Blessings, Miracles, &Thoughts in Between

Mighty to Save

2013-05-23T06:14:00.000-05:00

Mountains are being moved.

Prayers are being answered.

Will is being SAVED.

WE HAVE A DONOR

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!!

#teamwill Bracelets - Order Now!

2013-05-15T06:35:00.000-05:00

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!!!

The blows keep coming

2013-05-14T16:09:00.001-05:00

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.

Brain Dump!

2013-05-09T12:05:00.003-05:00

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!

Hanging in there...

2013-05-02T07:02:00.000-05:00

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!

Devastated

2013-04-23T12:47:00.000-05:00

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.

Hurt.

Heartbroken.

Terrified.

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.

BMT 101: Transplant Day

2013-04-19T22:27:00.001-05:00

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.

That moment.

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.

One

2013-04-12T06:30:00.000-05:00

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.
Momma

#teamwill bracelet preorder

2013-04-04T06:00:00.000-05:00

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!

2013 Goals: Status Update

2013-04-01T06:15:00.000-05:00

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!

Another fail.

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!

BMT 101: Conditioning

2013-03-29T06:25:00.000-05:00

Two weeks ago I talked all about the process of finding a bone marrow donor. Finding a donor, and knowing that you or your family member has an actual shot at life, is one of the best moments in the entire transplant process. It is such a high to know that someone is willing to give the gift of life.

Unfortunately, that high doesn't last for long as the next steps are some of the hardest on the patient.

So what comes next? Conditioning.

Conditioning is the phase before a bone marrow transplant that prepares the recipient's body for their donor cells.

Basically, conditioning is used to empty the patients "defective" cells so that their body can be filled back up with healthy donor cells.

There are so many different conditioning regimes, all based on the specific diagnosis of the patient. Conditioning typically starts 5-10 days before the actual bone marrow/ stem cell transplant. Recently, there has been a shift to reduced-intensity conditioning regimes. This is easier on the patient as less intense chemotherapy drugs are used. However, our transplant doctors have determined that a myleoablative regime (or intense, high chemo regime) is the best option for CAMT patients such as Kate and Will.

All bone marrow transplant patients receive a "road map" that details the medications they will receive and when it will be given. In the BMT world, days are counted a pre and post transplant. Conditioning obviously occurs pre-BMT and is labeled as day -xx. As of now, Will's roadmap will mimic Kate's which means he will be admitted on day -10 (or 10 days before BMT) and be given medications such as anti seizure drugs to prepare his body to start conditioning chemotherapy on day -9. When we get Will's official road map, I will post it but as of now, he will receive 4 different chemotherapy drugs.

Each of the drugs has specific side effects during the infusion period as well as longer term side effects such as hair loss, skin breakdown, and mucositis. They can also impact major organs such as the kidneys, lungs, liver, and heart. Side effects vary person to person however, in our experience, Campath is by far the worst drug of the mix. Kate had an awful time with Campath and I can honestly say I am dreading Campath infusions more than anything else.

Another aspect of the conditioning period is input verses output. Cytoxan needs to be flushed out of the kidneys within a certain amount of time and the best way to do this is to closely monitor fluid intake and output. That means diaper changes (so diapers can be weight for Is and Os) occur every two hours around the clock in order to aide output if needed.

Obviously there are many more aspects of conditioning; these are just a few of the things I know we will deal with.

The day before transplant (day -1) is typically a day of rest, meaning no chemo is given. Day 0 kicks off the post transplant cocktail of meds as well as the actual receiving of donor cells. We'll talk about all of that next week!

As always, feel free to send me any questions you may have! I struggle to write these posts so that people unfamiliar with the BMT process can follow along - it is so easy for me to get way too technical or detailed as I know way more about the transplant process than I ever hoped I would have to learn!

Surgery...again...

2013-03-27T15:12:00.001-05:00

On our way, waiting to be taken back, asleep before heading to the OR, finally home!

I honestly can't remember if I blogged about the two surgeries Will had earlier this month. I know I mentioned them on the blog FB page, twitter, and instagram but I think I may have forgotten to actually blog about it.

Will had two surgeries on March 5. He was in the OR for about 2 hours and immediately after surgery, we thought all was well. He woke up happy, waving and smiling at everyone in the PACU. Unfortunately, one surgery (his bone marrow biopsy) was not successful, and the other surgery (that we are not openly discussing for privacy reasons) led to some post surgery/ recovery issues.

Thankfully, as of now, Will is finally healing and it looks like surgery #2 will end up ok, despite several setbacks and scares.

