A lady was approaching me in the hall and I noticed her tee shirt said on the front "A BLOOD DONOR SAVED MY LIFE". I thought she was probably a transplant survivor till she passed me. As I looked,the back of the shirt said "HIS NAME WAS JESUS".
I thought that was so powerful to be wearing around the hospital.

I can't imagine anyone going through the experience we are having without the faith that God is always in control no matter what. We believe the tee shirt is true.

Sam

Thursday August 6th

2009-08-06T05:50:00.000-07:00

Charmaine is having a good week and feeling near normal. Her energy level still hasn't came back. Just feels a little tired some and has to nap some during the day but generally fine.

Sunday is her birthday!!! So happy she will be home for it.

We go back to Emory tomorrow at 10 for more appointments regarding the transplant and to meet with a social worker for a family meeting.

The schedule is still on now to check in on the 26th for conditioning and have the transplant on Sept 1.

Sam

Sunday August 2nd.......Update

2009-08-02T06:38:00.000-07:00

Friday at Emory was a very long and tiring day with 4 different appointments. These included a lab appointment to get blood drawn for tests, an appointment with her main Dr., then a consultation with the radiologist about the full body radiation she will get for 2 days during conditioning and finally a bone marrow biopsy at 3pm. She felt no pain at all on this biopsy.

She has felt good this weekend with just mild fatigue. An hour nap during the day seems to help. The med called Valtrex was reduced to 500mg per day from 3000. This really helped with the fatigue.

Our next appointment is with a social worker for a family meeting. On the 18th she goes in for her body to be measured so the radiation amount can be calculated correctly. We are still scheduled to check in on the 26th to start conditioning process.

She is enjoying feeling good again and having a normal appetite.

Thanks for caring about her so much.

Sam

Friday July 31st...TRANSPLANT UPDATE

2009-07-30T04:52:00.000-07:00

Charmaine is feeling very good now. Finally over the side effects of the last chemo treatment.

This has been a week of back and forth to Emory. The transplant team has started getting everything in place.

We found out the dates. She will check in August 26th to start a week of conditioning to get ready for the transplant. She will have 2 or 3 days of intense chemo then 2 days of full body radiation. These will completely destroy her immune system. That is called day zero. That is when the transplant will be done. It is scheduled for September 1st.

We also were told that her donor is a 19 year old male outside the United States. I wonder if he might be a military person?

We also found out she will be getting a stem cell transplant instead of the bone marrow. That's supposed to be easier on her to graft the new cells than marrow.

We go back today for more tests and bone marrow biopsy. Tuesday they took 25 vials of blood for testing. The nurse said she had never taken that many at once before.

If all goes well they said she would be in the hospital 2 to 3 weeks. That's less than we expected.

I will update you on today's visit.

Pray that she will accept the new cells with no rejection.

Sam

Our Visit went well today. Her bone marrow biopsy was postponed until tomorrow. Today she had a c scan on her chest, an ekg on her heart and a pulmanary test on her lungs.

Monday July 27th.........Update

2009-07-27T04:31:00.000-07:00

Charmaine had a good weekend at home. Slowly gaining her strength back. The Valtrex causes some extra fatigue but the Dr cut her dosage down to 2000mg per day. That seemed to help some. Her blood counts are normal now so she is able to see the kids and grandchildren some. Her appetite is back to normal and she is slowly gaining her sense of taste back.

While she was in the hospital this last time, one of the nurses gave her Lovenox shot (which is a blood thinner) on her side instead of under her navel area. For some reason she had a terrible bruise to start with about the size of a half dollar. It was sore like a bruise. It has expanded to softball size and the pain has intensified. It feels like all the nerves in that area are exposed, almost like touching an open wound. We are calling the Dr today on this.

She also has a small white ulcer looking spot on her right pupil.

As I have said before , new things seem to pop up every time.

We have a very busy week this week going to Emory 3 days. The testing and pre transplant counseling are starting.

Will keep you all posted on the progress as we approach the transplant which should be end of Aug or 1st week in Sept.

