Tuesday, June 30, 2015

Temporary

The word "temporary" has been in my brain for a couple of months now. It still rings out loud and clear each day and I find myself uttering the word itself a couple of times each day, either to myself or my family ... "this is temporary ... it's only temporary ... temporary, temporary".

But, actually EVERYTHING is temporary.

When I look back just a few months, I remember feeling like we were on top of the world. Everything was falling in line for us as a family. Everything. I thanked God for His blessings over our lives.

And, within a few weeks our lives drastically changed.

As we navigate this process, I am reminded that we should never get too comfortable with the conditions of our lives when things are going great. Life can turn on a dime. Even the good things in our lives are temporary. There will be harder times.

But, we should also not worry or agonize about our current circumstance when things aren't going so great because again ... it's temporary. Life can turn around and will.

There is truly on one thing that is permanent: God.
He is permanent. His love is permanent.
His Word is permanent. The truth of His Word is permanent.
Who He is through His Word is permanent.

You've heard not to sweat the small stuff, but actually, we shouldn't sweat the big stuff either. That too is temporary.

Now, that's a lot easier said than done.

I am no Mrs. Perfect Christian Super Woman {I mean ... I know you thought I was}, never worrying about a thing, never falling short, never questioning. I do all those things, but I am learning each day to trust more. I'm learning that all of the things we think are big deals and problems are really nothing to God. 

Healing is really nothing for God. He can do it ... no problem. He will do it ... no problem.

But, the question is what will we do as He heals? What will we do as we wait?

Same question goes for everyone who's waiting on God for an answer ... What will you do as you wait on God? Will you worry? Will you question? Will you trust?

Let's be honest here ... you will worry; you will question. But, you will also trust.


There will be roller coaster days, sometimes weeks. I know this. This will be hard. I'm not going to act like it won't be. It will. But, we will push through ... we will pray; we will trust; we will hope; we will lean on one another.

And, most of all, we will remember this is only temporary. 
It may be what seems like the longest temporary ever, but it will end.

We can be comforted in knowing, for the Christ-follower, on the other side of our circumstance or our problem, God always has something good for us.

This song is one of my anthem songs these days ... an oldie, but a goodie ...


LATEST UPDATE: Really not much different from last week. We're still waiting on official donor clearance, which we are supposed to hear about by Friday. Katie (aka La Petite Belle) will be getting another round of transfusions on Wednesday. We were hoping for only platelets, but her red blood count has gotten lower more quickly than before and she will need more of that too. She will also be getting an ultrasound today just to check out that everything's swell with her female parts. This is just precautionary. She was put on pills to stop her cycle, which seem to be working well. Extra bleeding ... ain't nobody got time for that! She is also continuing with Neupogen shots every other day. They are really working well at boosting her ANC, keeping her healthy all the way to transplant. I hope to have a more specific update by Friday with confirmed dates and details.
Thanks for praying for us and all your support!

If you would like to support Katie's (aka La Petite Belle) journey to healing financially, you can find more information here - www.gofundme.com/Katieg. All money goes toward medical bills and expenses.

Thursday, June 25, 2015

It's a marathon, not a sprint.


Someone made that very statement to me a while back. It stuck with me. 

This whole journey which we are embarking on is a marathon, not a sprint.

People need to know that this is not a quick fix or process. Not only is the waiting long, but the recovery can also be long. I know people get anxious and then just get bored with the whole thing. They get tired of asking questions and again, like I've said in the past, don't know how to act around us. It's just gonna take time, guys. We'll get through it, but it's gonna take time.

Now, don't get me wrong ... I still remain hopeful. La Petite Belle is a very strong kid, always has been. She was strong-willed and anyone who knows her has witnessed all this child is capable of, both good and bad. She has always been the picture of health. Her claim to fame ... as she tells others, "I've only thrown up twice in my lifetime." It's true. This child had no ear infections, no hospitalizations, no major viruses, no sicknesses at all ... until now. I know that she can beat any odds, especially with God on her side.

But, as I've learned in recent weeks, recovery can take a while. We're talking months here. Actually, the medical field doesn't say a transplant patient is fully recovered and their immune system back to where it should be until after a year post-transplant. A YEAR!

Even more, there's more evidence for her and I to be away from home longer than expected. As another person told me ... "no one goes home 100 days post-transplant." No one.

That was hard to hear. Not just because I want my baby home, but I want us to be home with our family. I know that she could be the one ... the one who has an amazing recovery and goes home early, but if she isn't, I need to be prepared for that, too. God will heal her either way and that's all we desire.