However, surgery #1, the bone marrow biopsy, has to be redone. In basic terms, a baby's bones are incredibly soft when born and harden as the get older. This can lead to challenges when obtaining an adequate sample of bone marrow during a biopsy. The marrow is squishy/ sponge like and when a doctor is doing a biopsy on a patient with harder bones, it is very easy to tell when the biopsy probe/ needle reaches the marrow (bone marrow biopsies are done by "feel" not by sight).

Unfortunately, Will's bones were still pretty squishy and it was nearly impossible for the surgeon to know when the bone stopped and the marrow begun. The sample that was taken was predonminately made up of actually bone and not a marrow. We are hoping his bones have hardened up a bit more in the past month and are praying a proper sample taken for biopsy next week!

As of now we do not have an official surgery time. Will has an appointment on the BMT floor at 8:30am for blood counts and a possible platelet transfusion. If he needs platelets, he will receive them before the biopsy. If he doesn't, we will head to the outpatient surgery floor as soon as his counts are back. I'm mentally preparing myself for a long day at the hospital since we won't have an official surgery time until the morning of. I am also preparing for an extremely unhappy baby as Will wont' be able to eat/ drink from midnight until after surgery.

We would appreciate thoughts and prayers as Will deals with another surgery. Hopefully this will be his second to last time in the OR before starting chemo. His next surgery will be his central line placement a few days before admission/ chemo begins.

If you want relatively live updates on Tuesday, you will be able to find them on twitter or the blog FB page!

Treasuring Our City

2013-03-19T06:30:00.000-05:00

For a long time now, I have longed to live somewhere else.

We live in downtown Houston. In the heart of the city, social life, and bars. We live in the best neighborhood for singles and DINKs (double income no kids). When Alex and I bought our home back in 2007, it was perfect. Perfectly located. Perfectly sized. Perfectly laid out for entertaining our friends.

It was not nearly as perfect when sweet Kate came along. However, it was still pretty amazing.

Then Will unexpectedly joined our family and I started longing for different. A bigger backyard. A true guest room. A play room. A neighborhood with family friendly neighbors ~~not white collar drug dealing felons like the one that lived next door to us several years ago~~. A living room that was not covered in primary colored toy vomit.

Some days that picture perfect home was in a suburb of Houston. Other days it was back in Mississippi - closer to dear lifelong friends, family, and our alma mater. But it was always away from the city.

However, a few weeks ago, while walking through Herman Park with my little family, feeding the ducks, ~~kicking the nutria away,~~ flying a Cinderella kite, and watching my child, who has spent more of her life in isolation than out exploring the real world, interact with other children as if she has always been exposed to kids her age, I had an epiphany.

This is an amazing place to raise our children.

Our kids live 10 minutes away from a phenomenal zoo, a world renowned Museum of Natural Science, a breath taking Paleontology Hall, parks, nature centers, cultures. Kate can properly identify animals like Bongos. She thinks the "di-sors" at the Museum of Natural Science are hers. She stops and admires the girls taking their Quinceanera pictures and is amazed by seeing real princesses.

She knows all of these things, not because I am sitting her down and teaching her at home, but because she is immersed in her city. Absorbing all it has to offer. Living and breathing this amazing place we currently call home.

I was born and raised in New Orleans, a city that, to most, leaves much to be desired. But for me? When I think of my city? I think of Saturday morning ferry rides across the Mississippi River with my dad to enjoy beignets at Cafe du Monde. I think of looking up to see the boats float down the river because I lived below sea level. I remember Mardi Gras and know that it is actually extremely family friendly. I think of the Audubon Zoo and the white alligators. Carefree rides on the street cars simply because it was fun. I think of muffalettas from Central Grocery, picking off the olive salad because I was crazy and didn't like it until I was much older, and throwing it to the pigeons in Jackson Square.

Kate and Will are not going to remember the less than perfect layout of their first home - but they will remember how awesome it was to be at the zoo in 10 minutes.

They will not remember just how tiny their backyard was - but they will remember the garden we planted and the thousands of times they were pushed in their swing.

They will not remember the crazies that lived down the street (ok maybe they will remember them but stick with me) - but they will remember the multiple languages overheard at the park, the various cultures they were exposed to, the diversity they were surrounded by.

Simply put, they will not dwell on how imperfect our life in the city was. They will cherish the opportunities and experiences they were given because of their time spent here, exposed to so many amazing things.

So for now, I am going to stop thinking about the grass being greener in the suburbs, and start treasuring what downtown Houston has to offer my kids and our family. This is such an amazing city to be able to claim as home, and I hope and pray my kids truly absorb and remember all of the wonderful things this beautiful city will continue to offer them!

Bloglovin' is where it's at

2013-03-18T06:30:00.000-05:00

I'm sure most of y'all have heard by now that Google Reader is going bye bye come July. If you are anything like me, you pretty much stuck your head in the sand and ignored this fact for quite some time.