Sam

Healing and Preparing for Transplant at home

2009-07-24T18:12:00.000-07:00

Charmaine has been home for almost a week now and is so happy to be there. Her ulcers, fever blisters, and spots on her face and shoulders are so much better. Her face looks back to normal now. She is still taking the Valtrex for the virus, and they are gradually reducing the dosage. The stomach burning has improved, but the med still makes her very drowsy and seems to zap her energy. She sleeps in and naps frequently. Today she seemed to have no energy and experienced some nausea. These next few weeks are very important for her to heal and remain healthy both physically and mentally...being careful not to pick up any sickness; so her visits are still limited. Dad's having the deck screened in next week to keep the bugs away from her!

Dad asked me to apologize for not updating...he stays pretty busy and needed a little help getting the right thoughts together...it strains your brain to try to remember everything!! (Especially at his age...just kidding, dad. You're amazing!)

Charmaine went back to see the doctor and her pre-transplant appointments are now being scheduled. She will go next week to speak with the Transplant Coordinator, the Oncology Radiologist, and have lots of tests and scans done to make sure everything is in good working order to get ready for the transplant. Our family meeting will be the following week. The transplant is still tentatively scheduled for the last week in August or possibly the first week in September. The decision will have to be made soon as to whether she gets a Stem Cell or Bone Marrow Transplant. One is as successful as the other we are told. I think we are leaning toward the Stem Cell, but that's not our final answer yet.

Thank you all for thinking of her and for all the prayers. Many of them I know have already been answered!

Stefanie

Monday July 20th........Came Home Sunday

2009-07-20T05:27:00.000-07:00

Charmaine finally got to come home Sunday around lunch time. So glad to be home.

She is much better. Her face has almost cleared from the rash. She is starting to be able to eat and swallow food now. That means the ulcers in her throat are healing.

They have her on a new med called Valtrex. She has to take 1000mg 3 times a day. It appears to burn her stomach pretty bad. Only has to take it 10 days.

Her energy level is good now and should get to normal very soon. All of her blood counts are normal so her immune system is not compromised.

Hopefully she will be able to enjoy 4 to 6 weeks at home before the transplant which should happen in mid to late August. We will still be going to the clinic twice a week for lab checks.

Thanks for all your prayers, the food, and other kind things from so many.

Sam

Saturday Am July 18th... Back in Hospital

2009-07-18T05:04:00.000-07:00

Friday morning at the clinic visit the Dr. readmitted Charmaine into the hospital.
Needless to say she was more than disappointed.

Since we have been home her temp has been up and down teetering on the edge of going to the ER. We did go there Thursday night but came home.

She has for the first time ulcers in her mouth and throat and possibly in her stomach. She also has a very bad blister on her lower lip. These are very painful and she can hardly swallow any food.

She also has for the first time lots of red splotches on her face and shoulders.

These along with the fever were too many issues not to stay and get to the bottom of the cause.

The ulcers are a common side effect from chemo but she has never had them before. The rash happens sometimes from transfusions.

She was so exhausted yesterday she slept most of the day after being admitted, from being up the night before at the ER.

I am not sure how long this stay will be but will keep you all posted.

She just feels like a revolving door right now back and forth to Emory.

Please pray that she'll find her peace again.

All will get better if she can just get home and feel good for a while.

Natalie was with her last night.

Sam

Thursday July 16th....10PM Update

2009-07-16T18:56:00.000-07:00

Last night after coming home, about 9pm, Charmaine's temp started rising. Went to 101.7 at one time but settled a little. The Drs. wanted us just to watch it and come in if it went up again. It never rose that high again. Stefanie came and spent the night to help me monitor her during the night.

She has for the 1st time a fair amount of ulcers in her mouth, throat and esophagus. She also has one on her lip. In addition she has some red rashes on her face and throat from the last transfusion. She has been very fortunate until now not to have had either of these. They are both very common with chemo and transfusions.

Today she was very tired all day and ran a low grade fever. This afternoon about 4 it spiked again to 102. We left for Emory ER about 430PM.

I am home now. Stefanie is with her there now. They have just taken blood samples, did a chest xray and an ekg checking her out. The fever has broken. We are not sure if they will admit her again or just treat and send home. Stefanie will let me know in a while.

Needless to say she was so disappointed to come home expecting to be here for 4 to 6 weeks and have to go back the next day. Hopefully this will all stabilize in a day or two.

Will keep you all posted.

Thanks for all your prayers and for caring about her so much.

Sam

11:15PM update.............She is coming home. She and Stefanie are on the way now.
We have to be at the clinic at 7am in the morning to see the Dr and for more tests. Will probably come home and sleep!!!!!!!!!!!

