Another tsunami...

These last two weeks have brought a tsunami of emotions with them. I think I have experienced every emotion a human being can possibly experience...from joy and peace to distraught and helpless...love to anger...hope to hopelessness...you name it and I likely have experienced it at some point in the last 2 weeks.

I've found myself in a place that I haven't been since the first months after Keith's death. It's hard to be me right now. It's harder than hard to go through this life that I've been given. I've watched my son suffer over and over and over again for 18 years with no real end in sight. I watched, helpless, as cancer ravaged my husband's body. I held his hand while God called him home. I'm walking beside both of my children, trying to raise them up the way Keith and I had planned...except I'm doing it without him.

I'm now walking, watching, and waiting with my son as cancer is trying to ravage his body AGAIN. I'm watching, helpless, as he bravely goes into a room lined with lead where laser beams come out of the walls, go into his body, and try to kill this horrid disease. The very same disease that claimed the life of his dad.

I'm sitting in the same chairs I sat in while waiting for his dad to come out from the very same room for the very same reason.

18 years ago on November 27, 1995, I was told that my son would not live, because an incurable cancer was ravaging his little body.

17 years ago on September 3, 1996, I gave my son to the doctors who were going to replace the cancer filled liver with a donor liver. I was told I may not see him again.

16 years ago on December 5, 1997, I was told that if my son lived to see the morning it would be a miracle, because the central IV line planted inside his chest broke, traveled through the left ventricle of his heart, went down into his lungs, and punctured one of them.

15 years ago in 1998, I was told my son would die, because he had developed sepsis (blood infection) after having his tonsils and adenoids removed.

I can't keep going right now. I can't keep the list going. It's too overwhelming. I'm reading it and I see God's hands in each and every event. I know He was there. I know He IS here. I just have this mother's heart that has been bruised and broken so many times that I'm not sure how much more it can take. How much more heartache can it take? I never ask that. I NEVER ASK THAT! I do not even think that. Why am I thinking it now?!

I am trying to remain positive...hopeful...joyful...
I am finding it very...very...difficult.
I am just a mom whose family has been ravaged by cancer.
I...am...tired...of...watching...this...disease.

Mind Over Matter

I simply can not concentrate today. I REALLY need to concentrate on schoolwork. I have a major test due by tomorrow that I haven't even finished the study materials for yet. Ugh...

What is keeping me from doing what needs to be done? I'm not exactly sure that it's one thing, but I know that a large part of it is Nick's health.

He was mapped and marked yesterday for radiation treatments. Yeah. We went from thinking Tuesday was a consult to being told "yes, Nick is a candidate for radiation. We'll call you once we speak with his regular oncologist." to a phone call the very next day that Nick is being mapped and marked on Friday morning.

I've been working since literally leaving the doctor's office on Tuesday morning, so I guess I really haven't had the opportunity for all of this to sink in...until this morning. It's Saturday and life is slower for me today. I can't get it off my mind.

My emotions are trying to be all over the place. I'm not really letting them. I'm not sure what or how I'm feeling. I'm nervous and a little scared. I'm trying to keep from comparing all of this to what happened with Keith. My brain is telling my heart there's nothing at all similar, but my heart is screaming that YES THERE IS!

I'm trying to keep a hold on all this jumbled up junk and not let it run rampant, but it is difficult. I need to talk about it. I can't though...not while the kids are around. Nick doesn't need to be scared any more than he already is. Kacie either.

Nick has PET scans on Monday morning. There are some questions about the degree of activity from the last set done at Children's in August the oncologists here need answered before radiation begins. The radiation oncologist mentioned Tuesday that the scans from Children's indicated a slight increase in activity. Sigh...

I guess I'm also taken aback by how fast everything is moving and changing. It's been a long, long time since things have changed this quickly with Nick's medical treatments. Usually it's been because his health was really in danger and fast action was necessary. It's not that way this time, but my heart doesn't seem to understand this.

Update on Nick 11/5/13

Well, I'm not exactly sure where to begin. First, THANK YOU for all of the thoughts and prayers. God definitely went before us and prepared the way. Second, I had an unexpected opportunity to talk with Dr. McCarty's nurse, Jill, who lost her husband in September. We didn't talk much, but I was able to give her some encouragement for her journey.

