May 14, 2013

The blows keep coming

Will had an appointment today and it was not good.

Medically, he is relatively stable given his genetic condition which is a HUGE blessing. He is much healthier than Kate was at his age and his counts are holding on their own which is nothing short of a miracle.

However, we are facing some extremely hard news related to finding a donor.

I blogged about Will's original donor backing out and since then we have had one lead on a potential International donor. Unfortunately that donor has not responded to any form of communication. We will continue to pursue the donor (via the NMDP) but, as each day passes, he is looking less and less like a viable candidate.

Will's doctors have removed him from the transplant schedule which means we currently have no admit date, no chemo start date, and no transplant date. Nothing can be started until we have a donor.

The doctors and coordinators are circling back with the registry to see if there are any other possibilities but, given the fact that the registry is checked daily, the chance of someone popping up is very slim.

So where does that leave us?

We have four options - all of which require waiting - which is something I am NOT good at.

1) We wait to hear from the International donor, he agrees to donate, and we move forward with the transplant process (best case scenario).

2) We wait for Will's body to fail him. When then happens, we would immediately proceed forward with option 4 and pray we can make it to transplant in time.

3) We wait for someone that matches Will to join the registry before Will's body fails him.

4) We wait until Will is closer to two and move forward with a risky type of bone marrow transplant called a haplo transplant. A haplo transplant is when a non-matching parent (it would be Alex as I cannot donate due to a blood condition I have) donates marrow to their child. A parent is used since they make up 50% of the recipients genetic makeup. This option is not nearly as successful (success rates are cut by at least 50%) and involves total body irradiation (TBI) as well as intensive chemotherapy during the condition phase of transplant. Immunosuppression and post transplant medication/ treatment is also much different/ harder as the risk of graft verses host disease is very high since the donor is not a match. TBI is not recommended for children under the age of two which is why we will wait as long as possible before exposing Will to radiation.

This has been a hard blow to take. We had everything perfectly planned. We had a donor. We had care lined up for Kate. I was terrified but at peace regarding Will's transplant.

I knew there would be challenges with Will's transplant. But I never in a million years thought finding a donor would be one of those challenges. I never, ever thought I would hear things like "experimental, risky transplant" or be searching for haplo centers of excellence while seriously considering transplant somewhere other than here in Houston.

My mind is filled with morbid thoughts about how we approach this next year of waiting. Do we drop everything and live life to the absolute fullest? Take Will back to Disney World? Let him experience the beautiful beaches of Hawaii? Cram every possible family experience into one year since we may only have a 30-40% chance of Will making it to his third birthday?

Or do we just live our normal, every day life? Enjoy the mundane?

I hate that I even have to think about things like this.

I hate that this is the hand Will has been dealt.

I hate that the blows just keep on coming.

30 comments:

Barbie said...

Oh hon, I am so so sorry to be reading this. I cannot imagine the pain and anxiety you and Alex must feel as you have to weigh these options and attempt to be at peace in the waiting. I am praying that a new donor pops up or that this international one will make contact somehow, some way. God has a plan that just doesn't make sense to anyone right now, and let's be honest, that sucks! You want to know all the pieces and how they fit together but right now it is just day to day. Praying for strength and wisdom as you face big decisions as a family, peace and comfort as you go through your daily routine, and a new sense of the precious as you experience all of Will's milestones along with Kate's, that you can savor each happy moment and gloss over the rest. My heart hurts for you, but I'm praying as it is the most powerful thing I can do.

Katie @ Loves of Life said...

I don't have words to say that will help, but I will pray for a miracle.

Meagan said...

Sharing this on Facebook and praying for a donor.

Kim H. said...

Praying for a clear message from HIM on what the best plans are for your family. I'm so sorry that you even have to consider such options, but I'm praying that we will all see the beauty in HIS plan for your family.

Jessica said...

