Saturday, January 11, 2014

Being a bone marrow donor and helping save my brother's life!


It has taken me quite a while to have the courage to sit down and write this blogpost. 
I think that it is because my journey of being a bone marrow donor 
and helping save my brother’s life has touched me so deeply and had such an impact on me. 
This experience has changed my perspective on life, so much so that I had to give it some time.
Time for me to wrap my head around what had taken place and what my brother and I had gone through,
 and time to heal, not only physically but emotionally.
It is all still so tender and my feelings are so close to the surface 
that I still have trouble telling the story without crying. 
Crying mostly happy, joyful tears.  
Joy in the knowledge that we have a Heavenly Father who loves us, 
who is keenly aware of each and everyone of us and the trials that we are going through.
 Below is an Instagram that I posted early one morning on our drive to the hospital.
These were the thoughts that came to my mind as I saw the beautiful sunrise that morning. 
Little did I know that the words that I wrote that morning, 
the love that I felt that my Heavenly Father had for me and my brother would truly be what I held on to 
and what kept me going through an intense time during this journey 
and probably one of the scariest moments of my life. 
Throughout this experience I have felt our Saviors love, as if His arms were wrapped around me. 
He gave me the strength to do something wonderful, something remarkable
 but probably one of the hardest things that I’ve ever done in my life, 
and for that I am truly humbled and ever so grateful 
that the opportunity to be my brother, Eric’s bone marrow donor was given to me.  
With that I will begin the story.

Getting the phone call and hearing the words “Eric has bone cancer” 
took me by surprise and seemed almost impossible for me to comprehend.
  It just didn’t make sense. My brother Eric, who had just turned 59, has always been physically fit.  
He's an avid hiker, who swims every morning for an hour and then walks at lunchtime for another hour. 
He is the perfect picture of healthy and the last person I would think would ever have cancer.  
Being healthy and physically fit and the fact that they caught it early proved to be a blessing
 so as hard as it was to hear that he had cancer, 
we felt good going forward as he begun fighting for his life. 

It was the end of May when Eric was first diagnosed 
and he immediately begun an aggressive series of chemo to treat the cancer. 
 Within a few weeks his health quickly declined, he was experiencing an enormous amount of pain 
and it was determined that he would need a bone marrow transplant to save his life. 
Since there are 6 siblings that could be possible candidates,
 we felt confident that one, if not a couple of us would be a “match.”  
All of my brothers and sisters were going to be in Utah for the 4th of July 
so they were able to go in person to be tested in person at the LDS Hospital.
 I was told that a kit would be sent to me via the mail so I waited for the kit to arrive.
 One by one the results came back and not one of my siblings was a “match.”
 I was still waiting for my kit to arrive and I felt anxious about the situation that was unfolding.  
My brother was so sick and in so much pain that things looked grim. 

On my birthday, July 11th, my brother called to wish me a happy birthday.  
He sounded so weak that I hardly recognized his voice. He tried to be upbeat 
but told me that if I wasn’t a “match” that he didn’t think that he could hold on long enough
 to find a match from the national registry, which would take an additional 6-8 weeks. 
I was shocked to her my brother sound so discouraged. 
He is one of the most determined, hard working, "never give up" kind of guys that I’ve ever met.  
 I felt so much pressure and was determined that I was the one that would be his "match." 
Earlier in the day, my dear friend Karen hosted a birthday luncheon
 with a few dear friends which included a yummy birthday cake.
When it was time to blow out the candle, I thought of my brother 
and decided that I would wish that I would be the “match” that he so desperately needed.
 As much as it scared me to go through the procedure of donating my bone marrow, 
it didn’t compare to the fear of losing my brother. 
 Fortunately, I was able to blow out my candle (thanks Karen, for only putting one candle on my cake!) 
 I was happy to share my birthday wish with my brother
 and told him how I truly hoped and prayed that I would be a "match.” 
I have never prayed so hard, along with so many others, that I would be his “match.”  
That was Thursday and my kit didn't  arrived until Monday morning.

I had a feeling that the kit would come on Monday so I didn’t eat or drink anything that morning. 
I was tending three little kids for my friend, while she was at a doctor’s appointment 
and by the time she came and picked the kids up, my mouth was so dry and I was dying of thirst. 
Those of you who know me, know what a sacrifice this is for me to go without my diet pepsi. 