There were tears from La Petite Belle just the other night as we got rid of our couch. She's emotional enough as it is right now, but she just wanted to lay on our couch (which we got rid of because we're moving in just a couple of weeks ... currently sitting around on patio furniture). She loves our house. She doesn't do well with change. Never has. And, her life is about to get flipped upside down more than it even has been the last few months.

I still cry. Not as much, but I cry.

When I think about being away from my husband and oldest daughter (who's about to leave the country), I get sad. I cry when I think about all that I will have to be for my daughter, thinking I may not be strong enough to do it. I realize I have to do it. I don't have a choice. But, I wonder if I can be all that she needs me to be. I have to be strong. I have to be positive. 

I get sad when I think of the possibility of us not being home for Thanksgiving, and let's not even think about Christmas. I can't bear that thought.

The thoughts that enter your mind when you're going through stuff like this span from the best, positive thing to the worst-case scenario. I constantly have to take those darn thoughts captive ... even crying my eyes out, I still take them captive and move on. You just can't allow your mind to stay in a hopeless spot. It wasn't meant to be there.

I have to keep expecting and hoping for the best, because that's what my God, my Father, would want me to do.

When I tell my girls I'm going to give them a gift, I would hope that they think that it's something good and not something harmful to them. When my girls think about me as a mom, I would hope that they know that I would always want good things for them and their lives. And, of course, they know I want them well ... I'm the one who takes care of them and always looks out for them, begging them to stay healthy.

It's the same with our God. He loves us even more than our parents, or we, as parents, can love our own children.

I know it will be a long time. I'm preparing mentally for that ... crying all the same, but I'm preparing. I'm preparing for the marathon.

I see how people have been so loving and supportive and just plain old wonderful through this. But, as time goes by, the calls and texts become less and less, the meals don't come anymore, the money stops, people just start to forget. Now, I'm not blaming anyone. People have their own lives. I get it.

But, just know ... running a marathon takes a lot of training ... weeks of training, sometimes months. There are those who are with you at the beginning ... the sprint. In fact, there are SO many people who will be there for the sprint. But, thank God, there will be those who are with you through the long haul, through the whole marathon, all the way to the finish line ... those who will run right beside you, pushing you and saying "you can do it". 

Those people will be few and so extremely valuable.

I do worry that this experience will change me. I worry that I will become more introverted (don't even snicker ... I'm being serious here), that I won't want people around anymore, that I'll start to feel uncomfortable in groups, because I will be mostly alone for so long. I pray that this changes me for the better and not cause me to be something God never intended me to be. I pray that God will sustain me and just make me stronger so that I can be a better servant ...  a better wife, and a better mom.

As far as the latest update goes ...

The donor had her physical yesterday. We have tentative admittance and transplant dates. We also have a tentative appointment date in mid-July for all testing that will need to be done before admittance. As soon as we know the donor is cleared, we will get confirmation on all the dates. As of right now, my girl continues with her weekly appointments to check counts and get transfusions. Yesterday, she had two units of platelets and two units of red blood. She is also getting her Neupogen shots to boost her white blood count every other day. We see a OBGYN today to discuss what we can do to stop her cycle due to the fact that the previous attempts have failed. She needs to keep as much of her blood as possible. Being a girl is just tough sometimes, isn't it? We hope to have everything confirmed on dates by the end of next week and be able to let all of you know exactly when we're leaving. 

Again, thanks for the prayers and support.
If you would like to support La Petite Belle's journey to healing financially, you can find more information here - http://www.gofundme.com/Katieg. All money goes toward medical bills and expenses.

Monday, June 22, 2015

This was a first.

As a family, we always said that there'd come a time when we'd all sing together, especially as La Petite Belle got older. Well, this weekend we did sing together for the special Father's Day song.


While I am not a huge fan of country music (yet I love the show "Nashville"... perplexing, I know), this song was a doozie. I literally teared up almost EVERY time we tried to sing it. So, why would the performance be any different, right? There were some tears and choking-up moments for sure, but we made it through. Beau was kind of a mess, but a good mess.

It was a joy singing with both of my daughters this time. There were some annoying mom-moments for them, of course ... adjusting their shirts, shushing them backstage, reminding one of them to stand up straight and not slump, and hiding a huge untied, dangling pair of shoelaces that didn't get tied before we got on stage. But, I treasured each time we sang ... each moment.

The song was "It Won't Be Like This For Long" by Darius Rucker. Guys ... if you haven't heard it and you have daughters ... don't do it unless you want to be crying in the fetal position in a corner somewhere.

The song hit close to home for both Beau and me with our current circumstance ... La Petite Belle's diagnosis/temporary life change/upcoming transplant and K Belle's leaving to go overseas next year. Lots of emotions swirling around here. 

