Family Visits Before the BIG DAY

May 1st today. A new month that will undoubtedly be a memorable one for us. Let's hope it's in a good way.  April was very good to us in many ways. Both of our children & all five of our grandchildren made it down to visit us. The time spent together was precious, especially knowing what their daddy & pap is facing. We all savored the good days & the time we were able to spend together while Ray is feeling so well.

And so everyone is now gone back home to Indiana & we are are quietly passing the next few days as we wait for Ray's hospital admission on Sunday. I have learned how to flush his catheter lines daily so that we are not having to drive every day to the hospital to have it done. It isn't nearly as bad as I thought it was going to be, thankfully. Just call me "Nurse Good-body". I'm doing things that I never dreamt I'd ever be doing. Just goes to show that we never know what's down the road.

Now to share a few photos from this past month of our precious family! Love them all!

Left: Brylee & Gage   Right: Ray, Charla & Hailey

Ray III, his fiance Angie, & Ray Jr.

Ray IV, Pap & Raegan

Pam & Charla

Lft to Rt: Gage, Charla, Brylee, Pam & Hailey

It's a Tea Party! Ray IV, Raegan & Grt-G-pa (Ray Sr.)

~ Romance on the Beach ~ 40 yrs of marriage & still in love... <3

Another Full Day at Hospital

Good golly; thought tomorrow would be a fairly quiet day spent at home when a single phone call came through that changed all that. Apparently they need Ray to be at the hospital early in the morning to have his line flushed, labs done, another bone marrow biopsy, & a CT scan. Expect we'll be there the entire live long day...

Transplant is Back ON

Ray passed the heart Echo Stress test with flying colors today so now it's all up to whether or not the original donor can do it THIS Sunday! The hospital is right now in the process of working with the donor coordinator to contact the donor & find out.

I'll update this post just as soon as we hear from the hospital.

Wednesday update: First Sunday in May! Seems strange to start the process on a Sunday but that's what they do. Let's hope nothing happens to delay it any longer because we are ready to get on with it & get past it.   

Transplant Delayed!

Oh NO! Just as I finished updating this blog to report that Ray's transplant is in 2 days, we received a phone call from his doctor saying that they have given his slight problem with one of his heart valves not functioning to full capacity, a second review. The team of doctors would feel more comfortable with doing some additional tests to make absolutely sure there won't be any issues with his heart because of the transplant. They decided to postpone the transplant for at least a week & are shooting for NEXT Sunday now (April 28th). So Monday they plan on doing an Echo-cardiogram stress test & maybe some other tests.

I found this upsetting to a degree because just today Ray had his "Central Venous Catheter" inserted into his chest. Very strange to think that this contraption will remain there for a few months. It's approximately 10 inches in length & dangles down his chest. They tell us it's a very good thing because all of his chemo, transfusions, blood draws for labs, etc. will be done through it, instead of all the needles continuously poking him.

But dang, had they decided sooner to postpone the date, he wouldn't have had to have this inserted just yet. Now he'll be dealing with it hanging on his chest longer than he would have.

My other concern now is that Ray's donor may not be available the following week! After all, the donor must make arrangements for time out from his life to do this & then to have the dates changed could create a problem. They tell us they have another donor match if the initial one doesn't work out now because of the date changes. But how realistic is it to expect a possible donor to be willing, ready & available with just a few days notice!?

Oh my, the new concerns running through my head now. What if they find something with Ray's heart & decide that he's not a candidate for a transplant? Do we then pack up & return back home to Indiana? Do we pursue other avenues of treatment? I'm trying to tell myself to STOP worrying about what 'might' or 'might not' happen & just deal with each day as it comes. One day at a time.


Anyhow, for some good news; We recently had visits from both our children (Ray III & Charla) plus ALL 5 of our grandchildren. It was a wonderful time & very special. They felt it important to come see their daddy & grandpa before his hospitalization while he still feels good.

 

We want to thank everyone for all their words of encouragement we've been receiving. 


And so our story continues. Stay tuned right here for more as it happens. As ever, ~Pam~

Going Through the Motions

Yes, we are going through the motions taking each day as it comes. This place Ray & I find ourselves in now still seems so unreal. So many folks comment on how looking at & spending time with Ray, they'd never know anything was even wrong with him. And it's true. He looks great & feels fine. Truly, if it wasn't for the repeated blood work & bone marrow biopsy's, we'd never know he has MDS (Myelodysplastic Syndrome).

One may ask & some have; why would Ray choose to even have the stem cell transplant & put himself through it. After all, as I said he looks & feels fine, so why ask for something that you know will cause you to feel tremendously ill  plus potentially put you at risk of many other things happening as a result of the transplant?  Basically the only cure for MDS is to have a stem-cell transplant.  When Ray asked his doctor what would happen if he chose not to have the transplant, he basically said that it would eventually develop into full blown leukemia & he would "die" much sooner! The choice to have the transplant was totally Rays. He knew that I would support him no matter what choice he made. But it was a choice that I could not & would not make for him. Some of you that know me really well, may find that funny. Enough said!