On to the update...Dr. McCarty was definitely ready for me and my questions! He had been studying Nick's entire medical history extensively. He talked with other radiation oncologists in the practice. They all agreed that Nick is a good candidate for stereo-tactic radiation therapy. :-) Dr. McCarty believes with 90% certainty (which is really, really good in the oncology world) that this radiation will sterilize the EBV that is driving the production of the cancer cells and kill the remaining cancer cells. He is also confident that the liver transplant will be protected. The side effects should be minimal. The amount of radiation Nick will receive will be mild in comparison to what the majority of folks receive. The estimated time frame for the radiation treatments is anywhere from 2 to 4 weeks of treatment. That is just an estimate until Dr. McCarty meets with Dr. Waples to coordinate chemo and IVIG schedules. Dr. McCarty also said he would like a fresh set of PET scans for use in planning and mapping Nick's radiation treatments. (It's a fascinating process.)

The only other major hurdle that we need covered in prayer is the financial side of things. I found out all this information today.

For all of Nick's life, he's had medical insurance that was a group policy. When he turned 19 in August, he lost his group coverage through the AllKids program. He aged out of the program. Nick isn't eligible for Medicaid, so I found him an Individual Blue policy from BCBS. It turns out that this policy is not all that great compared to what we are used to having for him. It isn't going to pay for all of Nick's medical costs. Please pray for us and the powers that be as Nick and I submit financial statements to receive assistance in paying for Nick's radiation, chemotherapy, and IVIG therapies. For the entire 18 years of Nick's health struggles, we have been blessed with excellent insurance coverage. Now...not so much when one chemo/IVIG treatment is $30,000.00 and I'm responsible for 20% of that cost....yeah...you read that right...I am responsible for paying $6,000 every 4 weeks. That isn't including the cost of the co-pays or the radiation treatments. The co-pays are $50.00 every time Nick walks through the door to see a specialist. He sees Dr. W once every 4 weeks and will see Dr. Mc at least once a week for the duration of the radiation treatments. I'm not sure about the co-pay amount for the radiation treatments yet.

As you can see, there is a HUGE need here. I don't know of any way that I will be able to pay even 1/10th of what is owed, especially while I am in school. Nick has been denied disability benefits. We are meeting with an attorney next week to fight this.

Pray as God leads Warriors!!!

We are definitely remaining...

In HIS Grip!
~Kristy

October Already?

It's really October already?! Wow. Time sure flies when you're running around like a chicken with it's head cut off.

The kids and I are crazy busy and have been for awhile. Well...I'm crazy busy and the kids are learning to deal with it.

I'm going to hit the highlights of the last few months.

Nick: He is now receiving his chemo and IVIG treatments in Huntsville. Nick was able to transfer his care to an adult oncologist close to home. His adult oncologist is the same one that treated Keith. Dr. W has many, many thoughts and ideas that are new to us. I'm really feeling optimistic about the changes that are taking place in Nick's chemo treatments. Nothing has been decided or changed yet, but Dr. W is seeking the advice of one of the top lymphoma specialists in the nation to guide our decision making. Nick will have CT scans done on October 22. We should have the results on October 23. Those test results will be our guide to the next steps we take in treating Nick's cancer.

Nick is still working at Baumhower's. He still really enjoys working there. He has had the opportunity to try his hand at a couple of new to him positions that will eventually allow Nick to be trained in other areas.

He was denied disability by SSA. Yeah, bummed us too. I've really been struggling with what the next step should be. My time to file an appeal is just about up. I'm not sure what to do. God hasn't shown me the right path to take yet.

Kacie: She's in 8th grade and doing well. She enjoys her teachers, but not the homework. Kacie is still dancing. This is her 9th year. She isn't on any of the performance teams this year. This has been a blessing for both of us. I think Kacie was getting burned out and needed a break. I was burned out and needed a break.

