BE THE MATCH

We share the journey of our family joining the bone marrow registry and donating to spread awareness.    We share it all, our thoughts, our worries, our experience and we share that we do it all again.   There are heros all over the world doing good everyday - this is just the story of my husband.    

Joining The Registry / Swabbing Our Cheeks....

8 weeks or so and all our Steps Together posts will be over... But doing the project, we learned that there are 4 families in our town who have children with Leukemia.  One of those families shared www.bethematch.org with us.   Our 5 cotton swabs arrived in the mail today, we ran them through our mouths and in the mail they go tomorrow. It's that easy.

Less than 3 months later....

As a follow up to the 35 year old woman Mike was a potential bone marrow match for...... we never heard back from the blood bank after the 2nd stage of testing/confirmation.  We should have heard the Tuesday before Thanksgiving but we gave them the benefit of the doubt with the holiday and waited. Still no follow up call, seems a bit odd, but I guess I'm happy to have them allocate their resources to the matches and not spend time calling non-matches.

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3 weeks later....  (Now just 5-months after joining the registry)

We just got the call, the unknown 35-year old woman is ready for her marrow and Mike is the chosen one. Donation date is selected, it's 8-weeks from today.  Kind of speechless, kind of scared, kind of proud - hard to put my finger on the emotion right now.


Donation date missed, it's now 4 weeks past the first donation date given.....  

A few have asked about Mike's marrow donation so here's the latest. Due to the needs of the recipient, the donation is now set for 4 weeks from today.  While I wanted to share the entire process to bring awareness to marrow donation, there was a moment where it was a lot to think about and a lot to share. When the package arrived detailing the risks, the corresponding life insurance policy that comes with donating, there was a moment (more for me than Mike) where I wasn't so sure, we don't know this woman, we are a young family, some unknowns but how do you balance your own fears with knowing you have the ability to save someone's life. The karma of it all. So we are going ahead like many people do everyday to help strangers. With that came a commitment to post vaguely on social media as I'm sure wherever this woman is overseas, she is likely on FB just like me and they want to protect the anonymous process. I'll keep you updated vaguely as things become very real (process wise) when we hit 30 days till donation. For now we enjoy that Mike is on his way home and we have a good excuse for him not to travel for a few weeks! 


11 days later....

3 hour physical complete for Mike's upcoming marrow donation. TONS of blood (30 plus viles), EKG, chest x-ray, lots of paper work. As it's an international donation, both the donor and recipient country do their own tests meaning extra paperwork, extra blood. The EKG showed an enlarged heart (I knew he had a huge heart!) but this isn't untypical of a marathoner so another EKG and ultrasound of his heart will be done in the coming days.  No alcohol for 2 weeks prior as it reduces the effectiveness of the drug used and be very careful as once she starts the process on her end, she must get the marrow. They treated him like a rock star, literally texting doctors before he arrived so they stopped what they were doing and saw Mike. The odds of this being a success are as high as 50%! 

The coordination effort behind this is mind boggling. There will be a courier outside his door waiting for the stem cells, have a flight waiting, have security clearance and customs clearance in advance from both departing and arriving airport. 

And lastly a shout out to marathoners. The donor who was there yesterday was also a marathoner!


9 days later....

Due to the health of the unknown recipient, she will not be well enough to receive the marrow as planned. They have pushed it out another two weeks. Downside is that ALL the blood work that they needed for both the donating and receiving countries has to be within 30 days of donation so Mike has to do it all again. This Friday he will see a cardiologist to follow up on the enlarged heart found during his physical. They are still thinking it's running related but need to fully ensure Mike's safety as donating is stressful to the heart. Keep this girl in your prayers, she must be in such a fragile state. I pray we get to meet her someday meaning we all get through this without issue. 

Cardiac Follow-Up....

Mike's athletic ability explained. Look at that left ventricle beating off the charts when resting...with a heart rate of 43. (and he's out of shape).   Heart cleared to donate!

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Preparing the kids.... maybe... 

"Daddy are super heros real?" Mike goes ummm...I see a perfect opportunity to prep the kids for the upcoming bone marrow donation. "Actually kids, Daddy is a super hero. He is going to try and save someone's life by giving them some of the special power that he has." Jacob replies "Iron man is still cooler" Mike jumps in and explains a woman is going to come give him a shot everyday to give him more power. Kids are staring at him blankly and Jacob goes "You should get a iron suit." Good Talk. (anyway redo of all blood work is tomorrow, we are locked and loaded again on a new date. To that point, we are drinking every night b/c soon we will have to go dry in preparation.. Well he will but he didn't drink for those 9 months when I was pregnant - oh wait...)

