UPDATE: The best sentence ever uttered

Thirty days after your transplant procedure you will receive an update on your recipient. For me, these were the longest thirty days of my life. The call came as I was preparing to go to work. I was mid straightening my hair when my phone rang. I looked down and saw my advocate’s name. I picked up the phone and held my breath; my heart felt like it was beating out of my chest. Then I heard the words I was hoping and praying for:

“The transplant was a success!”

My 3-year old princess is alive and well, she has a second chance at life! The excitement and rush of emotions is indescribable. The news made every thing leading up to this point worth it. I was so overwhelmed in fact that my straightener remained on for the duration of the day, oops! Thankfully, the house didn’t burn down…though I am pretty sure even that would not have stolen the joy I felt.

I recognize not everyone receives happy news after a transplant. There is a possibility your recipient will die. Our job is to provide them the best possible chance at life. I would like to invite readers whose recipients didn't survive to respond. I would love to hear about your experience and support you. Telling your story could greatly help someone else who is struggling. 

Next update on my recipient is at the 6 month mark, but stay tuned because I will still be updating. Currently planning a bone marrow drive, which is super easy! Be the Match practically does all the work for you.

If you are curious about hosting a donor drive please visit:

http://bethematch.org/Support-the-Cause/Participate/Host-a-donor-drive/

For more frequent updates please follow me on my Facebook page: Support the Gift of Life. 

"For I will restore health to you, and your wounds I will heal, declares the Lord" 

-Jeremiah 30:17-

PART FIVE: Donation Day!

“BEEP BEEP BEEP” the hotel alarm chirped at 5am. I was already wide-awake with anticipation and excitement. I was grateful that the registry set up a hotel arrangement for my husband and myself that was conveniently connected to the hospital. I will also add that my dear friend, who was close to 9 months pregnant at the time, also stayed with us and was quite comfortable. You and your loved ones WILL be taken care of in every way, and the registry covers all the details for you! Due to the extent of my excitement, we were dressed and out the door within minutes.

The prep procedure is similar to that of any other surgery: changing into an oh-so-stylish hospital gown, meeting with nurses and the anesthesiologist, and getting some additional blood samples. The IV is not comfortable to have in but it does help remove your feeling of thirst from fasting. Your team will do their very best to get you into the earliest OR available. My surgery was pushed back until 10am but I was continually checked on while waiting so I did not feel forgotten. When it was finally time to wheel me to the OR the staff was nice and let my husband follow us until the very last minute so I was completely comforted.

I was grateful for the warmth my husband’s support provided because the OR was COLD. Thankfully, within a couple of minutes a mask was over my face and I was told I was going to take a very nice nap. When I awoke in recovery the first thing I felt was disorientated and nauseous. The last thing I remember was my husband holding my hand so I confusedly kept asking where he was. The recovery nurse went and got him for me, which they will do for you provided the recovery room is not full. I was instructed to eat some crackers and drink fluids. My throat was sore from the breathing tube (breathing tubes are necessary anytime general anesthesia is used) so I requested soda, which was soothing. The ONLY negative part of my experience was that someone dropped the ball and forgot to administer my anti-nausea medication. Your advocate will bring you pain and nausea medication before you leave the hospital, but the hospital should administer some through your IV while in recovery.

Advocating from the Recovery Room

I was moved back into my hospital room and that is when I started to feel soreness in my pelvic bone. It hurt to move but in a good way. It was the kind of feeling whenever you have a tough workout and then force yourself to move or stretch the next day to get the lactic acid moving out of your muscles. It hurts but you know it is helping you. They will always keep you for supervision after surgery, but how long they keep you depends on you and the hospital. I was ready and wanting to leave to a more familiar place to recover. Due to the absence of my nausea meds, I did eventually throw up but I felt much better afterward. We were finally released and thus began my recovery period, bottom line:

-Expect to rest the day of and the day after surgery.

-I required assistance to move around and use the restroom but only for about 10 hours.

-Have someone supervise you for 24 hours incase you get dizzy.

-I switched from prescribed pain meds to ibuprofen within 36 hours.

-I was back to work and doing light workouts after 1 week. I have a very active job, you could return to less active jobs sooner.

-Soreness was a factor. I would say my pain level was about a 6 the first two days and then dropped to a 2-4 shortly after that. Pain was only bad when I moved, and icing and pain meds made resting pain free.

-My soreness lasted a total of about 2 weeks, but I only felt it when working out or sitting for extended periods.

