August 28, 2013

Minnesota, doncha know?

I've got some BIG news!!

The Boggans (well 3/4 of us) are headed to Minnesota in October!

Why is this such big news?

Well, let me explain...

See this girl right here?


She and her amazing donor, Lance, have been selected to meet, for the first time ever, on stage at the 2013 National Marrow Donation Program (NMDP) Council Meeting!

Every year the NMDS (also known as Be the Match) hosts a conference "to collectively address the challenges of unrelated marrow and cord blood transplants for patients in need, and provide an event for Network partners to gather a share ideas". (source) Each year the registry sorts through hundreds of donor/ recipient applications and selects one donor/ recipient pair to meet at this convention.

Earlier this year, our donor coordinator contacted me and let me know she wanted to nominate Kate and Lance to meet at convention. Life was crazy, and I was so slow at actually finalizing Kate's application but I am so glad that I got everything to Brandy, our coordinator! When I say life was crazy, I mean I finished gathering pictures, blog links, information, etc for Kate's application the day before Will's transplant!

I haven't really thought much about our application since it was submitted several months ago and, again, life has been a bit busy! My mind has been pretty occupied with Will's recovery.

BUT I knew something was up when I had 5 missed calls from the coordinators office on Friday!

Kate and Lancer were selected as the 2013 donor/ recipient pair and will be meeting in Minneapolis (where Be the Match is headquartered) in October!

We are so excited and humbled that Kate's story, and Lance's selfless gift of donation will help spread bone marrow donation awareness! The fact that my amazing three year old daughter, and her life long struggle, can be used to further help others in need baffles me! I am blown away by the support Kate continues to receive and I know her story will keep inspiring others to join the registry! I am also thankful that Lance will be publicly acknowledged as well. Yes Kate's story is touching but we would not be able to share her journey, and successful transplant, if it weren't for Lance! We owe Kate's life to him and Alex and I are determined to keep praising the selfless individuals that donate marrow and save lives!

Two years ago I sat at my computer, on the bone marrow transplant floor of Texas Children's and wrote a letter to an anonymous man somewhere in the US. In that letter, I said, "You are giving us the most amazing gift anyone could give. I am forever thankful for your willingness to save Kate and I pray that I will be able to hug you and thank you in person one day."

My prayers have been answered.

Kate is healthy.

Kate is healed.

We get to thank Lance in person.

Praise be to God  for he is GOOD!

And Lance, you better get ready! This Southern momma is about to hug the mess out of your neck come October 19!  I'll probably ugly cry too! And snot on your shoulder. Apologies in advance!

August 19, 2013

THREE!!!

My sweet Kate,

How has it been THREE years since we laid eyes on you? How is it even possible that my itty bitty baby girl is now a little lady full of spunk, compassion, and love?

At times your birthday feels like yesterday. But today, as I reflect on everything we've been through, everything you've overcome in the past three years, it feels like you were welcomed into this world ages ago.

My sweet girl you have been through so much. More than anyone should deal with in a life time. Yet you have made it to the other side with grace.

You are the most compassionate three year old I have ever encountered. Everyone tells me you will never remember the struggles you have faced but as I watch you encourage and love your brother through the same journey you walked two years ago, I feel like you do recall your struggles. You are the first one to give bubba a kiss and offer encouraging words. You praise him when he is brave and love him when he is hurting. Simply put, you are the best big sister anyone could ask for.

You light up any room you enter. Whether it is our living room on a random Tuesday night, or the BMT clinic, you make people laugh, spread joy, and always offer a smile.

I could claim that my parenting has made you into such a wonderful little person but that would be a lie. I've made so many mistakes over the past three years. I have been far from a perfect parent. YOU are the reason you are such an amazing girl! The Lord has blessed you with a spirit like non other and you continue to bring joy to anyone you encounter!

This past year has been so monumental! You've learned to vocalize your emotions, you've settled into your role as big sister, you've transformed from a toddler to a little girl! All over the past 12 months!

You've also proven to be extremely flexible. I hate that this year has also brought struggle and separation as we deal with Will's medical issues. I hate that I have spent so much time away from you. But you, my sweet girl, have done wonderfully with all of the change! You have seldom complained about the attention your brother requires and have jumped right in to help me manage all of his medical issues! You are the biggest help when it comes to hooking bubba up to all of his at home IVs, flushing his lines, and giving his medicine. When you aren't helping me, you are encouraging your brother, telling him everything will be ok, offering love and support.


Simply put, you are one amazing little girl!

You are my side kick. My built in bestie. My go to girl. I simply cannot wait to see how you grow and thrive over the next year!