Me being the inquisitive one & always thirsting for knowledge & understanding of what we're facing, I have already read so much on the subject. I feel that we must be prepared for what may lie ahead. Sometimes I think that maybe that's not really the best thing because it scares me deeply. Reading so much about others who have gone through this journey, I've learned of many success stories with happy endings. I have also read some stories of not so good results. But gosh, isn't that true of most things. Ray is going to be one of the SUCCESS stories!

I realize that, yes, I definitely have control issues but don't we all to an extent?  We, as  human beings, need to have control of some things in our lives... and realistically, the only thing we can control is ourselves. And right now that's just what I'm trying to do in a positive way by trying to hold onto only positive thoughts. But I gotta tell you, it ain't always easy.

"One Day at a Time"
That song floats through my thoughts a lot these days. And really that's all a person can do. I know that I must try to always channel my thoughts to the positive things & actually Ray helps me do that because he is always positive! He never shows that he's scared & hopefully he's not. I'm scared enough for the both of us, but again I ask you, who wouldn't be?

I'm only human, I'm just a woman.
Help me believe in what I could be
And all that I am.
Show me the stairway, I have to climb.
Lord for my sake, teach me to take
One day at a time. 
That's all I'm asking from you.
Just give me the strength
To do everyday what I have to do.
Yesterday's gone sweet Jesus
And tomorrow may never be mine.
Lord help me today, show me the way
One day at a time... 

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What We Learned in Transplant Class

We checked one more thing off our list today by attending the required Transplant Class that's meant to somewhat prepare us for what to expect. Most of it we already knew from previous meetings with numerous doctors, social workers, psychologist, nurses, etc. but it did give us more opportunity to ask questions.

Many things we were told left me shaking my head in amazement. Basically the goal of transplanting donor stem cells into one's body is to replace all of the patients problematic stem cells that are causing all the problems with good ones from the donor. So they kill all of Ray's stem cells with powerful chemo & then inject the healthy donor's stem cells. If everything goes well, those stem cells will go to work spreading through Ray's blood & multiplying into good fighting healthy cells. This is called "engraftment". But unfortunately there is a danger of this process not working the way it's meant to.

One's immune system normally keeps us healthy by destroying anything in the body it sees as foreign, such as bacteria or viruses. A working immune system recognizes cells from other people as foreign, too.If the tissue type match between donor and recipient is not close, the patient’s immune system may see the new stem cells as foreign and destroy them. This is called graft rejection, and it can lead to graft failure. This is rare, because the pre-transplant treatment (chemo and/or radiation) mostly destroys the recipient’s immune system, and donor matching is carefully done. 

Another problem that can happen is that when the donor stem cells make their own immune cells, the new cells may see the patient’s cells as foreign and turn against their new home. This type of attack is called graft-versus-host disease (GVHD) and can cause a multitude of problems. Most transplant patients experience at least some of these problems but to what extent varies from patient to patient.

Because of the non-existent immune system that results from the chemo plus the possibility that the new donor stem cells could try to attack Ray's body, the precautions we must take to avoid germs & disease seem extreme but necessary. As you know, Ray's immune system is already greatly compromised & we've been trying to be extra careful in many aspects. But after the class today we realize that we probably haven't been careful enough.

Sure, we wash our hands constantly & use sanitizing gels when out. Ray often wears his mask when he feels it's needed. We refrain from eating out at certain places & avoid eating from common/shared snack bowls, etc. He doesn't drink soda from fountain dispensers or use condiments from fast food places. If we know someone is showing signs of illness, we stay away from them. Ray uses paper towels to dry his hands so he's not sharing towels. So yes, we take precautions now. 

Anyhow, today we were given handouts listing many Do's & Don'ts that we never considered & forced us to look at things differently. Yes, we can eat out but with many precautions; things we never would have worried about before. No KFC chicken cause one can't know how long it's been under the warmer. No water or ice in restaurants unless it's bottled. Nothing that has garnishes on it, like a leaf of lettuce or parsley, etc. Of course NEVER eat food in a restaurant prepared by someone that wasn't wearing gloves. Truthfully, how would you know if it was or wasn't? Never eat raw fruits or salad items in a restaurant either. So after class we stop at Bob Evans for lunch & the potatoes were sprinkled with bits of parsley & the little cranberry relish was sitting on a leaf of lettuce! In class they told us that once a food item even touches the garnish, it's contaminated & shouldn't be eaten. Oh my. So much for eating out!

And then there are personal hygiene things in the home. I learned that I do something that is definitely a No-No & I would never have thought of it. After washing dishes the dish cloth must be washed each time! What! I can't use the dish cloth to wash my dishes for at least a couple of days? They said absolutely not. Never hang it over the drainer or faucet to dry & use it for another sink of dirty dishes. So many other things to be careful of too.

We learned lots of side effects that may or may not happen following the transplant. They spoke about typical daily routines in the hospital & it sounds like Ray isn't going to get much un-disturbed sleep because at least every four hours around the clock they'll be doing things with him. They have a pull-out bed for me if I choose to stay with him all night but it sounds like that will be up to us to decide if it's necessary. I've promised Ray that as long as he feels he wants and/or needs me there, I will remain. I'm sure I'll come home occasionally to fetch things & to get rest if I find I can't get any there. We live only 11 miles from the hospital so if I'd go home, I could quickly return if needed.

