Positivity & Resolve

On Friday, I received an email letting me know my staph evaluation came back negative. I had no doubt since I've been healthy the entire time, but it's nice to have confirmation. I also received an email update from LGII's Aunt telling me that she is doing better than 99% of those who have received transplants in her home hospital. She is up, running around and playing as if she hasn't been sick. I have maintained my resolve and I have not read her family's blog, but it is wonderful to know that she is healing well; at least that she is having some positive, healthy, and fun filled time.

In writing today's words, I am reminded of the title of this blog: Our Numbered Days. How easy it is to forget that today is not a promise. Tomorrow is not a guarantee. I feel like I spend so much of my time wondering when, how, where, and not enough remembering to be thankful for here and now. I am struggling to re-find the resolve and the peace I had before the surgery. That peace that I had that told me I was ready to live, or die, at any moment. Now I feel that part of me is back to the struggles of "what if I don't", and "how come I haven't". Sometimes, this is a dark place to be; sad; exhausting.

But then, through friends, prayer and scripture, I am reminded that our days are numbered and that God has a plan. I am learning to embrace these moments of doubt and turn them into peace. Look at my life and list the little miracles that God continues to perform everyday. I have come miles from where I started even 6 months ago, and that renews my excitement and resolve for what is forthcoming.

I want to be encouraging to those who may read this and know what I am feeling. The desire for a mended friendship, for love, for a baby, for a wedding. The desire to feel so close to something that you could get lost for days. The desire to provide for someone you love so they know no want. The hope that your life is not in vain and that you will have left a mark when your days are through. Know this, not one of us was put on this Earth without a purpose. Your purpose is being revealed a little bit everyday. Be patient, love yourself and allow the time and space for God to work. Because when it is revealed, you will know happiness beyond compare. Know that you are right where you are supposed to be. I know I am, and so far, I wouldn't change a thing.

All Out In The Open

I just wanted to post an update to all the drama I recently posted. :-)

I did speak with my rep at Be The Match and explained to her the situation. I think I was most afraid of being in trouble for "breaking the rules" even though it was completely unintentional. I explained the situation, told her I broke contact with the family, and asked her whether I would be notified if I was in any health danger. She told me she needed to talk to a few people and get right back to me.

Be The Match cannot confirm or deny whether LGII is LG (obviously) but they have decided that to ease my concern for my health, they will schedule a staph evaluation for me. The medical team indicated that in all likelihood, if I have not become sick by now, I will not become sick, but they want to make sure I am at peace in light of the situation. I am awaiting this date/time.

I am doing so much better today that I was on Tuesday. I am the type of person that works through my feelings and concerns by talking to those around me and I was so blessed to have people to walk me through my grief, concern and anxiety and give me great advice. I have placed LG/LGII's health back in God's hands and I have faith that His will for her will be done.

It has been 1 week since my donation and I'm feeling about 90%. Still have some tenderness in my lower back and become winded when I exert too much energy, but other than that, I'm feeling well. The bruising on my hand is still the worst of the outward signs of surgery. I have no visual bruising on my back save the slight circles and scabs at the incision sites. They look like 2 bug bites. Much better than the doctors predicted. Totally worth the possibility of a cure and I would absolutely do it again!

Happy St. Patrick's Day!

Rules are NOT meant to be broken...

It has been 6 days since my donation and I am healing really well. I spent much of the weekend in bed or in the cradled position on the living room recliner. I had so many visitors and flowers and food made for me. I've always been the one to take care of others, but I have to admit, it was really awesome to feel so loved! I actually have pretty minimal bruising around the two incision sights, but there is still some swelling. I'm definitely still anemic as the massive bruising on my hands have not quite cleared up yet, but I'm still taking iron up to 3 times a day to help replenish. The bruising on my hands from the multiple needle punctures is actually the worst bruising (so far on my body). Every day I'm getting more strength back and am so thankful that there were no real complications for my health. Right now I'm fighting exhaustion and constant nausea, but I know that will lessen with each day as I get stronger. I have been back to work since Monday, albeit slightly reduced hours. :-)

