Earlier today, Alex and I received the news that Will's donor is no longer willing to donate marrow and has removed himself from the registry.
Who does that? Who agrees to donated to a BABY. Agrees to save a BABY'S LIFE. Agrees to a time frame. And then just backs out when it's finally time.
I am angry.
I have always been a big advocate for letting people know how huge of a decision it is to join the registry. It is not something to take lightly. It is not something you do because you hear about a sick baby. It is a LIFE LONG COMMITMENT.
I have said this many, many times and I am going to say it again:
IF YOU ARE NOT WILLING TO PUT YOUR LIFE ON HOLD. IF YOU ARE NOT WILLING TO GIVE YOUR ALL TO THE DONATION PROCESS. DO NOT JOIN THE REGISTRY.
IF YOU ARE ON THE REGISTRY AND YOUR LIFE SITUATION HAS CHANGED AND YOU ARE NO LONGER WILLING/ ABLE TO DONATE, CALL RIGHT NOW AND HAVE YOURSELF REMOVED FROM THE DONOR LIST.
I do not wish the hurt and pain our family is feeling right now on my worst enemy. I pray that one day families will not have to experience this type of devastation. Unfortunately, it happens all too often.
I am trying (and failing miserably) to stay positive. We've had a wonderful year and I know that my anxiety was less than it could have been because we had a donor secured. I will always be thankful for that. I was able to worry less and live more. Soak up our life and our time together.
But I am devastated. I am literally sobbing my way through this post.
Please keep Will and our family in your thoughts and prayers.
Please pray for his new donor, whom ever that may be.
Pray that we have an easy time finding Will's second donor.
Pray that their heart is fully committed to donating.
Most importantly, pray that we find them in time.
April 19, 2013
Well, I'm late to post this (two weeks late...oops) and my blog has been so neglected. We've been busy with sick kids and life and I've been in a blog funk. I'm also in my "hole up and ignore the world while I fight for my child's life" mood. I did this with Kate, I'm doing it again with Will. Please pray I can snap out of this. I know I need support and love. I really do. So I need to find a way to stop shutting it out and start reaching for that support.
We've reached the most important, yet most anti-climactic portion of the BMT process!
I know, I know. You hear "It's TRANSPLANT day" and you get all excited! Yes, the transplant is exciting. It is the moment when a patient receives their second chance at life! The emotion is something words cannot describe but the actual transplant process? If I'm being honest, it's pretty boring!
I think one of the biggest misconceptions with bone marrow transplants is the actual transplant. I cannot count how many times I've been asked "so when is Will's surgery?" In my head I'm thinking "which surgery? He has several more to come." but I've come to realize that people hear transplant and automatically think surgery, operating room, organ on ice.
A bone marrow transplant is not a surgical procedure for the patient. It is done in the patients room and is nearly identical to a blood or platelet transfusion. The biggest differences is that bone marrow cells (I am not certain if peripheral cells are given the same way as Kate received actual marrow.) are not pushed through any type of pump. Apparently a pressurized transfusion pump can damage bone marrow cells so in order to avoid damaging any of the donor's cells, they are given "free fall" meaning gravity is the only thing helping the cells flow into the patients body. The bag of cells is hung on an IV pole and the pole height is increased or decreased as necessary to achieve a proper flow. I have no clue how "proper flow" is determined. All I know is that two nurses and a fellow stand and watch the cells flow and make changes as necessary. Literally stand there and watch the cells flow into the patients body. Drip by drip.
Patient size determines how long the transplant will take. Because my kids go through BMT as babies, they cannot received a high volume of donor cells which means the transplant process takes about an hour for them. But, I've heard transplants can take up to 4 hours in adult patients.
So there you go - the actual transplant. Pretty easy peasy, right?
But the emotion? The meaning behind the transplant? The HOPE a tiny bag of cells brings?
I cannot even being to explain that.
The red line in this picture is the line carrying Kate's donor cells. I took this picture the second those life saving cells
reached her body and began saving her life.