When you're a young parent and all sorts of people tell you how quickly time will fly by and your kids will be grown, it doesn't seem like it. Those younger years seem like they'll go on forever, but they honestly are gone in an instant. I know it's hard to think that you could treasure changing one more poopy diaper or embrace waking up for the umpteenth time in the middle of the night, but they will be gone in a short time. I promise.

If I could say one thing to young moms besides just to simply cherish each moment (that's so cliche' but there's on other way to say it), it would be to record EVERYTHING, write down EVERYTHING because before you know it, you'll be forgetting what it was like. That's the whole reason I started this blog almost eight years ago. I wanted to remember and I wanted my girls to remember, not just special occasions and holidays, but remember who we were as a family ... who their daddy was, who their mama was, and who they were. I wanted them to have something that documented a lot of their lives and their parents' lives.

And, now I find myself writing mostly about something I NEVER in a million years thought that I would be writing about. But, now it is a part of our lives and part of our story.

If you haven't heard the song, here it is ...



If you would like to support La Petite Belle's journey to healing financially, you can find more information here - http://www.gofundme.com/Katieg. All money goes toward medical bills and expenses.

Friday, June 19, 2015

I always wished I was a Braverman for times like these. (only "Parenthood" watchers will understand)

I had a tiny update from the BMT coordinator yesterday ... only that the donor is scheduled for her physical on Tuesday. And, guess how long it takes to get the results of a physical back? Yep, you guessed it ... one week ... another week to wait {seems like this is the popular time frame to get results these days}! So by June 30th, we should have an answer on that little issue. If all goes as planned, we would be headed to Houston mid-July {more specific dates to follow once the physical results are back}.

The admittance would be closer to August.

As Beau and I started to calculate dates, we came up with the tentative time frame of us (mainly La Petite Belle and me) being gone mid-July until late November, somewhere around Thanksgiving we're guessing if everything, once again, goes as planned.

"Goes as planned" ... ha! I laugh when I say things like that nowadays.

I told Beau last night, "I can make all the plans I want, but it doesn't mean they're going to happen." We've each learned to not count on our plans.

Thinking about this long stay in Houston made me feel sad last night.

I thought about how long I would be there mostly alone with my girl. The "alone with my girl" part is fine, but thinking about us being so far away from everyone in our lives is the lonely part. 

I know those few of you who live in Houston will say that you can help, but I'm talking about family and friends who are the regulars in our lives. That's a long time to be separated from them.

I start to wonder what four months away will do to friendships. Of course, I hope nothing. But, let's be real here ... separation for any length of time usually separates hearts too. Sad, but true. Not intentionally, of course, but it does happen. I feel like I've spent the last ten years of my life developing and working hard on maintaining friendships. Some may fall by the wayside and I'm just working on being ok with that. I know what you'll say ... "then they weren't friends to begin with" ... but that's not always the case in distance issues.

I reference the Bravermans (back to "Parenthood") because they were a large family ... not just large, but close. Any time there was a tragedy, they all ran to each others' sides ... good times, bad times. I know it's television and not real life. But, it should be for every family.

Yet, alas ... guess who's an only child? Moi.

So, there is no sister, no brother ... and wouldn't you know it, my parents are moving overseas. I'm thrilled for them ... proud of them. They're awesome! But, darnit ... I need a sister ... um, make that two sisters ... actually, three would be best.

Yes, I know I have Jesus, people. He'll be the One I'll be hanging onto as Beau drives back and forth during this time period. So, don't go all super-spiritual, religious on me. I've got Jesus. He's got me.

But, let's be honest ... a sister or two or three would be good ... someone to talk to who is not a doctor or nurse ... someone to just sit with me ... someone to get me groceries and make sure I don't run out of toothpaste or deodorant ... you know the kind ... sisters. This is the reason I had two children. And, lookey there - they're sisters! I've always told them they needed to stop all the bickering and remember that when we're long gone, they would only have each other. 

Last night, K Belle and La Petite Belle got to go to a friend's sweet sixteen birthday party, which was a fancy ball. I was thrilled that La Petite Belle got her substitute "8th grade dance" somewhat. We're trying to take advantage of each and every day together.


It will be a long, semi-lonely road ahead. I do know God will get us through. But, wouldn't it be nice to have Sarah Braverman {no, maybe not her ... she was a tad bit annoying} or Julia {hmm ... maybe not her either} ... ok, so maybe the best Braverman to have would be Crosby. Yep, Crosby by my side would be nice. No, he's not a sister, but a brother might work too.

