Magic

Science and medicine must have a little bit of magic. To make people feel better and to find ways to make them whole. I spent several nights and many hours at CHOP (Children's Hospital of Pennsylvania) last week with some friends of mine. Their little girl had brain surgery. She was born with a condition where her skull doesn't grow properly and only grows front to back, not side to side. In most cases, this condition does not cause a medical problem, but there is a 15% chance that an emergency could arise and she would have to have surgery. So instead of taking the risk, my friends decided to have the surgery now. It happens in 2 stages. The first, last week, consisted of removing the back portion of her skull and reshaping it before replacing it. In November, she will have the front half of her skull removed, reshaped and replaced. The doctors at CHOP are the best in the world and Zoey had no complications with her first surgery. That, is a little bit of magic.

I visited several times to keep my friends company and to watch and pray over Zoey. She turned 2 just a few weeks ago. And it didn't hit me until I was there the first night, seeing her head in bandages, arms in "braces" to keep her from pulling at the IVs, seeing a drain tube sewn into her skull, that this must be unimaginable for a parent. When I looked at 2 year old little Zoey, I saw LG. I felt the fear, helplessness, hope and love that her parents must have felt for months on end waiting for their little girl to get better. I felt closer to LG's parents than ever and I was again reminded of the "magic of medicine" that gives children like Zoey and LG a second chance at a normal, exciting, lease on life.

I am doing ok these days. Spending time at the hospital was actually very therapeutic. It's not a scary place to me anymore, especially after my own stay. It is a place that I feel at home, and I feel love all around. My friend Jodi suggested I be a "cuddler" in the nursery, and while I laughed, I actually think I might love volunteering in some capacity at a children's hospital. I looked into this briefly right after my donation, but I think after my work travel season is over, I may look into it much more seriously...especially if I move into the city where I'll be closer to the hospital.

Lately I've been questioning my purpose in life. Friend, daughter, sister...but wife? mother? When you can't see things right in front of you, usually it is easiest to doubt their existence or their potential to exist. I think it's because God still wants me to learn some things. What those things are change daily...maybe that's the point. Since my Mom's relapse, I continue to find myself unsettled. Reluctant to make long term plans or commit...even though she is doing great and seems to have quite a healthy road ahead of her. I think it's driven by fear. If I settle and become complacent, everything will get turned on it's head? Is sacrificing worth the wait? Probably not....it's the journey, not the destination. Maybe I need to get that as my next tattoo. hahaha. Maybe now I'll spend some time looking for a little magic in my everyday life.

Summer Lovin'

Happy August-is-Tomorrow!

It's been a little over a month and there is so much to update. Summer is hot! I do not like it. But I do like spending two weeks in the Caribbean. But why, when you're closer to the equator, is it actually cooler? Riddle me this. Hmmmm. I had a fantastic vacation away from work and life and spent so much sweet time with my family. 2 weeks is really the perfect amount of time to vacation. You have time to relax and explore and enjoy and feel ready to get back to life. We swam with dolphins and fish and stingrays and sharks. We pet turtles and rode jet skis and ate lots of incredible food. Oh, and there were games thrown in every night. I read 2.5 books and earned an incredible spf 50 tan. And I just really appreciated every moment I had. Vacation is necessary!

So, on Monday, July 18, we received some bad news. My Mom's cancer is back. Luckily, it is only stage 1, but it was the news that we've been dreading for 4 years. But really, there is much good news. She's responding incredibly well and quickly to treatment, she is maintaining her work/life schedule and now we are looking for a bone marrow donor. We always knew that this was on the horizon, we just hoped it wouldn't happen so soon. The great thing is that we've been through this process on the other side and hope that there is good karma out there, for a willing and eligible donor. This is going to change the face of this blog a bit. I still want to keep journaling because it's great therapy for me, and I hope it will help others going through similar situations.

In LG news, She is really doing fantastic! She is off many of her meds and is energetic and living life like any 3 year old should. I received a thank you card from the family. It was incredible to see their hand writing and read their words. The most touching thing they wrote was that they celebrated me on Mother's Day because I gave life to their little girl. I hope someday I can tell them how much that meant to me and how privileged I feel to have been given the opportunity to give them hope. The experience changed and strengthened me and I truly believe it will be a saving grace through this next chapter of my life with my Mom's cancer. There is a peace and an understanding that has come with the opportunity to donate that I know I wouldn't have had without it.

