Tuesday, September 28, 2010

Day +50

Hi All!
I am back in Houston tonight with mom and we got mom back to the condo to FINALLY get a REAL night's sleep.  Dad is having his bladder flush contantly running and now also has his bladder irrigated every two hours so they assign a nurse to ONLY him for day and nightime and they are literally in the room with him every 15 minutes so he is being very well cared for :) I am back so quickly b/c the docs have a new idea to hopefully solve the problem with him rejecting more platelets from the transfusions than he is keeping.... His platelet count as of tonight is back down to a mere 2 :( - so, they now want dan and I to have our platelets extracted to transfuse for dad - with the hopes that since we are his closest genetic matches that he will not reject them and they could be the "golden ticket" :) - So, I had to go and get a pre-screen blood test today and then I am scheduled to have my platelets extracted for him tomorrow and he should have them in his body by tomorrow evening!  So, this involves two very specific prayer requests - the first is that I make it through the donating process - it is super scary for a needle phobic like me ;) and if i pass out or vomit they will stop the procedure - so please send me happy strong thoughts!  The second request and biggest one is that the platelets they get from me WORK WONDERS FOR DAD!!!  It is really crazy that in my pre-screening test my platelet level was a 228 and dad's is only 2 - put quite a perspective spin on the story for me ;) - it is about a 2 hour procedure to donate and you can only do it every 72 hours so, if this works they may have me do it again on saturday.  Then daniel gets to town wednesday and will be able to do his donation - we are both needle queesy so please do the same two prayers for him!! 
We will update tomorrow and let you know how all this goes!  So goodnight for now and keep those warrior prayers coming! Love to all!

Monday, September 27, 2010

Some Relief & Some News

Hey Everyone,
After an UNbelievably difficult and painful weekend for dad, yesterday finally brought some relief for him where the bladder virus is concerned.  He had significantly less and less intense bladder spasms and that made a big difference, he slept most of yesterday since he did not get ANY sleep at all on Saturday night- neither did mom for that matter - I REALLY hope they BOTH slept well last night - I will let you know after I talk to them this morning.  He started taking morphine yesterday which managed his pain quite well.
As for his counts, they unfortunately are still really low and not holding.  They also discussed with us yesterday that the first bone marrow biopsy that he did on the 9th is showing positive signs of the donor's cells taking over which is a GOOD thing, however it did show 6% blasts and dysplastic cells- which is evidence of the persistent myelodysplastic syndrome (the leukemia)............ So, there is the good part and the bad part.  What they are hoping is that the results from this most recent biopsy will show a decrease in the disease and an increase if engraftment of the donor's cells- so that is what we need to pray for!  If the biopsy comes back and doesn't show more positive engraftment then they will be pursuing more cells to be donated by the donor and a second transplant of them.  Whether or not we would have to do more chemo in conjunction with that 2nd transplant remains to be seen - what we WANT is to not have to resort to this and instead we want him to have that "turnaround day" where he begins making his own cells and then have the biopsy results come back negative for the disease!!  The preliminary results of the most recent biopsy show a reduction in blasts to 2% now and so that is moving the right direction- lets band together and pray for a result of 0% to be right around the corner!! 
Love to all and i will update again later!

Saturday, September 25, 2010

It's been QUITE a day....

Hi Everyone,
Bradley and I are in Houston this weekend with mom, and Brad and I stayed at the hospital all day today with him.  Dad had a REALLY rough day, they have discovered a virus in his bladder and he now has a catheter in and they are running a constant flush of his bladder.  The virus is causing really severe spasms of his bladder and it is really painful for him - unfortunately we had a very intense day full of them.  They are giving him anti-spasm medicine but it can take a few days before it builds up enough of a level in his blood to really alleviate the spasms and pain.  We are HOPING that the worst of it was today and that tonight and tomorrow will start to bring some relief.  The virus is sort of tricky and can last up to two weeks and they have to continue this constant flush for the duration of the virus so we need SERIOUS PRAYERS that we can beat this thing FASTER than that!!  
As for his other counts they are still very low and he had 2 units of blood and 2 units of platelets - so we need BIG time prayers for that turnaround as well!
Thank you all so much for you love prayers and support - please keep those prayers flowing - dad has been feeling like every day just brings worse and worse news and symptoms and we need that day with BETTER news something terrible!!
Love to all and more tomorrow!

Thursday, September 23, 2010

Another Bone Marrow Biopsy.........