I've finally come to terms with the fact that Google Reader is, in fact, going away. I can no longer play dumb and tell myself it is just some dirty rumor.

Over the past few weeks I've seen several people mention Bloglovin'. Bloglovin' in a new blog reading platform that is SO user friendly. The best part, in my opinion, is the great smartphone app. It's way too easy to click through my unread posts at 4am while Will is up refusing to sleep.

I really wish I would have made this switch a while ago!

So, if you are looking for a Google Reader replacement (that is actually way better than Reader ever was), head on over to Bloglovin' and sign up today! Right now Bloglovin' will actually import your Reader into their platform. You literally make an account, press a button, and have all of your blogs neatly organized right in front of your face. Makes things easy peasy!

If you want to keep in touch with us, especially as Will approaches transplant, simply click the badge below and start following The BMT Blog!! I also have a Bloglovin' follow button on my side bar and will have a Bloglovin' social icon up on the right with all of my other social icons very soon!

I was not compensated for this post at all. I simply love what I see over at Bloglovin and wanted to make sure my readers have a way to keep in touch with us come July!

BMT 101: Finding a Donor

2013-03-15T06:25:00.000-05:00

Disclaimer: I am not a medical professional. I am not a trained donor coordinator. I am simply a mom who has gone through the process of searching for a bone marrow donor twice. I am sure each donor center does things a little differently. I am simply documenting the process we went through, at Texas Children's, and with the National Bone Marrow Registry when searching for Kate and Will's donors.

This week is all about finding a donor! While the actual treatment phases are when a transplant patients life is saved, this step, the act of finding a match, is quite possibly the most important step of the entire bone marrow transplant journey.

Without a match, a transplant cannot be done. A life cannot be saved. A family cannot continue as the family unit they know and love.

I'm going to break this process up into four sections - HLA typing, what goes on with the patient while searching for a donor, what goes on with the donor as they are screened as a possible match, and the decision. Obviously I do not have personal experience with donating marrow so any information regarding what happens on the donor's end is what was explained to us as we sat and waited to hear if either of our kids had a match.

Human Leukocyte Antigen typing is what is used to match bone marrow transplant recipients and donors. According to the National Marrow Donor Program (NMDP), "HLA are proteins - or markers - found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not." There are multiple HLA "match points" and the more points a recipient and donor match on, the better. The closer the match, the higher the chance the patients body will accept the donor cells because the body "recognizes" the markers present in the donor cells.

Every individual has HLA markers present in their body. Half of these markers are inherited from your biological mother, the other half inherited from your biological father. Because HLA markers are inherited, there is a 25% chance that a full biological sibling of the patient will be an HLA match to donate marrow. Parents and extended relatives have a small chance of matching patients.

While the NMDP sets a minimum threshold of 8 match points, most donor centers look at HLA matching on a 10 match point level. I am not a scientist and will not even begin to explain these 8 or 10 points. If you are interested in reading a great overview of this, feel free to visit the NMDP page about HLA typing (link).

I'm sure many of you are asking "Why is HLA matching so important"? There are several reasons why a good HLA match is such an integral part of a successful bone marrow transplant. There are three main reasons why a strong HLA match is so important.

A successful transplant means the patients body accepts the donor cells. As I mentioned above, the more match points the patient and donor have, the more likely their body is to think the donor cells belong. The remaining two points, engraftment and GVHD, all relate to a successful transplant but these things happen after the patient receives the donor cells. I will be discussing them in more details in the next few weeks! Today we are just talking about finding a donor!

There are other factors to consider when selecting a donor (viral status - CMV and EBV are a few looked at - age, health, blood type) but these factor are simply "extras". HLA is the most important factor when finding a match.

Now that y'all understand the basis of matching a patient and a donor, we can talk about what happens on each end as a match is made!

As soon as a bone marrow transplant is deemed necessary, the patient is HLA typed. At the same time parents and siblings are typed as well. The typing process can take up to three weeks for various reasons. We learned how long the typing process can take when we were waiting on Kate's typing to come back. I blogged about my frustrations regarding this in June 2011!

As stated above, the chance of a parent matching is extremely slim. However, there is a decent chance siblings will match. If a sibling is identified as a good HLA match, the patient moves to the next phase of the BMT process, prepping for transplant/ conditioning.

However, 70% of transplant patients do not have a familial donor and have to reach out to the national and International marrow donor programs to find their life saving match.

(Now is when I will start relaying how TCH handles the matching process. This may be different at various donor centers.)

As soon as we discovered Alex and I were not matches for either of our children, we started working with a transplant coordinator to find a donor. An initial pass is made against the national and international registries.