Our days are numbered, and only God knows how many, so take life by the horns and start living! You only get one life. NO regrets!

Happy August!

100+ Days

Happy June!

I received some fantastic news from LGII's Aunt yesterday...she is 100+ days post transplant and is doing "MARVELOUS". She has been off steroids for a few weeks now and they continue to lower her immune suppressing meds every couple of weeks. She has really rebounded incredibly. She did say that LGII lost all her blond baby hair and she is now a brunette! It's taking some getting used to for the family. LOL. I guess that DNA is pretty strong stuff. I did warn her to watch out for an insatiable desire to travel and for some sass. That must definitely be in the DNA...where else would I have gotten it from?! :-)

In other news, life is pretty good right now. I am absolutely blissful with my life in Philly. I've been getting out a few nights a week trying new restaurants and spending quality time with friends. I have had a lot of adventures including my cousins graduation in Santa Barbara a few weeks ago and visiting with work friends in DC. I even went to the (free) National Zoo in DC and they have 7 lion cubs! That was amazing to see. I am just at such a great place in my life and much of my positive attitude stems from this opportunity to share my life and my bone marrow. I am thankful for the opportunity to be blessed by this experience and for all that God has taught and continues to teach me.

On another note...I thought I would share some books I've been reading lately. For my book club, I read a book called Cutting For Stone. It was very long, but really good. It's about African doctors and even has some transplant stories in it. I really enjoyed reading about medicine in Africa in the 60's and 70's and even the growth of live donor transplants here in the US. It was fictional, but incorporated history as well. I also read The Hunger Games trilogy, which is graphic, but beautiful. It was a super quick read and I encourage anyone who likes action to pick it up. I'm currently reading Randy Pausch's The Last Lecture. It is a book that I have wanted to read for a while, and am loving his advice and candor on the topic of living and dying. So many of us have been personally touched by cancer and I have really appreciated his outlook on life to remind me what is important in our short time here on Earth.

I plan to update again soon...Enjoy the first days of Summer!
Erin

Birthday Time!

Happy May! Sorry I haven't blogged in a while...I've been out enjoying the beautiful weather and in the pool working off my post-surgery weight!

No recent updates on LG, but I am resting easy knowing that she headed home 1 month after the transplant cancer free! This means she's been home (I hope) for just over a month! I am so thankful that God allowed the opportunity for both of us. It was a healing process for us both.

So my 30th birthday is coming up in 1 week and I am so excited! My Mom on the other hand can't believe that she has a 30 year old daughter. She claimed that I was going to surpass her in age very shortly...but she's got the big 5-0 coming up next month and don't think for a moment I will let her forget it! She claims to be excited for every birthday she gets...but I know she is secretly a little spooked by the 1/2 century mark. I am sorry that I live 3,000 miles away and will not be able to pull off a super secret surprise party, but I did that for her 30th birthday, so it's someone elses turn this time!

I find that I have moments of questioning and worry about the future. Especially when it comes to wanting to make a difference and leave my mark on the world. I sometimes wonder what I've done to make the most of my time on Earth. So....I am keeping a list of things I am accomplishing in my 30th year. I think it's important to remind myself that although I still have some outstanding adventures (i.e. marriage and kids), there are quite a lot of adventures I have completed (and have planned). So far this year I have completed:
1. A 5k
2. A 10k
3. A successful bone marrow donation
4. Skiing some awesome slopes in Tahoe
5. And was a Maid of Honor for my best friend!

On the To Do List are:
1. Skydiving and
2. My 2 week vacation to the Caribbean. I've never been and I'm so excited to swim with sting rays and maybe dolphins too!

I'm also throwing myself a big Hollywood themed birthday party to celebrate with my friends! And I have friends coming from both coasts!

If there is one thing I've learned this year, it's that time is precious and I love celebrating time and those I care about. I can't wait to enjoy a 5-day weekend with so many I hold dear and celebrate life and the journey that has brought me to today. Enjoy your moments! Celebrate Life! Celebrate You!

Going Home!

LG II is being discharged from the hospital..."cancer free...healthy...and ready to have fun being a kid again!"