Me: I'm taking 15 hours this semester at ASU. I LOVE the program I'm in. The last 2 weeks I have spent doing field experience training in classrooms as a Teacher's Assistant. I still have 4 days left to fulfill the classroom days for my course requirements. I also have attended a three day training session with Alabama Mathematics Science and Technology Initiative (AMSTI). I am now Level 1 AMSTI certified in Mathematics. It feels good to know that I am building the foundation for my calling to be a teacher. Even though the last 2 weeks have been completely and totally exhausting, the experience has been invaluable. There are so many things I have learned that I wish I had known when Nick was in elementary school. I have learned so much about learning disabilities, special needs, English language learners, the "whys" behind math procedures...I can go on and on and on. I have also learned some things about myself. 1) Being a full-time student, working as much as possible, and being a single parent is EXHAUSTING! 2) Being mentally tired can make you physically ill just like being emotionally tired does. 3) It is important to keep everything in proper perspective. 4) I not only can do this, I WILL do this. I WILL finish this program and have my own classroom. 5) I already knew it, but it's nice to be reminded... I am smart. I am kind. I am important. I am a child of the ONE TRUE KING. I am answering His call for my life, and as long as I keep my eyes focused on Him...it's ALL going to be OKAY!

There is so much more I could write about, but not today. Thank you all for continuing to pray for us. We still need the prayers.

In HIS Grip!
~Kristy

Baxley family update 7/5/13

 Life has been crazy the last several months. I went back to college and worked as much as I possibly could. I also became involved with someone, but things didn’t work out. Kacie finished up dance and the 7th grade. She was also inducted into the National Junior Honor Society. Nick had a biopsy at the end of March, graduated high school, and started his first job.

I’m still in school this summer trying to finish filling “holes”, so I can start Athens State in August. I have been accepted into their School of Education as an Elementary Ed major.

Nick is working at Baumhower’s Wings. He got the position through Phoenix staffing which works in conjunction with Alabama Dept of Vocational Rehab. Nick really enjoys his position there. The work load is just enough right now.  He is also in the midst of being considered for disability through SSA due to all of his health problems. We have had to accept that Nick is rather limited on what he is able to do both physically and mentally. After much discussion with his doctors, this seems to be the most logical route for Nick. It’s not the path that Keith or I wanted for him, but if it enables Nick to live a satisfying life that has a high quality to it...well...it’s what we’ll do.

The biopsy results from March took awhile to get finalized. The news isn’t the best. Nick still has active cancer. The lymph nodes that were biopsied showed that the Epstein Barr Virus is actually active and multiplying inside the nucleus of each cancer cell. What does this mean? Well, without getting rid of the virus, we can’t get rid of the cancer. There is no cure for the virus, so there is no cure for the cancer. The chemo is serving the purpose of keeping the cancer cells from multiplying, which means the cancer is staying in one spot. It’s not spreading.

We are in a place of very fine balance with Nick’s treatments. As long as the chemo can keep the cancer from spreading, everything is okay. If the cancer spreads, well...that’s something we will address if the time comes. The fact that the EBV is active inside these cancer cells means that Nick can’t ever stop taking chemo. The risk of not being able to get Nick stable again would be very high.

Nick’s kidney function has stabilized finally. The medication to protect his kidneys seems to be working very well. The kidney specialist has told us that Nick can go a year between checkups since the oncologist is monitoring the kidney functions in the blood work. This was good news.

Nick’s immune system is still pretty much nonexistent without the monthly boost of IVIG. The oncologist thinks that Nick probably needs to be reevaluated by the immunologist to make sure that Nick’s IVIG treatments are still on the right track.

Things with the FAP (genetic condition that caused Keith’s cancer that Nick also has) have been stable for the time being. As long as the disease process remains stable, Nick can go a year between scopes and tests.

I think that pretty much catches us up. I know there is a lot of information here. There are a lot of prayer requests and praises too! Thank you for continuing to lift us up in prayer.

We remain... In HIS Grip!  

~Kristy

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 indefinitely...like 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,

Kristy

Wait Training 101 by Karen Ehman

Isaiah 40:31, "... but they who wait for the LORD shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint." (ESV)

Psalm 40:1, "I waited patiently for the LORD; he inclined to me and heard my cry." (ESV)

Psalm 100:1-3, "Make a joyful noise to the LORD, all the earth! Serve the LORD with gladness! Come into his presence with singing! Know that the LORD, he is God! It is he who made us, and we are his; we are his people, and the sheep of his pasture." (ESV)

I've been lax on keeping up with my devotions lately. I don't know why. I just have been. Today, I took the time to read through 3 of my MANY skipped over devotions. The one titled, "Wait Training 101" really caught my attention.

