May 23, 2013

Mighty to Save

Mountains are being moved.
Prayers are being answered.
Will is being SAVED.

Everything is happening so fast. Things started to fall into place Monday and while we still don't have the official, official word (should get that the 28th) I just cannot keep this HUGE news in any longer.

You've all supported us when we were at our lowest of lows last week and deserve to REJOICE with us as we celebrate this amazing MIRACLE.

Did I mention things are moving fast?

As in Will will be admitted within 1.5 weeks to start chemo. I am freaking out about having everything ready but trusting that this is the perfect plan, and perfect time.

I was totally blown away by the call on Monday and am still in a bit of shock that this is happening. And happening NOW. After our appointment last week I was certain we would be facing a LONG wait for a new donor (if we ever found one at all).

Thank you for lifting Will up. For spreading the word. For supporting our family.

I will share the nitty gritty when I hear all about it myself! Alex and I are still pretty much in the dark about the details but I just had to share this blessing!!

May 15, 2013

#teamwill Bracelets - Order Now!

We are officially taking orders for #teamwill bracelets! The pre-order event was amazing - we sold over 165 bracelets! I am so excited to see what the total donation to Be the Match will amount to! Thank you to each and every one of you that continues to support Will and his journey!

Please, please, please share this post. Share Will's story. Get the word out about the need for bone marrow donors. Will's match could be out there but unaware of the registry. We have got to spread the word and save lives!!!

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.

May 9, 2013

Brain Dump!

My brain is a big pile of mush these days. I can't even follow a list at the grocery and make it home with everything I need so there is no chance I can compose anything other than a brain dump blog post!

*No word on a new donor yet. I am getting extremely frustrated as we were told we should have heard something by Monday. Obviously that didn't happen. I'm trying to remain stress free about it all but, anyone who knows me, know I don't do stress free very well.

*We spent last weekend at the beach with my in-laws and it was wonderful! But oh my goodness a trip with a 1 year old and a 2.5 year old is exhausting!

*Upon our return home, we were greeting with the oh so lovely stomach flu. Thankfully Will and I have been the only victims thus far. I'm praying it stays that way. Alex has a man cold (and let's be honest, the man cold is just about the most annoying thing in the world) and I highly doubt I would be able to deal with him if he had a man cold and the stomach flu.

*We finally have contact with Kate's donor!!!!!!!!!!!!!!!!! (Yes excessive exclamation marks are highly necessary.) It has been wonderful connecting with Lance and sharing details about Kate's journey! We've been talking to Kate about Lance and his family and while I don't think she understands everything just yet, she is extremely fond of having new people in her life! Just the other day she saw a picture of herself on my phone and said "Oh I so cute. Text dat to Ms Lacy!" Lacy is Lance's girlfriend and I love that I can keep them updated on Kate and send pictures of her their way!

*I don't think I've posted about it but Will's birthday party was a blast! It was very low key (only our closest friends here in Houston) but it was wonderful to have everyone at the house and enjoy fellowship with wonderful friends! Hopefully I will get around to uploading and editing pictures soon!

*I need to write a post about all of the hysterical things Kate says these days. She seriously keeps me laughing all day long.

*All of the #teamwill pre-order bracelets have shipped! Y'all should have them by now! I absolutely love seeing people post pictures of their bracelets on InstaGram and Twitter! For those of you that missed the pre-order event, I will be posting about our next round of orders Monday!

May 2, 2013

Hanging in there...

Well, I think the best I can say is that we are hanging in there. I've had bad days and not so bad days since our news about no longer having a donor to save Will's life. I've had good moments within those bad days and did have a wonderful time celebrating Will's first birthday (his party was this past Saturday).

But overall? I've been very anxious. Very depressed. Very confused. Very sad.

We do have a lead with an International donor and should know more about that on Monday. We are hoping and praying that this is THE match for will. That someone that will actually follow through with their commitment and be Will's donor.

I've been extremely busy over the past week. Will has officially started his pre-transplant testing which has kept us at Texas Children's two days a week. I am so thankful that one of Kate's former nurses, Holly, has been able to watch her while I take Will to all of his tests. Kate adores Holly (or misser Holly as she calls her - apparently everyone is Mr. these days) and I know she is in good hands while I tend to Will's medical needs.

Will is nearly done will all of his pre-transplant testing. We are keeping our testing schedule so Will is ready and waiting when a donor is finally identified.

So far he has had a sedated echo/ EKG, sedated audiogram, and a sedated infant PFT (pulmonary function test). All of his tests have gone well so far! I am definitely an experienced parent when it comes to tests that involve oral sedation. The sedation is relatively light and patients need to be sleepy when the medicine is administered. I've officially determined the amount of time Will needs to be awake prior to receiving the sedation in order for him to fall asleep within 5-10 minutes! This has led to 4:30am wake ups in order for Will to be sleepy for a 7:45am appointment, but it is all worth it!

I wish I had this knowledge when Kate went through her pre-BMT testing as her first sedation experience was a disaster! The hardest part of the sedated tests is that Will has to be NPO in order to be sedated. Will loves food which makes withholding so hard.

Out of all of these tests, the infant PFT is by far the worst (for me). Will has been totally out for all of these tests but the PFT is so traumatizing for the parents. Will was attached to all of these devices, a mask was sealed to his face, and he was trapped inside of a box while air was forced into his lungs to test his lung function. Every time a burst of air was forced in, his body would convulse. It is awful. By far the worst test I have to witness during this process. I am so glad we are done with it.

Today we head back to Texas Children's for a GFR (kidney test), lung x-ray, bone age test, as well as a clinic visit. It is going to be a LONG day but I am so thankful none of these tests are sedated which means Will can eat and drink as much as he wants all day long!

As of now we are proceeding forward with everything related to transplant. Our new goal is a June 2 admission date which would put Will starting chemo on June 3. Obviously we need a donor before we can actually start chemo but we are holding out hope that this International donor is THE one which would allow us to proceed as planned.

I am so overwhelmed by the support we received after hearing the news about Will's donor backing out. Your support and prayers are the only reason why we are still functioning today!

Thank you for supporting my precious son as he fights for his life. Thank you for lifting our entire family up in prayer as we face this journey. THANK YOU! Your support keeps me grounded. Keeps me sane. Keeps me pressing forward for sweet Will!

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