That was the email update I received today from her Aunt. Amazing what prayers and science can do! I am elated to hear that and so excited for both her and the family! She has been in the hospital almost every day since September 11th, that's over 200 days. And now, she get to go home, to her own bed and learn what it means to be a kid! And to think, she received her transplant 1 month ago today.

Such exciting and joyful news for a Friday! Please keep her in your prayers, but rejoice in this blessing!

One Month Has Passed...

And my stem cells have engrafted (taken) in LG's system!

I received an email this morning from my liaison at Be The Match telling me that LG is recovering well and will hopefully be discharged from the hospital soon. This is such fantastic news! Receiving this information earlier than expected has really placed a spring in my step today and I couldn't wait to share the news with all of you who have been on this journey with me.

I hope that my words describe what a life changing and positive experience this opportunity has been for me. I have never felt more alive, supported, encouraged, and strong in my faith than I do today. I firmly believe that we all have the power to change lives and I'm thankful for the opportunity to share this experience with you and encourage you to do the same.

It is a happy happy Thursday!

The Race of Life

Moral of the story...train for a 10k!

Last weekend I participated in a local 10k trail run. There were a couple reasons for this adventure: 1. It was my New Year's Resolution to complete a 10k by my 30th birthday. 2. I was hoping this run would inspire me to get back to working out/running more consistently.

Well...what I learned is that you should definitely train before a major exercise event. I also learned that there is nothing wrong with finishing last, as long as you finish. And I did. I ran the event by myself and talked myself through it. After the first mile, I was thinking, "Erin, what were you thinking? You are a crazy person!" Then I would think, "You are a healthy 29 year old woman who can do this. There is no reason you can't." I didn't stop once. I didn't sit down. I just kept walking and jogging. I kept thinking about all those who may not have the chance to accomplish this feat. I pushed myself to finish for those I hope will get the chance someday. I finished in 1 hour 46 minutes, but there is nothing wrong with finishing last.

I know I would have done better if I had more time to exercise. I know I would have done better if it was a flat course. I know I would have done better if...if...if. This is what was going through my mind after the race. But then I looked at my free arm warmers and the number 414 on my chest and I smiled to myself in my rear view mirror. You have to start somewhere. It only gets better from here.

I did have a moment during the run when I almost broke down. As I passed mile 4, the most I've ever done in a workout, I took a picture and I called my Mom. Now, it was only 7am California time, so I didn't expect her to answer, but I left her a panting voicemail notifying her of the accomplishment thus far and encouraging her to slap me from clear across the country if I ever express interest in running a 10k again. When I hung up the phone, it hit me. I always call my Mom first. She is always the first person I want to share things that happen in my life, either good or bad. What happens if a day comes when she isn't there? What if the cancer comes back? This reminded me to cherish the moments I do have to share with her and to continue to support the cancer cure efforts in every way I can.

My encouragement for you: Pick a thing on your bucket list and work towards accomplishing it. Whether you finish first or last, you will have accomplished it, and from personal experience I can guarantee that it is worth it. No one, and nothing (especially cancer) can take that away!

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

A Surprising Email!

Happy Monday! I hope you are all looking forward to a beautiful week! I just wanted to share something that happened to me today that really touched my heart.

On the Be The Match Facebook page, they posted a request for stories of donors and why they placed their name on the registry. I responded in a comment:
My Mom was diagnosed with Lymphoma and the family got tested. I wasn't a match, but I wanted to give back to another family who may be in same situation, so I joined. I'll be donating my bone marrow on March 10 for a 2 year old little girl with leukemia. I am very excited!

Today, I received an email message via FB from a woman who saw my comment and wanted to thank me for my gift. Turns out that she has a 2 year old niece who will be receiving a transplant on March 11th. GOOSEBUMPS! Obviously there is no way to find out if it is LG, but what a moment of excitement to learn that there is another life being touched by a member of the registry. It would be amazing if this was LG, but if not, I'm so excited that next week, 2 little girls will be getting a new chance at life. I just think about all the feelings and excitement I have for LG, and now they are doubled because there is an LG II who is experiencing this little earthly miracle. I hope this inspires you to live your day to the fullest! Happy happy Monday!