Karen Ehman's devotion is modeled after a Bible study of the same name she has written. She spoke of spiritual challenges much like I experience:

"You pray. You ask. You anticipate God's answer...you must wait.

And wait.

And wait some more."

She compares spiritual "wait training" to physical weight training. Physical weight training builds strength, and so does spiritual "wait training." Isaiah 40:31 is the key verse she uses as the foundation for this Bible study.

For years, Isaiah 40:31 has been an oft repeated one in my house. It was used in Keith's funeral. I have it on a plaque somewhere in my house. What strikes me as this time being different is the how Karen brings up the "what if" questions.

Y'all know I struggle with the "what ifs" ALL the time!

No wonder this got my attention.

Here's what Karen has to say about it: "How can waiting renew our strength? After all, doesn't waiting seem to sap our strength as we worry and fret and drum our fingers impatiently? It's exhausting to play the "What if?" game in our minds: What if this doesn't work? What if God's answer is "No"? What if the thing I fear the most actually happens...what then?"

As I read these questions, I was astounded to realize that even though I thought I have been working diligently to overcome my own "what if" syndrome...I have not overcome it. I've only been ignoring it. The "what ifs" are constantly running as background noise in my mind and heart.

I'm not going to berate myself for it. I am actually thankful that I'm finally aware of it. I have lived with a spirit of fear for so long. No, not the kind of fear associated with phobias. Mine is a fear of failure, fear of disappointment, fear of not being in control of my emotions, fear of what the answer to my prayers will be, and maybe even a fear of succeeding.

Yeah...it's a good thing I'm still going to MLC (My Lovely Counselor). It looks like we've got more work to do.

The realization of these fears of mine explains SO much about myself that I have been wondering about for awhile. Why do I let myself quit something before I reach the end? Fear of failure and fear of succeeding. The "what ifs" kick in without me fully realizing it. They take over, overwhelm me, work against me, and I just stop. I stop the task. At that point, the task seems too big to overcome. Too much for one person to handle. Too heavy of a burden to carry out. So, I place the task into one of my mental packing crates and shove it into my mental closet for safe keeping...until the day the shelf in the closet gets too full and comes crashing down, or until the day when I finally listen to what God has been trying to get me to see for who knows exactly how long.

That is what is going on today. I finally see it. I've encountered Isaiah 40:31 over and over again so many times in different devotional contexts, in different sermons, in different life situations. Until today, I have not encountered the verse THIS way.

Karen Ehman says that the way to keep the worry-laden "what ifs" and waiting from draining us, is to shift the perspective. The way of doing this that works for her is to stop thinking of God's seemingly endless silence in the sense of sitting and anxiously waiting on an answer or response. Instead, shift the waiting to that of a butler, maid, or restaurant server.

This is how she breaks it down.

"Those who 'wait on the Lord'- as in serve Him, cater to Him, help Him accomplish His work; those who take His order and bring Him what He wants- they are the ones who renew their strength.

They mount up with wings as eagles. They walk and do not faint.

As we serve, we become more aware of what the One we are waiting on desires. We become more alert, attentive, and in tune with His wishes. We begin to take our eye off of our problems and fix them on the Lord instead. As we do, we get a glimpse into His heart.

Then, instead of the wait sapping our spiritual strength, it is renewed as we seek to do the Lord's will...to make Him famous...to give Him glory. Even in those long, hard times of waiting for an answer, we continue to serve Him."

In studying this devotion this morning, I also realized something else. While there are other areas of my life that I have not shifted my perspective, there are areas where I have. The main one being Nick's health and the daily struggles we encounter with it. I have not put that one in my mental closet. I have laid it at the foot of the cross and left it there. I do not try to pick that one back up and carry it. I do not let myself entertain the "what ifs". That doesn't mean that they don't stand up and try to draw my focus to them. Of course they do! I have been in the practice of shifting my perspective for so long that I'm no longer distracted by that. I still have to make the decision to leave it all at the foot of the cross though.

