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

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

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!!!!!

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

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!!

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!!!

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

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

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

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

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

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

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!!

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

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