1 Pint Stored!

Today was my final hospital visit before the big donation day! I went over to Hahnemann Hospital to have my third and final infectious disease testing (still healthy!) and to give my unit of blood to have on hand for my surgery. The staff in the aphoresis center is really top notch and Lisa took great care of me. I even have them on the lookout for handsome single doctors to send to my hospital room after my surgery. :-)

The blood draw went well. I don't like needles so I didn't watch, but the donation only took about 25 minutes. I was informed I have "crappy veins" and that I don't have a career in blood donation. Well, thank goodness! I like my blood. (hehe) It just takes patience to find my deep veins. Lisa got it on the first try and kept me company the whole time. I did bring my kindle, but only read a few pages because we were so chatty. It was a great time. So 2 weeks from now, I'll be having dinner with my sister and getting ready to donate. I'm really excited, but can't believe it's almost here.

About a week and half ago I went skiing with my family I nannied for a while in law school. When I started, the twins were 3 months old, and last weekend, at the age of 6, they were racing downhill slalom courses in 42 and 55 seconds. It was amazing to see these little people that I've loved and help to raise, accomplish such amazing feats. They tried to get me to go on the double black diamonds with them; I stayed on the greens. I had many moments where I caught myself being so thankful for the time I have with them and praying for LG's family. I hope they get the chance to experience a ski trip with LG when she gets a little older. I pray that they will have lots of time to celebrate her health and enjoy adventures up and down mountains for many years to come.

LG will be starting her preparatory chemotherapy in the next few days. It's usually about 10 days or so out from the transplant. Please be praying for her little body and for her family as they help her through this time. She has been in remission for a while and I know that going back into the hospital and even semi-isolation will not be fun. But she is on her way to a better, healthier life. Will update soon!

2.2 Weeks!

Sorry it's been a while since I've updated. There hasn't been much going on with the transplant process since I received my clearance. I do have to give a pint of blood to have on hand during the surgery and this will likely happen sometime this week. Other than that...it's just getting my sister's train ticket booked and stocking up on the snacks!

We had about 4.5 inches of snow today and I am again reminded of the beauty of nature and the joy that Spring will bring. After a 70 degree day last Friday, everyone around here has Spring Fever.

I have been asked by several people who have read the blog or heard about my donation how to go about donating. Well, it's fairly easy. And its FREE right now if you sign up by the end of February. For the month of February, in honor of Black History Month, Nordstrom has offered to cover the $100 donation processing cost up to $75,000. If you are interested in being placed on the National Bone Marrow Registry, please visit: http://www.marrow.org/JOIN/Join_Now_Sponsored/nordstrom2011/join_now.html and sign up for FREE before the end of the month. It is a quick and painless cheek swab that takes about 2 minutes to complete. All you have to do is request the kit, swab your cheek, mail it in and keep them updated with your current contact information. Before you know it, you may help save a life!

I hope you're having a blessed Tuesday!

Medically Cleared!

I received an email today that said, "You have been cleared to donate Marrow by the NMDP Medical Services Department." Words could not do justice to the instant relief, excitement and awe that I felt only moments ago when reading this email. Tears did flow. Although I was not too worried about this, it is still wonderful to know that the journey is going to continue and that I can now officially, donate to LG.

I wish I could be there when the doctor tells her parents that a healthy (and very willing) donor has been found and that in 3 weeks and 6 days, she will receive a blood bag with healthy cells to regenerate her tiny body. I presume they will feel what I felt, but x100! Tears of joy and relief.

Thank you for your love and support through my journey. Many have reached out to say such wonderful things and I so appreciate them. But for me, this process is about humanity and gifts that we all have the capability to give. Each of you reading this have at least one person that you would lay down your life for. It would be a moment that you would not even think twice about. Well, I have, and continue to live such an abundantly blessed life. I enjoy every opportunity to live, to laugh, and to love. I choose to find the good in those that I meet, befriend and love. I want to give back whether it's to a friend or stranger. I hope you are encouraged to do the same. Life is so short. Live it up! Love a lot! Laugh 'til the end!

Now lets just hope I don't break anything skiing this weekend! :-) Update soon!

Managing Expectations

A Noun, Not A Verb.