A group of my friends usually gather at my house every Monday to sew and quilt.
My friend, Julie Coyle, came over right when the kit arrived at my door that morning.  
 The kit included a vial which I was instructed to collect about 1 tablespoon of my saliva in. 
 That doesn’t sound too hard but my throat was so dry 
and I apologized to Julie as she was sitting across the table, trying to sew, 
as I was busy trying to spit into the tube.  
Julie, of course, was great!  She was cheering me on, “Come on, Debbie!  You can do this!”  
I love and so appreciated Julie’s enthusiasm as she encouraged me until at last I had collected enough saliva. 
 I closed the vial and shook it up, carefully labeled it and threw it into the prepaid envelope. 
 Julie insisted that we get it in the mail and with that we jumped into her car and headed straight to the post office. 
 After dropping the envelope in the mailbox, we celebrated by grabbing lunch at La Bou. 
 I love that Julie Coyle, and every time I think about her cheering me on and encouraging me to spit, I get the giggles!

It was a long week waiting for the results, although I prayed every night and day that I would be the match,
 by the time the next Monday rolled around, I had almost forgot all about it.
  When I picked up a call that morning and Greta, the bone marrow transplant coordinator at the LDS in Salt Lake, 
was on the other end of the line,  it caught me off gaurd, and then I realized... this is it... and I sat down and braced myself. 
Hearing the words “You are a match with your brother!” was surreal. 
 I couldn’t believe it!  So I asked, “Really, I am?” To which she replied, “You are a perfect match!” 
 I couldn’t hold the tears back.  I was so overwhelmed with gratitude.  Our prayers had been answered. 

 I asked Greta if my brother, Eric knew yet and was told no because of patient rights. 
They always check with the one donating first and get a verbal commitment 
that they are going to proceed forward before notifying the bone marrow recipient. 
 I assured Greta that I was going to be the donor for my brother and with that, 
she said that I could call my brother and share the good news with him. 
 That was one of the sweetest phone calls that I’ve ever made.  
Hearing my dear brothers reaction and crying tears of joy together with him was priceless.

My Insta post announcing that I was a "perfect match!"

Once I hung up the phone on my brother, the reality hit me.  Wow!  What have I just signed up for?  
My mind started swirling and my emotions were all over the board. 
 I felt so happy and yet scared to death at the same time.
  The thought I kept having was, "I can handle anything and no matter how much it hurts 
or what kind of pain I have to endure, I have to do this, I mean, my brother’s life depends on me 
and I have the awesome opportunity to do this incredible thing and give him a chance to beat this cancer."  

 It was Monday morning and right as I hung up the phone, still trying to digest all this, my doorbell rang. 
 It was Julie, who was coming over to join me for our weekly morning of quilting and sewing.  
I told her the wonderful news and we hugged and cried together. 
It was perfect timing and I was grateful that Julie was the first one that I was able to celebrate with.
 She wrapped her arms around me and embraced me.
She listened to me as I tried to express my mixed emotions about the journey that I was about to embark on.  
She gave me the reassurance and confidence that I so desperately needed  and made me feel like “I can do this!” 
 It was just the first of many tender mercies of the Lord that I experienced during this process 
where I felt the Lord placed someone specific in my life to fulfill a particular role that would help me on my journey.  
This was a gentle reminder that He was aware of exactly what I was going through 
and I felt His love through the actions of so many friends and family members
 who were instrumental though out the donation procedure.

When I first signed up and agreed to being a bone marrow donor for my brother, 
I thought it would entail taking bone marrow from my hip.
  That's all I had ever heard about the process and that it was painful.  
My first thoughts were, “this is going to hurt but I have survived giving birth to 5 children without any epidural 
and one very painful emergency C-section so I can handle this!” 
 Mark kept asking me if I had talked to Greta about what the procedure was going to be like 
but I was kind of in denial and didn’t want to know.  
I figured that I wasn’t go to turn back now so what good was it going to do
 to hear how much pain I was going to have to endure. 
 I thought “I’ll just deal with it when it comes.” 
 Fortunately, Allie got online and found out that most bone marrow transplants done these days 
does not involve taking bone marrow from your hip 
but instead there was a new process where bone marrow stems cells are taken from your blood.  
It sounded so much easier and a much less invasive process.  
I was excited and the next time Greta called we chatted about it 
and she confirmed that this was indeed the procedure that I would do. 
 I expressed my delight upon learning this and she responded, “Don’t get too excited,  
although it is a simpler procedure, it is no walk in the park either!” 
 Those words rang true and she was exactly right as I would later find out.  
But still at that time, it gave me great comfort to know what the bone marrow transplant procedure was.
  I am grateful that Allie took the time to do the research and educate me about I what I about to go through.

