Friday, June 13, 2014

Unexpected Blessings

Five years have passed since I received that dreaded call on Father's Day weekend.  I had left Ray's bedside for just a few days to visit my dad for Father's Day.  As I left Ray, who seemed to be in good spirits and encouraged me to go, I told him that he better be even better when I returned on Sunday evening.  Instead, I received a call saying that if I wanted to say my goodbyes, I had better hurry back.

The next few hours were a horrible nightmare as doctors tried to convince me to let my husband go.  I think that I reached an all time low in my faith since I had been saved.  I cursed the doctors, I cursed the nurses, I even cursed God for daring to take my best friend, lover, father to my children and husband away from me!

As I posted before, Ray made a miraculous recovery that weekend.  By the next morning, my boys and I were singing his favorite song 
to him. 
   

About halfway through, my husband, who had shown no sign of being aware of us, started humming along and by the end, mumbling the words.  In those minutes, the Lord not only reminded me that we are not alone, but he also reminded me of his amazing grace toward my horrible break in faith.

As I look back on my life, I am made wonderfully aware of the blessings the Lord has poured down on me, even when I had turned my back on him and thought that he had turned his back on me.

People often give me strange looks when I say that the Lord blessed me with the experience of going through my husband's 4 1/2 year battle with Pure Red Cell Aplasia, 2 bone marrow transplants and ultimate passing.  Don't get me wrong, this is absolutely not the path that I would have chosen for my husband, my children, my family and myself.  My husband was a wonderful father, friend, brother, son and lover.  I think very few people could deny that their world was brightened by knowing my husband.  He was kind, witty, smart and compassionate, not to mention, a protector.  So, on the surface, it would seem that what we went through was anything but a blessing.  However, in many ways, it was.

Let me explain.  During the 1 1/2 years of courtship and engagement and then nearly 6 years of marriage, my husband and I faced more challenges and attacks from Satan than most people face in a lifetime.  I won't go into detail, but I will say that these challenges brought us to our knees over and over again and forced us to rely on God and each other.

While Ray and I were "good" people, we were full of pride and self-reliance, rather than putting all of our faith in the Lord.  We were both making good money, allowing us to have a lot of material things, vacations whenever we wanted, multiple homes and "toys."  We were basically big irresponsible children who thought we had it all figured out.  We took all of our "blessings" and each other for granted!

With each challenge that we faced, we became a little less sure of ourselves.  We learned the hard way that just because were both "control-freaks" didn't mean that we had control.  We learned to lean on the Lord and to treasure the gift of each other.  The 8 1/2 months that we spent in the bone marrow unit were some of the most challenging days of our lives, but also some of the most precious!  How many couples get 9 months of just about 24 hours a day to spend with each other.  Under normal circumstances I do not recommend this, but for us, it was amazing.  I may have only had 7 1/2 years to know my husband, but I probably spent more one on one time with him in that time than some couples have in a lifetime together.

Besides the time that we got to be together, I had another blessing from this experience.  Prior to my husband's illness, I had always been known as a high maintenance, spoiled "princess."  I was definitely not much of a nurturer, more likely to tell someone to "suck it up" rather than to have compassion and assist them when they were sick or suffering.  When I look back, I really don't like that person that I was!!!  Having been an athlete my whole life, I saw people who were struggling as weak whiners who needed to toughen up and not bother me.

While I was taking care of my husband, changing bed pans, keeping doctors on track and keeping nurses from administering the wrong drugs, while navigating the dynamics of my husband's family and my very young children's needs, I suddenly didn't seem so important.  I learned that I could put someone else first and that with the Lord's help, I was full of compassion and nurturing.

During the transplant, I was laid off due to my company pulling their business out of my state in the middle of this time.  I found myself out of money, facing a $1700/ month cobra payment on top of two mortgages and medical bills.  The day I found this out, my husband was on major doses of morphine and prednisone, causing him to have drug induced psychosis.  He was out of his mind, throwing things and cursing everyone out.  He didn't even know who I was.  I remember crawling in his bed once he was sedated, crying and trying to tell him what was going on.  He was totally unaware that I was even there.  I finally started praying in my desperation.