My question now is why am I able to do that with Nick's illness, Keith's illness and death, yet I don't seem to be able to do it with some other areas of my life? Hmmm....definitely food for thought.

Obviously God has brought me to this place for a reason. I am choosing to throw open the closet door and open these dusty boxes. MLC and I will be discussing this for some time I imagine.

If you would like to follow Karen Ehman, she has a website and blog at http://www.karenehman.com/.

As always y'all...

continue to remain

In HIS Grip,
Kristy

Just don't know

Have you ever been at a place in life where you just don't know what to do?

It seems like as soon as I get one path figured out, another one...or five...becomes unclear.

I'm at this place of uncertainty once again. This time, it's with matters similar to ones I've dealt with before, yet entirely different at the same time.

Different because the last time I dealt with such matters, I had a lot of wise counsel at my disposal. This time...not so much.

I am hesitant to go into detail about the matter, because I don't want to do anything that could make the situation worse. I am asking you to pray for me though.

I know there are a faithful few that have been such prayer warriors on my family's behalf for so many years. It is you I am asking to intercede on my behalf. God knows what is weighing so heavily on me. I believe that He will hear your prayers and know exactly what they're about.

I am very emotionally "clouded" right now. I can't seem to separate myself from the human hurts and feelings to be able to hear that still small voice. The matter I am asking you to pray about has been building for months and now it seems to be reaching a point where something MUST give. I just don't know what is best. I don't know what God wants me to do or how he wants me to respond.

I am in desperate need for Godly wisdom, discernment, and direction. I do not like this feeling of uncertainty. I am not comfortable knowing that something is keeping me from hearing God.

Thank you in advance!

In HIS Grip,
Kristy

Just an update...my thoughts really

This is just an update. I don't have anything really profound to share. There isn't any new information to share about Nick's health yet. We are scheduled to go back to clinic in the next couple of weeks. 

Nick is cruising along just like usual. He does seem to tire out more quickly on a more consistent basis than he has in a REALLY long time. I think that is due to several factors: 1. He's staying up later at night and still getting up early. 2. The chemo is taking a toll on him. 3. He is a teenager. I think any one of these three is enough to make someone tired. He is dealing with all three at once, and he is living a pretty normal daily life. 

I don't want that to change either. I want Nick to live as much of a normal life as he is able to. He has dreams he wants to pursue. Goals that he wants to meet. I've been thinking a lot about the different ramifications of having the surgery vs not having the surgery. I'm afraid that if he has the surgery, Nick won't be able to pursue his goals and dreams. I am concerned about Nick's ability to heal and recover from such invasive surgery. 

The flip side of my concerns are what it means for him not to have the surgery. If he doesn't have the surgery, the cancer could go crazy and there won't be anything we can do about it. Then he won't even have the chance to pursue his dreams and goals. He'll get sicker and eventually die without a miracle.

Can I do that to him? What do I say to him? How do I express my concerns in a way that won't scare him? So many questions that just don't have answers right now. I wonder if I should suggest palliative care. 

It is so difficult to know what is the best thing for Nick right now. I honestly never really believed that we would be at a place where medical science has nothing for us. Nick's doctors have always seemed to be able to pull the proverbial rabbit out of their hats. It's difficult for me to grasp that it's actually different this time. There is a huge part of me that just simply refuses to believe that we are at the end of what modern medicine has to offer. I just can not seem to wrap my brain around that piece of knowledge. 

There's no foundation for continued treatment. It simply boggles my mind that there isn't anyone else "out there" who has the same combination of health mess that Nick has. Surely we are not alone. Surely Nick isn't the only one out there. 

That's just a glimpse into my thoughts when I let myself think about things. I don't let my thoughts run rampant very much though. That's one reason I haven't posted here very much. I'm not even writing in my private journal much right now either. That wound is just too painful right now. I can't get through the days and nights, my college classes, and being a single mom if my mind and heart are focused on this heavy burden. 

I cast my cares upon the Lord. He alone can set me, Nick, Kacie, and you free. I do know that no matter what happens with Nick, God will see us through this storm...just as He has all the times before. I have no doubts about that. 

As always, we remain...

In HIS Grip,

Kristy

Update on Nick 1/24/13

Nick and I were in Birmingham yesterday for “the works”. We also received the final results of the PET scans Nick had done at the tail end of December.