The next few weeks were busy.  My days were filled with scheduling appointments, getting blood work done, 
filling out pages and pages of medical forms, faxing them back to Greta, 
only to find out that she never received them so I had to do it all over again. Ugh! 
 I was busy making travel plans, booking or rebooking flights
 and trying to get things done at home so that I could be able to leave at a moments notice.  
I had a couple of trips already booked to NYC to move "the little girls" out of their summer apartment 
and then to help Allie and Justin move into their new apartment in Philly. 
 I would have cancelled the trips if they needed me to 
but Greta tried to schedule my appointments in Salt Lake City around them.  

Figuring out the timing was more difficult than I thought 
because a lot revolved around my brother’s chemo and how he reacted to the treatment.  
I tried to do everything that I needed to do so that I wasn’t holding things up and was ready to leave to go.
 I wanted to make sure that I did everything I could to help enable us to move forward with the bone marrow donation.
 I knew my brother was in so much pain so I was highly motivated to make sure this happened.  

At times it got frustrating, hurrying up and getting things done on my end
 and then waiting and waiting to hear back from Greta and her team.  
Plans were made and then I’d get a call and things had changed. 
 Such was the case when I packed up and flew to New York at the beginning of August. 
I planned on flying to Utah on my way home, thinking that the donation procedure would take place at that time,
 only to find out that more doctor tests were scheduled on that visit. 
It kind of took me for a loop and I was a little discouraged when they rescheduled the donation transplant 
and butted it up right against a trip that we had to NYC later in August to attend the US Open. 
 I learned that I needed to learn to be patient and flexible
 or else I surely wasn’t going to make it through this process. 
 I was not in control of my schedule and I had to let go 
and just be available whenever and do whatever they needed be to do. 
 For someone who is a planner and scheduler, this was a hard thing to give up
 but I am proud to say that I kind of surprised myself 
and adapted to “just going with the flow” without too much complaining.
As I mentioned, the bone marrow donation process seemed like 
it was going to be a lot easier than what I thought I had originally signed up for.  
From what I read about it on the internet it was simply a non-surgical procedure, 
which involved being given injections of Filgrastim, 
a drug that would stimulate bone marrow stem cells for 5 days leading up to donation. 
Harvesting my bone marrow stems cells would take place over a two day time period
 in which blood is removed through a needle on one arm 
and passed through a machine that separates out the blood-forming cells. 
The remaining blood is returned to you through the other arm.  Sounds easy enough, right?! 
 I think I underestimated what I was about to take on and was a little over confident and naive.

 I was a little embarrassed by all the love and support that my family and dear friends showered upon me.  
I can’t even begin to list all yummy treats and goodies left on my front door and the lovely cards and notes that I was given.
  As I left for my first round of doctor appointments in Salt Lake, this is what my kitchen island looked like. 
 I felt very loved and I was very aware that I had many family and friends that were praying for me. 
 I am ever so grateful those prayers.  I really do have the best friends!
  I was also grateful to the beautiful priesthood blessing that Mark and Brad Wilkes gave me which gave me great comfort. 
 Little did I know that those prayers and that priesthood blessing would carry me through some difficult days ahead.

I spent two full days at the LDS Hospital in Salt Lake, filled with doctor appointments, 
including a full check-up, lots of blood was drawn which was to be tested. 
 I was given an EKG, had to fill out more paper work and medical history forms filled 
and met with more doctors and counselors explaining the whole process and what to expect. 
 And at the end of it all, was deemed “a viable candidate” to be a donor for my brother.  Yay! 
My patient rights were explained to me and then I signed the important legal forms 
to commit to be my brother’s bone marrow donor.  It was official!
So what did the doctors say that I would experience during this process? 
 As I said, I would be given a injection of the drug Filgrastim every morning for 5 days,
 which increases the production of bone marrow stem cells in my body. 
 I was told the drug could make me feel achy and tired, possibly nauseous, perhaps experience bad headaches, 
 I might have the chills or feel pain in my bones, basically any flu-like condition is a possible side effect from the drug.  
I was told that each person reacts differently to the drug but I might experience one, all or none of these side effects. 
 I thought, “I can handle this!  I mean how bad can it be?  So I’ll be sick for a week.  Big deal!” 
 And since I never had morning sickness or the stomach flu and rarely get nauseous, 
I told myself that I was just going to think positive and power through it and not let myself get sick or nauseous. 
 The doctors said the side effects from the drug would probably be the worst part of the process.  

