Dreams

It's that time again... time for an update: 

Phyllis is doing well and in fact, just had a birthday! It just so happens that my fiancee and I got engaged on her birthday a couple years ago (before we even knew her! - Crazy, right?!)

She and I speak regularly, maybe 2-3 times per week. We both wish we lived closer but sometimes life and circumstances just get in the way. Hopefully we will be able to see each other sometime this year? Personally, I think Americans work too hard and don't get enough vacation days :p I'd be fine taking a month or two without pay so I could travel. Ahh, I'll keep dreaming. :)

Serenity

Update

I can't believe it's been just shy of a year since the last time I have posted!

Phyllis is doing wonderful and we talk regularly. I flew out to see her in June I think it was? Then I took a trip across country this past summer and made a stop along the way to see her. We live so far apart but we were lucky enough to have several opportunities to meet up. 

She has had some minor graft vs host type complications but from what I've been told, it's a fairly common thing. Yay for being healthy :)

Phyllis

Well, the one year mark from the donation came and went. I sent Lee my info out right away but considering the lag between NMDP and such, I assumed I wouldn't hear much for a while. To my surprise, within a couple days I received an email directly from my recipient! Her name is Phyllis and she lives almost completely on the other side of the country. We have been emailing back and forth since then and it has been such an awesome experience. I look forward to hearing from her and always smile when I see an email from her pop up in my inbox.

She's doing well and I've even gotten to speak with some of her family members too. She's an amazing woman and I so look forward to getting to meet her and her family and finally give her the hug I've been holding onto for her for over a year now. 

I cannot believe how much things have changed in over a year. I looked back at some of my older posts and was reminded to keep counting my blessings. 

Almost 1 Year Since the Donation!

Throughout this past year, my recipient and I have been able to correspond through letters that pass through NMDP to ensure anonymity. I have received letters from her husband, sister, mother, and son and I get so excited when I hear from her and her family. I just received a couple of letters last week that had been written back in September (there's about a month lag with sending it through NMDP and all).

But now, in exactly 10 days, it will have been 1 year since the donation and we will be allowed to release our contact information and correspond without going through NMDP. I've been counting down the days for a long time but since November started, I've been unable to contain my excitement!

Leukemia Free!

I received a card from my recipient midway through last month. She wrote me to let me know that at her 6 month check up she was still leukemia free! Amazing news! She wrote the letter in mid July so I've come to learn that it takes about a month for it get from her all the way to me.

At this point, it's been almost 10 months since the donation and I get more and more excited knowing that come November, we will no longer need NMDP to correspond.

Wonderful News!

A little over a week ago I received a letter from my recipient saying that she's doing really well. She was released from the transplant facility before day 100 and actually could have gone home sooner than she did but her family was sick so they didn't want to risk it. She also said she was looking forward to meeting me and being able to hug me and thank me in person.

As everyone can imagine, I was so excited to get this letter - it truly means the world to me and I'm eagerly counting down until the 1 year mark in November :)

Engrafted Stem Cells!

I received a phone call on Friday with some news about my recipient. The stem cells have engrafted so she's making my blood cells now! She is doing well and was discharged from the hospital which is great news!

Merry Christmas!

2 Weeks Post Donation

Well, it's been 2 weeks since the donation took place. The area where the line was is still healing... I have a massive bruise in the groin/thigh area and a tiny little scabbed area where they inserted it. I rested up for a couple days then got busy and was on my feet a lot and I noticed some new bruising and swelling so I had to try to stay off my feet and ice the area for a day or two. It's looking much better now though. It's pretty much the coolest looking bruise ever and I wish I could show it off just for fun, but it's probably not socially acceptable to say to someone "hey, wanna see my cool bruise?" then whip off my pants to show them ;)

Anyway, I haven't heard any word from or about the recipient. I guess I am a little disappointed to have not heard anything yet but hopefully I will soon!

Lee will probably give me a call within the next couple of weeks and maybe have an update for me about her and how she is doing. Until then, I hope everyone had a lovely Thanksgiving and aren't stressing out too much this Christmas season... keeping in mind the real meaning behind Christmas :)

One More Week!

The donation is exactly one week away from today!

It really hit me yesterday because Lee mentioned that he'd be mailing the injections which will start on Saturday and then he emailed me a hotel confirmation number for Tuesday evening. I live about an hour away from the hospital that the donation is taking place at so we'll stay over at a hotel near the hospital so we won't have to get up so early on the morning of.

I sent my recipient a letter in the mail Monday but it has to go through Lee first. He'll get the letter and make sure it doesn't contain any identifying information and then he'll pass it on to her, wherever she is.