Side note: When people join the registry, they are not fully typed. It is extremely expensive to conduct a full HLA typing so several major HLA markers are used to register donors.

A pool of potential donors is identified, and ranked. The top pool of donors (typically no more than 6 at a time) are "activated" as potential donors and contacted for additional testing.

As soon as this happens, the patient, and their family, is left to wait for a donor to be identified. This can take several months.

After a donor joins the NMDP (I will talk all about joining the registry in a few weeks), they are placed in a database for all potential donors. A donor can sit on the registry for 15+ years before being contacted as a potential donor, they may never be contacted, or they could get "the call" a month after joining. There is simply no way of knowing when one might be called as a potential match.

When a donor is identified as a potential donor (as I mentioned above), they will be contacted via phone, email, or letter (proof that it is SO important for donors to keep their contact information up to date). At this time it will be determined if a donor is still eligible, and willing, to donate. If they meet the criteria, potential donors will need to have additional blood work done. This blood work is the detailed HLA typing as well as other viral/ infectious disease blood work.

After a donor goes in for additional testing, it could be 4-6 weeks before they hear anything. This is due to the fact that the patients doctors want all potential donor testing in (remember up to 6 donors can be "activated" for one patient) before selecting a donor. As soon as all testing is back, the patients team of doctors will meet and make the official decision regarding a donor.

If none of the potential donors are acceptable matches, this process will continue with donors on the registry until a pool of potential matches is identified.

As soon as all potential donor lab work is back, the patients team of doctors will round table to discuss all matches. A perfect match is the best case scenario but if no perfect matches are identified, other donors will be considered and possibly selected.

If multiple "10 out of 10" matches are identified, things such as CMV status, age, etc will be considered. For whatever reason, younger donors tend to be more "proven" so a younger donor (20s) will always be preferred over an older donor (40s+).

When we were searching for a donor for Kate, we ended up with 3 perfect HLA matches. This was incredible and allowed Kate's doctors to find a young (24 at the time of donation) CMV negative (Kate is CMV negative) donor. It was much harder to find a match for Will but thankfully we ended up with one perfect donor! Will is CMV positive which made his donor CMV status unimportant. It is best to not expose a CMV negative patient to someone that is CMV positive.

Once a potential donor is named as the official donor, they are contacted and must agree to donate. If they agree, the donor will begin the next round of testing which includes a physical and additional lab work. If everything checks out, the individual is ready to donate marrow or peripheral cells. Y'all will hear all about donating (as of now I have a peripheral cell donor lined up to guest post) in a few weeks!

Next week we will talk about the conditioning phase - or what happens as a patients body is prepped for receiving their life saving cells!

As always, if you have any questions about the process of finding a donor, shot me an email and I will get back to you as quickly as life with two kids allows!

Blog Sale Link-up: Will's Closet

2013-03-13T08:10:00.000-05:00

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I am linking up with Leslie today for the second blog sale link up! I am hoping I can clean out our closets to make room for all of the precious spring/ summer items I have landing on my doorstep on a daily basis! I will be breaking my things up into two posts - Kate's Closet and Will's Closet. I have so many things I just thought this would be easiest!

* All items are listed in size order, smallest to largest

* Unless noted in the item details, items are in excellent used condition meaning no stains, no signs of wear, etc.
* All items come from a smoke free home
* All items have been washed on delicate cycles and hung to dry
*Shipping is NOT included in listed price. Shipping is $2 for the first item purchased and $1 for each additional item

*Email me (lindsey.boggan@gmail.com) the following (w/ blog sale in the subject line):
* Sale item #
* Paypal Email
* Your address if not listed in Paypal

Comments will NOT be accepted as a means of purchase. Only emails with the proper information will be used for sale purposes. All invoices are expected to be paid within 24 hours. If not pain within the specified time frame, the next buyer will be given the chance to purchase the item.

I will do my best to update this post as items sell. I apologize if I am not prompt in updating sold items. Life at home with two kids is pretty demanding!

Blog Sale Link-up: Kate's closet

2013-03-13T08:00:00.000-05:00

* All items are listed in size order, smallest to largest

*Email me (lindsey.boggan@gmail.com) the following (w/ blog sale in the subject line):

* Sale item #
* Paypal Email
* Your address if not listed in Paypal

Comments will NOT be accepted as a means of purchase. Only emails with the proper information will be used for sale purposes. All invoices are expected to be paid within 24 hours. If not pain within the specified time frame, the next buyer will be given the chance to purchase the item.

I will do my best to update this post as items sell. I apologize if I am not prompt in updating sold items. Life at home with two kids is pretty demanding!

Happy shopping, y'all!