Thank God she is coming home.

Sam

Home again...and Happy Birthday DAD!

2009-07-15T20:28:00.000-07:00

Well, Charmaine's white blood count and platelet numbers looked good enough this morning so the doctor let her come home...a few days earlier than expected! She's trying to take it easy so she can keep getting stronger.

It was a great birthday gift for dad for her to get to come home!!

HAPPY 60th BIRTHDAY DAD!! We love you!

Stefanie

Tuesday July 14th....Back at Emory

2009-07-14T05:01:00.000-07:00

We checked in yesterday am at Emory for her week of recovery. She feels great but must be there for blood and platelet transfusions to get her counts stable again after the chemo.

This is her last stay before the transplant. She will be home until mid to late August. At least that is the plan now.

She has had some soreness in her throat due to the chemo but it is improving daily.

We are looking so forward to her long time at home and feeling good.

Hope to come home Friday if her platelets stabilize.

Sam

Saturday July 11th

2009-07-11T16:04:00.000-07:00

Charmaine has had a great weekend so far. Says it feels good to feel good. Each day she gets a bit stronger. At the lab on Friday her white count was at 800 and will be dropping. By Monday when we check back in at Emory they will be 200 to 300 range. When they go that low she has to be very careful not to be exposed to any bacteria or viruses and insect bites.

Next week she will be getting transfusions of blood and platelets. Hope to come back home on Thursday or Friday.

Will keep you all updated on her progress and any new information we will be getting on the transplant.

Sam

Thursday July 9th

2009-07-09T05:42:00.000-07:00

Charmaine's counts all looked good yesterday and she was able to come back home. She is feeling very good now.

She cooked her first full meal last night and was able to do some normal chores around the house. You can't imagine how good that made her feel. When was the last time you were excited about doing housework!!!!

We go back Friday to the clinic for check on her counts. If low enough we will check in for the 6 day recovery, If they are not low then we go back Monday for sure and check in.

She had her last routine chemo treatment yesterday!!!!!!!!!!!!!!!! Now we wait for the transplant. It will be in about 6 weeks they say.

Sam

Wednesday July 8th......am Update

2009-07-08T03:41:00.000-07:00

Charmaine has had two great days feeling near normal. Has been able to stay up most of the days and do normal activities around the house.

We go to the clinic and a Dr visit this morning at 830 am. Her #'s will be falling now and she may have to have a transfusion or they may admit her for the week of recovery if her platelets are very low. This is normal.

After this 6 day recovery stay she should be home for 4 to 6 weeks waiting for the transplant. During this time she should feel very good and get stronger every day without the chemo.

Will let you know the outcome of today later on this post.

Sam

July 4th and 5th.............. Update

2009-07-05T06:10:00.000-07:00

Within one hour after getting home Friday Charmaine started feeling the effects of the steroids she has to take in tandem with the chemo. For some reason they make her extremely anxious and nervous. Had a very long night Friday night because of this. Saturday it slowly subsided and she began to think and act more normal.

Saturday night she slept and rested well and seems to feel great Sunday am.

We go back to clinic Monday for lab work and back Wednesday for Dr. visit. Will probably check back in then for her 6 days of recovery as her counts bottom out. During that week she will get numerous blood and platelet transfusions. When that is over we will come home for 4 to 6 weeks waiting for the transplant process to get in place.

Hope you all had a safe weekend.

Sam

Friday July 3rd......Update

2009-07-03T10:44:00.000-07:00

Charmaine has been feeling quite well all week with little or no effects from the chemo except for today. The chemo drug today is called Doxorubicin. It is a 24hr drip. This one seems to always hit her harder than the others. Extreme fatigue and nausia. The meds for the nausia intensify the fatigue.

This has still been one of the easiest rounds of them all.

We are supposed to check out this evening around 7 or so after the chemo is finished at 5.

I'm not sure she needs to come home today unless she gets to feeling better. Sometimes if we leave too early we end up back at the ER that night. Will decide later today. To some extent they let us have a say in when we leave.

We will come back to clinic Monday at 830 am for lab work then back on Wednesday to see the Dr. Very good chance she will check back in next Wed for the 6 days of recovery from the chemo. That's when she gets the transfusions of blood and platelets all week long. After that we will be home 4 to 6 weeks then the transplant.