There was a LOT more covered today in class. So much information that my head is swimming. But we are handling it & doing the only thing one can do; take it one day at a time & cross whatever bridges we come to...

Taking More Notes

Goodness gracious, it's a good thing I write everything down because I'd never be able to remember all the information being thrown at us! Today was another one of those really long days at the hospital, although I'm sure it's nothing compared to what's ahead. 

Today we met with two of his doctors to review & discuss Ray's current status & what lies ahead. Plus he had to sign many consent forms. We met with the pharmacist to go over all his meds that he's currently on plus the many other meds that he will soon be placed on & the reason for them. Most important is the anti-rejection drugs that he'll need to take for a couple of years.  We also met with the Clinical Trials Coordinator of the Bone Marrow Transplant Research department who explained a clinical trial they are currently working on. Of course they would like Ray to voluntarily be part of that trial regarding a drug that has shown some very positive results with preventing rejection in various organ transplants. The clinical trial would test the drug's ability to also have similar positive results with bone marrow transplants.

It's now just two weeks until the transplant. As we sit in the Bone Marrow Transplant waiting room, we overhear many stories & see folks that have already gone through a transplant. So far most of the stories are positive & give us hope. We hear the talk of the hard parts but they all usually end with words like "It DOES get better over time".

We did learn that the 30 days of hospital isolation is not confining Ray to his room. He will be permitted & encouraged to take daily walks in the halls, but he can not leave that area of the hospital. That whole unit that he will be hospitalized within is kept separate from other parts of the hospital & is strictly monitored. The unit has special air filters & other special measures to keep it more sanitized. He will be allowed visitors but they must not have any signs of illness & will be required to follow strict instructions when around him. Flowers & plants are not permitted in the room.

They tell us that if Ray does really well & his blood counts rebound quickly, there is a possibility that he could be released sooner than the thirty days. That makes me a little nervous thinking he wouldn't have that 24/7 'professional' nursing care where they monitor so many things.  But if he becomes depressed & antsy, then home might be better in the long run.

We were told that although the previous three rounds of chemo did not cause him much distress because he didn't really experience the usual side effects of it, this next dose is much more powerful & that he will most certainly experience many bad side effects. (Hair loss, nausea, mouth sores, extreme fatigue, etc.) Normally those issues don't start showing up until about a week after receiving the chemo. He'll probably feel really bad for approximately 2 to 3 weeks before the new stem cells start taking over & doing their job. Then he should start feeling better. Better but not good yet. That will take quite a bit more time. 

He will be admitted & started on the chemo April 21st. The chemo will be administered for four days. On the fifth day he gets to rest & then on the sixth day (April 26th) he will receive the donor's stem cells. So April 26th (Day zero) is when his new birthday is. And it's springtime - a time of re-birth...

Holding Our Breath

The countdown is on now as we are fast approaching T-Day (Transplant Day).  The doctor's are crossing their T's & dotting the I's as they go through their list of checks to ensure that Ray is healthy enough to withstand what they are about to put him through. Today we met with the Infectious Disease physician who gives the final okay on whether or not he's ready. It was an interesting meeting & we learned several interesting things.

Most things checked out ok (kidney, lungs, EKG tests, nutritional status, etc,) But the lung tests showed many nodules present & we were told that he has "Nodual Pneumonia". Never heard of that. The mega blood they took last week was analyzed & showed that he had experienced various things throughout his life that he was unaware of. Was amazing to us what it could show. For instance, apparently at some point in his life he had mononucleosis although he was totally unaware of it. The doctor said that's possible if it was never diagnosed at the time. They could also tell he had chicken pox at one time. And they asked if he'd ever been around many animals because they detected something in his blood that is currently dormant relating to something that is picked up from animals. Goodness yes - he was a dairy farmer for many years & as a child also around turkeys, chickens, pigs, etc. on the farm. It detected several things that are dormant right now but because of his lack of immunity, they could resurface & be a problem. Therefore today he was started on three different anti-biotics as more of a preventative measure.  One to fight off bacteria infections, one for virus infections & one for anti-fungus infections.

The Echo-cardiogram did show that his left heart valve is not functioning as well as it could be but because it's just slightly less than what they'd like to see, they aren't too concerned over it. I asked if the lung thing doesn't get any better, will that delay or hinder the transplant date. The answer was "No". As long as he continues to remain relatively healthy, it's still a go. Because we are in the home stretch now, they want to take every precaution, thus the antibiotics & close monitoring.

It was interesting to learn that after the transplant & his blood counts rebound, down the road he will need to be re-vaccinated all over again, just like a newborn baby. They consider the day of stem cell transplant as a re-birth. Guess Ray will be celebrating two birthdays from here on out!

And so tomorrow we meet with two more doctors to discuss what lies ahead & learn more things we need to be doing now. Next week we must attend a class to learn even more. Makes me wonder just how much more is expected of us. I'm probably already doing a lot of what they'll mention. At least I hope so! I've already done quite a bit in getting our home ready. Washed walls & blinds, laundered all the drapes & curtains, washed all the bedding, etc. Just need to shampoo the carpets yet & wash down a few more walls. Just a couple more days & I should have it all under control & completed.

