Thursday, June 13, 2013

It's been awhile

Hey y'all! We're still alive and kicking. I am sorry for the length of time that has passed since my last post.

Here's a run down on our life since then. 

March arrived full of all sorts changes and decisions to be made. I was in the throes of college classes, a serious relationship, and working just about all the time. Add in the kid's activities and I was one busy Momma!

Kacie was in the last weeks of being in braces. She finally fully recovered from her bout with mycoplasma. It did take her a few weeks to regain all of her strength though.

March was a month of challenges for Nick. His oncologist at Children's Hospital in Birmingham consulted with a surgeon about going in and surgically removing the cancer deep in Nick's pelvis. The surgeon was not comfortable making a decision without a recent biopsy/pathology... The last biopsy was from a couple of years ago. So, we scheduled the biopsy for spring break, much to the dismay of the kids who were hoping for a reprieve from doctors. The biopsy was highly specialized due to the location of the mass, the type of cancer, and the amount of tissue needed to get "good" samples. Nick did very well with the procedure. He was back up and around by the time spring break was over.

It took about 6 weeks to get the final pathology results. The results were not encouraging. The tissue samples showed that the Epstein Barr Virus (EBV) that "drives" the PTLD/lymphoma in Nick's case, has invaded the nucleus of each and every cancer cell. It has also attached itself to the RNA inside each of these nuclei.

Basically, this means that the reason we can't get the PTLD into remission is because the EBV is telling it to stay alive. The oncologist said that the only way Nick will reach the place of remission or cure with the cancer is to cure/kill the EBV. Since EBV is a virus, there is no cure. There are only medications to control or treat the symptoms. The PTLD/lymphoma is a symptom of the EBV infection.

What does this mean? It means that Nick can not stop chemotherapy without a lot of prayer, thought, and consideration given to the potential outcomes.

What are the potential outcomes? If we stop chemotherapy, the cancer could spread like wild fire and the chances of getting it back under control are slim. If we stop chemotherapy, the cancer could just go away never to be seen or heard from again. If we stop chemotherapy, the cancer could lay dormant for an unknown period of time.

If we don't stop chemo, what happens? Well, the cancer could become ineffective in continuing to control the growth of the cancer. The chemotherapy could cause secondary cancers in other organs of Nick's body. The chemo could continue to control the cancer it's been doing for a while now.

The decision we (me, Nick, and the oncologist) made was to continue on with the current plan. The chemo Nick is currently receiving doesn't have too many side effects. Nick's body is handling it very well. The cancer, although not gone, is under control. Nick's quality of life is exceptional considering the circumstances.  In the words of the oncologist, "We don't need to fix what ain't broke." Nick and I agree wholeheartedly.

The surgeon decided that the risks of the surgery far outweighed the benefits. Yes, the benefit would likely be cure, but no guarantees. The risk, due to the extreme nature of the surgery, is an extremely high death rate. Other risks involved things like paralysis, loss of use of one leg, bowel obstruction, damage to his transplanted liver...I could go on and on.

I am finally able to really type this out and READ it. I've been struggling with how to relay this information for months now. I needed time to come to terms with our "new" reality. The new reality now consists of Nick being on maintenance chemotherapy for the rest of his life, immune therapy (IVIG) for the rest of his life, going to the oncologist monthly for the rest of his life...unless a miracle takes place.

April showed itself to be full of promise and "happily ever afters"...yes...I was asked to marry the man I had been in a serious relationship with. I said yes and we moved full speed ahead with planning the wedding.

Both Nick and Kacie were thrilled with him. I loved him tremendously and loved his boys like they were my own. Yes, everything is past tense for a purpose.

Nick was at the end of his school career. Preparations and the craziness that goes along with being a graduation senior commenced. He still handled his chemo treatments. He still did his thing with the volunteer fire department.

Kacie was in full dance recital mode and end of the school year mode. She was also inducted into the National Junior Honor Society.

May was not so good. My relationship, engagement, and wedding plans came to a screeching halt on Mother's Day. I'm not going to share the gory details, but it was an extraordinarily painful time. While it's not the worst thing I've ever gone through or dealt with, it has been tough. The decision to completely end things was not mine. I am trusting that God knows what is best for everyone involved. My kids were hurting and are still hurting some. I don't know about his kids. I assume they are hurting too. I am getting better with each and every day. There are some days that are tougher than others. No day has even come close to my worst day ever though.

In spite of all of the craziness and heartache, I still finished up my spring semester with a 4.0! I'm currently taking my last two classes at Calhoun in preparation for my fall transfer to Athens State University. I found out yesterday I have been accepted into the School of Education. Come August, I should be well on my way to finishing my bachelors in elementary education.

There were two best parts of May.

One best part of May was watching Nick walk across the stage and graduate high school. I was able to witness an event that Keith and I were told would NOT happen 17 years ago. We'd been told several times that Nick might not be able to do _______ (fill in the blank), yet Nick HAS done it! Nick is my walking miracle. I thank God that He chose me to be the momma to that boy.

The second best part of May was watching Kacie dance her heart out during her eighth dance recital. She truly amazes me. God has given her a gift of expression that is amazing. Kacie ended her 7th grade year with straight A's...on top of dancing 9 hours each week. Amazing...I don't know how she does it.

So, now it's June...right before Father's Day. I'm a little melancholy today. I miss the men in my life who aren't physically present anymore. My papaw, T.R. Moreland, died on May 8, 1995. My dad, David Keith Ward, died on March 15, 1997. My grandpa, John Thomas Ward, died on December 3, 1997. My beloved husband, David Keith Baxley, died on July 7, 2009.

Each and every one of these men were Godly men. Each of these men left a gap when God called them home. Not a day goes by that I don't think of one or more of them. Nick doesn't have any memories of my grandfathers or my dad. Kacie wasn't even born yet. She thankfully has some memories of her Daddy, but I work hard at keeping those memories from fading. She only had her Daddy for 9 short years.

Hug your daddies if you still have them. Hug your babies too. Life is too short and unpredictable to take ANYTHING for granted.

If you're on Facebook, I've started a new group, "Keeping Up With The Baxley's", to use for more frequent updates on Nick and our family. The email list is just not feasible for me to do anymore. I'm still planning on writing here too as time allows.

If you aren't on Facebook, please let me know. I'll come up with an alternate way of communicating updates.

I hope you are all having a wonderful summer.
Thank you for continuing to pray us through these hills and valleys.

As always, we remain...

In HIS Grip,