They have already got samples of the donors blood here and have started testing it ect. All still looks on track for mid to late August for transplant. We still don't know if she is getting a bone marrow transplant or a stem cell transplant. Will find out soon.

Have a safe and happy holiday weekend.

Sam

Wednesday July 1st...Update

2009-07-01T18:49:00.000-07:00

Charmaine has had an incredibly easy time on this last round of chemo before her transplant. So far she has had hardly no side effects from the chemo treatments including not even feeling the needle on the spinal tap yesterday. Will have another one tomorrow at 11am.

We hope to come home late Friday evening maybe 7pm.

Will keep you all posted on any changing events.

Thanks,

Sam

Tuesday june 30th.......Update

2009-06-30T19:05:00.000-07:00

Today was Charmaine's 2nd day of round #5 of chemo treatment. She has had a wonderful day totally uneventful for side effects!!!!!!!!!!

Also, she had her 1st spinal tap with chemo today and did not even feel it. She had no headache afterwards. Both of these are miracles. Has one more spinal tap on Friday.

Natalie is with her tonight.

We will probably get to come home late Friday or early Saturday morning.

Could not hope for things to be going better. Please pray the rest of the week will be the same.

I miss her terribly at home when she's gone.

Thanks for reading, caring, and praying for her.

Sam

Monday June 29th...Back in Emory 5th Round Chemo

2009-06-29T10:17:00.000-07:00

We checked in this morning at 9am for her 5th and final regular round of chemo. She has reached full remission much earlier than normal and is now ready for the transplant. This round will take 5 days. Hope to come home Friday. She will have to come back in about a week for 6 days of recovery then will be at home for 30 to 45 days just resting and getting strong for the transplant.

Feeling fine now just waiting to get chemo started.

Will keep you posted on progress.

Sam

Friday June 26th...Clinic visit..Great News!!!

2009-06-26T18:14:00.000-07:00

Charmaine is feeling fantastic. Best since since she was diagnosed.

We went to the clinic today for scheduled lab test on her blood #'s. All checked out good.

Her main Dr. came in today and told her some really great news. First of all, she is still in full remission. That means she is still responding well to the treatments and is ready for the transplant.

He also said that she would only have to have one more round of chemo before the transplant!!!!!!!!!!!!!!

We will check in Monday at 9am for the 5th round. That will take 5 days. Then we come home for 4 or 5 days then go back for 5 or 6 days of recovery.

After that, she will have 30 to 45 days here at home to get stronger and rest for the transplant which he said will be mid to late August. I am sure during that time we will be going back to the clinic for tests but no more chemo till the transplant.

I can't tell you how excited she is right now. It is very possible that by Christmas she will be feeling well and be able to be with the family.

She will be in the hospital for 4 to 6 weeks for the transplant. Then we have to go back to the clinic every day for 100 days afterwards.

Thank God He spared her going through all 8 regiments of the chemo to reach remission.

Pray that the donor will be able to keep the schedule the Dr. has planed.

Thanks for all your prayers.

Sam

Thursday June 25.......Update

2009-06-25T04:53:00.000-07:00

I am so sorry for not updating the post for the past couple of days.

Charmaine is still home and feeling great. She has had two near normal days. She says it feels so good to feel good again. This is the first time since this started in March that she has felt near normal for any length of time. It has give her new hope and a much better outlook for the future.

We will go back to the clinic Friday but do not think she will have to check back in for round #5 until Monday or Tuesday.

We also hope to get more information about how the transplant process in progressing. A sample of the donor's blood was supposed to have been sent to Emory this week for preliminary testing. We'll see. She won't be able to know who the donor is or where he is from for one year. Then they will tell both the donor and Charmaine about each other.

I read something I want to share with you in closing:

"When God leads you to the edge of the cliff, trust Him fully and let go. Only 1 of 2 things will happen. Either He'll catch you when you fall, or He'll teach you how to fly!"

Sam

Monday June 22....Home and Happy

2009-06-22T18:54:00.000-07:00

Today Charmaine had one of the best days she has had in a while. Her body is recovering from the powerful drugs she is having to take. The heat made her have to stay inside, as it did many other people.

We will go back to the clinic tomorrow at noon for lab test. Then back Friday. She is hoping they will let her have the weekend at home and start again Monday or Tuesday on next reound of chemo.