And I've hopefully purchased enough clothing for his use in the hospital. We were told that he will be expected to get dressed each day & take walks so they recommended certain types of clothing that he didn't have on hand here. Enough to change into clean clothes each day. And of course he needed some nice PJ's so he doesn't have to wear yucky hospital gowns.

Between all this, I am trying to fit in a few check-up type appointments for myself while I can. (Dentist, dermatologist, etc.) So even on the days we don't have to go to the hospital (which are rare) we have other places we need to go & things to do. Hoping next week will be more relaxing. Plus we are looking forward to a visit from our daughter & 3 more grandchildren!

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Tests & Busy Days!

To say that we've been busy lately is putting is mildly. Of course there are the continuing regular trips to the Moffitt Cancer Center but in addition to that we have been busy getting Dad & Randy's things packed & miscellaneous ends tied up in preparation for our passing the "Caregiver Baton" over to Ray's sister Karen. 

Our son, Ray III & Ray's older brother Roger brought our car & a few more things from home down to us this past Friday. It was a nice visit. They left back for Indiana early Sunday morning with Randy & Dad's van. Our two youngest grandchildren (ages 6 & 8) arrived very early Sunday morning to spend the day with us. Their mother (ex daughter-in-law) had brought them down during their Spring Break so that they could see their Pap before his transplant. We loved having them here & it was a fun day! Great Grandpa enjoyed them a lot too.

On Tuesday because we had to be at the hospital all day, Jim & Greg Sheesley graciously escorted Dad to the Tampa airport to catch his noon flight home to Indiana. Whatever would we do without family & friends!? Thank you Jim & Greg! Dad is safely back at his Indiana home. I understand he had an interesting person sitting next to him on the flight - someone with nose rings! Ha ha!

So now it's just me & Ray here concentrating solely on tasks we need to get completed before his April 21st Stem Cell Transplant. The past three days consisted of full days at the hospital as Ray was put through numerous tests to ensure he is healthy enough for the transplant. A couple of the tests didn't show the best results & therefore a few more have been added for next week to rule out any unforeseen problems. The lung test detected some small spots so they want to do an infection test to make sure those aren't a problem. The heart scan showed that one of his valves wasn't pumping as well as they would like so we were told that when it's below 50% (his was 45%) they like to do an Echocardiogram just as a precautionary measure to make sure it's ok.

Ray developed a couple of other conditions this week as well. His right eye became very bloodshot & was throbbing somewhat. We then needed to see an eye doctor right away to get that taken care of. Fortunately right across the street from the hospital was the USF Eye Institute so I just walked in after his tests & literally begged them to squeeze him in & they did. It wasn't pink eye but possibly some sort of infection going on so he was put on antibiotic eye drops & now after two days of that, it's much better. Also a few days ago he nicked himself under his nose while shaving & it swelled up & became inflamed & tender so they prescribed some antibiotics to nip that in the bud too. Needless to say, I went right out & purchased an electric razor for him!

The Moffitt Center requires that I have an alternate caregiver for Ray in the event that I would get sick & be unable to be around him. If I even come down with the slightest illness, I would have to keep my distance. Because I won't have any family here to assist me I asked a close neighbor & friend of ours if she would be willing to be my alternate in case that would occur. Thank you so much Donna Holbrook for generously accepting that responsibility! We hope it won't be necessary but one never knows. Donna actually volunteers two days a week at the Moffitt Cancer Center & is very familiar with the things Ray & I find ourselves now facing. She is the perfect choice for us.

My plans now for the next couple of weeks are to get our place cleaned really well because once Ray has his transplant, 100% of my time will be devoted to his care. Plus it's important to get things somewhat sanitized to protect Ray. We've already installed good filters in all the air vents & changed water filters, etc. Working now on deep cleaning inside. (Carpets, walls, windows, blinds, curtains, etc.) It's what I do best so no problem. Ray is still able to help with a lot of it & I make sure he wears a mask & keeps washing his hands. I'm not letting him off the hook quite yet. He's still able & willing to do things. Besides they encourage him to get lots of exercise so I'm just making sure he does by helping me around here! Of course there are some things I will NOT allow him to do such as outside tasks that would expose him to things he must avoid.   

Oh! We did learn this week that Ray's donor is a 18 year old young man. Young Blood!! We don't know who he is nor where he's from.

This should bring everyone up to speed on where we're at now. All is well. ~Pam~

1st Blood Transfusion

I suppose it was just a matter of time before Ray needed a blood transfusion. He's been lucky that he hasn't needed one before now. Today his hemoglobin level dropped to the point at which they decided to give him two units of blood. What we thought would only be an hour visit to the hospital for labs turned into a five hour visit, making for a long morning. And to top it off, after waiting that long, he ended up not receiving the transfusion yet!