Rodan+Fields - Review & Giveaway!!

2013-03-11T06:15:00.000-05:00

I'm sure many of y'all can relate to the insanity that is the postpartum body. Hair falling out. Baby bangs growing in. Things sagging. Things shifting. Break outs. Oily skin one day. Dry skin the next.

Having children is such an amazing blessing. It truly is a miracle.

But y'all. My sweet boy I birthed nearly 11 months ago (hold me - how is he almost one) has done a number on my body. Specifically my skin.

I've always have problem free skin. Never dealt with acne, breakouts, etc. And I managed to have nearly perfect skin with little to no work.
Yep. I was that girl that did not so much as wash her makeup off at night and managed to still have wonderful skin.

Not anymore! Whether it be two babies in less than two years, getting closer to the big 3-0, or all of my poor skin care routines in the past, I'll never know. But I do know one thing. My skin is not what it used to be. I am battling breakouts, a ridiculously oily t-zone, and dry patches on my cheeks. It is not pretty.

A few months ago I started to hear people talking about Rodan+Fields. Around that same time, one of my precious blog readers Lindsay emailed me asking if I would be interested in testing out a few Rodan+Fields products as well as host a giveaway for all of my readers.Yes Ma'am! Sign me up! Lindsay's email was the push I needed to start caring about my skin! After a few emails with Lindsay, I decided to take some time to learn about this new company and skin care line.

Lindsay and I have so much in common. Not only do we share the same name, but we are both from the amazing city of New Orleans, currently call Texas home, are the proud mommas of strong willed toddlers, and love smocked clothing! Rodan+Fields is a BOOMING direct sales business and Lindsay has capitalized on this amazing opportunity! Within 6 months of joining the Roden+Fields family, Lindsay will completely replaced her full time teaching salary! Working from home! What an amazing blessing this company can be!

Rodan+Fields is a skincare line from the same Doctors that created Proactiv. Dr. Katy Rodan and Dr. Kathy Fields realized they wanted to help people have amazing skin no matter what age. These products were the top selling clinical skin care line in Nordstrom until Rodan+Fields made the change to a direct sales business model. All products come with a 60 day money back guarantee! You know something is good when they will give you your money back if you are not satisfied!

There are so many different skin care lines in the Rodan+Fields family - Soothe for sensitive skin, Unblemish for adult ache, Reverse for sun damage/ dark spots, and Redefine for reducing signs of aging. After discussing my skin issues with Lindsay, she recommended I use the Unblemish regime to help clear up my problem skin.

I've been using Rodan+Fields Unblemish for over a month now and I cannot even being to explain how awesome my skin looks and feels! My breakouts are completely under control. My skin looks healthy. But most importantly? I finally feel confident in the way I look without makeup! I cannot even count how many times within the past few weeks I have confidently left the house with just mascara and lip gloss!

I have finally realized the benefit of taking care of my skin and I am so thankful that Lindsay, and her new business, pushed me to this realization!

Lindsay has generously decided to give one of my readers a complete Rodan+Fields skin care regime! This is worth more than $100 and I am so excited to have the opportunity to share this amazing product and company with y'all!

You can enter this giveaway below, via Rafflecopter!

UPDATE: Just heard from Lindsay and she has added SEVERAL awesome offers for my readers via this giveaway!

From Lindsay: The other great news is I am covering the cost of any new Preferred Customer ($20 value) that signs on via this blog- 10% savings and free shipping. Not bad at all. Oh and if you email me- lindsayrouse@gmail.com to find out more about the business, you get a complimentary mini-facial!

a Rafflecopter giveaway

BMT 101: All About CAMT

2013-03-08T06:21:00.000-06:00

I have been totally MIA. Will had two surgeries Tuesday (I'll blog about it at some point but thankfully he is finally doing better and starting to recover). But I am pushing through my exhaustion because I cannot stand the thought of flaking out on the first real post of this new series!

Today is all about CAMT or Congenital Amegakaryocytic Thrombocytopenia.

When put together it basically means a condition a person is born with (due to a genetic issue) that impacts the body's ability to make megakaryocytes which causes a lack of platelets. Megakaryocytes are the large cell making cells found in the bone marrow that make platelets. The lack of megakaryocytes leads to a lack of platelets that eventually impacts all blood lines (white, red, platelets).

CAMT is extremely rare - I'm talking less than 100 diagnosed cases in the entire world. That means that my kids make up more than 2% of the entire CAMT population.

Let's take a trip back to high school biology. For me, that means traveling back to Mrs. Freeland's Gifted Biology class at Norcross High School. During our genetics lesson, we learned all about the Punnett Square.

