Pressing On

Surviving. That's how I'd describe the last couple of weeks. Picking up one foot and placing it in front of the other, not looking back, and not looking too far ahead either...that's been my survival tactic.

The prep for the actual bone marrow transplant is designed to be so rigorous and exhausting that I believe part of the mission is to push the families to the point where they say, "Enough already! Let's just get this thing started!" Of course, the other mission of all this testing is to check out every single aspect of the patient, big and small, so that there are absolutely no surprises when the transplant process begins. By next week, the transplant team will know absolutely everything medically possible that they could know about Avery Weston Hoskins!

There have been a few additions to the typical testing along the way. As is his style, Avery can't just do anything by the book; he has to be more complicated. So the first addition is a surgery this Thursday to remove his mediport and place a central line instead. For some reason, his port has migrated so that it is touching the side of his heart. The docs are concerned that it could cause an arrhythmia if not removed ASAP. The second addition is another surgery next week that the ENT felt was necessary considering Avery's swallowing issues. So, they're doing a triple scope (bronchoscopy, laryngoscopy, and endoscopy) and taking some biopsies, washings from the lungs, and placing some sort of probe. Both of these procedures will require staying overnight at the hospital and be somewhat painful. The donor has been activated, and if he/she is willing to donate, our doctor would like to admit Avery to the transplant unit the week of October 10th, and begin his preparative regimen of chemotherapy and immune suppressants.

I don't like living in survival mode. I feel like when I'm there, I don't take time to enjoy life. With the transplant looming ahead, we have been trying to break out of our routines to make some memories and have some quality time. Last weekend, we made a quick trip to Indiana, which may be the last of our family trips for a while. We've been trying to do some "ordinary" things that we've been too busy to work in recently, like going out for ice cream or a family trip to the park on a nice evening. We've been spending some extra time before bed with all five of us piled into our king size bed cuddling and talking.

We did take time to capture Emerson's first bath with her brothers. Avery loves his bath time, and he thinks the more the merrier!


Avery thinks his big brother hung the moon! Bryson says Avery is his best friend. A couple of mornings ago, he said, "I think Avery had a bad dream last night. He rolled on my side of the bed and laid on my belly, so I just let him sleep on my belly so he wouldn't be scared." Here they are wrestling, which of course, Avery thoroughly enjoyed.


It's easy to get discouraged and feel overwhelmed. But just when I think I've had all I can take, I remember how many people all over the country are sending up prayers for Avery. His name must be echoing in Heaven, and I know that God is mindful of us. I've had some sleepless nights lately that have driven me to my knees, which is probably where I need to be more often. In my times of prayer, God has been so close, and I get up feeling like maybe I CAN do this!



We went to church the other night, and Bro. Bennie preached a sermon about "One Thing" that matters. He talked about this race not being one of speed but of endurance. His main theme was about pressing our way to Heaven. It's not always easy, but when you get rid of all the distractions, it's all that really matters. I felt like that sermon was applicable to me in more than just one way. Pressing on and having patience and endurance is what is going to get me through this huge ordeal for our family and also get me through this life. I just have to keep my eyes fixed on the prize!

I don't want to fail to say THANK YOU to all of you who pray for our little Avery. We sincerely appreciate them!

Love to all,
Bethany

The Good, the Bad, and the CUTE

It's been an eventful couple of weeks since I last posted, which is why I haven't really had the time to write. Today is Labor Day, though, and we're celebrating by doing absolutely nothing. Well, Phillip is working, but the kids and I are just hanging out at the house catching up on some much needed play/rest/housework.

The Good...
Bryson's Jonah party was a hit. The decorations ended up being very cute, and he and his friends watched Veggie Tales Jonah movie, enjoyed their favor boxes (note to self: next time avoid the kazoos and whistles!), played games, and ate candy and cake.

Now that my big boy is 5, he started attending the Young Fives program at school. He was so excited to ride the bus and go to school. I waited until he was on the bus before I let my tears fall because I didn't want to worry him at all. After a week and a half of school, I emailed his teacher to see how he is doing. He tells me every day that he follows all the rules, but he's not the most reliable boy in the world. He also told me that he learned about whales and that one of his classmates brought cupcakes for her 78th birthday...both of which I highly doubt! So imagine my surprise when I received an email back from his teacher saying that Bryson listens well, follows all the rules, and in her words, "is a lovely student" to have in her class. Yay! Maybe there is hope for my little rascal after all!