Apparently they must match the blood they give to your blood so they first test it for antigens. Say what? Antigens are foreign substances which causes the formation of antibodies.  An antibody screen is done to test for antibodies that could cause a serious transfusion reaction. If antibodies are identified then the blood bank has to find blood that does not have that antigen in it. Wouldn't you know, they found an antigen in Ray's blood. And unfortunately they did not have any blood in their supply that matched Ray's & therefore had to locate a match outside of the hospital. So because it was going to take a couple more hours or more to have the blood delivered to the hospital PLUS approximately 5 hours to complete the transfusion, we opted to return in the morning. Remember, that's on top of the 5 hours we'd already been there! 

Let's hope tomorrow we get it done in a timely manner. And if not, well then we'll try to remain 'patient'. Hmm... I've always wondered why they refer to people seeing a doctor as a "patient" cause often we're not. I think we need a new term.  And so it goes... 

Followup Thursday 3/21/13:
No problems today. Arrived at hospital at 7:30 AM & Ray received his transfusion and we were back home by 2:00. He's up at the shuffle courts right now shuffling with his Dad! All is well. 

Chemo Round 3 Completed

Ray has finished his third round of chemo now in preparation for the transplant. His stomach is very sore & a bright red from those chemo injections but he's handling it well. Usually within a week or two, those issues resolve themselves.

Today he went for his weekly blood lab work & his white blood count (which indicates his ability to fight off infections) revealed that it's now at it's lowest level thus far. He is dangerously neutropenic (an abnormally low level of neutrophils (white blood cells produced in the bone marrow).  We have learned so very many medical terms over the past nine months! And to think that this time last year we had never even heard of MDS (Myelodysplastic Syndrome). And now we've heard several stories of people that have known others with this disease. The good news is that there have been a lot of medical advances in that area over the past few years.

We have five weeks now to get ourselves ready for the transplant. I am working on doing a few things around our home here such as some outdoor cleaning & yard work because once the transplant occurs I certainly won't have any spare time to do it then. Ray so wants to help me but he has been told by the doctors that he should avoid any contact with soil, grass clippings, dust, etc. And besides that, his energy level is diminishing. He tires fairly quickly whenever he exerts himself in any way. But it's ok, I'm able to do the things we need done.

After Dad & Randy go back to Indiana, I will need to throughly clean the inside of our place but I figure I can knock that out fairly quickly. Because Ray will be even more susceptible to infection I'll need to ensure the house stays closed up & good air filters installed. I plan to scrub the place from top to bottom. There is a whole list of things that are recommended be done in preparing a place for someone who has gone through a transplant. But hey, I can handle that! It will give me something to do, right? :-) 

Anyhow, I'm sure I'll know a lot more about what we'll soon be facing and how to prepare for it when we go through the upcoming educational classes in two weeks. Ready or not...

April 21st - Intense Chemo Begins

Quick update on Ray's transplant schedule; 

We just received some clarification on what happens on the April 21st date. This will begin his admission to the hospital when he'll be started on consecutive days of intense chemo to kill ALL of his stem cells. At that point he will begin the 30 days of total hospital isolation. On the 5th day the donor's good stem cells will be put into Ray's blood stream. He will then be monitored closely to make sure his body does not try to reject those donated cells. Ray is ready to "Get-er-Done"!

Transplant Date Set!

Things are happening faster than we expected but that's good news in most respects. We received word today that the donor found is indeed a suitable match & they've scheduled the stem cell transplant for April 21st. Ray will complete his third round of chemo (scheduled to start next week on March 6th). He will then undergo 3 days of pre-transplant work-up March 25-26-27 that consists of ensuring Ray is in  adequate physical condition to withstand the transplant. He will go through a multitude of tests checking his heart, lung & kidney functions as well as many various other scans (CT, MRI, PET, etc.)

We will also be attending formal Patient & Caregiver education classes to learn the many vital things we'll need to know on what to expect & the importance of his care. There is certainly a lot to learn & lots of precautions that must be taken. Thinking about it can become somewhat overwhelming. 

We do not know who the donor is, nor where he resides. For all we know, he could be from another country. My understanding is that the donor will go through 5 days of receiving a daily injection to stimulate their stem cells. On the 5th day their blood is taken & the stem cells are extracted from that blood.  The harvested stem cells are packed on ice & immediately transported to the Moffitt Cancer Center here in Tampa where Ray will receive them. Once placed in his body, those cells should travel to his bone marrow and begin to produce new healthy blood cells.

This past week was somewhat trying occasionally. Ray began having headaches that sometimes hurt quite a bit & he began feeling more tired that usual whenever he exerted himself in any way. What should have been just an hour visit at Wednesday's weekly blood draw at the hospital turned into a 6 hour wait. His white blood cell & platelet counts dropped again & because of the headaches, they decided he should have a CT done of his head to make sure nothing serious was going on. Those tests came back ok. Fortunately the headaches subsided finally. Last night he had an episode with his acid reflux acting up in the middle of the night. The worst he's ever had it & nothing seemed to relieve it. After about an hour or so of him being in a lot of distress, it finally subsided. If was so bad that if it had went on for much longer, I was ready to phone the hospital.