 And lastly, think of your recipient every single day. It will make it all absolutely worth it, and trust me…you will be eager to do it again if given the chance. 

PART FOUR: Be a warrior NOT a worrier!

The journey to donation day is just that…a JOURNEY! Be prepared to experience ups and downs emotionally, and strive to be flexible.

I am very obsessive when it comes to planning, I like to have a plan A, B, C, and D. Do not worry if you cannot relate, your advocate will take care of all the plans for you. My mind started racing as I tried to do my advocates job in covering all the bases. My mother was having major surgery around the time the transplant was scheduled, so I felt very accomplished when a smooth plan of action was set. 

My phone rang and my advocate’s name showed on my caller I.D. This phenomenon eventually became a trigger for anxiety because I always assumed it was bad news after this point. I was told to grab my calendar because the transplant was being postponed. My recipient ran positive on a test that she needed to be negative on. “Oh no. Will she be okay? Will she be able to survive this transplant?” It will shock you how much love you can have for a complete stranger. I don’t even know her name, so she has fondly become known as “my little princess.” The news that my recipient may not make it to the transplant rocked me to my core.

I cannot emphasize enough how much you MUST seek out support during this time. Worrying about your recipient does not help them gain strength and survive transplant preparation. So, what can you do? Well, to be honest I didn’t have the answer until blessed support intervened. My dear friend has a mission to encourage children who are fighting cancer or disease. She came up with the wonderful idea to make superhero outfits as an outward acknowledgment of the strength these children have within.

My friend lost her mother to cancer. Instead of letting cancer have the final say, she found a way to help those still fighting…my recipient included. While the superhero outfit for my princess was being made, my friend prompted me to pray over her. The sewing machine worked the materials while I was working on finding strength in my heart for my sweet princess. Strive to be proactive while you are waiting to donate (You can write your recipient a letter, make them a gift, and/or pray over them!) 

That day I found so much peace and strength, which you will need to find, too.

The days leading up to the transplant you may:

-Learn to write in your calendar with pencil.

-Find that some people may not be as supportive as you need. That is OK…move along.

-Take lots of vitamins and get lots of sleep. Avoid people that are sick, regardless of if it hurts their feelings. I got sick the WEEK of the transplant date. Thankfully, Be the Match provided a team of doctors to get me well enough to donate.

-Miss out on some plans. Traveling right before a transplant is too risky.

-Feel immense pressure and responsibility because someone’s life now depends on you.

Regardless…I PROMISE you if you push through it, you will find that it is absolutely worth it. I would donate again in a heartbeat. These are all minor inconveniences in comparison to the LIFE you are offering someone. Take lots of deep breaths and remember… your recipient needs a warrior, not a worrier. 

PART THREE: Full Physical and Informational Session

The next step after joining the registry is waiting…everyone’s favorite! If you are a potential match you will be asked to undergo confirmatory blood testing. The tests are looking for a specific protein marker in your body.

Myth buster moment: Bone marrow donors are matched to recipients by a protein (HLA) in the body with a super fancy long name and NOT by blood type. This protein is responsible for knowing which cells are a part of your body and which cells are party crashers (i.e cancer or disease).

Once the best match for the recipient is chosen, the donor proceeds on to a full physical examination and an informational session. For me, this part caused some anxiety because I had moved out of my registry city. The physical HAS to be done by the actual doctor operating on you, so it was decided that I would do some traveling.

If you are worried about any costs required in becoming a donor, this section is for you:

-The donor registry covers ALL costs. This includes: travel expenses (they will pay to fly you or pay for your gas), hotel stay, meal costs for you and a travel companion, and boarding expenses or the fees required to travel with your pets.

-If time off work is a concern, the registry provides a reimbursement of lost wages.

-You will not have any medical fees, but you do get to keep the results from the full physical.

The required physical is standard procedure so I won’t spend too much time addressing this part. I will say that it was very comforting to meet the doctor pre-surgery, and to ask him any of my questions. I briefly got to meet other donors who were donating through the method much like giving blood. I immediately

felt a sense of comradery and excitement surged through me.  The full physical is coupled by an informational session with your donor advocate…this is when it starts to get REAL.

The informational consists of a video explaining the procedure, forms, and finding out more about the person you are donating to. I would recommend having a family member or loved one with you to help you process the information you are receiving. I was very grateful to have my mother by my side to help me remember to take one thing at a time. First we learned a little bit about my sweet recipient. You are provided age, gender, and disease/cancer type. My recipient is a very young girl with a deadly blood disease, which is very similar to the disease that took my Grandmom’s life. This was my first “tissue moment.” Then you will fill out forms documenting your health history and allergy information. This is important because your donor will receive your blood type and all of your allergies.