I will never, ever forget the moment Lance's healthy cells entered Kate's body. It was literally a life changing moment. The second his cells reached Kate's body, she actually had a chance to LIVE. To experience. To thrive. To love.
The moment you know your child finally has a chance at living a long life.
It makes this hell worth it.
Knowing we will experience HIS moment in 6-8 weeks?
Knowing his chance is so close?
It keeps me fighting for Will.
So very soon sweet boy. You are so close to your moment. Just hang on a little bit longer. Momma will keep fighting. Your moment will come. Your life will truly begin. I promise sweet boy. I promise.
April 12, 2013
I will never forget the moment my precious baby boy came into this world.
I will never forget the pride and emotion that filled every ounce of my being the second I heard him cry his first cry.
I will never forget my first glace and how I thought he looked like a chubby version of Kate.
I will never forget the fear I felt when he was whisked away to the NICU when he was an hour old due to labored breathing and issues due to CAMT.
I will never forget the sheer determination I had to stand up and walk within hours of my csection so that I could make the journey to the NICU to be with my son.
I will never forget the pride I felt as my husband completely cared for our son during the first 24 hours of his life as I was separated from him.
I will never forget the way my heart doubled. Literally grew in size, the second I welcomed my precious baby boy into this world.
I will never forget the first time Kate met her brother. The love she had for him. The hugs and kisses she gave him.
I will never forget the excitement I felt when I brought my precious miracle baby home.
I will never forget our amazing first year as a family of four.
I will never forget the fear I had, and still have, for my son and the fight he has ahead of him.
I will never forget his first smile. The first time he rolled over. Sat unassisted. Took his first steps.
I will never forget cuddling him in the wee hours of the morning as he refuses to sleep.
I will never forget the first time he said momma.
I will never forget just how perfect this year has been.
But most of all, I will never forget the peace he has brought to our family over the past year. The joy he has brought to our lives. The love he has shared with each of us.
My sweet Will,
Happy first birthday my love.
You have taught me so much this year and have been, and continue to be, such a blessing to our family. Thank you for being just what we needed. I needed your precious spirit to help be through some of my darkest days. Your daddy needed a buddy, a son. Kate needs a partner in crime that truly understands the journey she has taken, the fight she has won.
The Lord knew what He was doing when he brought you to us. He knew we needed you, probably more than you need us.
We love you and will always fight for you sweet boy.
Never forget that. Ever.
I love you now; I will love you always.
April 4, 2013
About a month ago, one of my friends, Kim, texted me about making #teamwill bracelets She was willing to design/ order/ coordinate the entire process and wanted to donate the proceeds to Be the Match in Will's name. I thought it was a wonderful idea! Not only is it a great way to raise donation money but it is a visual and a conversation starter. The national registry would not be around if it weren't for spreading the word and raising awareness. Without awareness of the need for bone marrow donors, no one would ever join the registry!
We do not have a sample in yet but, the bracelets will be kelly green (the color for bone marrow transplant) debossed wristbands that say #teamwill on one side and Strength in numbers on the other. Kim and I were trying to come up with what we wanted to put on the bracelets and one night "strength in numbers" popped into her head. She thought it was fitting for two reasons - 1) Will is being supported, loved, and lifted up by so many people. He is strong because of the mass of people supporting him. 2) After Will receives his cells, he will literally get stronger every day as his blood counts increase, signaling that his donor cells are taking over and multiplying in his body! It is just too perfect! So thankful I have creative friends!
After mentioning the bracelets on Facebook and InstaGram, Kim and I thought it would be fun to do a special pre-order event!
I am so excited about this! Excited to see the support my precious boy receives. Excited to raise money for a cause that is obviously extremely dear to me. Excited to spread bone marrow transplant awareness! A huge thank you to each and every one of you that place an order and support #teamwill! And a big thank you to Kim for heading this up! I am so blessed to have amazing friends that want to support my kids, support their fight, and support this cause that saves lives!