The next morning, they were able to lower my husband's medications and I described what had happened and about my job loss.  He then told me to go over to the cabinet in his room and get his passport holder.  For a minute I thought that he was still in a state of psychosis and told him that we had no need for our passports right now.  He laughed and said to trust him.  So, I brought his passport holder over to him.  He reached in and pulled out over $30,000 as my jaw dropped to the floor.  He had put the money aside for a "rainy day" and figured this was it.  After I lectured him for hiding that kind of money in the bone marrow unit, I was filled with peace that we would get through this.

The next months were a roller coaster that you can see in my earlier posts, but in the end, I would do it all over again and thank the Lord for the work he did in our hearts during those days.  I still miss my best friend, but I am truly thankful that the Lord answered our prayers by ending his pain.  Of course I would have selfishly preferred he heal him and let him remain here with us, but he did answer our prayers. 



"Blessings"



We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
And all the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise

We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your word is not enough
And all the while, You hear each desperate plea
And long that we'd have faith to believe

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not,
This is not our home
It's not our home

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near

What if my greatest disappointments or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise

Wednesday, November 25, 2009

It is a little late,

but, I realized that I hadn't updated this since before the 2nd bone marrow transplant.

As I alluded to in April, Ray's 1st BMT failed to engraft. Because over 60 days had passed from the transplant, they decided to do another full transplant with chemo and everything. Unlike the first transpant, Ray suffered from day 1. The second transplant caused him to get Lymphoma and another type of pneumonia. The lymphoma attacked his intestines and kept him from being able to eat. Finally after about 5 weeks of no food, they put him on TPN (IV nutrition).

On Father's day, we almost lost him. I had left on the Thursday before, to visit my father and Ray was doing better. We even had him walking with a walker. He promised me that he would be even stronger when I returned Sunday evening. However, the morning of Father's Day, I received a call from the PA saying that I needed to hurry back if I wanted to say my goodbyes. I don't think that I had ever been so scared in my life! When I reached the hospital, Ray didn't seem to recognize me. He had a tube down his nose to keep the fluids from backing up in his stomache. This was making it difficult to keep his bipap mask on for his sleep apnea.

The doctors warned me that his breathing would probably continue to deteriorate and we would have to decide whether to put him on life support. They explained to me that most patients from the BMT unit don't ever make it off life support and that if he did, he would not have a very high quality of life. They were basically telling me that it would be kinder to just let him go. I wasn't giving up that easily though. I made the remove the tube to his stomach so that I could get his bipap mask on correctly. I then sat by his side and prayed the entire night. By the next morning, his oxygen saturation was beginning to improve and he recognized me. They had to put the tube back down into his stomach to keep the fluid out, but, he continued to improve over the next few days. We were even able to have a little Birthday party for Alex in the Bone Marrow Unit.

Unfortunately, a few weeks later, the lymphoma perforated Ray's bowel, forcing them to conduct emergency surgery. They warned us that the chances were slim that he would make it through the surgery. But, they did not know my stubborn husband and God's will. Ray not only made it through the surgery, but made it through a second bowel perforation and surgery a few weeks later. In addition, he made it on and off life support throught the month of July.

Due to slow engraftment, Ray was given several boosts of his brother's stem cells. Finally in August, they discharged him to our apartment in Gainesville. Ray was doing pretty well. He was walking with the assistance of a walker and started physical therapy. However, after a week, his left knee started swelling and giving him agonizing pain. Then one day when we were leaving the clinic, Ray slipped and I could not keep him from falling. During the fall, he twisted his knee and he had to be re-admitted. Ray was convinced that he was never going to make it out of the hospital.

Over the next couple months, we tried moving Ray to an acute care hospital (which was a total joke) and a skilled nursing facility. It soon became apparent that there was something else wrong, because Ray was loosing weight very quickly (240 lb in Aug. to 144 lb in Oct.). The doctors determined that Ray was suffering from Graft vs. host in addition to the Pure Red Cell Aplasia, Cirrhosis of the liver, iron overload, lymphoma, pneumonia and knee injury.