Hi All, 
Well yesterday dad had to endure another bone marrow biopsy :( - the docs wanted to get another one in the works since the results take so long so that they can have a basis for comparison against the one that they did on the 9th...... this is because he is still not producing his own platelets and blood cells and they are trying to solve that mystery.  He was really really out of it for a LONG time after the procedure because of the drugs they gave him so hopefully he slept well last night.  They actually preformed the procedure in his room and mom got to watch - YUCK! lol........
As for other updates, we still do not have all the "final" answers from the last biopsy - but as soon as we do we will share them with you guys- i promise.  He is still having off and on fevers and some blood in his urine and so last night they took him for more x-rays and did more blood and urine cultures so we should have some results later today.  He is also still carrying about 20-25 pounds of fluid that we are hoping as his exercise level comes up the fluid will start to come down - and he is increasing his activity and did well with it yesterday which is great!
More later when we know more - please please keep the prayers rolling in - we really really need them for that ever elusive turnaround day! Love to all!

Tuesday, September 21, 2010

Day +41 - still need those prayers......

Hey Everyone,
Well once again unfortunately not much new to report..... Dad had a blood transfusion and two platelet transfusions yesterday and it barely moved his red counts up at all and his platelets stayed at the low 5 count, in addition, his white counts also slipped to below 1.  Not what we wanted or were hoping for, but we forge on... He also had fever spikes and chills last night and again this morning which they treat with a steroid to break it and keep it at bay.  He is also now having blood in his urine, which they are hoping is "just" another symptom of the ongoing low platelet numbers.  These stretches of days are definitely the ones that are the hardest to stay positive during, but we are doing our best and we love the encouraging comments that we get here - we read them to dad and it brings a smile to his face (and ours of course) - I have to give props to Kory for being the comment king as of late - and send him a HUGE thank you! 
Mom has been sleeping at the hospital the last few nights and is doing such an amazing job of standing by her man ;) - please keep her in your foremost prayers- that she can feel encouraged and energized in the face of total exhaustion.  Its NOT an easy job!
Today I'm gonna do a little something different and share with you a little something that has meant a lot to me and to mom - its a song that sort of fits our feelings quite perfectly right now and brings us that incredible faith that is available to us through the Holy Spirit inside just dying to remind us that we NEVER leave God's Hands no matter what trials we may be facing, and that Those Hands are the strongest you could ever hope to rely on in life!
So, I hope it touches some of you the way it touches me every time i hear it or read the lyrics!
this is a link to listen:  http://www.youtube.com/watch?v=FlL8LayF0uw
and here are the lyrics written out:
Your Hands
by JJ Heller

I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That You would take my pain away
That You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crookedly lie
Oh Lord, before these feet of mine
Oh Lord, before these feet of mine

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

When You walked upon the Earth
You healed the broken, lost, and hurt
I know You hate to see me cry
One day You will set all things right
Yea, one day You will set all things right

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

Your hands
Your hands that shape the world
Are holding me, they hold me still
Your hands that shape the world
Are holding me, they hold me still

When my world is shaking
Heaven stands
When my heart is breaking
I never leave You when...

When my world is shaking
Heaven stands
When my heart is breaking
I never leave...
I never leave Your hands  

Love to all!

Monday, September 20, 2010

Keep on Keepin' on....

Hi All,
Well, there isn't too much "new" news to report today... Dad is still in the hospital and last night he spiked some high fevers.  They decided this morning that today they will ct scan his sinuses to see if there is an infection that could be the culprit.  They also told him that he has GOT to start moving around and exercising more because that is how he can combat the fluid in his lungs and if he can't get it to go down then they are threatening to tap his lungs and drain them - YUCK!  Hopefully that serves as a very MOTIVATING factor!  
His platelet count was a 10 this morning which is still way too low and that is after 2 transfusions yesterday - he is getting 2 more transfusions of platelets today as well.  His blood counts dropped more and he is going to get 2 units of blood transfused today.  His white count also slipped a little more.... So, no great news there.....  
We still don't have all of our results back but we do have SOME of the DNA results and what we saw appears to be encouraging that the donor's cells are engrafting and taking over - which is a GOOD thing.... and as far as the biopsy - we still don't have full results but there were no "blasts" found as i reported a few days ago, but they did say today that there are some "abnormalities" - we don't have the full explanation of what that really "means" but we are working on it!  So, i will report more when we know more..... 
THIS JUST IN: - dad DID go on a walk today and DID do his arm exercises YAY!!! 
Please keep up all of your amazing prayers - we need them and we love them!
Love to all!