We continue to wait patiently for the exact dates. We continue to monitor our girl and keep her healthy as we wait. We continue to prepare for our move out of our home into our new home. We continue to prepare for our additional temporary move to another state. We continue to prepare our oldest to leave the nest for a year come January. And, we continue to pray, hope, trust, and believe.

Hardest. Year. Ever.

Cast your cares upon the Lord and He will sustain you. 
Psalm 55:22

If you would like to support La Petite Belle's journey to healing financially, you can find more information here - http://www.gofundme.com/Katieg. 

Monday, June 15, 2015

On Hold

That's where I live right now ... just on hold, in limbo, waiting on a phone call, an email.

It was almost a week ago that we found out that La Petite Belle's donor agreed to go ahead with the donation. And, now during the next couple of weeks, everyone works on coordinating dates ... donor gets physical workup to make sure she's healthy to donate, she looks at her schedule to figure out what is a good date for her, she may have to travel to a donation site, and she would need to get shots to boost her stem cell count before the procedure. Texas Children's Hospital also has to have a bed in there BMT unit so that also plays a part. Meanwhile, La Petite Belle continues to see her doctor, to check counts, get transfusions, takes her meds, currently takes shots to boost her white blood count (she needs to stay healthy during this waiting period so that the transplant does not get delayed), and tries to be a normal 14-year-old. 

Every day I check my email frequently ... like every 30 minutes to see if I have some sort of answer as far as when we need to temporarily relocate.

The thought of being about 3 1/2 hours away from home isn't a very fun thought, especially realizing after the first couple of weeks, I'll be doing the majority of caregiving on my own. Of course, missing Beau and K Belle is going to be another thing I have to deal with. When I think back just a few months, I remember telling Beau that the rest of this year I was going to spend every minute I had with K Belle before she left for college. Turns out our time won't be as I planned.

I constantly recall that Scripture in my mind ... We can make our plans, but the Lord determines our steps. -Proverbs 16:9

My plans were made with good intentions. My plans were for the best for my oldest daughter and for our family. And, while I don't like to say "God had other plans" because I don't think God "plans" tragedy and horrible things for us. I just don't. But, He knows they are coming and He prepares us for them.

  He never "plans" bad things for us; His "plans" for us are ALWAYS good.

So, my plans just got thrown out the window in one instant and new plans were made. New plans I never thought I would be making ... like moving for a few months or being jobless or flushing PICC lines.

Speaking of PICC lines ... flushing those things are like second nature to me now. I was so scared at first, thinking I could hurt my child in some way because of my clumsy syringe handling. Today ... a piece of cake!

Now, there's a second challenge, and I'd be totally happy to NEVER have to do this ... give La Petite Belle a shot. Right now, she is getting Neupogen (only costs about $20,000 each) shots every other day. This is probably her worst fear realized. She hates needles and the medicine burns. She has already informed me that she is NOT comfortable with me giving them to her ... well, join the club, sister! I'm not comfortable giving them. The nurse gave me instructions on how to do it before we left the hospital. I feel like I'm becoming a nurse via CliffsNotes. The only part I remember now is "it's kinda like throwing a dart." Uh ... huh? I was NEVER good at darts.

So, we reverted back to having Nana come over and give the every-other-day shot until one of us thinks we can do it. That needle is long ... and even the pulling of the medicine from the vial seems more complicated. Maybe I need to practice on someone? Any takers for dart practice?

For now, we are continuing to take it day-by-day until there is a date and a plan from the hospital.

On a good note, our house is under contract. We've sold almost all or our furniture and are gathering everything in our house together to sell at a massive garage sale in a couple of weeks. I hate doing garage sales. Hate.

But, it must be done. 

I'm also packing up boxes of what we are keeping, which is only our clothes and any keepsake items we're taking with us. 

I had a few emotional moments when I started taking all of our pictures off of the wall. Seeing the progression of ages in my girls was brutal!

Believe it or now, it feels really good to purge. It's like starting over, starting fresh!

Will I miss the house? Yes. Only because this is the house where our girls have spent most of their time growing up. We've been here almost 10 years so it holds a lot of memories. We have put a lot of work into this house too and created what we think is a homey, warm atmosphere.

But, "home" for us will be multiple places for the rest of the year. And, I honestly don't care where it is as long as I can have all four of us together. 

Perspective changes so much during times like these. It really does. You see what everyone is made of, not just you and your family, but your friends ... those you thought were close may become distant and not there like you expected them to be. There will be those who were close before and become even closer now. And, my favorite surprise ... those you never expected anything from become your heroes and literally the hands and feet of Jesus.