My next tissue moment came when I was momentarily made uncomfortable by the facts. Before this point in the process you could change your mind and back out with relative ease on your moral compass. The informational is when you sign an agreement to have someone’s life in your hands. This agreement is still breakable; you will never be forced into anything you don’t want to do. The purpose of the agreement is to help you understand the impact your actions going forward will have.

Uncomfortable fact moment: your recipient has to undergo radiation treatment before the transplant, which completely kills their immune system. The prep time is usually between 5-9 days of intense treatments and isolation. Once your recipient starts preparation, if you back out or are unable to donate it is VERY likely that they will die.

There was not even a small part of me that would consider backing out, but receiving this reality still caused a great deal of anxiety. What if I get sick? What if I get in a car accident? The worst-case scenarios may start to whiz through your brain but you are not a lone. I will leave you with the very comforting words of my donor advocate:

“We are your seat belt. We are looking out for you and we just need to take this one day at a time. We will help you get to donation day.”

PART TWO: Joining the Registry and Additional Testing

Joining the Be The Match registry is incredibly simple and easy. All you need to do is visit their website bethematch.org or attend a donor drive. You will be provided a kit to swab your mouth and in under a minute your part is over and you have officially joined the bone marrow registry. The joining process is SO easy that you may find yourself wondering why I chose to dedicate an entire post to it.

I simply cannot continue any longer with this blog until I share the reason behind my entire journey. This cause is one that is hugely overlooked, and the few people that are informed about it are greatly misinformed. I do not say this from a soapbox, but from a place of humility. Selfishness is a human condition, and like most people, I was quite comfortable living my life and felt good enough about myself for being an occasional blood donor.  All of that changed when I met a very special young lady. I hope each and every one of you reading this knows what it feels like to be inspired by someone, because it is truly life changing.

My inspiration goes by the name of Natalia. We met when we were in junior high, which as most of you know is generally summarized by terms such as “self entitlement” and “hormones.” Natalia instantly stood out to me because she was quite the contrary. Everything about Natalia was genuine, done with humility, and purity of heart. Though we lost touch over the years, I never let go of the person she was and how badly I wanted to be that kind of person. Flash-forward to high school, a group of students and I were hanging out at some outside tables of Sonic or Chik-fil-A. I remember hearing beforehand that we were going to make cards for someone but I never thought to inquire further until I was glancing over the card materials.  “Who are we making these for?” I flippantly asked, and the answer was not one I wanted to hear.  No surely, not the same Natalia! Why her?

I instantly reconnected with Natalia, and was not surprised in the least at her responses to my questions and messages. Only sweet Natalia could fight for her life with such valiance, grace, humility, and faith. Although cancer (AML) was the means in which God called Natalia home, Natalia did more with her unfairly short life than most do with 100 years. Natalia was an angel that lived on earth, so I am sure her transition to heaven was a rather easy one.

Before joining the registry, take a moment to think about WHY. One visit to a children’s hospital will cross your path with countless heroes and angels fighting battles you and I can’t even fathom. Do not join because you feel socially pressured. Do not join for karma points. Join because you’re inspired, because that inspiration will carry you further than you could ever go on your own.

During this phase of the journey, you will likely experience:

•    Feelings of insignificance when you talk to your friends and family about joining the registry. Most of you don’t have personal experience with this cause. Some people may question why you are so passionate about it or wanting to do it in the first place. You must talk though, because when you find people that do support you it is invaluable. 
• Other strong yet seemingly controversial emotions. You may be joyful, fearful, or saddened all at once when you get the call saying you are or are not someone’s match.
• You may feel like a pincushion. Before you are considered to be someone’s match, you will be asked to do blood tests. In my case, but not all, I had to do multiple blood tests during this process (confirmatory testing, physical protocol, pregnancy test, etc.)
• Impatience. You will be asked to embrace the military motto “hurry up and wait.” The more you invest in this, the stronger feelings you may have about not knowing. Expect this, and know that it is absolutely okay to have these feelings!

This is not simply signing up to donate blood, though that is a wonderful thing to do. If asked to donate, you are giving a part of yourself to someone. YOU are becoming someone’s only option for life. WHY do you want to join? 

In loving memory of Natalia who joined heaven's ranks on October 28th, 2009.