Maddie Needs Prayer For a "Welcomed Shock"

Well, friends, my heart aches to even type this...we desperately need prayers for our niece, Maddie, right now.  The positive is that she is physically feeling better right now and currently cancer free (yeah).  The negative is that her new white blood cells from the bone marrow transplant did a wonderful job at fighting her undetected subdued mono infection, but unfortunately are not thriving after being used in that battle.  They are not multiplying as they had been so her old white blood cells are regaining ground in her bone marrow.  Below you will find Dan & Amy's latest update from their carepage (found here).  Please read through it and PRAY HARD that her new white cells would start to miraculously multiply so she will not have to go through another bone marrow transplant again and remain cancer free.  Thank you, thank you, thank you for standing in the gap for our niece.  Team Maddie, let's get on our knees!
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Day +36

Posted 4 hours ago

The last 24 hours are difficult to share and full of contrasts…highs and lows. I’ll start with some news we got this afternoon. Maddie’s test results from this week’s blood test are in and they show that only 5.7% of her bone marrow cells come from the cord blood donor and the rest are her old cells returning. This is a marked drop from last week’s numbers and it puts her right on the border of possible transplant failure. According to our doctors, studies have shown that when that number gets below 5%, there are is no chance of recovery and the process is considered to be officially unsuccessful.

Maddie is scheduled to have another bone marrow procedure done Friday morning, in order to discover a more definitive prognosis. The results from that won’t be in until early next week. If this transplant does not work, there is one last matching cord blood donor that Maddie can use for a second attempt at transplant. This means that Maddie would basically start the whole process over as soon as her body is ready again. The second cord blood matches Maddie slightly less than the first one did. The team is searching the international database to see if any new matches might be found, but nothing has surfaced so far.

In contrast to all of this dire news, the short term issues of Maddie’s health have been improving. Her fevers have been gone for a few days now. She has perked up and felt a lot better recently. Her white blood cell count has been climbing steadily, but this good progress could be coming from old cells inveterating. However, this temporary status has taken care of all known infection in her body for the time being. This allowed for a very important surprise yesterday afternoon. The doctor permitted a one-time 30 minute visit with Sydney in the room! They were not allowed to have much physical contact and they both wore masks, but the time together was magical. They laughed, talked, played and walked around the room together. The effect on Maddie was an infusion of joy and energy. Her sister blabbed on and on about it in the car afterwards, as well, saying, “I see Baddie!” As parents, our hearts experienced the bitter sweet taste of seeing them together for the first time in 40 days, but knowing that this ordeal is far from being over and we simply don’t know how it all will end.

It is a very difficult time right now, because the prospect of transplant failure means the inevitable return of cancer. Yet, at the same time, Maddie physically looks and feels the best that she has been since late May. We are trying our best to not give up hope, but in all honesty, an improved result next week would shock us…a welcome shock, but a shock nevertheless. We are also extremely grateful for the blessings of a sibling visit and less suffering for Maddie these past few days.
Needless to say, we covet your prayers for us.

Be The Match

This weekend I decided to try to save a life. Yes, I have a specific life in my mind (our niece, Maddie), but the chances of me saving her life are very slim. However, despite my odds being low for Maddie, I still decided to go for it because ultimately maybe there is another "Maddie" out there I would be matched with. Save a life you may ask??? Yes, I signed up to be a bone marrow donor and that act could very well save another life.

Being put on the bone marrow donor registry was not a decision I quickly came to, however, so I wanted to honestly share my hesitant process in case others out there are struggling and questioning whether they should do this or not.

One would think my decision would be a no-brainer since I know my blood type already matches Maddie's and she needs to have a bone marrow transplant in the next several months, but as much as I wish that was the way it went down in my brain, it didn't. If you know our family well at all, you will already know that I don't do "medical things" well...Micah is clearly the nurse of our family! Occasionally my stomach still churns just taking Micah something at work and he's been a nurse for over 6 years. I've gotten better over the years with things like my kidney infection, 3 natural childbirths, Toby's heart surgery, my gall bladder removed, and Toby's treadmill accident to deal with, but nonetheless I become a big physical mess when I have to deal with bodily fluids or anything medical. So, that was a big hesitation of mine from the get-go. I've never donated blood and get queasy just thinking about it. If you are like me, the idea of donating bone marrow does something violently wrong inside your body.