The retrieval would take place over a two day period following the 5 days of injections. 
 Each morning I would be hooked up to a machine that would draw my blood,
 retrieving the stems cells needed for my brother and then return my blood back into my body.  
I was given two choices of how this would take place.  
1) I could have tubes inserted in the veins of both of my arms, 
one drawing the blood which would be filtered through a machine to retrieve the bone marrow cells 
and then the blood would return back in my other arm or 
2) I could have a pick placed in my neck which would have multiple lines to retrieve and return the blood.  
This was a tough decision to make because the pick was more invasive 
but would make it easier to unhook the lines and gave me the freedom to move around, 
get up and go to the bathroom or just stretch and that seemed like such a good idea 
since I was told to plan on being at the hospital 6-8 hours each day during this retrieval process. 
 The Red Cross counselor also mentioned that I might feel a little anxious or claustophobic being hooked up to the machine. 
 With those things in mind, I chose the pick that would be placed in my neck!
  With all the decisions made and information about the procedure given to me,
 I flew home for a few days before I was scheduled to come back to start the whole process.
Brooke and Ashley both volunteered to give up some of their summer vacation to take care of me. 
 We had a few fun days in California together and then they drove back to Utah earlier than they had planned. 
 I cannot thank them enough for all that they did for me that week. 
 I thought that I would feel well enough and that we could hang out and do some fun things together. 
 I didn't know how sick the drug was going to make me
 and how much I would need the little girls help as they would literally get me up everyday, drag me out of bed, 
dress me (I always feel SO much better dressed for the day and my hair and make up done.
 They made sure that I had time to get ready every day!) 
 They had treats and notes from different family members 
and always a diet pepsi with ribbons tied to it waiting for me in the car every morning. 
 They held my hand when I got the injections everyday and rubbed my back when I was nauseous. 
They didn't complain once.
 They waited on me hand and foot, spending long days at the hospital,making sure that I got 
wherever I needed to be every day,even if it meant that we left the house at the wee hours of the morning. 
 They ran errands for me, picked up anti-nausea prescriptions, grabbed any kind of food item that I craved, 
hoping to find something that I would eat and possibly keep down. 
 They kept me company when I was so sick that all I could do was lie in bed and watch the Disney channel.  
Yep!  We watched Princess and the Pea, Cinderella and Titanic... twice! 
 They were amazing and I couldn’t have done it without them. 
 They came to help me save my brothers life, little did they know that they would end up saving mine.
I flew in on Thursday afternoon.  Brooke picked me up from the airport 
and we immediately went to dinner at one of our favorite restaurants, The Dodo. 
 Their banana cream cheese pie is the best!  Yum! 
 Afterwards, we ran over to the park across the street and took the photo below that I instragrammed.  
Ashley joined us that night in Park City and with the two little girls by my side,
 there were indeed a lot of laughs and giggles.  
It was the perfect way to end the day.
Early the next morning, we drove down to the LDS Hospital in downtown Salt Lake 
and I was given the first of many injections of Filgrastim.  
The next few days are kind of a blur.  It didn’t take long for the drugs to make me to feel pretty crummy. 
 I was one of those “lucky” patients that experienced ALL of the negative side effects that I “could or might” experience.  
ALL of them!  I was achy, tired, and nauseous... REALLY nauseous.  I’ve never been sicker in my whole life! 
 I couldn’t keep anything down and nothing sounded good.  Not even diet pepsi sounded good.  
My head hurt, my bones and joints ached and since I wasn’t able to keep anything down, I was so weak.  
  Brooke was so sweet and documented everything.  
I’ve had people tell me that I looked pretty good considering how bad I felt. 
 I think Brooke must have photoshopped them.  Actually, I know she did:)! Thanks girl!
This was a picture of me getting my first injection by one of our favorite nurses.  
Ashley held my hand every time I got an injection.  What a sweetie!
Visiting my brother after I got my shots for the day. 
Poor thing was so exhausted from all the chemo treatments that he was going through.  Sure do love him!
My sweet Dad came drove up that day to check in on his kids.  
About a week before I started my Filgrastim injections, my brother begun an intensive round of chemo 
which would basically kill off all his bone marrow in order to prepare him to receive mine.  
He was at the LDS hospital on the same floor where I received my shots
 and the bone marrow donation would take place so we would visit after my appointments, 
check in on him and visit with his wife, MaryLynn. 
 It was really wonderful to be able to spend time with Eric and MaryLynn
but also very humbling to watch him go through the pain and suffering that he had to deal with.  
It was a great reminder that whatever I was dealing with paled in comparison to what he had already dealt with 
and he still had a long road ahead of him with no guarantees.  
I knew that after this was over that I would heal and go back to leading my normal life,
he on the other hand was going to be fighting for his life every step of the way.
  I cherished the visits that we had and his sweet wife's positive spirit and grateful attitude.
Eric had a little bit more energy that day and even sat up and smiled when we took a picture.
It was Sunday and by the time we finished with the injections and checking in on Eric, 
we had missed church so we decided to drive up to Bountiful and see the temple.  
We stopped on the way and took this picture and instagrammed about "B"ing a match, 
encouraging people to sign up for the national registry at bethematch.com.
So if you haven't already signed up do it!
We walked around the temple grounds and tried to take a few pictures
but it was a windy day...
and this is what happens on windy days sometimes.
These two are the bestest of friends and greatest daughters a mother could ask for.
It was a great Sunday afternoon with my little girls…
until I got home and the nauseousness began and I felt awful,
but for at that moment I felt great and excited to be able to help my brother
and be with my little girls and it felt like a little bit of heaven on earth.
Getting my injections on the 3rd day.
Sweet Ashley held my hand while I got my shots every day.  
Finally, the day came to start the bone marrow stem cells retrieval process and I couldn't be more excited.  
Excited to get one to the next stage and get it over with.  
I was so sick from the drugs and weak because I hadn't been able to keep anything down at all.  Nothing.  
I was anxious and excited that morning as we arrived at the hospital at 7 am.  
After receiving another injection of Filgrastim, I was whisked off to a surgery room to have my pick implanted,
 which definitely was painful but I think because I had mentally prepared for it,
 I seemed to handle that part of the process much better than I thought I would.  
Here is the one picture of me in my hospital gown so I had to include it.
I don't know why but I felt much worse when I had that gown on 
so I asked the nurse if I could change back into my regular clothes and she said that was fine.
I never put a hospital gown on the rest of the time.  Ha! Ha!
It's a dumb thing and maybe I'm too vain to wear that ugly thing
but as Mark always says, "Look sharp! Feel sharp!" and I feel like it is really true for me.
So I'm back in my regular clothes and the little girls are having way too much fun 
pushing me in the wheelchair around the hospital hallways.
I did indeed feel weird having something sticking out of my neck and it was uncomfortable
 but I had been warned that it would be awkward and I think because I was in so much other pain
 and so nauseated that it was probably the least of my worries, which was a good thing. 