 

Bottoms Up!

Our last glass! Marrow donation is now two weeks out. Recipient begins preparation in 4 days.

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9 months from joining the registry....

MIKE BEGINS BONE MARROW DONATION PROCESS TOMORROW! 

Last year we started Steps Together to help families who were facing a medical crisis. The project had three goals – to provide financial and emotional support as well as spread awareness. To our surprise, the awareness hit close to home when we realized how many families in our town were battling cancer. 

One of the families we met was the Spitzers. Their 8 year old son Ben has been fighting leukemia for well over two years, yet this incredible kid just last week managed to take the starting pitcher position for first season’s game of travel baseball team. Although his family never needed the support of Steps Together, we became close with Derrith (Ben's Mom) as she largely contributed to the inception of Steps Together last year. Encouraged by Derrith, Mike and I joined the marrow registry in August. We swabbed our cheeks in our kitchen and dropped the envelope in the mail. 

Within 8-weeks, we received a call that Mike was a potential match. Yes, just 8-weeks. Tests followed, it was confirmed, it was exciting, it was scary… it was more scary than exciting. We have to believe some greater force intervened as there is a 1 in 5 million chance of being a marrow match for a non-relative. Mike has spent an incredible amount of time at RWJ over the past several months preparing to help this woman that we’ve never met. Tomorrow, he will begin the process of donating marrow. Her odds of conquering leukemia with a marrow donation are as high as 50%. Mike will take 5 injections over the next 5 days that will make his body produce extra marrow. His bones will literally fill so much that they will expand causing the stem cells will overflow into his blood. This is expected to feel as uncomfortable as it sounds. On Tuesday, we will head to the hospital for a 5-hour procedure.   The doctors will remove the cells from his blood.  The risk to the donor of this procedure is minimal, but it can be painful and stressful on the body. 

Our kids don't get it, Iron Man is still more of a hero, but I get it. Mike is my hero. To this woman, who we hope to meet after the 2-year international donor regulations are lifted, we pray for you. I wish you could know the man your marrow is coming from. I feel your odds of survival are far greater than 50% as I've never met anyone in my life like Mike. If you get any part of Mike's personality, you may find you have more energy than combining that of the nearest 100 people; you may be the most encouraging and supportive person in the world; you may also become mildly obsessed with the color of your lawn.  

What Mike is doing literally epitomizes what Steps Together is about. He is paying it forward and stepping up to help someone in need… someone that he doesn’t even know. May you find this story as inspirational as I do. Please keep Mike in your prayers and this woman who awaits his marrow. If you want to consider joining the bone marrow registry or to learn more, please visit www.bethematch.com.  


Day 1.....

We are home. Turns out to donate you get 10 shots, not 5 - one in each arm x 5. Mike's left arm swelled so we had to ice it and wait for a doctor to check it - she wasn't concerned. He feels fine and wants to run but they said no. So now the rest of the shots are in our fridge and a nurse will come to our house. There were 4 people in our room - one donating her own cells as she didn't have a match, a man receiving a treatment from complications after a bone marrow transplant, a very tiny man who was donating (they kept telling us Mike would be fine - look how tiny that guy is - they even used strong like bull a few times - funny nurses!) and us.  We were in the lucky seats today and we are thankful for that.

 

Day 2....

Day 2 injections just completed. That's our super sweet nurse Liz. Mike felt funny last night, some sternum and back pain which we expected. But he slept well and woke up great. We let him rest and surprised him with breakfast. Fingers crossed he keeps handling this so well. We are off to his company picnic in a few.

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Day 3....

Day 3 injections done. We won't get to see nurse Liz again bc she has another job Monday thru Friday but she was great - even brought gifts for kids today! Mike is telling me he is good but he only wants to ride his mower not push so that tell me he's not great. Plus I found him laying on the couch which never happens. He seems to have tired, glassy eyed moments but then gets better. The back and sternum pain continue to increase, the nurse explained that it's because the cells are generated there. All in all, a small price to pay (says the one not getting shots).

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Day 4....