Because of my physical hesitation, I then justified it by saying, "Well, I'll just wait to see if Sydney is a match first since she'd be the best match possible." That, along with other phrases such as, "Birth relatives have a very low chance of being a match." or "Once you go through childbirth, your body changes so much you are rarely a match for someone. The best match will probably be a mid-aged, fit, male." kept me thinking I probably would never be a match for anyone anyway so what's the big deal? Then my brain would go here to justify my lack of commitment..."How on earth would I make this work with my own kids. Who would take care of them while I was getting this procedure done? I just don't know if this is the best thing to be dealing with right now. We have so much on our plate already with 3 kids and an adoption to be working through." Blah, blah, blah. Basically, my brain and uncomfortable body was searching for any and every phrase I could hear that would justify me to NOT sign up. It's really not anything I WANT to do so being excused by someone would have been great.

However, all the while those thoughts were going through my head, they were also being surrounded by feelings of guilt. Guilt that I was being so selfish. Seriously? Was I really allowing my hesitancy with medical junk to keep me from saving another person's life? Was I allowing my fears to overtake my actions? Flat out answer...yep, I was. The reality of being a bone marrow donor is that if I am a match to someone out there, I will go through a procedure that will probably get my body all worked up for a little while (because that's just me), go through a simple surgery, and have about a 1-3 week lower back pain afterwards...and then I'll be absolutely fine and back to normal. But, then again, would I? I'm now banking on the fact that my "normal" would be so drastically different knowing that I just helped save someone's life. I think, in the end, my sacrifice would far be outweighed by the humbled honor that God gave me the chance to give another precious child of His the chance to run, laugh with friends, eat an ice cream sundae, get married, serve on a mission trip, or just be a daughter or son to a parent who shouldn't have to say goodbye to their child just yet. All that for a potential week or so of discomfort....geeze...

When you have a situation hit home as close as a niece who now needs SOMEONE, ANYONE to donate bone marrow in order to survive, it makes the desperation of the situation very real. For those of you who haven't heard, Sydney (Maddie's 2 year old sister) is not a match. Maddie's own immediate family can not save her...but someone can. Maybe, on a crazy whim, I would be the one who can...or maybe it is you. And maybe I won't be a match for Maddie--maybe you won't be a match for Maddie--but maybe you and I will both be a match for two other people who will be able to grace this Earth for some priceless moments more. If I know my niece at all, I think she would be so excited and happy to know that because of her needing a bone marrow transplant, many people would sign up to be on the donor list and end up saving many other fellow fighters for life.


So, if you are ready to sign up and help save a life, the next step is so incredibly simple. Go to the National Bone Marrow Donor Registry website called "Be the Match": http://marrow.org/Home.aspx. Once on the page, you can do one of two things--1) See if there is a blood center near you to walk in and give your sample (just a cheek swab--no blood work needed) or 2) if there is not a center near you, then you can have them send you the kit in the mail to do the cheek swab and then send it back to them right away. There is no cost to you (although you can make a contribution because it does actually take $100 per kit to process). You will be put on the donor list once they process your kit. It's seriously that simple.

This is the very list Maddie's transplant team is scouring every week hoping to eventually come up with an exact match for her. This is the very list that 10,000 others just like Maddie are waiting on a match from. Did you know on their website they claim that only half of those people needing life actually get it from a donor? That is a percentage we can greatly increase, folks.

I ask of you today, as the aunt of one who needs it and as a person who probably hesitated just like you have been doing, will you join me in my decision to try to save a life today? No, it's not ideal for any of us who might be called to donate, but what a tremendous blessing to actually be asked to do it. It will change their life and it will change yours. Life truly is priceless...here is a girl who needs it...

"Light in a messenger's eyes brings joy to the heart, and good news gives health to the bones."
-Proverbs 15:30