So sorry for your news! I joined the registry back in December to help a little girl (that lost her battle to AML to soon)and it's because of families like hers and yours that i stay on it. I pray that God makes a straight path for you all!

-Jessica

Lesley said...

Oh, Lindsey. My heart hurts so much for your family. I'm continuing to pray for a miracle for Sweet Will. I can not even imagine what y'all are going through. I know that Will couldn't have better advocates than you and Alex.

Trisha said...

Nothing I say will make any of this better, but know that you guys are always on my mind and in my prayers. My heart is breaking for you....

Lindsey @ Let the Light Shine said...

I am on the Be the Match registry... how do they make a match? What is the criteria?

So sorry to hear this :( Praying for your family.

Jennifer said...

My husband and I signed up on be the match today. I hope a donor is found soon. Praying you find and donor and also praying you will be able to look back on all of this one day and somehow be able to see it as a blessing in disguise, because you will have found the exact donor God intended for Will.

In This Wonderful Life said...

I'm so sorry, Lindsey. My heart aches for you and I can't imagine your heart. Just know you have so many people holding you in love and prayers!

I'm going to get us on the registry!

MissPinkKate said...

So sorry to hear this. Thinking of you and your family.

Rachel said...

Like a few others said, there are no words. Praying so hard for you all.

Holly said...

PRAYING super hard for a miracle for your son!

Angie said...

I am on my knees for Will, and your family, Lindsey. My husband and I will be joining the registry. I cannot fathom your thoughts and biggest fears. Know you have someone praying and here if there is anything we can do.

Jenna said...

I'm so sorry. We will continue to pray pray pray for that sweet boy of yours.

Jen Watts said...

My heart is breaking for you girl. Praying always.

Jennifer said...

We are continuing to pray for Will, as well as your sweet family. I'm so sorry about today's appointment, Lindsey. Praying for continued strength, comfort and grace for you on this very difficult journey.

sarah @ life {sweet} life said...

Oh Lindsey, my heart is breaking for you. I am so, so incredibly sorry for all you're going through. No words can express how much I hate this for you. I am praying and believing for a miracle. I mailed my kit last week and prayed over it as well as Will's future match. Praying for you always!!

Dana Ganaden said...

My heart goes out to you. I lost my brother because there was no donor. I will be pray for a donor.

Dana Ganaden said...

Praying your prayers are answered! My heart goes out to you. I lost my brother 7mts. ago because there was no match.

Words Like Swords said...

I don't know if I have any words that could possibly help, but I will pray for you and your family for healing. I hope the donor responds and things get better for you and sweet Will.

Erin said...

Praying for your family and holding strong that Will's donor is out there. So many prayers for you friend!

Kellymn said...

I've never commented before but have followed your story. I signed up last night to be a donor, I pray I am a match for your sweet Will. I have been encouraging everyone I'm in contact with to sign up to donate.
Many prayers heading to you from Minnesota.

Kellymn said...

I've been following your journey and am praying for Will. I signed up to donate and pray I am a match. I will encourage everyone I know to sign up as well.
Prayers from MN

Kristin said...

Oh sweetie, praying praying praying.

littlebug1107 said...

I have been following your blog for a long time.. since Kate was going through the process of finding a donor. I can't even imagine the heartbreak you are dealing with right now.. This post has inspired me to register as a donor. I hope that someday I am able to help someone like little Will!!

Elizabeth Towns said...

I’ve just learned of your family’s plight and Will’s fight. Of course I am praying for you, for strength and comfort. I am praying that God sends the best possible answer to your prayers, and for Will’s complete healing. I am asking for comfort for your soul, and for strength in weariness. I am joining in with your prayer warriors, touching and agreeing that God will hear and answer your prayers, and all of these things I will be praying in Jesus name. Ame.

Rita Arens said...

My husband and I are both on the registry. My name is Rita Arens and his name is Greg Arens. Check to see if we match?

Cnoreen said...

praying someone comes through on the registry

Cnoreen said...

Praying a donor comes through soon....

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