The doctor decided he should return 2 days later (today) for another blood draw. That visit should have only taken an hour too but it turned into a 4 hour wait! We're not sure what took them so long to get the lab results back, but when they finally received the results, it was realized that his potassium was way too high from the previous test on Wednesday, so he needed to head back to the lab for another blood draw to re-test that & of course that was more waiting. The potassium levels ended up being ok too.

Ready or not, it's happening & each day brings the reality of it all closer & closer. Dad & Randy are scheduled to return to Indiana in three weeks. We hope everyone remains in good health during that time & no unexpected train derailments. I had thought we might have a little relaxing "Us" time alone before we had to face the transplant but because it's been moved up a little, there won't be much. So we're savoring each day we have right now, knowing what we'll soon be dealing with.

Stay tuned for more updates to this blog as things develop. I hope to be able to always keep this updated for those that wonder what's happening. It' so much easier than repeating it over & over to so many, plus it ensures everyone receives accurate information first hand. 
As ever, ~Pam~

Waiting for Donor News

Time is passing & all is well. Ray completed his second round of chemo last week with no problems. He is still feeling fine & continues to get out occasionally & do things within reason. We are trying to be more careful of keeping our distance from folks that appear to be sick. That means there are lots of things we might have normally participated in previously, that we now need to shun away from for Ray's safety.

As I reported in an earlier post, three possible donor matches were found a couple of weeks ago from the National Donor Registry. Of the 3 possibilities, one has a date to get their blood drawn so we should have those results any day now.  The second has not responded yet and the 3rd is currently unavailable.  We are told that it can take weeks to months to get a donor; it depends on many factors such as being able to contact the donor and the donor’s willingness to proceed.  If this donor is not a match (there is a 99% probability he will) they will request more donors.

Now that we are nearing the end of February, we realize it's only a month until we had planned to shuttle Dad & Randy back to Indiana. Our hope was to be able to put Dad on a direct flight home & Ray and I drive the van (with Randy) home for 2 weeks so that we can get all their belongings home, swap vehicles & gather a few more things from our house that we would like to bring back with us since we now must remain here in Florida through the summer to get Ray's stem cell transplant accomplished. However we now realize that would not be a wise thing to do because of the danger involved if Ray would get sick while we're in Indiana. The doctor's have warned us that if he even starts to feel sick or develop a temperature of 100 degrees, they would want him admitted to the hospital & started on IV's to pump antibiotics into him immediately. And we know that should he get sick we definitely want/need to be near the Moffitt Cancer Center & his doctor here in Florida. Therefore, we have now decided to remain here in Florida & NOT attempt the trip home. 

Ray's older brother has graciously agreed to drive our car here from Indiana & Dad's van back to Indiana. Dad will fly home as he did last year.  Now we are crossing our fingers that Ray's dad remains well during his home stretch here. We don't want a repeat of last year when we had to re-schedule his flight because he landed in the hospital 2 days before he was due to fly home. But at age 94, his health is very fragile.

And so, if all goes well & as planned, Ray will begin his next round of chemo on March 6th. He continues to go weekly for blood work to monitor his levels. We remain positive & hopeful, taking each day as it comes & rejoicing in every day that he wakes & feels good! 

Chemo - Round 2 Begins

Thankfully Ray's blood count has improved since last week. YEAH! We spent the whole morning at the hospital today as he began his second round of chemo. His platelets took a really nice hike upwards & are actually nearing normal levels. His white blood cell count took a sweet leap too but still remains at an alarmingly low level. Thus he must continue to be very careful that he doesn't get sick. Even a small fever or scratchy throat, etc. would be cause for him to be admitted to the hospital & immediately be put on an IV to pump him with antibiotics. 

The doctor isn't sure if it's the last round of chemo wearing off  that has caused his blood count to rebound (because chemo can cause a drop) OR if it's the chemo fighting the disease. Therefore, we may or may not see the counts drop again as he begins this second round. Time will tell.

We have been spending a little more time at home because of our concerns about catching a cold or the flu. Sickness has really been going around here in our park. Ray continues to feel just fine & we both are rejoicing in every good day we have!

Match Found! Postponed Chemo

Good News this morning!

They've found 3 possible initial donor matches for Ray on the registry so far. Next step is to:

#1 ask if the donor is willing (they always have the option of opting out) & 

#2 If the donor is willing, preform a more in-depth donor blood work typing to ensure the donor matches Ray's HLA antigens (thus greater chance his body won't reject the cells).

Yesterday was suppose to be the start of Ray's second round of chemo, however because his white blood cell count (determines his ability to fight off infection) had dropped even more, it's been postponed for one or two weeks to see if it rebounds any. His doctor wasn't sure if the continued drop was due to the chemo treatment or the disease itself. The good news was that his platelet count had rebounded somewhat (although still nowhere near where it should be). The bad news because of the platelet rise is that I must begin giving him those dreaded Fragmin shots to his stomach again. But hey! we can handle that if it means his platelets are better & no need for any transfusions!

Yesterday the doctor asked Ray how the weekly steroid pills were working out for him, was he waking up in the middle of the night wanting to clean the house yet? Ha ha! Yeah right! So this morning it dawns on Ray why he wasn't tired & stayed up way later than usual last night - the mega dose of steroid pills he pops every Wednesday! He's out right now pitching horseshoes & talking about playing tennis again. Just can't hold the man down. I certainly want him to do things that he enjoys but at the same time I want him to be more careful & not expose himself to injury nor illness.