Sunday, September 19, 2010

well - back to needing SERIOUS prayers

Hi All,
I wish I had more good news like I had last post, but unfortunately I don't :(.... Yesterday we had good numbers and were thinking that dad would be discharged today, then he started with fever.  So, they ran some x-rays and tests.  This morning we got his numbers in and much to our dismay his platelets have dropped all the way back down to a 5 and all of his other climbing counts took a plummet as well.  It is frustrating, discouraging, and all around not the news we wanted.  The docs are suggesting that dad should participate in a clinical trial drug study to see if it can spur his body to finally start making platelets....... however, there are some scary potential side effects- one of which is lymphoma...... i'm sure i don't have to explain why that is a scary thought for us.  We are not sure what direction we will go or when we will make the decision since we still do not have the complete dna or biopsy results back in yet.  They are also beginning some pro-active measures because one of the x-rays showed some fluid in his lungs which could be the start of pneumonia- so they are trying to stop it before it takes hold.  
All in all today is a TOUGH one and we are trying very hard to keep the faith and stay positive - please pray for dad and for all of us as we strive to remain positive and optimistic!  We need that strength of spirit that only GOD can offer so join us in asking Him to provide us all with STRENGTH OF FAITH!  
As far as looking forward, obviously given all the news today they are not considering discharge any time soon now and they are going to start pumping platelet transfusions twice a day.  I will keep you updated as soon as we know any more about any of this news.  
Love to all!

Friday, September 17, 2010

The Improvement CONTINUES - PRAISE GOD!!

Calling all PRAYER WARRIORS - we have a HUGE THANK YOU to deliver!!!!!!!!  Those amazing prayers to our INCREDIBLE GOD and FATHER are working OVERTIME!
ALL of dad's counts have come up!!  His white blood has come up to 4.2, his red blood is holding the transfusion numbers and his platelets are at a recent record high of 16!!!  (50 is normal so we still have a lot of growing to do - but MAN its NICE to see some DOUBLE digits FINALLY!) 
He is currently getting a cat scan and we are still waiting on a bunch of various test results but all in all the docs are LIKING the progress and i think if his numbers hold tomorrow they may discharge him back to the condo - we shall see!  
Also, we are trying to get him moving and exercising more which isn't the easiest when he is feeling tired and wiped out - so, anytime any of you happen to talk to him maybe you can help us by encouraging him to exercise or asking him how the exercising is going etc?  The occupational therapist and docs have re-iterated to him how IMPORTANT it is to push himself in that realm that it will help his overall progress LOTS!

Thursday, September 16, 2010

Doing Better!

Well looks like being in the hospital was just the ticket!  Dad being able to get better access to care and transfusions seems to be agreeing with him!  His platelet level raised to a 7!  (which is still low BUT SO MUCH higher than we have seen in DAYS!)  Also, all of his other counts are on the rise as well- slowly but surely!  So, they are thinking they want to keep him in the hospital while they try a few new things including pumping his platelets instead of gravity feeding them and giving him IV nutrients to hopefully help his body and bone marrow to heal and begin to produce blood and platelet cells the way that it should!  They would like to see his counts rise a bit more and hold before they send him home again - and that is what he and we are most comfortable with as well!  He also got a visit from the occupational therapist today who encouraged him to get more exercise than he is getting by offering a few new classes and ways to go about that!  
We want to thank all of our trusty PRAYER WARRIORS, because we of course credit GOD with the healing and turn around we are experiencing today and that means YOUR prayers are WORKING - please oh please keep them coming - we have a long long way to go but we love celebrating the little victories as we are blessed with them! :) 
Love to all!

Wednesday, September 15, 2010

Day +36- Being RE-admitted to the hospital as an in-patient....

Hello All,
Well dad slept pretty well last night but may not sleep as well tonight as it will be back in the hospital.  His platelets dropped back down to a 2, which is not good considering he had a transfusion yesterday; his red blood held its own- which is not bad and his white count increased by 0.2........... he was able to get a big bag of single donor platelets today which we found encouraging..... then, he discovered blood in his stool while still at the hospital - that is of course a symptom that they take very seriously!  So, as a result he is being re-admitted to the hospital as an in-patient and they are going to give him a 2nd platelet transfusion tonight and a unit of blood.  He is still carrying a lot of fluid even though there has been some reduction, his stomach area is really bloated.  The sores in his mouth have improved some, and the blood in his nose has gotten a little better as well.  We still do not have the rest of the biopsy, antibody, or DNA testing results back, and probably won't until mid-week next week.  PLEASE PLEASE say prayers that they quickly figure out what is going wrong and that the find it easy and fast to fix!  We are all pretty emotionally exhausted with all of the ups and downs......so, please pray for us to all feel encouragement from the BIG GUY in the SKY!  Also, please pray for mom specifically - she has been so steadfast and strong at his side taking the best care anyone could of him!  Love to all and more as soon as we know more!

