Back in Houston.....

Dan will be having a nerve biopsy this afternoon. If all goes okay we will leave to go back home in the morning and he will have cataract surgery on Thursday back at home.

We won't have nerve biopsy for about 2 weeks and then we will have a diagnosis and a treatment plan which they are telling us possibly more chemo. This is very confusing to Dan and I as the extreme chemo is what they say caused this or at least made this progress more.

We will have a lot of hard decisions to make once we are presented with the treatment plan. We are only scared as to what the next chemo may cause and will he better or worst then in other ways than he is now. A very tough decision.

We will keep everyone posted here when we find out the results.

Much love to everyone!
And thank you all for the continued prayers and good thoughts.

Back in Houston different hospital.....

Well here we are in Houston again.. but this time we were referred to Houston Methodist Neurology for a second opinion. Met with doctor on Monday and we were very impressed with her.

Today we are here all day doing tests all day long. This is nice though we are getting about 4
more different tests all in the same day.

I only thought MD Anderson was the most confusing. It is a breeze compared to getting around
at this hospital. The people once you find one are helpful but they aren't too many around it seems.

We sure hope some of the tests today give us some answers. If not they will probably proceed with a nerve biopsy and possible brain biopsy. We just so want some answers so we know where to go from here.

We are anxious to know what may be the future so we can plan the best we can for that. This has been the hardest thing I have ever been through and especially not being able to make things better for Dan. I love him so much and hate seeing him hurt.

We should always not take for granted the time we have with the ones we love as we never know from day to day what might happen.

I am so glad that Dan and I have each other - it would be so hard for him without someone to be on this journey with him.

We will check back in tomorrow maybe with some news.

Here we are in Houston--and my it is Hot and Humid!!!

We came in yesterday evening and then had blood work this morning and saw Dr. Jones, the stem cell doc, we are scheduled for the new treatment on Monday- this is where they exchange Dan's plasma with a donor's plasma.

They are now also considering doing the nerve biopsy to try and find out the cause of the nerve damage.

Good news we were able to discontinue 2 medications we have been taking that amounts to 7 pills per day less....yeah!!!

I went and got groceries this afternoon and also did a little shopping.... It was good to get out a little while. We have Saturday and Sunday off before starting the new treatment.

Dan and I have decided to stay in where it is nice and cool and relax...

Back in Houston again......

Well here it is May and this makes our 5th trip back to Houston since we got home in February. Dan has severe neuropathy (nerve damage) in his spine, feet and legs and some damage in his arms and hands. We are back doing another round of treatment (IVIG) 9 hours per day 2 days at a time. If this does not show improvement we will be looking at another treatment.

Dr. Jones our stem cell doc would like to do either nerve biopsy or brain biopsy -as Dan is still dealing with cognitive problems and they seem to be getting worst instead of better. Of course the trips here seem to make it worst and he gets more and more confused. So Dr. Jones wants to be able to get to the bottom of this and Dan and I are in agreement that we want to know what is going on in the brain and why it is not healing.

This has been quite a journey we have been on and at this point we just want some answers whether they be good or bad so we can better prepare for the days ahead.

We so appreciate all of the kinds words and thoughts and especially the prayers. We haven't given up hope --we just want to be realistic about what the future holds- Dan and I have had very long talks about this and we are both are the same page so to speak. So we will press on and hope to be able to get a clear diagnosis and also prognosis.

Please keep us and our family in your prayers and know how much we love each and everyone of you.

To God be the glory!!!! We are going home!!!

Dan's stem cell doctor has releases him to leave the Houston area. He feels the problems he is still having is from the chemo and one of the meds he has to remain on and they are starting to taper. He told us that in time everything should heal itself. It may take 6 to 8 months or longer but he feels it will get better.

Dan and I are very happy but yet a little scared to leave our safe zone so to speak. We will have to continue to come back monthly for follow ups for a while and we will continue to see his Oncologist at home on a weekly basis.

Our journey is still not over but at least we get to continue this at home with our dear friends and loved ones.

We so appreciate all the continued good thoughts and prayers from all of you.
Dan and pray that things will continue to get better.

Love to all of you!!!

Early arrival at MD Anderson......

Here we are at MD Anderson @6:30am for blood work then Dan has a repeat Lumbar Puncture-- we met with the neuorologist on Monday and she said there was some abnormal cells and due to the fact he is not getting any better as far as the memory and sleeping all the time and weakness she is repeating the Lumbar Puncture as just a 2 week later procedure could show change

We saw Dr. Jones on Tuesday and as far as the transplant and his blood is concerned he is doing well. Unfortunately Dr. Jones does not agree with Dr. Penas-Prados the neurologist -- he doesn't see Dan 24/7 like I do and he thinks if he would just get up and move and exercise more everything will be okay... that would be wonderful- but he is so weak he can't excercise as much as he would like. On the other hand Dr. Penas-Prados says his weakness is a part of what is going on in the brain.  

I am hanging in there and trying my best to not get to frustrated with the docs-- if as if  Dr. Jones since the stem cell has engrafted 100% wants everything else to be okay-- Dan and I wish nothing less. Unfortunately, his brain is thinking something else.

We will see the neurologist on the Feb 16th and we will just go from there. We will probably be coming home around 13th of March if all goes okay. I know Dan is anxious to be home. Our good friends JD and Roger are working on some ramps for the house and the Man Cave so I can get Dan in and out easier. We pray everyday those will not be necessary but better to be prepared.

God has truly blessed us with this time we have had together and strengthened our love for each other so much!  Our son Damon has recently returned home to Arkansas from drug treatment and is doing well taking one day at a time to stay clean --he is truly a wonderful man and Dan loves him very much and has been a wonderful father to him especially when his own dad would not be there for him. 