With my pick in my neck, I was ready to be hooked up to the machine,
 which would draw my blood, filter out my stems cells, then return the blood into my body.  
This process would continue for about 5-6 hours until they felt like all the bone marrow stems cells 
that my body had produced for that day had been retrieved. 
 With my girls by my side and my warm blanket over me, 
I got cozy and comfy and tried to relax and let the machine do its thing.  
Once I was hooked up to the machine, I was experiencing this weird sensation of vibration 
and this odd pulsating feeling throughout my body.  
It was as if I could feel the blood circulating everywhere
 and it caused me to feel exactly like they said I would, claustrophobic.
  We tried to watch an episode of Modern Family but I couldn't concentrate or focus at all 
so I finally took some more pain meds and closed my eyes and just tried to sleep.  
My girls were great and held my hand and rubbed my back and tried to help me feel comfortable. 
 At one point, my brother walked all the way from his room to visit me and it was so sweet of him.
 All I had to do was take one look at him and I was reminded that whatever pain or suffering that I was experiencing 
was nothing compared to what he has gone through so I just needed to get over it.  
Minutes later, my Dad showed up to be with me during the day and help me pass the time.
 I felt so nauseous and agitated at that moment and he held my hand and comforted me, 
the way that only a loving parent can and I felt as if my mom was there with us, watching over me. 
 Those were sweet moments that I am so grateful for, to feel the love and support from my family meant so much to me.
Both Eric and I felt truly blessed to be surrounded by loving family members. 

 The rest of the day passed by with only one episode of feeling so nauseous and claustrophobic 
that I had to have the nurse detach all the pick lines and I ran to the bathroom.
Sorry, TMI! I'll keep the rest of the details to myself. 
But I was so glad that I had chosen to do the pick and had the option to get up out of bed when I needed to.
 I don't know how to explain exactly how you feel except maybe anxious, claustrophobic and high strung. 
 But after throwing some water on my face and taking a few deep breathes, 
I was able to go back and get reattached and finish up that afternoon. 
 It really made a difference being able to take a break and regroup. 
 By the time my nurse said that they were finished retrieving my bone marrow stems cells for the day 
and I could go home, I was so ready to leave the hospital and so were the little girls.  
As soon as we got back to Park City, I took more anti-nausea and pain medicine and climbed into bed.  
We were so happy that Day 1 of retrieval was done!  
Just one more day and I would be finished or so I thought!
Getting my last day of Filgrastim injections!  Yay!  I'm SO happy!
With Ashley sitting by my side, holding my hand and taking care of me, 
I'm ready for what should have been a pretty uneventful last day of retrieval. 
 The little girls made sure that I had everything that I needed to make it through the day. 
I don't know who was more excited to get it all over with, the little girls or me!  