Right now her white counts are near normal. I am going to try to take her out to dinner one evening. We can go early and not be around a large crowd. Her appetite is slowly getting back to normal.

Thank You all for all the special prayers you have said for her. You can be sure that God hears the prayers of His children.

Found out today that the donor for her transplant is giving a blood sample to be sent to Emory this week for testing. They have chosen the donor. The process is underway for the transplant. All we know is that it is a young male. That's the best choice for a donor.

More tomorrow,

Sam

Sunday June 21st........Coming Home

2009-06-21T03:14:00.000-07:00

During the month of May Charmaine was at Emory Hospital 15 days. So far in June she has been there 17 days. Some how her spirit has remained pretty good. The food there is good but eating the same food everyday starts to get old.

This stay from Wednesday night at the ER to now was unscheduled due to her fever going over 101.5. This morning, providing no temperature spike, she will come home. We will go back to the clinic Tuesday for a lab check then back Friday for another. I am hoping they will let her stay home until next Monday or Tuesday before starting round #5 of chemo and let her rest some. We may have to check back in Friday.

Unless another surprise happens, she should feel quite well this time at home. Her white count was up to 1300 yesterday which means her immune system is not as compromised as it is with low counts. As I have said before, a healthy persons white count is usually 6000 to 10,000. These are the cells in the blood that fight off infections. She did have to have 2 units of blood yesterday as her red count was down.

During her last stay she got 5 transfusions of platelets and 2 units of blood.

It's 6:30 am now. I'm about to leave to go to her. She has stayed by herself the last two nights. I know it's lonely there by herself.

Will keep you all posted on any new developments.

Sam

Update...Charmaine was home today by lunchtime and had a good day visiting with family. She and Dad were exhausted by tonight, and went to bed early. I would like to send a special thank you to her prayer warriors...you know who you are!! :) We are so blessed to have friends like you.

Stefanie

Friday June 19th...Still in Hospital

2009-06-19T10:31:00.000-07:00

After the temperature spike and the trip to the ER Wednesday night they kept her here. So we are back on the 6th floor. She will probably be here until late Saturday or Sunday before going home again. We just finished the recovery time so this stay is an unscheduled one due to fever. Her blood counts and platelets just have not consistently recovered this time as they have before. They are mostly looking for a pattern of rising and just have not seen that yet. They say this is very common and may intensify after each round of chemo. Nothing to really be alarmed about.

In the month of May Charmaine was here at Emory 18 days. May be more in June.

Her fever has broken now, but yesterday she was tired and weak from loss of sleep in ER all night before.

I hope she will have a few good days at home before we start round #5 probably next Friday.

The transplant process is underway in that they are narrowing the best of the 2 donors and will contact them for scheduling. Will take some time.

Thanks to all for your continued prayers, care, calls, notes, and acts of kindness.

Thank You Casey for cutting my grass.

Hope you all have a wonderful Father's Day weekend. Be safe.

Sam

Wednesday June 17th......10:40 PM Back to EM

2009-06-17T19:35:00.000-07:00

Today we went to the clinic and saw the Dr. Her platelets had fell again to 39. On blood thinners anything under 50 gets a transfusion. She had Platelets today. Home about 6PM

Felt good this evening until about 9PM. Started running a fever. It is now 101.7.
This is the most dangerous time for her to run a fever because she is neutropenic. That is when her white counts are very low. This morning they were 300 at the clinic. Can't take any chances. Dr. said come in now.

Stefanie is taking her this time for the 1st time for me.

This is starting to take a toll on me. I can't imagine how Charmaine feels. I'm healthy and she is fragile right now. She's got to be exhausted from sleep loss.
This is the 2nd night this week to the EM. You're there all night when you go.

The last time this happened they gave her 2 antibiotics by iv and we came home. This time I think they may put her back in the hospital for a few days. I think we may have came home a bit too soon with her #'s all so low.

Will update tomorrow on the nights events.

Thank God for my girls for all they are doing right now. Casey feels helpless but just not much a guy can do in this situation.

Sam

Update Thursday June 17th 13:30 am

They did indeed re-admite her to the hospital. She is getting antobiotics by iv. May be there for a couple of days till her counts stabalize.

Will post more about today later.

About to head that way now.

Sam

May 16th.......Tuesday.....Coming Home!!!!!!