Everyone love your loved ones every minute of everyday and cherish all the time you have with them because none of us no what the future holds.

We love each and everyone of you and appreciate all the love, good thoughts and prayers you send on a daily basis.

Dan and Rhonda

It has been beautiful here in Houston..

The weather has been beautiful here. I was able to get Dan out for about 20 minutes or so. We went for a ride on the golf cart. He still struggles with severe weakness so that small outing was about all he could do for the day. He continues to fall asleep constantly and his memory and confusion is still there.

He had Lumbar puncture/Spinal tap on Monday and we see the neurologist this coming Monday for some of the results. His blood pressure is still staying up even with the new medication and we see the cardiologist this morning. They are very concerned with his blood pressure staying as high as it is.

We did have a pleasant Monday evening and Dan was able to stay up with me till 9:00 --he said he knew I missed having him up with me in the evenings so he did his best to stay up later. I love him so much.

His appetite is not good. He has lost more weight and he struggles to eat a small portion of his meal I cook for him.

He tells me constantly how lucky he is to have me here with him and tell him I wouldn't want to be anywhere else.

On a good note as far as the actual transplant his blood work has remained to be good. So we are praying the results of the Lumbar puncture will be favorable and this brain issue will correct itself in time.

Much love to all of you!

Good morning to all of you...

We saw the neurologist yesterday for the results of the MRI and we really don't know too much more than we did at this time. She did say the changes in the Brain are from the chemo and she will run a few more tests one of which is a spinal tap to see if there is any type of viral infection going on. She said if those turn out normal then it is just a waiting game. She said in time either months or up to a year his Brain could heal on its own. Of course this is not the quick fix Dan and hoped for but none of this has been a quick fix. I feel for Dan as I know he is so tired of all these tests he has to go through. I have to admit I was a bit frustrated when we left the doctors office yesterday. We have the stem cell docs who come in and say well you have been through a great deal but things are looking much better now and then we have this to deal with.

I have the old sinus /allergy problems in full force right now and I am feeling pretty lousy but I got some over the counter meds and hope this does the trick if not I will find one of those Care Clinics and try and get some other meds. I so need all of my energy so hopefully this resolves itself soon.

I seem to always give the negative information and forget to say how wonderful it is to have Dan and to have made it thus far. It is wonderful just to sit on the couch with him and watch a western and hold hands. He is truly the love of my life and my best friend all wrapped up in one great package!!

Oh and by the way his hair is coming back in and it appears to be curly!!

Take care everyone we love you all very much!!

Update for all the bloggers

Well it has been quite a ride since we got out of the hospital Tues, Jan 6th. Dan has now developed some memory problems and a problem with him following to sleep when he is still within a minute of being still. Blood pressure is also staying up and I am very frustrated that they can't seem to figure this out.

We are going for a MRI of the Brain this evening as there is a possibility that these problems are swelling on the brain which is a side effect you can get from the Tacrolimus medication he has to take daily to prevent complications from the transplant.

I must say I am getting a bit tired--mainly because things are becoming more difficult for me to handle on my own. When I know what to do to help him make things better it is much more easy to bare--but when I don't know how to help him it becomes oh so exhausting.

We will see how this MRI goes this evening. The APN and the Pharmacist here in the ATC clinic are wonderful and they are as frustrated as I am--so they are being a very good sounding board for me.

As always Dan and I appreciate all the wonderful good thoughts and prayers from everyone.

Things looking a little better...

Infectious Doctor came in yesterday and started Dan on a new medication regimen. One IV antibiotic and one by mouth antibiotic to address this C-diff-colitis. His stem cell doctor came in this morning and said she thought they are on the right track but he will have to remain in hospital probably till at least Wednesday so they can monitor everything real close. Dan is not a happy camper.

So my hardest job will be keeping him settled -- 2 of our wonderful friends from home (Aileen and Mark) are having dinner delivered to us this evening for my birthday! Very sweet of them to do that. They didn't give me a chance to respond to them and tell them not to. We both picked Italian -and I let Dan pick the dish since he is having such a rough time with his appetite right now.

Oh wow the sun just came out had not seen it in a few days... Dan and I are just chilling watching movies in his room. We went for a short walk --he bout did not make it back to the room -his legs are extremely weak.

We will try to get a pic of us having our dinner later this evening and post it.

Everyone take care and thanks for all the prayers...

Dan and Rhonda

back into the hospital we go

Dan has some bleeding going on due to some of the infections he has. They are admitting him to try and get a grip on this.

He is so discouraged right now so lots of good thoughts and prayers his way.

We love all of you!

Went home from hospital Christmas Day..

We got to home Christmas Day from the hospital. Monday, Dec 29th had the EGD and flex scopes done. Preliminary results show the graft vs host has went to his stomach. He is also suffering from the C-Diff colon infection and they have started him on new medication for the C-Diff. They did biopsies and we will here the final results on those next week.

Dan had a really rough day yesterday Dec 31st. He is very weak and we are home today doing the fluids at home and we will go back to ATC tomorrow and get more blood work done. He may need blood transfusion again. He received 2 units while in the hospital. At this point I am struggling to stay optimistic. I am concerned about the biopsy results. He just can't seem to get better with one thing before another one comes up.

He had to go and lay back down this morning. I worry so much about him. So all you prayer warriors out there say those prayers as I know you continue to do. I know God has gotten us through thus far and prayer the journey will start to get easier. We talked with the treatment team on Tuesday and we know we will probably be here through February. All of this is fine as long as Dan can continue to get better... we would stay here a year if that is what it takes.

So glad God has allowed me to be here with Dan help me to stay strong on this journey.

We want to wish all of you a Happy New Year and tell you we love all of you very much!
Dan and Rhonda