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

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

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

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

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

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

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

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

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