Shots 7 & 8 are done!  That's our early Monday morning nurse.   Post shots - Mike is off to work.  He works from home a lot though which is good as I'm not sure he would drive today. 

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Pictured here are my two incredible kids with our hero. They have called on me for everything since Mike started this process. Em is a Daddy's girl through and through but wakes up calling me and telling me that Daddy needs rest when I walk in. She always wants to talk about bones now.

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I have to admit I've never been more excited for a Monday just to get this day behind us - which is ironic as I'm equally anxious about tomorrow's harvest. Having said that, we know how blessed we are that this is temporary and no one in our house is really sick taking drugs with difficult side effects for a long period of time. It's a true honor be Mike's wingman through this. As for pain, I keep imagining those 10 faces you see for people to indicate their amount of pain when hospitalized. 1 is a big smile, 10 is a big sad face. Mike takes it all in stride so I have this imaginary chart in my head to gauge it. A 1, he is running sub 6-min miles, 3 is about 8-min miles, 5 is him running through our yard pushing his mower to see if he can beat the time that it took him to mow the previous week, 8 is him riding his mower. Well last night he told me he couldn't run if he wanted to and he couldn't even ride his mower. His hips were the largest source of pain and he described it as if the ball had expanded and was no longer fitting - getting up from a seated position was the worst. As for the rest of the pain, it's moving aches such that different areas of his body would tense like they were going to cramp but didn't. Motrin is helping, he slept well last night and he seems better this AM. If the past few days are any indicator, I think tonight will be the hardest. My mom will be taking the kids over night so we can be at RWJ at 8 AM tomorrow. Thank you all for your encouragement, I share it all with him. And I say it again, I love this guy every inch of my heart.  

Later that night.....

Mike is feeling very full of something, he's somewhat dazed, feeling mild dizziness and feels like his eyes could just ooze out.    We went out to dinner and carb loaded!

 

Day 5 - Donation Day!!!!

We arrive early and meet a woman in the waiting room.   Her husband is nearing the 5 year mark post marrow transplant.    She shares a lot with us about how he was diagnosed and his transplant.  She holds back tears and shares details like we were old friends, sometimes laughing at what she just told us.   She tells us how she slept next to him each night, hydrated his mouth constantly to avoid the mouth sores, smuggled in baby food to prevent him from needing a feeding tube.   She is proud of what Mike is doing but doesn't seem to grasp our anxiety.   The reality is our anxiety is nothing in comparison to what she has faced.  Her husband is hooked up to the exact type of machine Mike will be connected to donate.   The thing is he does this on a frequent basis to keep fighting his Leukemia, we are here for one day.   

8 AM: Port in, shot 9 and 10 done, lots of blood taken as Mike has agreed to participate in an experimental study as part of his donation. 45 mins to walk around, use the bathroom for the final time and hopefully reduce the amount of sweat pouring out of this guy! 

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9:30 AM:  Here we go! 

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11 AM:  Sorry for the graphic journey but we have marrow. Whoot! 90 mins in, 3.5 hours to go. Feeding him a power bar as I type. 

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2:30 PM:  Tubes out. RN was beyond excited about how good his marrow looked. Platelets post donation within normal range which is not common. Mike is fired up!  I'm so beyond proud. On a lighter note, who knew Mike could go 5 hours without peeing? He is feeling good and we will hear by 6 pm if we have to go back tomorrow. I pray we don't. 

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6 PM:  The phone just rang - he is done!!!!! He feels like crap between the procedure today and the injections this AM but God willing, we can pour a celebratory glass of wine tonight after the little ones to go sleep. Thank you all for letting me brag about my hero and supporting us along the way!!! As soon as we hear anything from her which can be an update from her doctor within 30 days, we will share it with you. 


Post on our Steps Together Facebook Page.....

For 5 days I watched my husband handle the side effects of drugs in preparation to donate marrow to a complete stranger. Today I looked the other way as they put in a port. We then went for a walk to relax before the procedure started and found ourselves trying to forget our own moments of being here and being scared for our kids. My mind is constantly taken back to the families we help. I wonder how it is humanly possible to manage all that they endure. My drive and passion for Steps Together increased tenfold this week. May yours as well.

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The day after....