So Super Bowl Sunday is fast approaching & we'd like to go to the Club House for the Party & snacks. Although we realize that with the flu that's going around lately it's probably not a wise thing to go where there are crowds of people, we can't just stop living. We just need to take a few extra precautions & be vigilant about washing our hands & not touching them to our face...

We remain confident that Ray's doctor is doing all that can be done to help Ray. I actually discovered on 'YouTube' a seminar that his doctor presented this past October. In viewing it, the information that he shares is exactly what he has told us during our consultations with him. It explains Ray's situation very well. The video is 1 hour long but in viewing it myself, I think just the first 20 minutes of it provide info as it relates to Ray. The rest gets more technical & will lose you. If anyone wants to know some of what we're dealing with, I'm providing the link here. As it relates to Ray, keep the following in mind; Ray falls into the category of high risk patients & he's on the "Vidaza" med he refers to & is a patient that they want to preform the stem cell transplant on within 3 or 4 months.

Here's that link: Click here for Dr. Komrokji MDS Presentation 

And that's all for this post folks.  

 

 

 

No Family Matches

Unfortunately we just received word that Ray's sister was NOT a match either. And we were told that Randy can NOT be a candidate because it's common for people with downs syndrome to develop leukemia in later years & they wouldn't want to inject those type stem cells into Ray. MDS is often referred to as pre-leukemia because if left untreated that's what it usually develops into.

The next step now is to check the National Donor Registry for a match. We've been told that Ray has a 75% chance of finding a match there. Although it's not the ideal way to go because an un-related donor increases the odds of his body possibly rejecting the donated stem cells. But it's the only option we have right now. However there are many success stories of un-related donation transplants & we hope to be among them! 

Because so many have offered to be tested to see if they are a match for Ray, I need to share this;  Siblings are tested 1st & if no match then they search the World wide Donor Registry. They will NOT under any circumstances allow anyone we know (other than siblings) to be tested. They won't even test our children. Apparently statistics prove that children rarely match. We were told that the only way they'd test a patients child is if 2 brothers married 2 sisters because they would share the same DNA on both sides. Interesting huh? Ray's Uncle Johnny & Uncle Harold actually did marry sisters. That doesn't help us out any tho. It MUST be anonymous.We even know someone here in our park that is already on the Donor Registry & a few others that said they want to be tested to see if a match but rules are rules & the hospitals say absolutely not. So if someone joined the registry, they could be called one day to be someone's stem cell donor but they wouldn't know who it was, nor where they lived, or anything. Ray could actually have a donor from another country but we wouldn't know it! The Donor Registry is almost 10 million strong.

We were told today that there is a possibility that if Ray's white blood cell count doesn't rebound, they may need to start him on some additional medications to help with it & possibly delay next weeks chemo sessions.

There is a lot of sickness beginning to circulate around our park here lately. But folks are pretty good about staying in & away from others so as not to infect them. We certainly appreciate that!

Counts Remain Alarmingly Low & Donor Results

Just a quick status update:

Ray went to his weekly blood draw today. His platelet count did not improve - it actually dropped another point (down to 24). But at least it isn't quite low enough to require a blood transfusion yet. That won't occur unless it drops to 20 or below. The normal desired range for platelet counts is between 116 & 329.  His white blood count (WBC) that determines his immunity dropped more. A normal WBC count is between 3.4 & 8.7 - Ray's is at 0.6.   That's the lowest it's been since all this began. Not good. Previously the lowest WBC count he'd had was 1.3. And right in the middle of one of the worst flu seasons...

We received word that Ray's two brothers did NOT match Ray as a donor. Interestingly though, his two brothers matched each other. We are still awaiting word on whether or not his sister is a match. And if not, we may be looking into whether or not Randy could be a candidate. The verdict is still out on that possibility.

And finally, I am pleased to report that Ray continues to feel fine!

Blood Counts & Insurance Scare

Ray's now 2 weeks past the end of his 1st round of chemo & still continues to feel pretty good. He continues to go each week to have his blood checked. This past week's CBC (Complete Blood Count) showed that his platelets had dropped significantly. Normal range is between 116-329 but Ray's is now at 25 (down from 46 last week). We are told that if they drop below 20 he will require blood transfusions. This is not totally unexpected following chemo but we are hoping that they rebound this week.

The past couple of days Ray has had a bout with his stomach bothering him but that seems to be getting better. And no, it's not my cooking! 

Three of Ray's siblings have now completed their part of getting tested to determine if any of them are matches for the upcoming stem cell transplant. We are now just waiting to hear from the Moffitt Center on the results. 