I am a reader. I read constantly and find few books that I actually hold on to. About 2 years ago, when I was dealing with a lot in my life, I stumbled across a book called The Shack, by Wm. Paul Young. It is a story of a man who's child was abducted and he could not reconcile his faith with forgiveness. What I liked most about the book was it's approach to God, religion, and forgiveness. It was outside the box and explored a relational experience with God as opposed to a rigid book of rules. The story is one of realization and healing through a frank and honest conversation with God in three forms. In chapter 14, Young explores the notions of responsibility and expectations. Here are some excerpts I'd like to share.

God makes words nouns, e.g. respond and expectancy
Humanity turns them into verbs: responsibility and expectations

(Written as if said from God):
My words are alive and dynamic - full of life and possibility; yours are dead, full of law and fear and judgment. That is why you won't find the word responsibility in the Scriptures. ... Let us use the example of friendship. If you and I are friends, there is an expectancy that exists within our relationship. ... an expectancy of being together, of laughing and talking. That expectancy has no concrete definition; it is alive and dynamic and everything that emerges from our being together is a unique gift shared by no one else.
But what happens if I change that 'expectancy' to an 'expectation'? Suddenly law has entered into our relations. You are expected to perform in a way that meets my expectations. ... It is no longer about you and me, but about what friends are supposed to do, or the responsibilities of a good friend. ...The idea behind expectations requires that someone does not know the future of the outcome and is trying to control behavior to get the desired result.

Sooner or later, that friend will fail your expectations. What emotions does this evoke?

I knowingly and unknowingly place expectations on everyone in my life at some time or another. When I call someone, I expect them to answer. When I speak to someone, I expect them to listen. When I care about someone, I expect them to receive it. But what happens when I leave those expectations at the door and hope that someone answers and listens. I receive joy. I am thankful in that moment that a connection is made and appreciate it. Without expectations, I will always find joy and I will not be disappointed in myself or others because I am thankful for whatever occurs in the now.

As I get closer to the date of donation and I allow relationships to come and go as they are, I feel a sense of peace about residing in the moment. I cannot control the actions of others, and by trying to with expectations, I am hurt in the process. I am encouraged to release the expectation of curing LG, and instead live in the moment and appreciate the opportunity I have been provided; to offer hope and the potential of healing. I will find joy in the pure opportunity to offer something and allow both God and medicine to work through that gift.

I encourage you to move through your day monitoring your expectations. When you find them (and you will), I encourage you to take the judgment and control from the situation and be present to experience what that moment has planned for you. Just be. Soak it up. Honor yourself and you will find a peace you may not have experienced in a long time.

Poked, Prodded & Drained

All for LG!

Today was the long awaited thorough physical to make sure I'm in tip top shape for the donation. First, I should say that Hahnemann was awesome! Linda was my "guide" and walked me through everything, answered all my questions, and made sure I didn't wait for more than a couple minutes for anything! The team there was really nice and so appreciative of the fact that I want to donate. It really made me feel special.

So I started with paperwork...shocker! :-) Then on to the blood draw. They took about 4 viles of blood to re-check for infectious diseases as well as all my blood levels. They also check for any viruses, etc that I may have that could be passed onto LG and determine whether there is anything I will need to take ahead of time to reduce the risk of transmission. I'm sure this is for things like mono, etc. They will notify me if anything is abnormal in my blood counts or cholesterol or anything...so that is great! Now I'm just praying that everything is normal so I can go ahead with the donation. Then I had a full physical check with a doctor and 4th year med student. That was fun! Then, the final doctor came in to do another check over everything and to walk me through the surgery.

Surgery...yikes! Well, there were no surprises about the process, but he was wonderful to give me the full run down, options on procedures, and potential side effects. They have done LOTS of extractions there, so he was pretty honest and open about the process. Here are some of my options:
1. General anesthesia (recommended) or epidural. Not really looking forward to having a tube down my throat under general, but I don't want to be awake either!
2. Staying overnight. Most people stay. This actually surprised me. I mean, get me out of the hospital, right?!? I'll have the option to leave, but they like when you stay so they can monitor you. They can also change the dressing that way before you go home. Plus, they said my caretaker can stay over night with me. So I'll consider it...