In October, I had to move back home and go back to work since our Cobra was getting ready to run out. It was so difficult to leave Ray up in Gainesville. He would call me crying, saying that he was going to die up there all alone. I was completely torn between being home with my kids (whom I had been away from for 9 months), my job and Ray.

By mid October, I had Ray re-admitted to Shands. Within days, he seemed to be doing soooo much better. We actually had a birthday party for him on November 17th and took him outside to watch the kids play. After we left, he called me at least 10 times saying how wonderful his birthday party had been! Ray was obviously feeling better as evidenced by this video he created for me:
http://sendables.jibjab.com/view/eaztLMcNZuAAsy41

A few weeks later, Ray was moved into the new BMT unit at Shands. I was in Pittsburgh so, I didn't get to see his new room, but he said that it was just beautiful. He would get so excited everytime a helicopter would come by his window (he was on the top floor) to land on the roof! A couple of days later, I was told that Ray was going to be able to transfer him to a hospital in Tampa so that he could be closer to home while he went through the rehab to learn to walk again. He was scheduled to be transferred that Friday (Nov 6th) at 10am.

The night before (Nov.5th), we must have called each other 10 times, we were so excited! Then, Friday morning at 5am, Ray called me to say that he had an excrutiating pain in his shoulder and he did not think that he would be going anywhere this weekend. The nurses loaded him up on pain medicine and scheduled him for an x-ray and CT to determine the source of the pain. A few hours later, he called to say that the pain was spreading and that he was really worried that they were not taking him seriously. I spoke with the nurse and she assured me that everything was under control.

From the airport, I called Ray and spoke to his mother. I could hear Ray's breathing in the background and the alarms on his machines going off. His mother told me that they had been going off for over a half hour and the nurses would not come, even though she had paged them several times. I called the nurses station and spoke to the charge nurse who tried to tell me that the beeping was because wasn't keeping his oxometer on. I wasn't buying it, so I asked to speak to the PA. He said that he had been in there earlier in the morning and that Ray should be going down for the CT scan. I told him that I thought Ray was getting worse and I wanted him to check on him.

A few minutes later, Ray's mother called to tell me that the doctors were in the room and that Ray's Oxygen Saturation levels were in the 80's even though he was on oxygen. I could hear the doctors in the background trying to get Ray to keep his mask on. The next thing I know, the doctor is on the phone asking my permission to put him on life support. I said, "Yes, do everything you can to keep him alive until I get there!" For some reason, I thought that if they could just do that, I could pray and will him into recovering as he had all of the other times.

Unfortunately, I could not get a direct flight, so, I did not land in Tampa until 7pm and then had to drive to Gainesville. The moment I walked into the hospital room, I knew it was too late. His body was being kept alive by machines, but he had already joined the lord.

Monday, April 27, 2009

I think someone is trying to send us a message...

Ray and I "snuck" down to Palm Harbor Friday night so that we could attend my niece's 1st Birthday. She looked absolutely beautiful and the kids were having a great time. Then, all of a sudden, we hear the back screen door slam and loud screaming from my 2 year old. At first we thought that he had just pinched his finger in the door. But, after we saw blood pouring down his arm, we found that he the door had caught his left pointer finger (he is a lefty) at the henge and when he pulled his arm back, the end of his finger was cut off.

Thankfully, my brother was able to recover the missing piece and brought it up to us so that they could sew it back on. About 4 hours later, we left the hospital with his finger stiched and wrapped up tight.

Today, I took him to his follow up appt. with the plastic surgeon. As she unwrapped the final layers of gauze, we both gasped at the same time. My sons tiny finger was a peculiar shade of grey. She immediately sent us to an orthopedic hand specialist. He put a soft cast on his arm, leaving a sort of open cone around the end of his hand to protect his finger from hitting anything, but allowing circulation. He thinks that we caught it in time to save his finger, but, we won't know until it starts to heal.

It seems like every time we try to take a break from the transplant, something bad happens. hmmmmm.

Saturday, April 18, 2009

Are you kidding me!!!

I probably shouldn't be blogging today, since I am so frustrated. Ray's numbers have been dropping over the last couple days. He had to have a platelet transfusion yesterday and red cells today. The doctors are concerned about a possible brain infection, so we were at the hospital til almost midnight last night so that they could do an MRI of his brain.