We sure had a scare this week as several hospital bills began to trickle in. They showed that OUR portion as out-of-pocket coinsurance was $2,500 per every day of chemo! Doing the math told us that the 7-day round equaled  $17,500. Thus the 4 rounds planned would equal $70,000! I gotta tell you, I was freaking out. So I got out our insurance brochure & thankfully if I understand it correctly, the maximum 'catastrophic per calendar year' amount we're responsible for is just $5,000. So ok, we'll handle that amount & be ever so thankful for insurance. Ray will turn 65 by the end of this year (Dec 2) & will then become eligible for Medicare which I imagine will then take care of all these numerous co-pays. At least that's our hope. How in the world do folks manage without medical insurance!? Sadly I suspect they do not get the care they need.

On another note, Dad (Ray Sr. age 94)  took a tumble on the shuffleboard courts this week. Burgered up his finger & knee pretty good. Took the skin off a finger & it took us 2 days to get the bleeding to finally stop. He's pretty sore from the jar of the fall. Thinking he may have to give up his daily shuffling because his balance is so bad but Ray & I aren't voicing that to him. Rather we are leaving it up to him to decide because he so loves shuffling & it's basically the only exercise he gets & seems to be what keeps him going each day. Our dilemma is do we insist he stop shuffling for his own safety or do we allow him to continue if he so desires because it's one of the few truly enjoyable things he has left in life? Do we toss the dice & hope he doesn't fall again while shuffling? It's tough.

Chemo Round #1 Completed

I'm happy to be able to report that Ray has successfully completed his 1st round of chemo without any problems! He did NOT suffer any of the usual bad side effects. No nauseousness - yeah! His only complaint is that his stomach is very sore from all the injections. (21 shots over the past 7 days) but that's minor in the scope of things.

So as I sit here composing this blog update I realize that we had been worrying needlessly over what "MIGHT" happen. I've told myself to not do that, but it's very hard when you hear & read so much negative things related to MDS.

Last week the donor test kits were mailed to Ray's three siblings to discover if any of them are a match for his upcoming stem cell transplant. I'm thinking we should know within the next two weeks. We've been told that statistics show that there is a 25% chance of a sibling being a match. And that if none of them are, there's always the world wide Donor Registry to pull from & the chance of a match there is 75%. BUT a sibling is a much better choice because it reduces your chance of your body possibly rejecting the donated stem cells. 

Interestingly we learned that our children are NOT donor candidates because statistics show that the chances of them being a match are very low because only 1/2 of their DNA belongs to their father. We were told that the only time they would even consider testing a patients child is if it was a case of two brothers marrying two sisters, in which case they would share DNA on both sides. That makes sense.


The weather here is fantastic. Unseasonably warm. Did I say 'warm'? Try HOT. I finally broke down & flipped on the air conditioning today, despite Ray's dads objections. His idea of perfect room temperature is 80 degrees but with the humidity here, it was becoming unbearable for me & Ray.  I set the temp to 78 degrees to at least allow it to run & control the humidity. I'm sorry but if Dad needs to sit in here with his jacket on, then that's what he'll have to do. I can only take off so many clothes!

Anyhow, Ray gets a breather for 3 weeks before his 2nd round of chemo starts. He'll continue to go once per week for blood work to monitor things but that's fine. Unless something changes, I probably won't be updating this blog until then.
 

Chemo - Day 2

The second day of treatment didn't go nearly as fast as we thought it would. We felt certain that we'd be in & out of the hospital in slightly under an hour but alas, we were there for 2-1/2 hrs. They don't prepare his injections until he arrives & then he's to receive it within 30 minutes of being placed in the chair.  I suppose we just need to learn to be patient & realize nothing rarely happens quickly in a hospital environment. 

It's sad to see so many people in different stages of cancer awaiting their chemo treatments. The room is always so full with so many obviously very ill & fighting for their life. If they can sit quietly & wait their turn, then we can too.

Ray had a bit of insomnia last night which is unusual for him but we're not sure it was related to the chemo. He is a bit more tired tonight than usual but no nausea! Yeah! So basically, all is well & we are ever so grateful for that. But I think I must be having sympathy pains cause I feel extra tired tonight too. The man still has more energy than me!

Did I mention that after only 2 days, the nurses there already have Ray's number? As soon as he walked in today, one of the nurses smiled & jokingly told the other nurses nearby to keep an eye on him cause he's a trouble maker! Must have had something to do with him ordering that Busch Light beer yesterday when she asked him what he'd like to drink with his meds!  

The Chemo Treatments Begin

The day we've been dreading arrived today; the start of Ray's chemo. We spent six long hours at the hospital, mostly waiting. Because it was the 1st day, there were extra steps involved like his blood draw, etc. Out of the 6 hrs there, probably 5 of those hours were spent just sitting in waiting rooms. But I had my novel to read & Ray worked on crossword puzzles. Still, it makes for a long day.

The next six days of chemo should go much more quickly. Basically he will arrive & check in, then he's taken to a room with a nice recliner & TV to watch. They give him a pill 30 minutes prior to each treatment to control any possible nauseousness & then they administer the chemo via 3 injections into his stomach. Then he's free to go home. He also is to take a pill each night to prevent nausea. So as I write this update, it's been six hours since he had the injections & so far, so good - knock on wood!

We can handle this! Because of the frequent trips we must make, we are thankful that the hospital is only 11 miles from our place. In Indiana it would be 90 miles round trip.