Tuesday, September 14, 2010

Day +35 Keeping the Faith

Hey Everyone,
I'm sorry for the brief absence from the blog - but i'm back :) Yesterday dad had a small increase in his platelet count bringing it from 4 to 5 which is still WAY too low but at least moved in the RIGHT direction, all of his other counts unfortunately continue to creep downward.  He received both blood and platelet transfusions yesterday and the day before that.  We also received preliminary results back from the the bone marrow aspiration - it showed no "blasts" which is a GOOD sign :) - we will not however have the complete results for a few more days so we will let you know as soon as we know.... they are also waiting on some blood results that will let us know how much the donor's stem cells have or have not en-grafted so far- which may be very important in figuring out why he is still not producing his own blood and platelets yet..... SO, LOTS to pray for and about and we are doing our very best to stay positive and to keep the faith with and for dad.  Hoping and PRAYING that when i get the text from mom this morning with dad's counts that we find IMPROVEMENT!  As far as his daily symptoms the blood running in his nose and throat have improved slightly with the slight platelet increase which is movement in the right direction, however with his white counts creeping lower each day he has developed mouth sores again which is cause for concern and discomfort :( we are hoping today that they will give him a shot to help his white counts go up, even if it is just superficially to help his mouth heal.  He is also still having fevers off and on most days and just super weak, achy, and exhausted all the time.  So, please join us in keeping his thoughts and conversations positive and encouraging as well as joining us in SERIOUS PRAYERS for his improvement :) Love to all and i will update this afternoon with the latest!

Thursday, September 9, 2010

Day +30 - Bone Marrow Aspiration Day

Hey Everyone,
As most of you already know, today is the day dad has his bone marrow aspirated to test to see the state of the disease or HOPEFULLY lack there of!  Lots of you know this because my aunt lisa organized a prayer vigil to carry us all through this pivotal day, and we THANK YOU for the BOTTOMS of our HEARTS!!!  You have all been so amazing for all of us through all of this - today his counts were not what we were hoping for - his platelets slipped back down to a 3 and all of his other counts dropped as well............ they gave him a platelet transfusion this morning to try and get the count up prior to the procedure.  We had some concern over him doing the procedure with the state of his counts, but they assured us that they needed to go ahead with it b/c it is very important for us to have the results as quickly as possible.  So, I just talked to mom and they just took him back to start the aspiration.  Mom is sitting in the waiting room meditating and praying- she has been such a rock through all of this, what an amazing wife and mom!  Please join us in praying during the procedure, for it to go well, and for the results to be GOOD!  I will of course update the MINUTE we know anything- For now we keep the faith! 
Love to all!

Wednesday, September 8, 2010

Day +29 - well its not bad and not great.........

Hey all!
Well, they just got dad's labs in and the platelets dropped to a 5 from yesterday's 6, but it is better than going back down to a 2........... and his white cells actually went up a little so that is GOOD!  He is retaining a LOT of fluid - nearly 20 lbs of it to be exact..... so, we are assuming they will be giving him something to help with that today along with his platelet transfusion.  He also continues to run a fever every night that is not present during the daytime hours - they ran some extra blood cultures to try and solve that mystery - we don't have results yet.  That's all for now - keep praying for that elusive TURNAROUND we are still hoping everyday will be "THE DAY" ;) 
love to all!

Tuesday, September 7, 2010

FINALLY some progress in PLATELET LAND!

Good Morning everyone!
Thank you so so much for all your warrior prayers that you have been lifting up for dad!! His platelet count FINALLY saw some improvement today!!  It went from a 2 yesterday to a 6 today - which is still very low but at LEAST it is moving in the CORRECT direction finally!  So we will take the good news!  Dad has been really anxious and discouraged and last night was a really long restless one so THANK GOD for the good turn today!  His blood is still really low today and he will be getting transfusions of both blood and platelets today.  We are PRAYING HARD that things will continue to improve over the next several days so that we can experience that POSITIVE TURNAROUND that we are SO ready for!  Thank you again to ALL OF YOU for all of your STRONG WARRIOR PRAYERS- please please keep them coming!!  I will update again soon :) love to all!