During the "application" portion of genetics 101, we played a game where you and your partner flip a coin and the results help you create the characteristics of your "child". Heads = dominate. Tails = recessive. Joseph Raez and I hit the recessive jackpot and ended up with a "kid" that had nearly every recessive trait (unibrow, connected earlobes, etc)!

I have no clue how I remember all of this. But I do.

And it all has a point. I promise.

CAMT is a recessive genetics disorder which means Alex and I also hit the double tails recessive "jackpot" when it came to our kids bone marrow. We are both carriers (Aa) of this disorder and both Kate and Will received our "little a" trait making them both positive for CAMT. Given the fact that it took nearly a year to diagnose Kate with CAMT, we had no clue we were carriers of such a rare, and fatal, condition.

CAMT is presented as a mutation on the c-mpl gene which also impacts the TPO receptor. This is gibberish to most and is still pretty much gibberish to me. The one thing I do understand about the mutations associated with CAMT is that there are many different mutations on the c-mpl gene function which means CAMT presents itself as a spectrum disorder. Some mutations may not be fatal, and may not require a bone marrow transplant for survival.

Kate and Will's mutations are fatal and require a transplant. Currently, Kate and Will are the only documented cases of their specific mutations in the entire world.

Our kids have two mutations on the c-mpl gene which cause two issues. The scientific details still confuse me but I kind of understand the layman's explanation of their issues!

First, Kate and Will have a lack of platelet production due to a limited number of megakaryocytes (remember these are the big cells that make platelets). The level of megakaryocytes they are born with is all their body will ever produce which leads to low platelet count from an early age.

Second, our kids also have an issue with their TPO receptor. Basically, your body uses TPO as a signal to ramp up platelet/ megakaryocyte production. Kate and Will's body's push out TPO to tell their body "hey I need some platelets, make some more". Unfortunately, their bone marrow is "deaf" to this signal, meaning their TPO receptor is non-existent. No matter how strong the call for more platelets is, their bodies will never hear it. And never make more.

Because of these two mutations, a bone marrow transplant is the only thing that can save my babies. Next week I'll talk all about finding a life saving donor and how a bone marrow transplant with life saving cells allows my children to LIVE!

If you have any questions about CAMT, or anything in this post, leave your question in the comments section and I will address it next week!

New Series: BMT 101

2013-03-01T06:00:00.000-06:00

Many of my wonderful readers followed Kate's journey through the bone marrow transplant process back in 2011. However, I know I have tons of new readers who weren't around when Kate was fighting for her life.

I also realize that I know way more about the transplant process than most people and sometimes I assume everyone else knows what I mean when I say something like conditioning starts today, ANC is only 100, platelets are 7. In reality, only a small subset of the population would have any clue what that gibberish means!

As Will starts treatment, I know my updates will be short and to the point, which means they may not always make sense to anyone outside of the BMT community.

Enter my new series - BMT 101!

BMT 101 is going to be an 8 part series that highlights my childrens' diagnosis and the bone marrow transplant process from start to finish, written in a way that anyone can understand. My hope is that I can not only help my readers/ prayer warriors better understand the journey, but that I can help spread awareness and understanding about a very complex process. I also hope to feature fellow BMT survivors and share their inspirational stories! I am certain many people don't realize the plethora of conditions bone marrow transplant can cure!

Here's what is on the BMT 101 agenda for the next eight weeks:

Here is where I need your help! I am looking for a donor that anonymously donated bone marrow or peripheral stem cells that is willing to share their story! You can remain anonymous or you can openly identify yourself in your guest post! I do not have experience with the donation process but this is the most important aspect of saving lives! A familial donor would also be wonderful to feature but, I'd really love to have someone from the Be the Match registry discuss the process of being randomly called, accepting, donating, and the role a stranger can play in saving a life.

People need to hear what it is like to be a donor. What it is like to put your life on hold for a stranger. What it is like to save a life.

If you, or someone you know, is willing to contribute, please send me an email (lindsey.boggan@gmail.com) and we can talk details!

Also, if any of you have questions that you want answered as I work my way through this series, email them to me! I will hold a Q&A for each post but would love to incorporate as many answers as I can in the initial posts!

I desperately wish I did not have to write posts about bone marrow transplants. I long to live a normal life free of fatal diseases, chemotherapy, and watching my babies suffer.

But, this is my life. This is my journey. This is the Boggan Family's cross to bare.

And we will boldly, and confidently, trust in the Lord as we spread awareness for the process that saved Kate's life and will save Will's life as well.

2013 Goals: Status Update

2013-02-28T11:45:00.001-06:00

How is it already the last day of February? How is Will 1.5 months away from turning ONE? Am I the only one that feels like this year is absolutely flying by?