What I’m about to take you through is complicated. I am going to try to break it down, but if you have any questions, PLEASE message me. I will definitely try to break it down further.

The PET scans had mixed results. The good news...there is NO indication of new cancer. HUGE PRAISES!

While there is no new disease, the existing cancer is persistent in not going away. It’s still there. It is about 3 cm in size. The belief is that it is confined to one large lymph node now, reduced from a large cluster.

Now for the hard part... Dr. H, Nick’s oncologist, has some concerns that are valid.

1) The chemo that Nick has been on for such a very long time puts him at risk for bladder cancer. Dr. H is concerned about leaving Nick on this chemotherapy much longer. Nick has been showing mild symptoms of bladder irritation with each treatment for a while. The symptoms have been mild, but it is an indicator.

2) The only chance we have of getting Nick into remission is to remove the cancer. That is not a task that is easily undertaken. I’ve written for years about the location of this cancer being so deep within Nick that it’s nearly impossible to reach. That was spelled out VERY plainly by the surgeon yesterday. I’m going to share with you the exact information that was given to me.

Nick’s cancer is located in the retroperitenium. That is behind the abdominal cavity. There is a lining that separates the abdominal cavity called the peritoneal lining. Behind that lining is (among other things) the spinal column, the inferior vena cava (which is a main blood supplier), and TONS of lymph nodes. Nick’s cancer is one or more of those lymph nodes. In order to get to those lymph nodes, the surgeon is going to have to go in through Nick’s abdomen, remove his bowels and set them to the side, get through the scar tissue/adhesions left from all the other surgeries, cut through the peritoneal lining, find the inferior vena cava, be careful not to damage that or the spinal column, then literally FEEL each and every lymph node until she finds the ONE that is the offender, remove it (very carefully because it is cancer), then begin the backward track to put Nick back together again.

Yeah...I’m sick to my stomach too. I didn’t share this for shock value. I am sharing it because I AM SCARED. I am not scared of Nick’s mortality. I am scared of the “in betweens”. What is that? That is where the risks of this surgery are at. The what if’s that I have to consider. They don’t think there will be any long term ill effects on Nick’s right leg, but they don’t know. They don’t think the surgery will be as difficult as it sounds, but the recovery is going to be a MONSTER. Keep in mind they are going deeper than any other surgery Nick has EVER had. They think Nick’s body will handle the surgery better than it did several years ago, but they don’t know. There are too many unknowns, like exactly how much scar tissue/adhesions there is to get through. The potential for massive amounts of blood loss is astounding. What if she can’t put Nick back together again? What if the surgery doesn’t work? What if Nick comes out of the surgery worse off than he is now? What if his body just can’t take it and he is left with only partial function of his leg, his bladder, his intestines (which have already been reduced significantly), his kidneys?

So many things I don’t have the answers to. The oncologist shared all of this with me yesterday. Nick was there when Dr. H was talking to us about it, but Nick had been given his mega dose of Benadryl so he was woozy. I am literally sick with this knowledge. I don’t know what to do.

The rest of the story is that Dr. H (oncologist) readily admitted that we are at a place in Nick’s treatment where NO ONE has ever been before. Cure or death has happened before now in every documented case. There are no long term studies to go from. We can’t just stop treatment and see what happens, because we have nothing to go back to if the cancer rages again. We have used up all of the allowable amounts of chemotherapy drugs available to Nick. Dr. H actually said he would be afraid to give Nick more of the chemo’s that have worked to shrink this cancer, because SO MUCH has been given to this point. There are lifetime limits on some of these chemo drugs. Some of them are never fully expelled from the body. The specific one that Dr. H is speaking of is the one that got us to this point of stability. There was no documentation of that specific chemo working. There was no documentation of dosage amounts. At the time Nick received that particular chemo, Dr. H dosed him based on how Nick’s body tolerated each increased dose. Once we reached the point where Nick’s body couldn’t tolerate it any longer, we stopped. Now, we can’t go back to that drug.

The surgeon and Dr. H want to biopsy the mass before any other decisions are made. The surgeon wants to KNOW what she is dealing with before she puts Nick through such a traumatic surgery. Because it has been a few years since the last biopsy, Dr. H agrees that getting another piece of the cancer is a good idea.