I continue to stand in awe and grateful for all God has done, particularly in the way I've seen Him use people to fulfill His Word.

He remains good. He remains able.

If you would like to support La Petite Belle's journey to healing financially, you can find more information here - http://www.gofundme.com/Katieg.

Wednesday, June 10, 2015

However, Lord.

Weeks back I posted about putting La Petite Belle's healing totally in God's hand. Whether God would choose to heal her miraculously, which would, of course, be everyone's preference, or whether He would choose another method would be totally up to Him. We surrendered all control and said, "God, HOWEVER You desire to heal our baby girl we will take." We do not want to try to control this at all because we know nothing ... He knows all. We stopped praying for specific paths or ways for Him to heal her. That's like saying, "God, here's the way we need You to work," when God is really the One who knows what's best.

That's hard to do. Because we know what way we think is best in situations. We know what makes sense in our minds. We know what will work for us.

But, ultimately, we have to trust that really God knows what's best. And, sometimes what may be best may not make sense to us at all. We may not see any good in our situation at all either. It may seem horrible to us. But, God always has a plan. His ways are always good. 

The big news of yesterday was that the donor for La Petite Belle's transplant was not only selected, but contacted to see if she was willing to go forward with the procedure. I say "she" because the only news we know is that the donor is a 40-year-old woman. That's all we will know until after a year post-transplant.

We, of course, were thrilled!

But, right after I heard that news, and after I had thanked the Lord for providing this donor for my sweet girl, I remembered that previous post I had written. I thought about my "however" and how this was our last option, but God has made it the one He will use.

I also thought about the fact that He is still our Healer. Although this woman is donating and supplying something that will ultimately save my daughter's life, God is still the Healer. God can and is using so many people to be a part of this great story of healing for my daughter. It's actually an amazingly beautiful thing that I see unfolding ... so many moving parts working together to create this incredible story.

Why did this happen? We've stopped asking that question because we will never know the answer. The first few weeks we did ask a lot, but the "why' question just torments your mind and leads you to a dead end.

We only ask "what" questions now:
What will you do, Lord?
What will you use us for in this?
What do you want from us through this?
What can we do with this path we've been given?
What will we show to others?
What will we do?

We are thankful for this donor. So very thankful.
We are hopeful and we are expectant more than anything.

Is it going to be hard? Undoubtedly, yes. 
We know that our God will lighten the load and surround us, but this will be hard. All we can do is trust in God to get us through Day 1 to Day 365. I say 365 days because the medical community doesn't consider someone "cured" per se until a year post-transplant. About four-six months post-transplant, she should show signs of really being back to her normal self.


Now that the donor has agreed, we wait for a date.
She will need to be prepped and her schedule be arranged. This may take a couple of weeks.
La Petite Belle will also have to be prepped beforehand with chemotherapy to rid her body of all those bad cells. And, then those beautiful, healthy stem cells will be put in her and the waiting begins, as they start to perform and do their work.

Thanks again for all prayers! Please continue to pray for us.

To support financially - gofundme.com/katieg.

Tuesday, June 9, 2015

My Hesitation

We now have a gofundme.com account.

This is something I never thought I would need to consider in my life and have always had mixed feelings about. The mixed feelings come from the abuse I have seen from others who have used gofundme.com. There are those who REALLY need their accounts due to illness, extreme hardship or great fundraising causes, but then there are those who make accounts for nonsense. The crazy thing is people actually give for these.

A friend talked with me about setting one up. I continued to hesitate ... back and forth about the whole thing. Then, I began to have countless people ask how they can help by giving financially. I've gotten message after message about setting up an account. I waited. Beau and I discussed it and thought about it. We waited some more ... waiting for details to know how much money we actually need in the next year. 

Then, there was a progression of events:
I had to quit my job. 

We learned more about how extensive the treatment would be.

We contacted our insurance company and talked with the hospital social worker about expenses and resources.

After we had a firm grip on the whole situation, we knew, with me being out of a job, that we needed to go ahead with the gofundme.com account.

Asking people for help is very humbling.

God has already used so many people to bless us, surround us, and support us. And, we know God will use others to help in this way. We may have a lengthy journey ahead of us, but we know that God can make La Petite Belle recover at an amazing rate and we're believing for that!

Here is the link to our account: gofundme.com/katieg.

Thanks to everyone who continues to support us in so many ways! Most of all thank you for your prayers.

And ......... did I mention we got cake ... lots of cakes and sweets?! We are blessed beyond measure ... literally ... like our waists have grown to an unmeasurable size. So much good food being brought to us and so much cake!


Thanks, friends! 

More updates on the transplant coming soon!