Blown away by what we found in our driveway. Thank you Kevin!  This is on top of dinner tonight courtesy of our hero Billy. (He refused to let us decline and he is to cute to upset), an incredible text from my niece Paige who seems so young but gets this, Mike's secretary got yesterday comp'd, the manager of Applebee's promised us a drink and countless words of encouragement from family and friends.  The world has so much good!

Mike is feeling good.  Still some sternum pain, hip pain and general stiffness but he is working - working from home as he usually does.  

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Just a few of the words of encouragement we were so blessed to have around us....

I love reading every word you write about this journey and I wish I had the eloquent words to describe how I feel about what you and Mike have done. Selfless and heartfelt - you are the goodness the world needs more of. So honored to know you both.

I know we talk about heroes in our lives but this is not a silly professional sports star or even a comic book character, this is a true hero. I am beyond speechless to say I know this man and his wonderful wife. Mike, Courtney's husband, donated his bone marrow today to a stranger. He endured pain, discomfort, risked his own health all to give a chance at life to a woman he does not know. If you feel inspired, get a kit, register, help another human being, be selfless....more of what our world needs.Kudos to you Mike and Courtney Newman. http://marrow.org/Join/Join_Now/Join_Now.aspx

Every time bad things happen you see the Mr Rogers meme about looking for the "helpers". I have had the privilege of knowing some of the most selfless people I have ever known through a group called Steps-Together! They are an amazing team that only needs to ask and I am willing to help. Mike and Courtney Newman are just amazing but today took the cake. Mike Newman gave his bone marrow today for a person he may never meet or even know. Many of us will give a dollar at a register do a walk or a run donate our time or a large check but what Mike did today should be humbling to us all. He gave himself, his health, and his comfort so that someone else could have a chance. Thank you Mike Newman for your selfless act and giving me just a little hope for humanity.

I'm very proud to know Mike Newman and Courtney Newman for their continuous efforts to generate hope, spread kindness, and find new ways to help people. Best wishes to Mike and the unknown patient in need that he is helping!

Thinking of you guys and sending positive energy your way! What a wonderful thing you're doing. An anonymous gift that money can't buy. A priceless and selfless good deed! Kudos to you and your family!

There all many heroes in this world and many of them go through life with very little recognition. My daughter and son-in-law, Courtney and Mike, started a non-profit "Steps Together" to help families facing medical expenses brought on by serious illness. Along this incredible journey of helping people, they joined the bone marrow registry and Mike is a match for a young woman. Mike begins his procedure today. Pray that he and his recipient are a perfect match and this will be successful. I am so proud of them.

Big Big prayers and thoughts to my brother in law Mike Newman, who starts his injections today to donate his bone marrow next week. So proud of this overwhelmingly generous act, may he be comfortable and have no side effects.......prayers also to the young woman he is going to donate too......may she stay strong enough to survive the process and god willing go into remission....

2 days post donation.... 

Sternum pain is gone, still some stiffness but feeling normal isn't far off!  Mike is driving to the office today. Mike has a rash on his hands and ankles.  We actually thought it was poison ivy but it wasn't itchy.  It turns out this is sometimes a side effect of the drug.  

3 days post donation.... 

A cake arrives at our house shaped like marrow generating hips!  How sweet.  Thank you Derrith!  Mike is getting closer to normal.  

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6 days post donation.... 

Rash is gone except for a severe facial break out.   Mike ran 6 miles today and feels nearly 100%!!

8 days post donation...

Mike is featured in the town paper.  

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12 days post donation....  

Mike is feeling himself and didn't actually realize how bad he felt during the process until he felt better.  He was invited by The Somerset Medical Center Foundation to throw out the first pitch at the Somerset Patriots game for the gift of life that he gave.    He was treated like a rock star and even got to meet Sparky Lyle.  

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Nearly 60 days post donation..... 

We receive a card and the donor thanks us for giving her a 2nd chance at life.   

 

Feeling Inspired? 

Join the registry!  Order your at home kit today from www.bethematch.com

Support Steps Together!  Like us on Facebook at www.facebook.com/stepstogether or click here to join our mailing list.   Follow us on Twitter at www.twitter.com/stepstogether. 

In memory of Libby Pawelchak & John Simon - two friends we have lost to this disease.   

Libby was a childhood friend of Courtney's who lost her battle in elementary school. John Simon was a friend of Courtney's who was diagnosed so Courtney ran her first marathon with Team In Training to support his fight.   At that Philadelphia Marathon, she met Mike Newman.