No Complaints So Far...

It's kind of strange to have so much free time on our hands, but nice.  This post is just to give folks an idea of what we're experiencing right now on a daily basis & to give an idea of the hospital environment.

Ray's 1st night of receiving chemo (Sunday) went well. He dosed on & off between the all night visits by the nurse. I'm sure that he didn't get much sleep but the next day he said he felt just fine & didn't even take a nap. He has his laptop & is playing a lot of "Spider" card solitaire to pass the time. Plus he's been watching his beloved Cincinnati Red's baseball games.

Me on the other hand hardly got any rest that first night. The pullout sleeper is a nice size but it's hard as a rock. Plus being in this new environment will take a little getting use to. I decided when I got up the next morning to go home & get the thick foam waffle pad from one our spare beds, along with my nice king size body pillow. Gosh did I get lots of looks carrying that large bedroll in here. While at home, I was able to sneak in a much needed short nap before heading back to the hospital. 

We've had lots of people popping in throughout the day, each with their own bits of information & instructions. The case worker to explain how she'll help us with any insurance issues we may have, the social worker to offer any aid she can with dealing with numerous things, the physical therapist who visits each day to run Ray through a half hour workout, & the Chaplin to offer his spiritual comforting, to name a few. Each & every morning a whole group of doctors, nurses, aides, etc. appear together for a brief check on Ray. Usually 6 to 8 of them lining up around us in the room. And all throughout the day his assigned nurse & tech are in here checking on things & seeing to this, that & the other.

Today they strapped a new apparatus on Ray that he'll wear over his shoulder for the whole time he's here. It contains the anti-rejection meds that will continually pump into his body to hopefully prevent his body from rejecting the donor cells when he receives them. We'll refer to it as his "Man Purse". As if dealing with the awkward port in his chest when taking his daily shower wasn't enough, now he's got this purse too. Oh well.

Ray playing on his computer with his "Man Purse" strapped on him.

The man-purse has a box held in a plastic pouch that has a tube running from it into one of the ports in his chest. 

 If you're picturing Ray laying around all day in a hospital bed, that's not how it is. They want him to get up  and out of bed & dressed everyday. Knowing this I bought him several sweat pants for comfort & several button down shirts so the port is easily accessible by the nurses. As instructed, Ray walks at least two miles a day & I usually accompany him. Although he is confined to this isolated unit of the hospital, he can walk out in it's halls & was told that eleven trips up & down the hall equals one mile. They want him to walk every day even when the extreme fatigue sets in as a result of the chemo & transplant.

Meals here are pretty nice with a large variety of choices.We make a pretty large selection from the menu for Ray, that he usually can't finish eating all of. That works out nicely for me because I can eat his leftovers. Otherwise they'll just throw them away. I also brought some snacks & drinks from home. They have a nice little common lounge on the wing with a refrigerator we can put things in. I am not permitted to use Ray's private bathroom but they have a couple of restrooms just outside the door that are handy to me. And if I actually stayed here 24/7 (as some families need to do) they have a very nice shower area available for them. We are so fortunate to live close whereby I can simply run home to shower, pick up things I may need, or do laundry, etc.

Yesterday I had a small headache most of the day (I think from lack of sleep) so last night after the nurse got Ray's chemo started, I popped two Motrin PM's & retired to my newly made - now comfy bed & slept very well, thankfully.While I slept, Ray received his 2nd round of chemo & that went fine. I'd hear the nurse come in throughout the night but it really didn't bother me. She kept the lights down to a minimum & whispered to Ray. Who would have ever thought I'd be ok with another woman whispering to my husband in bed & in semi-darkness!? LOL 

There are about a dozen other transplant patients on this floor right now & as I over hear some of their stories, I must count my blessings & be ever so thankful that we live so close to the hospital. Some live hours away & therefore the caregivers are pretty much confined to staying in the room. And they must find a laundry mat to do their laundry. After a patient is released from the hospital, they must remain within a 15 to 20 min. drive from the hospital for the next 100 days & continue with frequent hospital appointments, sometimes daily. I on the other hand, can easily & quickly go home if I want to, knowing that I can return quickly if need be. I overheard a group of 4 people today say that they are from Puerto Rica & don't even have a car here! And unfortunately insurance usually doesn't pay for hotel stays, which even with a discount for hospital guests, runs about $100 per night! Yes indeed; we are mighty fortunate to be where we are right now.