So....the date is set: March 10th. Mark your calendars for lots of prayers and good thoughts! My awesome sister Kristen is planning to come down from Boston to wait on me hand and foot. I have already ordered a bell off etsy.com with her name on it for me to ring all weekend. (j/k). I'm excited that she will get to stay with me and take care of me. We're going to have a blast! Plus, they will give me percocet so she may get some funny information out of me while I'm recovering. Send all embarrassing questions to her attention at erin.vandorn@gmail.com so that I may approve them first! LOL!

As the date gets closer, I am excited. There are lots of things going on for me in the meantime, but I can't wait until this process is over and LG is on her way to hopefully being cured. Thank you for your continued prayers and encouragement. It really means the world!

I was reminded in yoga on Monday night that we often live life day-to-day without noticing the good things. It is when the bad things happen that life sort of stops and we take stock of what wonderful blessings we have in our life. Take a moment to do that today. Articulate the good things and the blessings now so that in the hard times you have something to lean on.

The Little Moments

I love snow! I mean, really, always love it!

This morning I woke up to 2 inches on my car and loved cleaning it off just a little faster than it was falling. My favorite part of the snow is when it sticks and builds on tree branches and covers everything in white. The picture I see when I look at the tree branches piled with snow is peace, silence and perfection. I find that the snow mutes the craziness that is life and causes everything to slow. The crisp image of the snow covered branch causes me to stop and appreciate the perfection of the moment. To take in a beautiful landscape.

My favorite part of this morning was my drive to work. While taking in the awesome site, an oldie but goodie came on: Whitney Houston's I Want To Dance With Somebody. I used to blast her tape, yes as in '80s cassette tape, every Saturday morning while I scrubbed the bathroom (my weekly chore). Of course I still know all the words! So what did I do? I blasted the music and sang at the top of my lungs in my car (in second gear with the overdrive off) and continued my 25 mph drive to work in the snow. It was an awesome moment. I just drank in the beauty of the environment and relived a childhood moment with passion and intensity.

I just wanted to share this morning to help bring a smile to your face and to inspire you to find a moment of joy where you can. I challenge you to find one today. I pray that LG will find one too.

Happy "Thundersnow" Wednesday!

Flexibility Breeds Patience

I've always said that patience is NOT one of my virtues...but it is something I have been working on. Thank godness, because life often requires patience and flexibility.

Hahneman Hospital here in Philly is the site of my donation. They called last week to schedule my physical. Feb. 2nd. It is a 3 hour procedure of EKGs, Scans, yada yada. Sounds like fun. I'm also going to give a pint of blood to have given back to me during my surgery. It is not required because my donation will be small, but a.) It will be nice to have a back up just in case, and b.) I hear it will help speed up the healing process. So that'd definitely a plus!

I was also notified by my Specialist Carolyn, that the date of the donation will likely be pushed back to the next week. Either March 6th or 8th. This week actually works great because it is Spring Break so there are no students, classes or visiting sessions scheduled at work, so I won't be worried about not being there while recuperating. Plus, I can read files from home...if I feel up to it.

So not too much news, just lots of waiting. Thank you for your prayers for health and for patience. I'm keep up with them too. :-)

Intentional Prayer

What are you waiting for?
I am really enjoying my church here in Philly. It's called Epic. The sermon series we're on right now is titled: An Epic Life. This week was about prayer. Do you do it? How often? What do you pray for? So...I felt a little convicted. Ok, a lot convicted. I don't pray nearly as often as I could. Notice I didn't say should, because there is no magic number of how many times or how long or about what you should pray. But I found myself most convicted in the area of asking for prayer where I fail to pray myself. Or of saying, "I'll be praying for you" and then forgetting to pray.

I am usually too busy to pray or I forget or I feel like I'm not in a place to lay it all out for God right then. Ha! That presumes that he knows nothing about my life when he knows the number of hairs on my head. Ok, so maybe I'm just too busy to stop my life and say thank you or ask for forgiveness. Reading that sentence back to myself makes me really sad. I should never be too busy for God, especially when he is never too busy for me. Jesus says in John 14:14 "You may ask me for anything in my name, and I will do it." Anything. Today I learned that this could mean, something as small as a daily meal, to something as big as healing Little Girl. But the key is, I have to ask. I have to take the time whether it's 10 seconds or 10 minutes.