I've been thinking about her a lot and thinking about what she's going through as she begins preparation for the transplant. All that I know is that she'll be receiving chemo and/or radiation to basically destroy her immune system so her body can accept my stem cells without rejecting them. The NMDP website has information on what the patient will experience in preparation of receiving the transplant which can be found here: http://marrow.org/Patient/Transplant_Process/The_Preparative_Regimen.aspx

I know I've previously talked about my mother working in an oncology office and spoke of the many patients, that turned into friends, that lost their battle with cancer. When I think about my recipient, I picture her being every single one of those people I once knew. I picture them all getting the second chance at life that they all deserved and the thought warms my heart. I hope I make them proud.

1 hour information session

Lee and I had the 1 hour information session over the phone this past Wednesday. I think we ended up talking for about an hour and 20 minutes. What took the longest was we went through all of the consent forms and he explained to me what each form meant. These were the forms that asked for my permission to be part of this and that study so Lee went thoroughly through them with me to make sure I was still okay with signing them.

He started off with asking me if I had any questions. I did have a couple so that took a little extra time. One concern of mine was how I'd go to the bathroom during the donation because I was told you had to lay pretty still the entire time so I was afraid I'd have to get catheterized. Luckily, that's not the case. What I learned is that we really only have to keep one arm fairly still. I believe the arm that is receiving the blood back after it has been sent through the machine can be moved around a bit. So I'll get a bed pan or commode lol... much better than being cathed though.

We started talking about the recipient; there isn't much information he's allowed to tell me. All that I know is she's a 45 year old female with acute myelogenous leukemia and she lives within the United States.

I'll be going for the physical on Friday, October 19th. The physical will probably take 2-3 hours because of all the different places I'll have to go. I'll get an EKG, a urinalysis, a chest xray, a health history will be taken and so on and so fourth. About a week after, Lee should be notified if I've been cleared to continue on with the donation.

Since the donation will take place on November 14th, my recipient will begin preparation on November 5th. She'll receive chemo and/or radiation and she will be admitted to the hospital the day before the donation. They are severely weakening her immune system and preparing her to receive my stem cells. Although I have the option to back out at any time, they do request that I try to make my decision before she begins preparation; if not, her immune system will be so weakened from the meds that she'll have major complications or won't be able to recover. For some people this might be an issue and I'm sure that would create more guilt than anyone could handle if they backed out when it was too late for their recipient, so if you're teetering with the idea of going through with this, make sure you're sure. For me, there was never any question.

5 days before the donation, I'll begin receiving an injection of a medication called filgrastim (Neupogen^®). This medication stimulates white blood cell production. They said I'd probably experience some bone pain and fatigue. They will arrange for a visiting nurse to come to me and do the injection each day. The last day will also be the donation day, so when I go in, I'll receive the last injection before they start the process. I was told to avoid any aspirin products for the bone pain because this will thin my blood while filgrastim may cause thrombocytopenia which is a decrease in platelets. When platelets are decreased, this causes a slower rate of blood clotting so you'd be more likely to have bleeding occur. Adding aspirin into this mix would not help the cause, thus it's important to use nonaspirin products.

On donation day, I'll likely have to show up around 7am. I'll be there for 4-6 hours and I'll produce a bag of stem cells and the bag will be hand-delivered to the patient at her location. She'll receive the stem cells the way a blood transfusion would occur. The first 100 days are the most critical for her recovery. Lee said that when I get my first update, hopefully it will be around 30 days after the transplant, I shouldn't be surprised if I find out she has some sort of infection which would be a result of the immunosuppressants. In an ideal world, what they would like to see is that in the first 3-5 weeks her biopsy results show that she's producing 100% of my blood cells. Although it's not usually 100%, they want to see a huge percentage of my blood cells that are being produced and a much lower number of her own.

Lee will begin checking in on me either on the day of the donation or the day after and track my recovery. He'll check in again around day 7 and until I'm back to feeling like myself again. Then around 1 month he will contact me and hopefully he'll have an update for me. After that I won't hear from him again for about 6 months, then 1 year. For the first year, I will only be allowed anonymous contact with my recipient and after 1 year, the NMDP steps aside and will allow us to disclose however much or little information we would like with one another. I know that I would be beyond thrilled to be able to meet my recipient and hear about her progress. I do hope that she'll feel the same way. I hope that the stem cells will take and she will be able to continue on with her life and live in good health and happiness.

I've spent a lot of time thinking about this 45 year old woman that I know nothing about. I wonder about how she's feeling, what she's going through, if she has kids and how old they are. Who is taking care of her? Siblings? Parents? Children? I wonder what she looks like, what hardships she's faced in her life and I wonder about her faith. In my experience, being around people that are at the end of their life or are battling a life threatening illness, they are often able to find God or find comfort in religion. When she receives the stem cells, will she realize what an amazing gift she's been given from God? This certainly isn't my doing. God created me and God created her, and He made us similar... similar enough that my cells are like hers and hers are like mine so she could receive this donation. There is nothing heroic or special about what I'm going to do; this is an act of love and an act of God. I just feel so blessed that God has chosen me and is using me to work in someone elses life and for this, I'm grateful. My goal in life is to live for Jesus and exalt Him in all that I do. God is giving me the opportunity to do that.