Sunday, September 5, 2010

Serious Prayer Request!

Ok - calling all PRAYER WARRIORS!!!  We need some serious prayers .... Dad is still not able to make his own blood or platelets yet and we are all struggling to escape discouragement.  Dad has had platelet transfusions every single day and his platelet count continues to fall- today he is at a mere 2 (normal is 50) - this is a cause of not only worry for us and dad but of discomfort- when his platelets are this low his nose and throat among other things continuously bleed.  They have not been able to figure out why his body is rejecting the platelet transfusions- they even tried switching to single donor bags yesterday but based on his low number this morning that wasn't the solution.  So, please please please pray hard for him today and for us - especially for mom who is being SO strong standing right by him as all of this is happening.
We want everyone to know how MUCH your prayers, support, and love have meant to us through this whole thing and how much they continue to be such a source of strength and hope for us!  I do want to ask however that if you are talking to any of us (me, mom, especially dad! and i don't want to speak for dan but ya know) that you please please rely on these blog posts for info and updates on dad's condition as it is really difficult for us to talk about right now and we are trying to keep our focus strong and positive and talking about the "scary stuff" accomplishes the opposite for us... that said we DO want to keep everyone informed and "in the loop" so i am trying to update lots and PLEASE feel FREE to comment with questions if you have them and i will happily share what i know- or you can email me and i will do the same.  If you want to call dad please do - but share a funny story or happy memory - you wouldn't believe how MUCH he perks up when someone calls and makes him laugh and forget about all the "tough stuff" for a while!! It is such great medicine for him :) His mental and emotional strength are just as important to his health as anything else right now and so we want to minimize the amount of sick talk he has to do - thank you all so so so much with you help with this and for your understanding :) Keep praying please - we need them and they mean SO MUCH! 
Love to all!

Wednesday, September 1, 2010

Day +22 - Prayers NEEDED!

Hi All!
Well, today things went very smoothly and efficiently at the hospital- which was VERY nice and a NEW experience ha ha - we actually got to eat dinner at dinner time and not bed time ;) so, thank you b/c that MUST mean that after reading this morning's frustration filled entry that you guys all prayed for a better experience today! and it WORKED!! :) 
So, i must request all of you motivated prayer warriors to give us a different "boost" for tomorrow :) Dad had low grade fever during the night last night and it persisted through the day today :( - this is of some concern to the doctors especially when paired with the fact that he has not started producing his own blood cells and platelets yet.... they told us today that they feel like now by day +22, he should be doing that now and there are many different factors that could be the culprit, including but not limited to, some sort of underlying infection that they have not identified- they will be taking some new blood cultures and extra tests tomorrow to investigate that possibility......... so, please please please say SERIOUS prayers that he DOES have a turnaround day and SOON....... like TOMORROW..... so that we and he can feel more confident about EVERYthing - his energy has been SO low due to the lack of blood that our walks have been totally on hold yesterday and today and it is very discouraging to dad to see the people that we were on the transplant floor with (that he used to run laps around!) looking as though they are doing much better than him now...... we are concerned but of course trying to stay hopeful and optimistic that tomorrow could be OUR DAY!  it is exhausting that there are so so many ups and downs throughout this process it is TRULY a marathon and not a sprint!  we love you all and you and your prayers have carried us through SO much - please pray hard for us tonight!!!  love to all and more in the morning! xoxo

Day +22

Hi All!
Well I arrived back in Houston yesterday and Dan and Kay went home; they did a GREAT job taking care of dad and the condo- thanks guys!!
We spent noon till 7pm at the hospital yesterday doing transfusions and labs, got his dressing changed etc... we decided that PART of why did feels SO tired and worn out is that things were a LOT easier to handle when he was in the hospital - laying in a bed for all the techs, transfusions, etc to come to him..... now that he is out they have you running ALL over the hospital only to have EVERY thing run LATE, everything is UN-organized and out of sync - - - they WEAR YOU OUT both mentally and physically....... ah well
Last night dad didn't not sleep very much didn't feel very well - this morning is more of that - please say some "revitalizing" prayers for him this morning as we head into another FULL day at the hospital!
Love to all and more later :)