1 John 1:9 tells us to "confess our sins, he is faithful and just and will forgive us our sins and purify us from all unrighteousness." On the spot; just like that. If God can forgive in a moment, we can ask in a moment. If you don't know how, just talk. Talk to God like you're talking to your bestfriend. Practice prayer. Practice daily, multiple times a day. When the phone rings, "God, please let this conversation be a positive experience for us both. Amen." Before you go into a meeting, "God, I pray for your will to be done and for us to find a positive solution. Amen." When I give blood, "God, please let the tests go well and for my continued health and match to LG. Amen." It doesn't have to be hard, but it does take intention.

Today I am challenging myself to pray in the moment. When I promise someone that I will "be praying for them," I'm going to do it right then. When I ask for prayers on this blog, I'm going to stop where I'm typing and say a prayer. I encourage you to do the same. If you have anything that I can be praying about for you, please do not hesitate to share that with me. I will pray for you.

Martin Luther said, "None can believe how powerful prayer is, and what it is able to effect, but those who have learned it by experience." I am praying that my marrow will cure Little Girl. Will you pray for it too? Will you pray for your own experience?

"So you want to change the world, what are you waiting for? It only takes one voice, go on, shout it out." -Natalie Grant

Informational Interview

You sort of sound like you know what you're talking about...
These were the words from Carolyn, my Donor Resources Specialist during my Informational Phone Interview this morning. Me? Why would you say that? :-) I explained to her our family's story and the fact that we've been through the donation process before with my Mom. But I still had questions about the marrow donation aspect since my Mom had done the stem cell process. Carolyn was wonderful. She walked me through the process and made sure I didn't have any questions. So here are some updates:

1. I may not need a blood transfusion during the donation because the amount of marrow needed is small. I will likely still donate at least 1 unit of blood just in case.

2. Little Girl ("LG") is currently in remission! This is wonderful news! Both for her, but also for the transplant process. Collection date is still set for March 2nd and she needs to be in remission to go ahead with the transplant, so please keep her continued remission in your prayers.

3. Whoever stays with me at the hospital gets to eat for free that day! I get a reimbursement for myself and my caretaker for mileage, parking and food. I will start a waiting list... :-)

4. As previously thought, I will not be able to contact or be contacted by the donor family until at least a year following the transplant. This is completely understandable, but I am bummed as I would love to provide comfort and be a part of their process. I will likely get updates over the year with her prognosis (whether good or bad) and that should help.

Today, my mood is excited. I'm thankful to hear that "LG" is in remission and that I have no infectious diseases. I am excited that there are over 10 million people worldwide in the Be The Match Database and that matches are made everyday. I am excited that I am healthy and have the ability to give to this little girl and to inspire you to make a difference too.

So Much Information

So much to read, so much to sign.
Today I received a 3 pound FedEx box from the Registry with a DVD, 2 packets of information and about 6 consent forms. I read through everything, like a good lawyer should...and wouldn't you know that they all said the same thing over and over. I guess I won't have a reason to say, "I didn't know".

For example, did you know that under general anesthesia they may have to put a tube down your throat? I didn't! Did I know that there would be at least 2 injection sites into my lower back where they would stick a huge hollow needle with a syringe attached to each to collect the marrow? Nope! Did I know I was probably going to need a blood transfusion during the collection? Ummm, no. But at least I've had the experience donating blood before and they will collect my blood prior to the surgery so they can feed it back to me. Don't be alarmed if I suddenly grow fangs and try to exercise mind control. Just tapping into my inner Bella. (*Twilight reference for those of you living under a rock) :-)

The human body is an amazing, complex organism that regenerates what is lost rather quickly. For example, they could take up to a quart of my bone marrow and my body will replenish it within a couple of weeks. And, there will be little to no side effects. Well, except for the redness, tenderness, low grade fever, and chance of vomiting. What are friends for? I didn't ask them to hold my hair in college...maybe I'll ask now. LOL.

Today I also learned that "Little Girl" has the more rare form of Acute Lymphoma. Of course she does, because I like a challenge! The Acute "M" Lymphoma affects only about 38% of all pediatric acute lymphoma patients. While figures for this childhood leukemia remission and cure are not readily available, about 90% of overall childhood leukemia patients find themselves in remission. If she can make it to the 5 year mark, she will be considered cured. The older patients get, the less successful the remission, so I guess we're lucky she is so young.

