Overdue Update

I'm sorry this update is such a long time coming. Things are going so well! We are amazed and so very thankful to God! 

Sam has been able to access a recently FDA-approved new drug! It's so, so, so much better than the old treatment! For one, it's an oral med vs. the previous one that was only injectable (ouch!). It also has much lower side effects. His Drs worked very hard to get this new drug for him. He's been on it for just over a week now, and so far is doing super with it. He only had negative side effects for one day and is now his cheery little self again and back to his therapeutic pre-school. Amazing! 

We will be going back to the hospital every four weeks for awhile to monitor his progress and to see if the meds are working. I promise to update more faithfully.

Our hearts are so thankful! 

Biopsy Results

We have not received a full report yet because Sam's lead Dr is having another Pathologist examine the results, but we do know that our dear little son's liver has sustained scarring and that he will have to begin treatment in January in an attempt to stop or at least slow down the damage. 

There is only one FDA approved treatment for kids his age, but there are also some decent clinical trials. We are very appreciate that his Drs are taking their time and thoroughly evaluating which treatment would be best. They are all, unfortunately, harsh treatments with harsh side-effects (some are chemo-like) and are NOT guaranteed to work, but at least we have some options.

Sometimes I just want so badly to wake up and find this was all a bad dream. 

Balloons

John's employer sent Sam a balloon & bear bouquet. I LOVE these pictures of our happy boy! He is crazy for balloons! 

With big brother, Mark

With Nathan & Mark

Hospital Visit

Sam had a liver biopsy this week. It went well! We are so thankful for all the wonderful staff at the children's hospital! 

Before procedure

All done, resting in the PICU (where we stayed overnight)

Awake in PICU and feeling pretty good

After spending the day and night in PICU, I got new perspective on how much we have to be thankful for. My heart is heavy for all the struggling children and fearful, exhausted families we left behind there. 

Now, we wait on biopsy results. The overall impression we got was that things looked pretty good (yes!) but we really will have to wait on the results.

Sam is home and feeling spunky. You'd never know he had been at the hospital except for his bandages. We are THANKFUL! 

Soccer At The Beach

We were excited to go on a mini family-get-a-way to Wimington for a soccer tourney. I LOVE the beach but it was a bit weird to be there with the palm trees, wearing my winter coat! Brrrr! It was cold! 

But, we had FUN! We visited a wonderful, kid-friendly aquarium and the older boys also toured the S.S. North Carolina with John. There was time for us to loll around our hotel room and watch movies together too. So nice. 

Luke's team played very well and came in second for their age group!  Whoot! Whoot!  

Here they are. Aren't they cuties?! Love those boys! 

This is how Sam spent a lot of his time on the green. 

He is loving stuffed animals right now. So, so cute! 

Lately...

Yes, we are trying to process horrible news. God is helping us. It's messy though. I mean, seriously, I have questions and things I am so NOT OK with right now! I think God is totally OK with our messiness & I am so very thankful for that. 

Besides that though, we are LIVING! 

If you don't know Nathan, you are missing out. He is hilarious! This is what he decided to do today. It's nice out but NOT that nice. I love his zany sense of humor! 

We also had some Fall fun with dressing up, candy and pumpkins and several photo bombing incidents. I thought this one by Juneau was so funny! 

Another photo bomb by cute-dimpled-Luke! 

Sam's Health Update

We've been concerned about Sam's health for awhile now, maybe eight months, and have been doing labs every four weeks to monitor his liver. It all came to a head this week at the children's hospital when we met with his specialists. 

He will be admitted for a liver biopsy in the next week or two and then will begin six months of treatment/therapy with a chemo med. We will have to give him multiple injections at home every week that will very possibly make him feel awfully sick. Oh my, it hurts even to type that. My son. My sweet little son.

To be fair, we expected the biopsy would be scheduled. We were prepared for that, but we thought the therapy might not happen, that the biopsy results would look OK and that we could put that off. I mean, he is only four. But, his doctors are amazing, and very, very thorough and care about him, so we trust their decision that he should begin the meds too. 

So, we are trying to process it all. Our kids know what is going on, of course. We talk about everything. They asked, "Is Sam going to die?" We told them, "Not any time soon." That is what they wanted to know, the bottom line, so now they are fine. We are going to face it all together as a family with our ever faithful God.

So, I am relating to this God I know, and that I love, and that I trust, and that I also BEGGED not to let this happen to my son. Tough stuff! I have been down this road before though and I know I can process and be angry and have a big, big fit (and I will) and that God is plenty big enough to handle that. I also know I will continue on trusting Him. Implicitly. My only other choice is to not trust Him and that is not even an option for me. Not at all. 

So, we're preparing for battle around here. Battle for our son's health, battle to keep life as joy-filled and normal as possible, battle for our hearts to stay close to our Comforter and Strength.