To add more stress, Logan (our 4 year old son) had a nocturnal seizure last week and after an EEG and meeting with the neurologist, he was diagnosed with Benign Rolandic Epilepsy. The good news is that they said that if you are going to have Epilepsy, this is the best type to have. 95% of children outgrow it by their mid teens. The bad news is that the medicine they put him on has him flying off the walls. I felt that he needed us right now, so, he is up here in Gainesville with us for the next couple days.

Things have got to start improving around here!!! We will just have to keep our faith in God and keep praying!!

Friday, April 10, 2009

Another bump in the road

Well, Ray is now 51 days out from his transplant and the last few weeks have gone pretty smoothly. However, today we informed that the stems cells should be 100% engrafted, but they are only 12% engrafted. They are going to taper him off of his steroids to see if that helps. If it doesn't start engrafting, they will have to give him another set of his brother's cells.

Needless to say, Ray is devastated. His platelets and red blood count have dropped and he is feeling like this was all for nothing. I have to admit, that this is definitely not the news that we had hoped nor prepared for. However, we have to keep our faith in God and trust that he will heal Ray. Hopefully the news will be better next week.

Tuesday, March 24, 2009

Now that we are on the other side of the mountain...

I figure it is time to catch up on this blog. The last 3 months have been crazy, but worth it! After coming home from Orlando, Ray was brought up to Shands for his pre-transplant work-up. We thought that he would be going home for a couple weeks before they would let him go to transplant, but he basically had one weekend and then he was admitted for the actual transplant on February 13th.

The first couple weeks went quite smoothly. He received his chemo conditioning regimen up til the 17th and then he received his brother's cells on the 18th. He went the first 8 days without showing any real complications. I think we both began to relax a bit, and then, in a one-two punch, Ray developed pneumonia and had to be placed on extremely high doses of prednisone. By this time, he was feeling the effects of the chemo and his kidneys started shutting down. As a result, he was in agonizing pain and was placed on high doses of morphine. Between the halucinations from the morphine, the pain the lack of sleep (he was placed on oxygen, but they did not hook it up to his bipap machine for 72 hours), and the high doses of prednisone, he went into drug induce psychosis for about 4 days.

In the middle of this, my company decided that due to the state of the economy, they would have to cut the sales team outside of California. We quickly negotiated a contract for me to be an independent sales consultant, but, I lost my base pay. I think Ray was secretly relieved that I would not have to answer to an employer for a while so that I could focus on him. I, on the otherhand, was not so relieved. I had left a stable position (albeit, lower paying) to work for my former boss from Pearson again (he had recruited me to this new company) and to represent a product that I was extremely excited about. For now, I am continuing to work the deals that I had developed with TeleParent, while passively looking at other opportunities.

I think that week was an all time low for Ray and I. God must have realized that we needed some hope, especially as we had hundreds of people praying for us, and Ray quickly turned around the following week. By the following Monday, the doctors were saying that Ray would be getting out of the hospital by the end of the week.

On Thursday, March 12th, one month after being admitted to the hospital, Ray was discharged from the hospital. He moved into the apartment that we had rented in Gainesville. For the last week and a half, he has steadily improved, even getting a pass last weekend from coming into the hospital. Our kids came up to visit, and while it was a bit overwhelming for Ray, he was very happy to see them after a month.

Today we came in (Tuesday) and they said that he does not have to come back in until Friday. Whoohoo!!! His counts are holding and he is doing great.

Friday, January 23, 2009

Jan. 23, 2009 Update

Ray came over to Orlando with me to attend a conference. We brought the kids and planned on seeing the Blue Man Group tomorrow night with the kids. Unfortunately, his arm started hurting and swelling, so we went to the ER. It turns out that he had a deep blood clot in his arm from his pic line. The doctor decided to remove the pic line and admit him for the night to try to break up the clot (to prevent an embolism). Of course Ray's main concern was whether he would be out in time for the Blue Man Show. The doctor said, "yes, if the clot goes away in time."

We head back up to Shand's Monday evening for his BMT work-up. Hopefully this won't delay the transplant again!!!