Admitted to Hospital Today

There's no looking back now. Ray was admitted to the Moffitt Cancer Center today to start the process of receiving a stem cell transplant. The first transfusion of chemo began tonight & it will be repeated for the next four nights. While Ray undergoes his days of chemo, the donor (whoever & wherever he is ??) will be receiving daily injections to stimulate his good stem cells & then those cells will be harvested from the donor's blood & shipped to the hospital here in Tampa. The donor's good life-saving stem cells will be transfused into Ray's body on Friday in the same manner a blood transfusion is given.
                                  

Receiving the chemo now

Many have asked us if Ray will have a phone in his room & what can he receive in his room. Because of all the precautions taken to avoid any germs, Ray will be in semi-isolation in the special Transplant   Unit of the hospital where they are very strict & cautious regarding what's permitted in his room. Therefore he is NOT permitted to have live plants or flowers. However cards are certainly welcome. And he will also have a phone. (Mailing address & phone number below.) Ray & I will both have our laptops with us & therefore any messages sent via email and/or Facebook will be seen by us quickly as well.

Modern technology - gotta love it! We have set up Skype on both our laptops so that we can actually communicate with family members via an application that allows us to see live video of each other on our laptop screens. Great G-pa & Randy really like it too! It's kind of comical to view their excitement when we're visiting with them this way.   It's the next best thing to being there since the distance makes it impossible for them to actually come to the hospital to see Ray. 

Address:
   Ray Beneker - Rm# 4717
   Moffitt Cancer Center
   12902 Magnolia Dr.
   Tampa, FL 33612

Rm. Ph. # 813-745-2457
Be aware however that Ray might not always be available to talk with all that will be going on with him, so please be understanding if  when you call, he can't talk just then.

Ray's hospital room is very spacious & comfortable, complete with a comfy recliner, cable TV, a sleep sofa for me & his own large private bath.  And we like it that there is a thermostat that allows us to set the room temperature that's most comfortable for us. The view outside from his window is nice. It overlooks a garden area & the USF (University of Florida) campus area beyond that, complete with lots of palm trees. The Moffitt Hospital sits in the middle  of the campus. I think Ray's going to be very comfortable here. And I am ever so grateful that we live only a 15 to 20 minute drive from it so I can slip home occasionally when I need to. 
 

Room setup. The mini couch under the window opens into a bed.

The 'View" from Ray's room.

How Transplant Expected to Go Down

As I write this blog update, we are now only two days from when the ball will really start rolling. We had our last meeting with Ray’s transplant doctor this morning & ALL SYSTEMS ARE GO for Sunday’s admission.

Because several folks have asked us for more details about just what’s going to happen when Ray goes into the hospital, I thought it easier to update my blog with those details, thus today’s post.

Sunday evening will be the first day of Ray’s ‘conditioning chemo’. This will consist of four consecutive days of his receiving high intensity chemo to destroy all of his stem cells (both the good & bad cells). This is necessary so that when they transplant the donor’s stem cells into Ray’s body, those foreign donor cells won’t attack their new home which is Ray’s body. This chemo will also take Ray’s immunity down to zero, thus one of the reasons for the need for hospital isolation for a month. They tell us that Ray won’t really begin to feel the common side effects of the chemo until a week or so after he receives it. Those could include nauseousness & extreme fatigue among other things. So the chemo will be administered Sun – Mon – Tues – Wed. Day 5 (Thursday) will be a day of rest.

On the 6^th day (Friday) the transplant will occur. One misconception by many about the transplant is that folks automatically think a transplant is surgery. In this type of transplant it is NOT surgery. Rather it is similar to a blood transfusion, but with stem cells that have been harvested from a donor’s blood. It’s a fairly simple procedure to transplant the donor’s good stem cells into Ray’s body. It’s from this point forward when a really close eye must be kept on Ray to see how his body reacts to the new cells.

One of the biggest problems that can happen is that when the donor stem cells make their own immune cells in Ray’s body, the new cells may see the patient’s cells as foreign and turn against their new home. They could possibly attack vital organs like his kidneys, liver, heart, etc. 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. The problems can range from mild to very serious but they do have drugs to combat any issues that would occur. We are hopeful that because Ray is having this transplant while he’s still in relatively good shape AND because the donor is an 18 year old young man with good healthy cells, he will not experience most of the serious problems associated with GVHD. Thus another reason for the month he must remain in the hospital with around the clock monitoring.

Hopefully this answered the questions some of my blog followers may have had & cleared up any confusion on the subject. It’s now time to pack Ray’s suitcase & get on with this journey.

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~