2009-06-16T10:08:00.000-07:00

Great news. Charmaine is getting to come home this evening.

She has to have 2 units of blood which take 2 hrs each and 1 unit of platelets which takes 30 minutes. Has already had the platelets and has started the first unit of blood plasma. I think about 4:30 that will be all done. It will take 45 minutes to 1 hour to get discharged. We should be home by 6 or 6:30. She is so excited.

We come back to the clinic tomorrow am for blood count tests and/or blood/platelets then home for 6 or 7 days of no chemo and feeling good.

I may try to sneak her out to a quiet resturant while she's home. May take her to Sam and Rosco's and get in a quiet corner away from crowds of people.

Thank You all for your prayers about the nose bleed.I know that helped end that problem.

We're both looking so forward to 6 days of "normal" life.

God is always good.

Sam

Monday June 15th...Mid Day Update.........

2009-06-15T11:06:00.000-07:00

Charmaine had no more nose bleeds during the night, nor today!!!!!!!!!!!

Today she needs no platelet or blood transfusions.

The Dr. said if her platelet count continues to rise on tomorrow am blood report she may be able to come home tomorrow. It could be Wednesday am. That is still sooner than we thought.

Thank You all for your prayers on the nose bleed issue. I was so very afraid they would sear the inside of her nose.

She is having a very good day today. She has walked 20 laps around the floor here. That equates to a mile!!!

I will update later this evening on the balance of her day.

Sam

10:56 pm pm update.........

Charmaine had a very good day. Hope to go home tomorrow if #'s are good. Has stayed by herself at hospital for two nights. Doing well.

Sunday June 14th .Prayer Request

2009-06-14T18:11:00.000-07:00

Charmaine has felt well both Saturday and today. She has had to have platelets all three days since we have been there trying to stabilize her platelet count. I think she will have both platelet and a blood transfusion tomorrow.

I have a special prayer request for her now. It is 9:15pm on Sunday night.

She has been having a small problem with a nose bleed for the last few days. It has actually bled once but is mostly just like a slight seep. The Dr. came in this evening and said if it bled again that they would have cauterize(burn it inside) to stop the bleeding. This could be a problem for her since she is on blood thinners and has a low platelet count at the same time.

Please pray that her nose will not start bleeding again. A couple of years ago after throat surgery they did that procedure on me with 300 stitches in my throat. It was the most pain I have ever had for two weeks. I don't want her to have to endure that pain.

Will keep you informed on results tomorrow.

Sam

Friday ...June 12th..Back At Emory

2009-06-12T13:13:00.000-07:00

We were back at Emory at 8:30 this morning for her 6 days of recovery on blood counts. The check in went smoother than ever. She is in room 607E this time.

Her platelet count was 33 this morning. When they get below 50 she has to have a transfusion. This is because of being on a blood thinner. She is getting one right now. Platelets look like chicken broth in a bag and only take about about 45 min. to 1 hr. for them to go through the iv.

She is feeling very well, perfectly normal mentally. When we got in the room the nurse said the Dr. had ordered her to have a Heparin drip this time instead of the Lovenox (blood thinner shots). That was a real bummer for her because now an iv will be attached for most of the 6 days here. No pain, just very confining. Like having a small rope attached to you for a week. If that's the worst thing that happens this week she'll be just fine.

It's much easier for her to be here this week of recovery since the Dr. explained to her why on our last visit with him. He said when on blood thinner and your platelet count drops very low (which is normal because of the chemo) it is very easy to have a hemorrhage. He said he wasn't worried about an internal hemorrhage or a cut. Said he could give her a transfusion for that and solve the problem. What he's worried about is a hemorrhage inside her brain which could put her in a wheelchair for the rest of her life. That information did create some extra motivation to be here this week.

Natalie is coming to stay with her tonite. I'll keep you all updated.

Sam

Thursday June 11th ...Update

2009-06-11T18:39:00.000-07:00

Charmaine had a very good day today, almost normal feeling except for some light headedness. This is probably from her #'s starting to fall. We will check in at 8:30 am at Emory tomorrow for 6 days of recovery time. During this time she will get platelet transfusions and probably some blood also to build her counts back to normal. We will come home next Wednesday late or Thursday early if no surprises happen. Then 6 days at home. The best 6 days of the month for her. She will not be getting any chemo this trip.

