Thursday, December 3, 2015

God Is With Us Marching Through The Dark

Hi, it's been a while. Thank you for faithfully praying for our family even though it seems like we've fallen into a black hole of some sort. I am happy to report that it's nothing as dramatic as being lost in space. We have just been very busy...with good things. 

I have been wanting to update for a long time now and have had many posts swirling around in my head only to lose them to a thousand other thoughts vying for attention. But, fear not, I am back with updates on all that has been happening in the past few weeks. 

How is Ava?
Ava is thriving. Honestly, if it wasn't for that unexpected skin lesion turning up positive for leukemia, we would still be blissfully ignorant to her relapse. For a while our girl was lost but now we are seeing her come back with a voracious appetite to gain back all the moments that were wasted while battling these past 2 years. She sleeps very little because she just can't get enough of living. She goes to school when she can and loves her Pritchett family, goes to clinic once a week, and is enjoying being the oldest sister to Gwen and Jude. Watching Gwen and Ava play is a delight like no other-it's better than eating ice cream. Enough said.

Ava goes to clinic once a week and even had her blood drawn while vacationing in Florida. All her labs look stable at this time and we are thanking God for every precious day that he holds off her disease. We continue to pray that Ava would fall into the very small category of people who can walk away from aleukemic leukemia cutis with a story of miraculous healing. 

But for now, we continue to keep a close eye on her labs, her skin, and her overall appearance. The plan is to have weekly lab draws and monthly bone marrow biopsies. There is a small bump on her lower lip that will be evaluated this Friday by a dermatologist. If he finds it suspicious in any way, we'll have the bump excised and biopsied. We are praying that it really is nothing because if they do find more leukemia in her skin that would be our cue to begin treatment again.

With all this said, we have been experiencing a peace that we really shouldn't have in the midst of this storm. I don't know if it is denial and some people might even call us fools but we can't describe the joy and the peace that has infused our lives at this time. It's not acceptance of her death but hope, like none other, that she will live and live well.

How was the vacation?
It was delicious. Can a vacation be yummy? Ours sure was. There was never a question whether my parents would come along because if there are any two people that need a vacation, it's them. They have served us tirelessly these past few years and have emerged with a lot more wrinkles and gray hairs. Lucky for my mom, I sell skincare that has helped erase some of the damage we've caused. When Gwen asked my dad why his hair was so white, he said he dyed it so that he could make my mom look younger. Who said chivalry was dead? But really, that white hair did not come from a box of Walgreens' hair coloring kit. It was earned; he should wear it proud.

So even though it was supposed to be a much deserved vacation for them, my mom ended up cooking almost every day of our vacation so that we could have Korean food. For, how could a Korean survive without kimchee for even one day? (Roll eyes) I have learned not to fight a battle I can not win. 

We swam every morning, had kimchee for lunch, and then slowly ambled our way over to the parks. By the time we got there though, I was usually bossing people around and making everyone run to different rides so that we could maximize the time. Because, why the heck are those tickets so expensive? My poor parents were running through the parks trying to keep up. I showed no mercy. 

But, we really enjoyed it all, even the packed lines to catch the monorail. Of course the huge crowds made me slightly anxious about what we would do if there was a sudden zombie apocalypse. I can't think of a worse place to be for that type of event than in a line at Disney World. So I had to call Mike in for an emergency huddle to draw up a that weird? Seriously though, run for a Costco if you ever find yourself in a situation where there are zombies. It will have everything you need for at least a couple of years and the whole thing is made of concrete...ok, we are a little weird.

So we ate kimchee (I'm not sure I emphasized this enough), cotton candy, funnel cakes, seafood, and we just enjoyed the heck out of each other's company. It was so good for our souls to see Ava doing everything she couldn't do for the last few years like travel, swim, be in crowds, eat food off the floor...nah, just kidding. We still won't let her do that yet so she gets jealous that Gwen gets all the crumbs that fall. Kidding again.

We are so thankful to all our family and friends that made this trip possible by donating miles, paying for hotels, lending cars, slipping us spending money, and sending us out with love. When I begin to feel bad, all I have to do is look around me. God has been good to us through you. 