I also learned that I will not be able to know anything further about her for at least a year. I may get updates on her condition, but this is not guaranteed. I plan to express my desire to be available for contact, but the Registry has strict guidelines and of course, consent forms for these situations. Damn lawyers! I hope, someday, I'll get to meet her and her family.

Well, tomorrow is my "Informational Interview" over the phone. Carolyn and I get to go over all the documents I have read, in detail, and then I get to sign everything and send it to her. I don't anticipate any surprises...but I'll keep you updated.

Today I am a little more nervous only because I've seen descriptions of the actual donation process. I've never been admitted to the hospital before so the prospect of a throat tube and pee bag are not so appealing. But, I am reminded that it is worth it. Life is definitely worth it. More soon!

My Journey Begins

Nearly every life is touched by cancer.
It is no longer rare, it is all around us. In the blood, the breast, the brain, the bones; everywhere. And it often sneaks up on you. I have 2 Aunts who have beat breast cancer and a mother who is defying the odds against Blastic Mantle Cell Lymphoma. If you have watched a family member or close friend fight this disease, you know the feeling of hopelessness and rage; fatigue and sadness; fear and despair. But you also know the hope of positive test results, the joy that brings relief, and the optimism that medicine provides.

January 2007 was a life changing month for me. I accepted a new job, moved to "the" big city, and within a week learned that my Mom had been diagnosed with cancer. Not just any cancer, but one of the most rare and aggressive cancers that ironically enough, typically strikes men in their 60s. My Mom was 46 1/2 and within a month of celebrating her engagement to her future husband. Where in the book of life does that qualify as "fair"? The odds of her making it 5 years was about a 60% chance (much better than the 15% only 5 years before). She accepted the plan for the most aggressive chemo treatment on the books and was admitted shortly thereafter to begin her battle. It was made clear that she would need a stem cell/bone marrow transplant when the chemo regimen was done. Everyone in the family who was eligible was tested. The most likely match would be found among a sibling, however this was not the case for my Mom. No family member is a match.

This is my inspiration. The rage, desperation and lack of control that I felt when I was told there was nothing physically that I could do to help save my Mom, was paralyzing. When your personality is to fix, heal, comfort and love, how do you release the anger you have towards God for not giving you the right HLA composition? Well, you forgive yourself for being angry with God, because it isn't his fault. Then you forgive your body for "betraying" you, and you look for other opportunities to comfort and love those suffering. For me, I placed my bone marrow in the National Bone Marrow Registry Database hoping that someday there may be someone in the same situation who could use my help.

In September 2010, I was contacted via email by the Be The Match - National Bone Marrow Registry (NBMR) telling me that I was a possible match for someone. Was I still interested? Yes! In early December, they contacted to ask if they could test my cheek swab for further typing. Yes! Why haven't you done it already? :-) In late December, they contacted to tell me that I was a match, but they needed to do further blood testing to ensure I was healthy and the best match. 4 viles of blood later... I received a call on Friday, January 7. "Erin, you are the donor of choice for a 2 year little girl battling Acute Leukemia. Are you still interested in donating your bone marrow?"

The collection date is set for March 2nd. I have more testing to complete and more to learn about the donation process, but I am so excited to be giving the gift of hope and life to this little girl and her family. I hope the feelings of hopelessness, rage and exhaustion that her family must be feeling will dissolve with this donation. A moment of pain (via a big needle in my hip) will be worth the opportunity to give this little girl a future. Her first day of school, first bike ride, first kiss, her own Prince Charming. I pray that this is her cure.

Join me on my journey as I document the physial process of donation, as well as my emotional and faith journey. I titled this blog "Our Numbered Days" because David reminds us in Psalm 90 and 39 that we are mortal; we have only today. Embrace today and the opportunities that are given. Not one of us is promised a tomorrow. What a gift it is to be reminded to live each day to the fullest and enjoy the moment we are in. I find love and opportunity in this moment and encourage you to do the same. My Mom is healthy and happy and more full of life today than she was 4 years ago. She was able to use her own stem cells for her transplant, but someday she may need a donor. I pray there is someone out there that can do for her what I hope I can do for this little girl. This inspires me daily. I look forward to sharing this journey with you.