I have been wanting to tell you some of the things we learned last week on the 8th floor(transplant floor).

Did you know that when she gets the transplant and the new marrow grafts into her bones she will assume the blood type of the donor!!!!!!!!!! She has A+ blood. If the donor has A- one day, all of a sudden, she will have that type blood. Each time they give her a transfusion after the transplant they will type her blood to see if a change has occured. Isn't that amazing.

Also, 70% of the people that get a transplant have to have an outside donor. Even if you had siblings to donate it only 25% chance they would match. A young male is the best donor.

Also, we learned that 90% of the time they do a stem cell transplant instead of a marrow transplant. They say it is easier on the donor(they get it from their blood not the marrow) and the receiver has an easier time grafting it. We are not sure which she will get. The Dr. said we would talk about that later.

They have narrowed the donors for her down to to 2 people. They will start testing for the best. The process is under way for the transplant.

Thank You all for the very special phone calls. You'll never know how much they mean to me. Especially to you Russ.

Thank you to our close friends for your support and understanding even when she doesn't feel like vistors. You mean more to me than you'll ever know.

Thank you Ramona and Renee for coming and cleaning our house while we were at the hospital.

Thank you Anthony and Alecia for all you do and for being our friends.

Thank you to the ones who have brought food to us when we come home.

I am overwhelmed by all the care, love, and support we have received.

Sam

Wednesday May 10th..Update

2009-06-10T19:00:00.000-07:00

We went to the clinic this morning as scheduled. Her blood counts all came back acceptable enough for the Dr. to allow her to stay home until Friday. We will check back in at 8:30 Friday for 6 days of recovery to allow her platelet count to normalize. The blood thinner she has to take (Lovenox) is the reason for this. She has to take this because of the blood clot on her lung and to prevent another clot from forming. It, combined with her platelet level dropping, puts her in extreme risk for a hemorrhage internally, especially the brain. For this reason we go back each time after the chemo for recovery.

We will get out Wednesday pm or Thursday am from this stay. No chemo this time just platelets and blood transfusions as needed. This is not painful. Each day she'll want to come home because she'll feel good. Should not have an side effects on this week.

She has had a good day and is feeling better each day. The next two weeks, until the next regiment starts, will be her best days especially from next mid week to chemo.

We stopped at Charmaine's Salon today on the way home for her to visit her dear friends there. That was indeed a treat for her.

The Dr. today was her main Dr. and did confirm that she was in remission. The bone marrow search has been narrowed down to 2 donors. They will do some tests and determine which one is the best. The process is underway to get the transplant going.

Until it happens we will remain on the chemo regiments and generally on the same schedule we have been on. No letting up now. They said if we slowed or stopped the treatments it would come back in full force and all this work would have been lost.
We will stay the course.

Will keep you all as informed as I can each day.

Thanks to each one of you for caring enough about her to read this update daily.

Sam

Tuesday June 9th

2009-06-09T09:23:00.000-07:00

At about 10 last night her fever spiked to 101.9 so we left for Emory EM. She was given antibiotics in the iv. One bag takes 1 hr to dispense, the other takes 30 minutes. The nurse forgot to turn the 1st one on and didn't notice it for an hour. That cost us an extra hour there. When you've been up for 20 hours you start losing some of your focus and definitely your sense of humor. This got the fever under under control and we got back home at 4:15.

There was a screamer in the room next to us so we got hear his obscene yelling for 4 hrs. I was hoping they would give him an adivan to calm him but it never happened. He weighed over 500 lbs. Was pitiful.

She slept until 9:30 this morning and is feeling weak but ok. Today will be a sleep/resting day for her.

Her counts on red blood cells, white cells, and platelets will start to drop now and will bottom out Friday. We will check back in Friday for 6 days for recovery on the counts.

We go to the clinic Wednesday for lab work and Dr. visit.

Monday June 8th.....8:40 PM

2009-06-08T17:35:00.001-07:00

Had a good day today a bit weak but good.

About 5PM her temp started rising. It was 100.3. We called the clinic and spoke with the nurse. The protocol is always the same. If her temp ever gets to 101.5 we go to the EM at Emory. Right now it is 101. She is sleeping.

This always scares me. I check it about every thirty minutes. Got all the bags packed and ready to go.