That being said...I reached out to LG II's Aunt yesterday to see how she is doing. Well, she seems to be responding well so far. Her Aunt shared with me the family's blog of her journey and I was really excited to start reading about "the other side" of the donation process. I started at the beginning...LG II was diagnosed on Sept. 11, 2010 and started chemo the same night. She has been in the hospital almost everyday since, receiving treatments. The family wrote daily updates (like I did on my Mom's carepage) so I started to skim after a few days. AML is very aggressive and she was lucky to have caught it before it started spreading to her vital organs. AML has a 60% survival rate with a BMT (bone marrow transplant). Then I skipped ahead to January...the family posted on Monday, January 10th that a match had been found and they were to meet with the doctors for more details. I was notified on Friday, January 7th that I was a match. The meeting with the doctors was very promising. The match that was found for LG II was a perfect HLA match. Also, they look for a Natural Killer Cell (NK) match. There are 4 levels: None, Standard, Better and Best. The donor was a Better match and that was the highest match that LG II's hospital has every transplanted. The transplant date was set for March 3rd. My original donation date was March 2nd.

Goosebumps, right? At this point in reading the blog I started to bawl my eyes out...this is my LG! I mean...there is no confirmation, but all signs point to this being my LG. What a fantastic moment to read about the joy and excitement for this family. To see pictures of LG and to learn about her horrific journey and how it has altered this family and the community which support them.

So, of course, I skip to the most recent posts to learn about how the transplant is going. Here is where I received devastating news...it appears that the bone marrow contracted a staph infection which was not caught by the doctors until half-way through the transplant. The blood cultures taken tested positive for a rare form of staph. Reading this, I immediately felt horrified. I felt dirty, disgusting, infected and just beside myself. How could this happen? I had been through so many tests and passed with flying colors, or so I thought. It was the hardest thing to read as the family processed through this information and to read the anger, frustration, helplessness and fear that coursed through their words. They completed the transplant and had to hold their breath. The last post I read was for Monday. It appears that the staph strain is receptive to most antibiotics and that she had shown no signs of infection as of Monday night. Doctors were confident (as of Monday) that if she had not shown signs of infection (most notably a spiked fever), that she was likely going to be ok. LG II had been on antibiotics after a false positive test only 2 days before the transplant. The doctors think that the infection was contracted when the needle pierced the skin of the donor and entered the blood stream. Again, if I am the donor, totally makes sense with the multiple needle injections in multiple rooms during my donation.

I notified LG II's Aunt that I now understand why they have the 1 year rule. In 1 year, if LG II is doing great, I would never have had this information or concern. I told her that I would no longer be reading their blog as I do not want to hinder the documentation of their journey. I do NOT want them to curtail what they write on their blog because they are concerned at who might be reading it. This is their experience, just as this blog is mine. I struggled with whether to even post all this as I was having such pain and anxiety yesterday with the information, but after much consultation with those closest to me, I believe this information came to me for a reason and I want to share what could happen.

God has continued to speak to me through this experience. Hindsight is 20/20 and that has never been more true than today. God knew that there would be an infection and allowed that false positive to provide the antibiotics to be administered. I truly believe that this is yet another opportunity for me to learn faith, discipline, and self-control (in not reading LG II's blog), but most importantly to continue my journey in learning to accept life and not try to control everything.

I wanted to share this experience not because it is part of the journey and I want other donors to know the risks of knowing their donees. Everyone should be mindful of the rules. I will continue to put my faith in God and know that His hand is in every moment of this situation. As more time passes, I am more at peace with this process and know that without my donation, infected or clean, LG/LG II did not have much of a chance at survival; the cancer was killing her.