More good news is that Avery has been doing the "side sit," which we worked hard on in therapy for a while. He resisted our attempts, but he is doing it in his own time and way. I also watched him pick up a t-shirt from the floor and place it on his head, almost like he was trying to put it on. I love watching my little boy do new things!


Emerson has been sleeping a little better. She is going about 5-6 hours per night before waking to eat. She even had one 8 hour night a couple of nights ago! That was fantastic! She is getting big so quickly, probably because she is quite the eater. We have fallen into a new normal with 3 kids, and it's not quite as difficult as I imagined. We've even gone out to eat quite a bit with them which is something Phillip and I thought we wouldn't be able to do anymore. Now going to the grocery store is a little tricky for me since Avery and Emerson both have to ride in the cart. I end up with hardly any room for groceries, but we're figuring it all out.

The Bad...
Hmmm. Where should I start? I guess the biggest, baddest thing we're dealing with right now is Avery's health. We met with the transplant team a couple of weeks ago in Cincinnati. They agreed that a transplant is necessary very soon for Avery since the transfusion schedule he has been on is not sustainable long-term. The BMT doctor said that until recently, they didn't transplant for Avery's condition (dyskeratosis congenita) and they still don't on some patients who are 10 or 15 and have already developed lung and liver disease, but with Avery being only 3 and no signs of those conditions yet, he is eligible. She has ordered some pretty major evaluations on him to check all of his main organs to see if they will be able to tolerate the chemotherapy. As long as nothing shows up in the next couple of weeks of testing that would disqualify him from a transplant, it looks like we'll be ready to begin within a month. Between now and then, Avery has a bone marrow aspirate/biopsy, kidney tests, liver/kidney ultrasounds, full body CT scan, ENT & neurology consultations, lung evaluation, and a few more tests I believe.

This is a time of my life that I never really believed we would have to come to. I dread it so badly for him and for our family. I get stressed easily, and just spending days in the hospital with Avery when he's sick stresses me out. Somehow I'm going to have to find the stamina to endure this for months, and from what we've been told, he will be sicker than he's ever been. The side effects of the chemo alone will be tough: mouth sores, vomiting, swelling/irritation of the feeding tubes, seizures, etc. So far, we've been told to expect to be inpatient at Cincinnati Children's Hospital for 4-6 weeks if all goes well, and then we'll be staying at the Ronald McDonald House for at LEAST 100 additional days to go to the hospital daily for check ups, treatments, transfusions, etc. While Avery's health is the priority for our family right now, I'm also dreading being separated from my kids and husband for so long. The isolation restrictions are pretty strict. I'll be away from my new baby and my 5 year old, both who I feel need me so badly in different ways. I'm trying to start preparing Bryson by talking about Avery being in the hospital. Last night, he said, "But I can't sleep in my bed when Avery isn't in it!" I'm also trying to plan ahead on how I'm going to get Emerson sleeping in her own room as soon as possible and trying to allow her to drink from a bottle so others can take care of her. I hate rushing these things to since Emerson is my last baby, I wish I could just enjoy these days. The only thing that keeps me from falling apart is thinking that this time next year, Avery should be doing better. I know that God won't put more on us than we can bear, but sometimes I think we've maxed out! But, I have an amazing husband, family, and more than that, a God that I know will sustain us. Please keep us in your prayers if you think of it!

The CUTE...

It just wouldn't be right for me to end this post on a negative note, not when I've got the chance to share more cuteness from the Hoskins clan!

This is what Bryson looks like almost everyday when he comes in from playing outside.

My adorable little Emerson Rose

Here is cuteness x 2! Emerson with her cousin, Ava.

My sweet little Avery. He came straight from the hospital infusion room to the party and still had plenty of smiles!

Bryson and Avery enjoying the last of their pool days! Even Phillip joined the fun.






Happy Avery !





Yes, I know I went a little picture crazy. :)
Blessings to you all,
Bethany