As I have said before, when she's there I miss her. When shes home I'm scared. Her condition can change in minutes. She is not allowed to take anything for fever like Tylenol etc. It would mask any other infection. That's the problem. She can't take anything here to reduce the fever.

Will keep you updated on the outcome of tonite.

Sam

10pm update...Dad went ahead and took Charmaine back to Emory to check on her fever. It went up to 101.7 so they wanted her to come back to make sure nothing else is wrong. Hopefully they will check her out, the fever will come down, and she can go back home...we will update tomorrow

Stefanie

Sunday June 7th..............AT HOME AGAIN

2009-06-07T18:39:00.000-07:00

This morning promptly at 8am, the PA, Jessica came in to do her final spinal tap with chemo. All went very well. No pain and no side effects. She had Adivan in the iv port before it this time and it works very fast that way. She slept for about 3 hrs after it was over. The longer she lays flat the less the chance for a headache from it.

We were released and home by lunch. This afternoon she napped most of the time from the meds. She is now alert and starting to recover. Has snacked on the chicken and dumplings and strawberry cake Alecia brought for her. Thank You Alecia.

So very glad to have her home with me again. My heart is starting to rise back to my chest again. When shes gone it feels like it is my stomach. I miss her so very bad. One of the side effects of this chemo round is the voice. She sounds like a little girl talking. It almost makes me cry to her her tender little voice. She is always so very grateful for every thing I do for her. She will never know what a privilege it is for me to help her through this.

We go back Wednesday to the clinic for tests, then back Friday probably for 5 to 6 days in hospital for recovery time.

Still rejoicing about the PCR test results coming back negative.

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

Sam

Saturday...June 6th..Chemo is over for round 4

2009-06-06T19:00:00.000-07:00

Had a pretty good day today. Starting to recover from treatment. Had to have 2 units of blood this afternoon. That's good so we won't have to worry about her levels falling so low while at home.

At 8 am in the morning she gets another spinal tap with chemo then we come home. Hope to have her home by lunch.

Hope you all have a wonderful weekend.

Sam

Friday June 5th..GREAT NEWS!!!!

2009-06-05T18:32:00.000-07:00

This afternoon we were told that the results of her PCR test came back negative in all areas.

Let me explain what that news means.

Bottom line it means that her cells are substantially cancer free. In remission. The chemo has worked and she is almost ready for the marrow/stem cell transplant.

This test is done by taking a blood sample. It will detect one leukemic cell among 500,000 to 1,000,000 non leukemic cells. It is very accurate. The Dr. said this was the best news we could hope for.

This is very good news today.

I have prayed that God would spare her from going through all 8 regiments of the chemo. This puts her closer to the transplant.

They have started the donor search now so the process is under way.

When they find the donor the calendar will be set and she will have to go through what is called "conditioning" to get ready to receive the outside marrow. When this happens her immune system will be completely wiped out. When that happens it is called "Day Zero". This is too much to post you on now. The good news is we are nearly ready to start!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! This will not happen fast. It will take time to coordinate all that has to happen.

She is much better now. I think she will start to recover fast from the chemo.

Natalie is with her tonite.

More later.

We are so excited.

Sam

I edited this post after getting more info from the doctor in case you read it and noticed some changes. I believe it is all accurate now.

Friday June 5th....2:15 PM Update...5:15PM Update

2009-06-05T11:13:00.000-07:00

Charmaine had a difficult night up and down with severe nausea and diarrhea. Stefanie was with her.

This morning that has continued. She is very weak and tired. The adivan and nausea meds make sleep most of the time. The very slightest movement makes her sick.

During this time she obviously can not eat. It is also hard for her to take oral meds because she will throw most of them back up.

Hopefully the worst is passed on this round.

It hurts my heart to see her be so very sick. It's a helpless feeling.

I'll update post later today.

5:15 Update.............

Doing much better gradually. Is starting to snack on crackers and drink gatorade and is more alert.Maybe the worst is over for this round.

The chemo that she just finished is called Methotrexate. It seems to have the worst effect of all of them. The one she starts now is Cytarabine. On this one she has to put special drops in her eyes to prevent the collection of crystals on her eyes. Also, she cannot wear contacts during this one.

Chemo treatments end in the morning except for the spinal tap at 8am on Sunday. Then home for few days.

We completely loose all sense of time here. It's hard for me sometimes to even remember what day it is.

Thanks for caring about her enough to read this every day,

Sam