Since it's the last day of February, it is time for yet another accountability post to check on the status of my 2013 Goals!

Um, well. I didn't do so good. We've all been sick (including me - stomach virus and kidney infection all within a week). March has got to be better! I feel so much better when I write and document and get my feelings out! I also know that out family members enjoy frequent updates and pictures of the kids!

I may have failed for February but I've still got time to make it up this year!

I've done ok with packing Alex's lunches, could be better but also could be worse!

I actually left the house by myself several times this month. Yes one of those times may have been for a doctor's appointment when I felt like I was dying (thanks kidney infection) but alone is alone. Right mommas? Beggars can't be choosers!

Kate and Will also both had one on one time with each parent this month! Again, my time with Will may have been spent at Texas Children's while Alex and Kate were on a fun daddy daughter date. However, when I have just one child with me at appointments I can do things like cuddle Will while we wait verses keeping him in the stroller as I attempt to entertain his big sister!

One thing I have really focused on this month is arts and craft time with Kate. We typically do this during Will's morning nap and she absolutely loves it! Kate is so creative and loves making things! She gets so excited when Alex gets home and she can show him her craft! I am not a creative person by nature so this has taken some planning on my part but it is totally worth it!

So I'd say I rocked this category this month!

Another category I did very well in this month! I pulled my camera out about 12 times this month and took tons of pictures that I just adore! Including some precious "I escaped mid diaper change and am going to sit on the floor naked and play with my toys" pictures of Will! There is just something undeniably cute about a chubby baby booty and baby thigh rolls! I probably won't post these on the blog (thanks for ruining things creepers) but trust me, they are precious!

I also had an impromptu photo shoot with Kate and her best BMT buddy Colt! Natalie and I took the kids to Herman Park to feed the ducks and I captured some precious images of these two miracles! I mean how stinkin cute is this?!?!

As far as Photoshop goes I have taken some time to learn more of the design aspect and have created several printables! As I mentioned in my last post I am selling the Family name/ State printables and I have a scripture printable that I will be sharing (for free!) soon.

10.5 books completed this month for a total of 18 books read so far this year.

This category proves my level of book nerd! I am confident that I will hit my goal of 50 books by May or June. One thing I've learned this month? I tend to find a genre/ author and read it to death then move on (hence me reading every.single Harlequin Kiss book that was published in February). I also like series. I feel like I am in a book rut and haven't read anything that I just LOVED since finishing The Caster Chronicles earlier this month. Hopefully I'll stumble across some wonderful books soon!

I am apart of an on-line based book group and I am really enjoying it. I loved being forced outside of my reading norm and love discussing what I read with others! Best part? I can participate while sitting on my couch in jammies sans make-up!

The biggest problem with my speed reader status? I can easily drop $150 on books in a month which is INSANE. There is too much instant gratification with the Kindle and Amazon and I quickly fall victim to the "one click purchase" trap. Because of this I am challenging myself to "shop my Kindle" during the month of March. I often buy books that are "daily deals" simply because they sound kind of interesting and are cheap. Then I forget about them and never read them. I've probably got 25-30 books on my Kindle I have never read. So I am challenging myself to read what I've already purchased during the month of March!

Here's what I've read this month (clearly I went with an easy to read romance theme this month):

Anyone else keeping track of their 2013 goals? I'd love to follow your progress and send encouragement your way!

The Tale of the Vulgar Printable

2013-02-25T06:42:00.000-06:00

This story is too funny to keep to myself! I hope I can give you a Monday morning laugh as you chug your coffee and attempt to motivate yourself to dive into yet another week!

We had a super exciting Friday night at the Boggan house. And by exciting I mean I drank a glass of wine while attempting to create a year round printable for our gallery wall. I have several seasonal printables I love, and use, but I wanted something for those "in between" times.

After I finished one, I called Alex over to look at it and this was our conversation:

Me: Hey babe - I just made this for our wall. Do you like it? I'm not sure if I do. I think I want something more formal with cursive.
Alex: Um, Linds. Why do you need curse words in a printable? What's it going to say? The bitchin Boggans? That's not appropriate to hang on our wall.
Me: {dying laughing} Why would I put the word bitchin on our wall?
Alex: You just said you didn't like this one you made and that you wanted cursing in it.
Me: {utilizing every ounce of my post two baby ~~lack of~~ bladder control} I said CURSIVE. As in script. Fancy. Formal.
Alex: Oh. Yeah that makes more sense.

We have laughed about this all weekend. We've even come up with vulgar printables for all of our friends!

Obviously, I didn't frame the naughty version to display in our house but every single time I look at that wall, I start laughing again! I'm sure this will be a joke for years to come!