We hadn't been there too long when, Greta came in to check on me
 and informed me that they had retrieved 1 million bone marrow stems from me the first day.  
I was like, "WOW! That is awesome!  How many do you need to collect?" 
 I was confused because I was thinking that a million is a dang lot and I was doing great,
 but the look on her face was of great concern.  She obviously did not seem to share my enthusiasm.  
She turned to me and with great disappointment in her voice said, 
"Well, ideally we would like to gather 5 million for your brother."
  WHAT?!!  I quickly did the math and could see that I was in trouble! 
 I was told beforehand that it would only take two days to retrieve the stems cells.  
They assured me that only 2% ever have to do 3 days of retrieval!  At this rate it may take me 4 days! 
 I burst into tears! I was so discouraged and sad, 
partly because I was so tired and sick but mostly because I felt so responsible,
 like I didn't do my part or like it was somehow my fault that my body
 didn't produce enough stem cells fast enough for retrieval. 
 Greta wasn't too encouraging but she did hand me some Kleenexes and said,
 "Well, don't worry, we will see how today goes. 
But yeah, you might was to change your flight for tomorrow."  

As soon as she left the room, the little girls snuggled up on either side of my bed, consoling me.  
We were all exhausted and disappointed, and within minutes we all feel asleep for a few hours.  
When we woke up, I immediately got on the phone to Delta
 to change my flight to the latest flight I could get out of Salt Lake.  
I was hoping that I could come in earlier than usual the third day 
and hopeful they could collect the final amount without a hitch. 
Mark was flying in the next morning to meet up with me, 
so I switched both of our flights out of SLC to the very last flight in the evening.  

As I sat on hold with Delta, trying to rearrange my flight,  I felt more and more nauseous
 and I noticed that my body was starting to cramp up again like it did the day before.  
This time it was ten times worse and no matter what I did, I couldn't shake off the cramps.
  It was like my whole body was having a "charlie horse" cramp and I had no control over what my body was doing. 
 I was in so much pain and discomfort so I told the American Red Cross technician who was monitoring the machine. 
 He acknowledged that I didn't look good and was low in magnesium but hr was busy collecting the blood.  
When my nurse finally came in, I told her what was going on, 
and she acknowledged that my magnesium was low too but didn't offer any solution. 
 The pulsating feelings in my body were out of control 
and my hands begin to feel as if they were paralyzed and I couldn't move them. 
 I couldn't concentrate and it got so bad that I had to give Ashley the phone to finish rebooking my flight with Delta. 
 I just laid there in pain.  It was about as sick as I've ever been.  
The technician could tell that it was really bad so he asked if I wanted to finish for the day.  
Part of me really wanted to but I was so concerned about the stem cell count being so low that I said that I would go on.     

As the hours wore on it got worse and worse.  I knew something was wrong
 but the technician and my nurse didn't seem too concerned.  
 The day before when I was low in calcium and they gave me a calcium drip, and that really helped.
I'm not really sure why my nurse or the technician didn't do anything about the low magnesium that day
but they didn't, so I just laid there and endured the pain.  

Around 1 pm I was in so much pain that I had had enough, I just couldn't take it anymore.
 So when the technician again asked if I wanted to be done for the day and go home,
 I was just about ready to take him up on his offer. 
Right then Susan Duke, one of my oldest and dearest friends, called 
and said that she was coming over to visit in a few minutes. 
 I decided to wait because I didn't want to miss Susan, who arrived about 20 minutes later. 
I tried to pull myself together so that Susan wouldn't suspect anything. 
 I didn't want her to know how sick I was and cause her any concern 
but as the minutes went on, it became harder and harder.  
She was adorable and brought me a huge basket of all of my favorite treats, which was so sweet of her!  
She was cheerful and sweet with the girls but as time went on, 
I finally I couldn't take it any long and told the technician that I was done.  
I sent Ashley down to get the car and told Brooke to pack me up for the day.  
All the sudden I got so incredibly nauseous that I didn't even have time to ask them to unhook me from the machine. 
 The nurse could see it coming and gave me a bag, just in time for me to throw up into it, not once but three times. 
 I felt out of control and just like that, it through my whole body into a tailspin.
  I sat back and the next few minutes are kind of a blur.  
My hands were completely frozen in a strange claw-like position 
along with the rest of my body completely cramping up, and I felt like I was having a seizure or a stroke.  
I just wanted to get unhooked from the machine and felt that would make me feel better and fix everything. 
 I tried to stay calm as Brooke was packing me up and the tech unhooked the lines.
 I asked Susan if she could put my shoes on because I couldn't move my hands.  
She came around to the other side of the bed and knelt down to grab my shoes, 
but she took one look at my feet which were also in an awkward muscle spasm state and looked up at me 
and with a frightened look on her face said, "I don't think you should go home.
 Something is very wrong and I think you better get back in that bed."  
I knew she was right.  And she picked me up and put me back into bed.  

