Lots has happened since last post.....

Well so much has happened since I last posted here on the blog. I have been posting on Facebook but failed to post here.

Dan has had cataract surgery on both eyes which in return caused us to end up with a Cornea specialist. But things are better now. They are still watching for GVHD in his eyes.

Dan has been diagnosed with CIPD -- which is a type of autoimmune disease which has caused all the nerve damage. This caused him to have to go back through 5 rounds of Chemo and now we are doing IVIG treatments-the nerve damage has stopped progressing for now and we are hoping for some further improvement on his strength.

We have now sold our homes in Fort Worth area and have moved as of April 30th to Arkansas. We are currently living with my mom in Springdale until our house is finished being built in Prairie Grove. The house will be ADA assessable which will help tremendously for Dan.

We are so happy to be with our family here in Arkansas but very sad to leave such wonderful friends back home. I so wanted to visit all my Cook Children's family but unfortunately that did not come about. So a BIG thank you to all of you who have kept Dan and I in your thoughts and prayers.

We will continue treatment in Houston at MD Anderson and Houston Methodist. We plan to use that time to stop and see friends on our way to Houston which will also make the trip not so long.

Continue to keep us in your prayers --we love you all very much!

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