So, our next step is waiting on Interventive Radiology involved for this biopsy. The biopsy will have to be done by CT guided biopsy due to the location of the mass.

If they can go in and get a piece, why can’t they just get all of it? Good question. I asked that too. Apparently, this type of cancer, over this long period of time, tends to become hard and “woody” in texture. It also tends to encapsulate itself in some kind of barrier.

They can’t guarantee that they’ll get a piece for a biopsy, but we have to try.

It’s not scheduled yet. There are meetings of minds that have to take place.

Nick did receive his chemo and IVIG yesterday. Although he was pretty worn out this morning, he wanted to go on to school.

I don’t know how to ask you all to pray. I’m still pretty numb and overwhelmed. I wasn’t going to send this out until I had taken some time to sort it all out in my mind. I realized as I was laying in bed, still wide awake at midnight, that probably won’t happen. It’s weighing so heavy on me.

Once I hear something about the CT guided biopsy, I’ll send it out.

In His Grip,

Kristy Baxley

Grief

I found a partially used notebook in a cabinet this morning. As I was cleaning out the used pages, I found this poem I wrote sometime before Keith's death. My guess is that I wrote it sometime in 2008/early 2009 based on the other stuff in the notebook. I wasn't keeping a private journal at that time. If I needed to write, I either posted on here or wrote on the next available page of whatever notebook I was using to keep track of life. I'm reading through it this morning and I feel led to share. This is a very blunt writing. It is very much a "stream of consciousness" piece of what I was feeling. It speaks to me right now as I continue to pray for my little friend Thomas, his mommy and daddy.

Grief

The life that is gone
The days left behind
Happiness and joy out of reach
The cruelty of a life unkind.

The hope of tranquility
Nowhere in sight
Dark tunnel I'm travelling
Where is the light?

Stress and sadness always surround
Too much to take; too weak to care
Hope forgotten and dreams lost
A burden so heavy, no way to share.

Where is God?
Can't He hear me cry?
My prayers no longer answered
No more can I try.

Acceptance of this life of mine
Death seems certain to take my heart.
The ones I love more than life
Why, oh God, is my life ripped apart?

Where are the miracles?
For what do I pray?
When will it all end?
Any price I will pay.

God, do you hear me?
I cry out to you.
Heal them, heal me
As only The One can do.

Pray

Please lift up Thomas Sullivan in prayer.

He is 6 years old and has been fighting medullablastoma for a little over a year now.

A few days ago, Thomas began having seizures. His parents, Tommy and Heather, rushed Thomas to Children's Hospital ER in Birmingham. 

Thomas was put on a ventilator and sedated. A CT scan of his brain was done immediately, but nothing was found. No evidence of a stroke or of the brain tumor recurring.

Thomas continued to have seizures, even though he had been given a lot of anti-seizure medication.

EEG's were done. MRI/MRA scans were done. Still no real answers as to WHY Thomas was seizing so frequently. 

Thomas received several units of blood and platelets. His magnesium levels were extremely low and the neuro-oncologist thought that might be the reason for the seizures. Thomas was given a bolus of IV magnesium.

The seizures lessened to the point they were only noticeable on EEG. 

A lumbar puncture was done so that the doctors could test Thomas' spinal fluid for cancer cells and infection. 

This sweet family found out this morning that there are cancer cells in Thomas' spinal fluid. The medullablastoma is back. It has come back while Thomas is still receiving chemo. 

This is very ominous news. The cancer is believed to be very aggressive at this point. The neuro-oncologist did not give Thomas' family very much hope.

Thomas was successfully taken off the ventilator this evening and he is breathing on his own.

Tomorrow, the neuro-oncologist will meet with Thomas' parents and discuss what their options are. 

Please, please pray Warriors! This family needs so much right now. Please pray for peace, wisdom, discernment, HEALING!!! Please pray for Dr Reddy (neuro-oncologist) as she and her team look for some kind of treatment option for Thomas.

You all have been so faithful to pray us through our trials with Nick's health, Keith's cancer and death. 

Please lift this precious child up to the throne. These are personal friends of mine. My heart is breaking for them. 

In HIS Grip,

Kristy