I laid there looking up at Brooke, who had a look of fear on her face
and I wanted to cry, but didn't want to scare her.
  I knew that I was in bad shape, really bad. I had no control over my body. 
 I felt like I was having a stroke and my words were slurred when I spoke.
 I thought, "Why is this happening to me?  
How could something bad happen to me when I was trying to do something good?" 
 And then I thought "bad things happen to good people." 
I knew that there were risks, even though they are extremely rare, 
I had been warned that one of the things that could potentially go wrong would be a stroke or heart attack.  
So I braced myself and at that moment, I turned everything over to the Lord.  

I laid there helplessly, looking at Brooke for comfort, trying to be strong for her,
 and I put my trust in the Lord that "all would be well." 
 I thought of the beautiful priesthood blessing that Mark and Brad Wilkes had given me 
before I left home and that gave me great comfort.  
I honestly didn't know what was happening to me or how it was all going to turn out but I felt at peace.  
I watched as Brooke was frantically texting Allie and checking the monitor on the machine
As soon as Allie got the information about my levels, she told Brooke to run and get my doctor, NOW!
Thank goodness, I have daughters who are on top of things!
While Brooke was gone, getting help, Susan stayed and comforted me,
 and within minutes, my nurse appeared, along with a nurse practitioner,
 a guy with an EKG machine and others who began working on me, trying to figure out what was going on.  
Fortunately, I still had my pick in, so they were able to quickly draw vials of blood
 and an EKG was done, they were trying to assess if it was a heart attack.
  I didn't think so, I really thought I was having a stroke.   

I couldn't even communicate at that moment and by the look on Brooke's face,
 I knew that she was terrified for me and I was so scared that something was going to happen to me too.
 How grateful I was that Susan was there to comfort Brooke. 
 I kept thinking that if something did happen, which would be horrible for Brooke to witness, 
but at least Susan would be there to comfort her and I couldn't think of anyone that would do a better job then Susan. 
 At that moment, it gave me great peace of mind, knowing that and it helped me stay calm.  
This was another tender mercy.  I knew it wasn't just a coincidence that she came to visit right at that time.
I knew that she could help me through this crisis and if it weren't for her visit,
I would have left the hospital and wouldn't have been able to get the immediate help that I needed.
I'm so very grateful to Susan, for being there for me when I needed her the most.

Minutes later, my doctor ran in.  Brooke had tracked her down in the hospital
 and told her what was going on and she came running. 
 She explained that my magnesium level had plummented, something that she said she has never seen before. 
 This was the cause of my muscle cramps/spasms that I was experiencing 
but the main concern was that it could cause a heart attack, thus the reason for the EKG. 
She informed me that they were starting me on a magnesium drip, which would take 4 hours.  
She left for about 15-20 minutes while they set up the drip 
and returned to inform me that she had met with Eric's team of doctors
 and they had determined that I was not to continue the process any longer,
 even though I was scheduled for a third day of retrieval. 
 I told her that I was OK now and that I rebooked my flight and I was fine about staying another day.  
 I begged her to let me complete the donation.  
I knew that the number of stem cells that they had retrieved was low 
and I was worried that they didn't have enough for my brother's transplant.
I felt like I had come this far and I just wanted to finish the job.  
  She said that they had retrieved a much higher amount of stem cells the second day
and she tried to convince me that they thought they had just enough for the transplant to be successful. 
 I still pleaded with her and promised that I wouldn't let this happen again 
(like I had much control over my low magnesium level.)  
She wouldn't budge and finally said, "Debbie, we aren't going to risk losing you in order to save your brother."  
OH!  OK!  I guess what just happened to me was pretty serious!
About this time, we remembered that Ashley was waiting downstairs in the car,
 so we told her to go park the car and come back up.  Susan was such a doll for staying as long as she did 
but now that I felt like I was out of the woods, I insisted that she get back to her family.  
Again, I couldn't thank her enough for being there for me, like she has so many times in my life.

We were all pretty bummed about having to stay at the hospital for 4 more hours.  
They started my magnesium drip and although I was excited to get that going 
because I knew that it would help with my muscle spasms
 and relieve my body of the paralyzed state that it was in, I knew that it was going to be miserable.  
My dear friend, Julie, has to get a magnesium drip after giving birth to each of her children.
 I remember her telling me how miserable it is.  And she was right.  
While the muscle cramps and spasms ended, I experienced a burning/scratching feeling as the drip entered my body.  