How are Gwen and Jude?
Gwen is doing really well. Her skin has cleared up almost completely and she is making up for the lost years without her sister by sticking close to her side. She's been laughing so hard that she's triggered her asthma a few times! She's enjoying pre-school, playing with Pippin, and telling me several times a day how much she reaaaaaalllly loves candy and wishes she can have some right now.

Jude is 10 months old and still not crawling, and I am crying happy tears. Thank you JESUS! I have never been so ecstatic to have a developmentally delayed child. My hope for Ava was to have her learn everything super fast. But I have done a lot of parenting since then and now I am so much wiser about what I hope for. He eats a lot of everything and so far has been exposed to peanut, wheat, soy, and milk (in baked goods) without any reactions. This is huge. Thank you to everyone that has prayed for him not to have the same allergy issues as Ava and Gwen. 

How are we?
There are strong days and weak days, good moments and bad. Most of the time we are truly at peace. There are still times when I will need to excuse myself to bring my heavy heart before the Lord. I wrestle with this burden daily, laying it down and picking it back up again. I reason with God about how our family would NOT be okay if Ava was taken from us. I listen to him speak about how he understands our gut wrenching pain, for he personally knows this turmoil and wretchedness. He, too, has felt the shattering of a broken heart and a sadness so deep that there seems to be no end. I still jolt awake at night and reach for her to get in one more hug, one more kiss, one more scent. But the morning comes, as it always does, with its bright rays of hope and I have felt the joy that God has promised us with the dawning day.

I'm holding on to his promises especially because "Lord to whom shall we go? You have the words of eternal life." James 6:68 

What's next?
Ava will have her transplant party this Saturday and then we head off to Seattle on Sunday for her one year post transplant follow up appointments. It was sad because when she relapsed they called and asked if we still wanted to go through with the schedule. I guess there isn't a point to it all if she'll have to fight again soon. But, we will proceed with them because Mike and I agreed that we wouldn't make decisions out of fear but out of our immeasurable love for her. Because love will win. It already has.

"It took me a while to see the dream was all gone, like a fool I kept singing my song.
I keep t
alking like nothing is wrong, just a fool, carrying on. 
I tried to live it well, but I can barely breathe as the devil he dared me to bend.
Is to stay alive and keep our souls from dying a desperate man's hope in the end?

See, the sun's gone, we can’t see where we are. Are we fools for marching through the dark?
And though the light’s gone we can’t be very far. Yes, the fools are marching through the dark.

I was young and strong, and then was weak and I fell.
Like a fool I thought all would be well.
I keep walking so that no one can tell that my heartache is a prison cell.
I tried to keep the faith, but it’s so hard to believe as my doubts they conspire to the end.
So I’m holding out, praying God would heal. It’s a desperate hope to defend.

The wise man said give up your fight.
That hope is for fools and he’s right.
But I won’t give up, no I won’t give up.

If we hold on, and though we carry scars, God is with us marching through the dark.
Turn the light on, and hope will bring us far. Yes, the fools are marching through the dark.

So turn the light on, because home is not too far. God is with us marching through the dark." - Fools Marching | Tim Be Told 

(Currently one of Ava's favorite songs)


MD said...

My thoughts and prayers are with you and your family all the time. God is great and merciful I pray that Ava becomes cancer free... I would love to know more about those skincare products. :)

borabora said...

Hi Maribel,

Thanks for much for you encouragement,
support, and prayers. God knows we need them so much right now...

I am currently selling Rodan and Fields skin products, the makers of
Proactiv. They have come out with a premium skin care line that has been
clinically proven to show results. I've tried it on the whole family and we
are hooked! Lol. They also have a 60 day money back guarantee for those
that don't find it working for them. I love that part! Let
me know if you'd like more info. I enjoy helping people find great solutions
for their skin because we've been through so much with ours!

Thank you again for your love and support!

Anonymous said...

Hi Esther. We have never met but I follow Ava's story through your blog. i am praying for Ava and your family. Thank for for the leering us walk this journey with you in spirit. I look forward to updates and am waiting for answered prayers!! ❤️❤️❤️

Anonymous said...

What a great song !! Love the lyrics !

Anonymous said...

Glad to hear things came out ok. =)