Before knowing this information I said that I would donate my bone marrow everyday over and over to help save someone (especially a baby) from this terrible disease. I feel even more strongly now. The 1 week of pain and recovery does not compare to the journey this family has been on and I would give of myself again to save her, in a heartbeat. Thank you for your love, support and continued prayers for both my recovery and that of LG/LG II.

Still & ALWAYS a Joyful Donor

Donation Delivered!

Well, it's all over. I'm home and resting fairly comfortably. :-)

The alarm went off at 5:00am yesterday morning. I slept well and was ready to head in. Kristen and I ventured out into the pouring rain with our overnight bags and some snacks and parked at Hahnemann Univ Hospital at 5:56am. I went straight into procedural admissions where I stripped into a gown, peed in a cup for yet another pregnancy test (negative, I can assure you!) and met with a cute doctor to go over everything. He said, "So, tell me what you think is going to happen." I laughed. Then the nurse came in to take 7 viles of blood to travel with the donation. That didn't go so well. I have very deep veins (see blog post about crappy veins) and I hadn't had anything to eat or drink in over 7 hours so after fishing in my elbow for a vein and not catching one, then sticking the vein in the top of my right hand, the blood wouldn't flow. We decided to wait for the anesthesiologist. So Kristen prayed with me and I crawled onto the bed and was wheeled down to pre-op.

In pre-op I was met by the second surgeon who would be harvesting, another nurse and the anesthesiologist. He tried Novocaine and still couldn't get the needle in the vein. So he tried another hole and then a third. At one point, I had 2 anesthesiologists, 2 doctors and 2 nurses trying to find a vein. Finally, they decided to complete the IV and blood draw after I was under. Thank God! After all that, they had me sign the anesthesia consent form. Ummm, yes please! Just before 8am they wheeled me into the OR. I was sitting there watching everything and staring at the lights and the next thing I know, I was being wheeled into the Recovery Room at 10am. They didn't expect me to wake so quickly, but they were great at getting me some pain meds right away and making me comfortable. I was in recovery for about an hour and a half waiting for my room to be ready.

Everyone at Hahnemann was really fabulous. They updated my sister on several occasions while she waited in the family waiting area. She met me on the 15th floor as they were wheeling me into my room. My hospital coordinator and a rep from Be The Match met me in my corner room as well. They sat with me for a while while I got set up and adjusted. Linda notified me that my marrow was already on its way to LG. They started me on percocet right away but funny enough it keeps me awake, so there was no sleep in sight for me. I had several visitors and had fun just chatting and resting. The hospital bed was comfortable and the food was ok.

In the late afternoon, they started to give me my 1 unit of blood. They did this through a "garden hose" that was the 16 gauge needle in my arm. It was at that moment that I felt the closest to LG. To know that in a matter of hours she would be receiving my blood through an IV just brought an overwhelming feeling of kinship and relief.

Well, I am home resting now and looking forward to feeling more back to normal everyday. I am pretty tired and I'm loving having company come to visit. I cannot express in words what a life changing experience this has been for me. God taught me about peace, patience and learning that not everything is within my control. It has been a wonderful lesson to learn and one I hope will make the rest of my days better. I'm sure I'll have some more deep and coherent thoughts later in the weekend.

I did want to update you on the 2 year old I do know about, LGII. I received an email from her Aunt via FB yesterday letting me know that they were praying for me. I responded tonight and just received a note back saying that her niece has halfway through her cells and everything was going well. What a fantastic moment to read that and to feel close to the process on the other side. The joy in the few lines she wrote brought peace to my soul. I would donate again in a heart beat to know that these little girls have a chance a long healthy life. There is nothing more worth it.

Thank you again from the bottom of my heart for your love, prayers and support. Be encouraged that you don't have to have a hospital stay to make a difference. Your encouragement has changed my life.

Happy Weekend!

Erin

All Packed...

...and ready to donate!