About 15 minutes after the drip started, in walked our dear friends, Scott and Linda Howell
 I can't tell you how happy we were to see them.  My girls were exhausted, emotionally and physically 
and just needed an extra hug, which I couldn't really provide right then.  
Ash and Brooke had been the best little caretakers all week 
and then watching me go through such trauma was just about all they could endure.  
The Howell's come right when they did was another sweet tender mercy.  
They had no idea what had just happened so when they saw me, Linda almost started crying.  
The girls just fell into their arms and we all shed a few tears.  Mine were happy tears. 
To have such wonderful people in my life, showed up exactly when I needed them to was truly another tender mercy. 
Such a blessing that I will ever be grateful to them for comforting the little girls when they needed a little love.
  The next 4 hours flew by as we chatted and visited with Scott and Linda. 
They are the best friends and my girls adore them
 so it was such a fun treat and perfect way to end such a emotional and stressful day!
While we were hanging out with the Howell's, my brother, Eric, was receiving my stem cells, which contained my bone marrow. 
 They call that moment, a "new birthday" for my brother, because it is a new chance on life. 
 I thought it would be fun to celebrate and be with him when they give him the blood transfusion and take a few pictures.  
I really wanted to share that moment with him but then it was just a little chaotic that afternoon 
and at some point I just told Brooke to run the party stuff up to Eric's room and wish him well.
Once the drip was done, my nurse came in to remove my pick. 
I had to include this photo of what the pick looked like.  I'm sorry, I know it's gross.
I thought she would give me some anesthesia or something but she just clipped the stitches and pulled this tube out of my neck.  
It was the strangest thing to feel it coming out of your body.  As you can see, I was trying to be brave!
The tube that would draw the blood out of my body.  Thanks Brooke, for getting this shot of it and documenting everything for me.
Yay!  All done!  I had a large whole in my neck but just had to hold this gauze pad and apply pressure and I was good to go.
The next day I arrived at the hospital early to run through the last few tests 
to decide if I was healthy enough to get cleared to travel that day. 
I was thrilled that every test came back with good results and I was able to leave the hospital. 
 After stopping by Eric's room and visiting with him and his wife, MaryLynn, I walked out of the hospital for the last time.
They were in good spirits and very sweet and appreciative of my stem cell donation.
Now we just had to wait and see if his body was going to accept the donation.
This was the hard part to leave not knowing if the transplant was going to work or not.
Leaving my brother that day was hard and all I could do was hope and pray that it would be a success.  
We walked out of the hospital and had to take a picture. 
 I wanted to do a jumping one but after one futile attempt to jump,
 I neither had the energy nor balance, so Brooke and I decided this pose was good enough!
Brooke took this picture of one of the beautiful flowers outside the hospital.
  I love it because it represents the God's beauty and His love that we felt
 at the conclusion of what was one of the most incredible and difficult things that I've ever done in my life. 
 I know that He lives.  And that He loves me and my brother and everyone of us.  
But most of all, that He is aware of all that we are going through and will never leave us.  
He is always with us.  And I'm ever so grateful for this blessing in my life.
Now, one might ask, would you do it all over again? 
 Right at that moment, I probably would have hesitated but said "Yes."
As hard as it was, I can't even explain how incredible it feels to know that I helped save a life.
No words can describe that feeling and I am humbled and feel very honored
 to have had the opportunity to give someone a second chance on life.
Now that time has passed and I have completely healed,  I would answer, enthusiastically, "Yes!" 
My brother, Eric, celebrated the 100 day milestone last month.
His body has accepted my stem cells and my bone marrow has replaced his.
He has not shown any indication of graft versus host disease, 
which means he has had no rejection of the stem cell transplant.
He is tapering off the anti-rejection meds and if all goes well, within 9 months he will be done with them.
Tests show that 96% of his bone marrow is now being produced by my stem cells.
And another amazing part is that his blood type, A- will change to mine, O+! Isn't that crazy?!  
Modern medicine is just amazing and I am so grateful for it,
and so very grateful for the miracles in my life, but most of all, right now,
 I am grateful to have played a small role in this miracle in my brother's life.








2 comments :

Brad and Karen said...

What an incredible post, Debbie. No wonder it took time before you could put your thoughts and experiences to paper. You and Eric have had an amazing journey together, and your family and friends will always appreciate this documentation of the miracle of life!

Ashley said...

Wow, Mom!

This was so crazy to read and relive. Thank you for documenting everything!! I loved taking care of you that week, and I'd do it again in a heartbeat.

Love you!