I posted a picture of the real version on IG and twitter and instantly had people asking if I was selling these and if they could order one. After thinking about it I decide I've got nothing to lose and am officially taking orders! I've already sold, and sent, 10 family state printables! In one day! Wow!

Here is one of my favorites I've done (names/ locations changed for privacy):

Do you want one? Each custom family state printable digital file is $5 and it is super easy to order! Here's what you need to do:

Email me the following (lindsey.boggan@gmail.com - please include State Printable in the subject line):

*Family name

*Est year

*City, State

*Color for wording/ state

*Color for location star

*PayPal email

As soon as I receive your payment, I'll start on your printable! As soon as it is complete, I will email you a digital file of your 8x10 printable! You will have your file within 4 days (most likely sooner) of paying!

See? Easy peasy!

And, if you'd like the vulgar version, just let me know! Ha!

Stella & Dot + Be The Match

2013-02-18T06:19:00.000-06:00

A few weeks ago one of my sweet friends from high school emailed me about the possibility of hosting a Stella & Dot trunk show. Brooke is a Stella & Dot stylist and has decided to do several "non-profit" shows this year where she generously gives all of her proceeds to causes that she cares about.

Even though I haven't seen Brooke in years, thanks to Facebook and this blog, we've been able to keep in touch and she has kept up to date with the kids' health issues. Kate's story is the reason many of our friends and family have heard about, and invested themselves into Be the Match. Brooke is one of those friends that was touched by Kate and Will's story and wants to give back to the organization that is saving my kids' lives!

I am constantly blown away by the support we receive and generous people like Brooke, who are so willing to help save lives, mean the world to Alex and I! The fact that our children have inspired people to join, support, and spread awareness for Be The Match, and the national bone marrow donor registry brings tears to my eyes!

Stella & Dot is a boutique style accessories company sold at in-home and online trunk shows. The jewelry has been seen in Lucky Magazine, InStyle and on countless celebrities. Designed in New York and San Francisco, the pieces are so irresistible and affordable, you’ll be certain to find a little something special.

I've spent ~~several hours~~ some time browsing Brooke's site and have so many things I love!

Many people are unaware of this but, every new donor that joins the national registry costs Be the Match approximately $60-70 dollars. This amount covers the initial testing that is conducted so potential donors can be typed and officially added to the registry database. Be the Match counts on donations to cover this cost so that individuals can join the registry, and help save lives, despite their financial situation. Monetary donations allow Be the Match to continue increasing the size of the Nation Registry which, in return, helps save the lives of people like Kate and Will.

I encourage all of you to head over to Brooke's site and shop this party! You can add some awesome pieces to your jewelry collect all while supporting such an amazing cause!

Happy shopping!

Happy Valentine's Day!

2013-02-14T15:10:00.001-06:00

Things I have yet to master: taking pictures of my children together. This is the best they would give me!

Be Still

2013-02-13T06:04:00.000-06:00

Yesterday morning Will had a nuclear cystogram to check on the state of his kidney reflux. His urologist wanted this test done before scheduling his kidney surgery to repair the issue. We won't have results until we meet with his doctor tomorrow.

I'm not sure why but I've been so anxious about this test. I'm guessing a big reason is because this feels like the official "kick off" to Will's treatment. This surgery will be the first of many medicals tests, procedures, and surgeries that will lead up to Will's admission for his bone marrow transplant.

I knew this time would come. But it is just hard to give up the "normal" we've had over the past 10 months and jump back on this crazy roller coaster.

While I was driving to Texas Children's ~~and eating my emotions in the form of an egg and cheese biscuit~~ I was a huge ball of nerves. I could feel my anxiety growing the closer we got to the hospital.

I normally have KSBJ on my radio and yesterday morning was no different. As I was pulling into the parking garage under the Clinical Care Center, Chris Tomlin's I Lift My Hands started to play. The first line of that song?

Be still, there is a healer.

That line, and the entire song, hit me like a ton of bricks.

I literally felt like God was thumping me on the head and saying "LINDSEY! Stop busying yourself to avoid hard issues. Stop filling your heart and mind with anxiety. BE STILL. COME TO ME. There is a healer right here. I am HERE. I have yet to fail you. BE STILL. I am THE HEALER. I was, and still am, Kate's healer. I am here to be Will's healer as well. BE STILL."

It is so easy for me to let my anxiety get the best of me. It is so easy for me to completely consume myself with the battles my children have to fight. It is so easy to forget what I know I need to cling to.

I so badly needed this reminder. I needed to give over my anxiety.

I need to calm and center myself so I can be a source of strength and comfort for Will right now.

So that's my plan. Be still. Immerse myself in the Word. And prepare my heart, mind, and soul for what our family is about to face.