Happy third birthday my sweet Kate! Always remember that you are loved. That daddy and I will always support you. And that the Lord will continue to bless you!

Now let's go dig into some cupcakes and celebrate!

Love forever and always,
Momma

August 10, 2013

Surgery Today & Monday



After a week of back and forth, many line repairs, many uses of a declotting agent, and many moments of utter frustration at the state of Will's central line, the decision has finally been made to pull his lines and start new. I won't lie, my level of annoyance and frustration regarding how long it took to get all of Will's medical team on board with a line repair was extremely high. The "yes he is having surgery in the morning/ surgery has been canceled" rollercoaster is draining. But, after his lines broke, yet again, yesterday the call was made to pull them.

Will is having surgery this morning to remove his current central lines. The interventional radiology team that placed his lines in coming in on their day off to remove them thanks to nee hospital policy that says the group that placed the line must remove it. Since they are coming in on their day off, we aren't exactly sure of surgery time, just that it will be sometime this morning. Seeing as it is already 9am and we haven't heard a thing, I'm guessing their morning and my morning are not the same thing! Ha!

Due to the line infection Will has been battling all week, they will not be able to place a new line today. A peripheral IV was placed yesterday and another will be placed while he is under anesthesia this morning just as a "safety" in case his first IV gives out as he still has to get his IV antibiotics to treat the infection.

At some point on Monday (we don't have a time yet) Will will have a PICC line placed instead of another central line. I've never dealt with PICC lines so this is a new animal to me! But PICCs are less invasive and easier to place. Hopefully Will does well with this type of line and I can keep him from pulling it out! PICCs are not surgically tethered like central lines are, and they are placed in the arm, so I have a huge fear that Will is going to tug on his line until it slides right out!

If everything goes well, we should be discharged on Wednesday! I am so ready to be out of this hospital! Will is on contact isolation (meaning he cannot leave his room) due to rhinovirus and we are both getting cabin fever! We are ready to be home with Kate and Alex!!

I will keep everyone posted as best as I can - and again, I will for sure update the blog Facebook page (link) much more "real time" as Will is taken back to the OR ad comes out of surgery. 

As always, we are so thankful for all of the thoughts and prayers being sent out way! I'm praying this is Will's first, and last, post BMT bump in the road

August 6, 2013

New URL


It's true. I forgot to handle renewing my domain and it was purchased from under me. After a minor panic attack, I realized that I have too much on my plate to stress about this and a new URL was not that big of a deal!

So, welcome to our new home on the web!

August 5, 2013

Back in the hospital

Well, I'm writing from a place I hoped to avoid - the BMT unit at Texas Children's.

Will was admitted Saturday morning after blood cultures, taken at clinic Friday morning, tested positive for a bacterial blood infection. We received the "he needs to be admitted ASAP" call around 8am and Will was in a room, having cultures taken, and IV antibiotics started by 9:30. Clearly they were not messing around!

Will had a very had week last week - he was irritable, not sleeping, and just not himself. After a week of this, we finally took blood cultures and ran viral screenings at clinic Friday. As I mentioned, those cultures came back positive.

There has been some "drama" regarding our stay so far. A float nurse was assigned to Will Saturday night and she failed to follow hospital policy which resulted in contaminated blood cultures. She also did not handle his lines properly and ended up rupturing one of his lines. We spent all day Sunday dealing with line repairs, unclotting the line, etc and were finally able to get IV antibiotics started in the lumen that was ruptured.

As of now we are in a watch and wait situation. If Will's cultures come back negative today and tomorrow, we will be able to keep his lines in and just do a 10 day round of IV antibiotics. However, if his cultures continue to come back positive he will have his lines surgically removed, an IV placed for 3 days, then go back to the OR to have new lines put in.

Obviously we would like to avoid two surgeries but we also do not want to keep contaminated lines in him as that is not good at all. Hopefully we will know more by mid-day today when his latest cultures come back.

Another thing we are waiting on is information regarding the bacteria present. A positive culture just means bacteria has been detected. Now we have to wait for that bacteria to be identified so we can adjust antibiotics to treat the specific bacteria. The strand of bacteria identified will depend on the length of his hospital stay. It looks like we will definitely be here until Friday or Saturday but there is a big chance we will have to do all 10 days of IV antibiotics in the hospital which would put us here until August 13 or 14.

I will keep everyone posted as we know more. The easiest way for me to share the latest information is on the blog Facebook page (link) as I can quickly update from my phone!

On top of Will's infection, Kate is sick, and our dog Sadie has an eye injury! Needless to say, Alex and I are both spread thin and exhausted!

We appreciate thoughts and prayers as Will navigates this post transplant complication!

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