April 1, 2013
I am going to label March a big, fat fail. I basically completed none of my goals (with the exception of reading a ton thanks to a baby that wants to be held from 2-5am every.single.night). Here is your warning - this is a boring update that basically says I didn't do anything I wanted to this month.
I blogged 10 times in March. Not bad but definitely not great either. I also failed to complete the "pages" at the top of the blog. So yeah. Like I mentioned, I pretty much failed this goal for the month. There's always April, right?
I feel like we have had a wonderful family month! Several visitors (my dad and his wife in early March and then my mother-in-law to help when Will had his surgery), tons of fun family outings, special days with each child, etc. We really enjoyed the beautiful weather we've had here in Houston and spent quality time as a family.
I did really good with meal planning so that Alex could take leftovers for lunch which meant he had a good, hot meal, nearly every day of the week!
Arts and craft time continued and is still one of Kate's favorite times of the day! She knows she can only do certain things when Will is asleep which leads to her coming up to me hours before nap time and saying "momma, go put bubba to seep. We need to make crafts!"
My focus for April is one on one time with Kate. As of now, Will will be admitted to start chemo in May and my time with Kate will be extremely limited. I want to soak up all of the time I have with her now before things get extra crazy. I'm hoping we can have a few special momma/ Kate dates in the next few weeks!
While I did pull out my camera (I took approximately 889 pictures in March) I have yet to edit a single one. I shoot in RAW which means unless I open and convert the files, there is minimal sharing. So until I take the time to work on all 900 pictures, they will just continue to sit on my external hard drive waiting to be seen.
My lack of editing also means I have opened Photoshop maybe 3 times all month so I've learned nothing new in that area either.
12 books read for a total of 30 books completed this year!
I did not fail at reading (which is probably why I failed at blogging and photography). I tend to get very focused on one thing and ignore the rest. I was hoping that these goals would help me spread my time more evenly among the things I love. Clearly that has not happened. While I love blogging, and adore photography, my true "I am so stressed out and need to unwind" passion is reading. Losing myself in a book is so freeing to me!
I've had several people ask me how I read so much and there are two reasons why - 1) I am a speed reader. I can finish a book in just a few hours. But, I only read fast when reading on an eReader (I have a Kindle). If I am reading an actual book? I read so slow. No clue why! and 2) Will hates to sleep. He is up for 2-3 hours every single night. Not crying, just wanted to be held. We have a couch in his nursery that we will snuggle on and he will drift in and out of sleep during those hours but he will not let me put him down. Because of his platelets, I am terrified I will fall asleep and drop him so I keep myself awake by reading.
Here's what I read during the month of March:
(All images are clickable for more details/ descriptions.)
I don't normally go in to detail about my opinions on what I've read but I have to talk about two of these books!
It took me ages to finish The Nigh Circus. I'm talking weeks. I just couldn't get into it and felt like it was such a slow read. However, about 75% in, I was hooked and devoured the last bit of the book. It turned out to be one of those books that you weren't thrilled to read but once you finished, you couldn't stop thinking about. I still cannot put my finger on what exactly made this book so wonderful to me. The mystery of the circus? The magic of it all? The characters and their decisions? I'm just not sure. But it was a phenomenal book and I highly recommend it - just remember to push through when you are ready to give up!
Hopeless is another book that really stuck with me. I am a member of an online book club and this was the March book. I'd never heard of the book or the author, Colleen Hoover, before and was excited to try a new author. Hopeless is a YA book which is clearly a genre I read often so I'm surprised I'd never read any of Hoover's work before. Without going into details (it would give away too much of the book), Hopeless is an amazing story filled with plot twists and turns. Hoover is amazing at character development and I absolutely fell in love with Sky and Holder! I enjoyed this book so much that I finished it in 24 hours AND then downloaded Hoover's two other books and finished them 48 hours later! I highly recommend this book! And I am eagerly anticipating the second book Losing Hope that comes out this month!
So there's my March update! Pretty much a fail but documenting, and admitting failure, has me eager to meet these goals in April!