Well, this is it folks...the moment you've all been waiting for! Tomorrow, I will be spilling your deepest darkest secrets to all the nurses, doctors and walls of Hahnemann Hospital! LOL. I'm very excited that the day is here. It's a little surreal, as I feel like I've been working towards tomorrow for such a long time. My bag of sweats and comfy clothes is packed, mac and cheese (with soy) is made and in the fridge, and my pillow will be by my side as soon as I'm admitted. I am a little anxious, but nothing abnormal I think.

I would also like to note that with today being the start of Lent, I have decided that this year, I will be giving up bone marrow. It will be a little painful, but I hear the hospital food is worth it!

Thank you for all your love and prayers throughout this process. The support has been overwhelming and I'm so thankful to have so many wonderful friends and family to support me through this journey. Please continue to pray for a quick, painless, and easy donation. Most importantly, please pray for LG and her family. Tomorrow is going to be an even bigger day for them. They will be anxious, and excited and nervous as they wait for the delivery and I just pray for comfort and peace to find them in this time. I will continue to pray for God's will to be done and hope that it will be to completely heal this little girl. I also want to pray for the second little girl receiving a transplant on Friday and send the same love and sentiments to them.

I plan to update as soon as I'm coherent. Again, thank you for your support and love!

Love, Erin

Anxiety?

It is Tuesday, only 36 hours before I need to report to Hahnemann Hospital for check-in and I've been unusually quiet, short and a little cranky. Oh, and I've bitten all my fingernails. Grr!
Everyone kept telling me that I would get nervous and anxious as donation day approached. I said, it's not that big of a deal. Well, they were right, and I was optimistic. (notice I didn't say wrong!) I've been fighting a pinched nerve in my back and neck. Last night's yoga practice felt awesome, but actually moved the knot up into my jaw and ear. NOT FUN...especially when I can't take any pain meds which will thin the blood. Anyway, I've decided to take tomorrow off of work so I have a little break and can prepare for the donation. I'm also hoping to have some quality time with the little sister before the pain meds take over.

I am still humbled and honored by this opportunity. I am overwhelmed with joy when I imagine the opportunity God is giving LG through this experience and so thankful for what I have learned as well. I plan to blog more in-depth tomorrow so stay tuned! Now I'm off to eat at my favorite restaurant in Philly, Dinardo's Famous Crabs and then stop by Rita's Water Ice for my sister. It's like a last supper! :-)

Still...a (slightly anxious) joyful donor!

One Week From Now...

...I'll be filled with holes!

This morning is 1 week from donation. I will likely be sleeping soundly on my belly with two needles hanging out in my lower back. I wonder if they can suck a little extra out of the thigh area while in there... :-)
I can't believe it's already here! It has been 6 months since I received the first email letting me know that I was a possible match. My how time flies. I am still excited about this opportunity even though everyone keeps asking if I'm nervous or scared. I'm definitely not scared and really I'm only nervous about all the needles. I'm not a fan, but I know they're necessary.

Everything is going to go swimmingly...but please be praying for both my continued health and LG's health, especially as she is undergoing chemo right now to deplete her immune system. Please be praying for safe travel for my sister as she makes her way from Boston to Philly to keep me company. And please pray that ultimately, this donation will be the life saving gift that LG needs. I know that there are lots of donations going on all around the world on a daily basis and this gives me courage and peace for my safety and the success of the procedure.

I also wanted to update on one thing I have blogged about and that I challenged you all to do, and that is to pray in the moment. I have been practicing this over the last month or so and I can't begin to describe the peace that I feel on a more regular basis. Peace for myself and peace for others. I know everything is in God's hands and his plan is overarching. I feel closer each day to the plans he has for me and am really thankful for where I am in my life. I have fabulous friends and family and continue to be blessed by new people on a weekly basis. So I encourage you to pray in the moment and don't be afraid to ask God to reveal his plans. He will....be patient.

Erin