Sunday, November 27, 2011

November 27, 1995

Fifteen years ago today, my world changed forever.

It was mid morning and 15 month old Nick was scheduled to meet with his new pediatrician for the very first time. Six months earlier, Keith and I had moved our young family to the Huntsville area. Nick's other baby checkups were done with me driving the hour to continue seeing our pediatrician "back home". On this day, we were taking steps to make Huntsville our home.

Nana came with me to Nick's checkup, the same way she had done since Nick's birth. Keith was working that day. Every checkup Nick had ever had was perfectly normal. Why would this visit be any different?

We met with our new pediatrician and completely fell in love with her. She was an amazing doctor. She thoroughly examined my sweet boy. She kept me calm, even when sweet baby Nick was screaming. As she is examining Nick, I mentioned this strange little knot that I found in Nick's tummy. As I was mentioning the knot, she found another similar knot a few inches away from the one I found.

After several questions and some more examining, the doctor decided it was necessary to send Nick for some chest and abdominal x-rays. At that time, HIPPA was not in effect. Technicians and radiologists talked to you, the frightened parent, more freely than they are allowed to do now. I was asked if we had been in a car accident. I answered no. Had Nick fallen and hit his abdomen on the edge of something like a table or the edge of a step? No. Was I certain that Nick had not suffered some kind of trauma to his abdomen? Yes I was certain. Nick had not been out of my sight.

I then asked, "What is going on?" "Is something wrong with my baby?"

The answer I was given was that it appeared that Nick had a lacerated liver. What on earth was that?! I hadn't ever heard of anything like that.

Next, we were sent for an abdominal ultrasound. The doctor wanted a different look at whatever was going on inside Nick's little body.

Then we were sent for what would be the first of a lifetime of CT scans. At that point, I called Keith from the hospital. CT scan technology wasn't widely available yet. The hospital was the only place to go for one.

The scans seemed to take forever. Nick got sick and vomited the red contrast all over me. I was no longer calm. It was mid afternoon by this point. Nick had not been allowed to have anything to eat or drink. I couldn't eat or drink. I was crying. Nick was crying. Nana had her hands full. When Keith was finally able to get to the hospital, I felt like my world was being torn into a million pieces.

Little did I know what was yet to come.

Once the CT scans were finished, we were sent home with instructions to let Nick eat and drink. The doctor would call us as soon as the results of the scans were in.

Nick and I headed home. Nana began her hour long journey home. Keith went back to work.

Finally, Keith was home from work. Nick seemed fine. We were on pins and needles. The phone rang. The call we had been waiting on for what seemed like hours and days and hours and days.

Our brand new, first visit, pediatrician told us that four fist sized tumors were taking up lots of space in Nick's liver and abdomen. We needed to have Nick at Children's Hospital in Birmingham at 9:00 the following morning to meet with an oncologist.

Wait a minute...I recognized some words I had heard before: tumor and oncologist. My grandmother had breast cancer when I was 12. I remember hearing words like that in reference to cancer. Dear God! This doctor thought my sweet baby had cancer! This could not be right!

Keith and I made phone calls to his parents and my parents. We held onto each other and our sweet baby. We pretended we weren't scared and worried.

Keith's parents arrived early the next morning to drive us to Birmingham. My mom, dad, brother, and sister began the 8 hour drive from Arkansas to meet us in Birmingham.

We met with the oncologist for what would be the first of many, many visits. The initial thoughts were that these tumors were a benign (noncancerous) condition that happens sometimes when a baby's body doesn't stop making a certain protein after he's born. We still needed to meet with a surgeon to discuss taking the tumors out.

Ok. Whew! We could handle that.

I remember walking into the waiting room and seeing my dad, mom, and family sitting there. They had arrived while we were with the oncologist. I said to them, "They don't think it's cancer."

Funny how some things just stay with you for years and years. I remember seeing my strong, never show emotion daddy tear up.

We met with the surgeon and didn't like him. He had no bedside manner. However, we were assured that he was the BEST surgeon around.

We scheduled the surgery for December 5, Keith's birthday. Another of what would become only the first of many challenges to keep special days...special.

The world changed once we arrived at the hospital for Nick's surgery. Some extra tests had been done during the days since our clinic visits. The surgery to remove the tumors had changed to surgery to take tissue samples. There was a strong indication from one of the tests that the tumors were actually a very rare cancer.

Keith and I were shell shocked. The grandparents were shell shocked.

We went from being a young family who was so very naive, to parents who were being told their 15 month old baby had an incurable cancer that was so rare only 1 in a million children had it. There weren't many, if any, survivors of this cancer either. It was just too aggressive.

That is some of what I remember from the journey that began sixteen years ago today. There is still more to the story, but I'm tired of reliving it tonight. We all know what the end result was, since Nick is still here.

I've told this story before. I've written it before. I may have even shared it here before. I didn't look at the archives to see. I just know that it's on my mind tonight, and I needed to share it. I needed to write it once again. I need to come to terms with the life changing events that took place in what seems like a lifetime ago.

I needed to remember that we were as much in HIS Grip then, as we are now.

Friday, November 25, 2011

Thanksgiving # 3 2011

Holiday season #3 since Keith's death has begun.

Thanksgiving day was very quiet and spent with friends who are family. The time with "blood" family is happening throughout the long weekend.

How are we?

Well...the kids have had a good time. We've spent lots of time together playing board games, eating good food (even though my oven has died...I hoping MLN can fix it), talking, watching movies, not shopping.

*My Lovely Neighbor

Nick commented about the slower pace. A slower pace is not something we are really familiar with. I've really enjoyed the slower pace.

Kacie has been soaking up the time with me. She has been attached to my side. I'm not sure what's going on with that, but it's nice that she still wants to spend time with me. She is a tween!

She has helped me bake a couple of times in the last two weeks. I'm excited that she wants to learn how. I am realizing how mature she is becoming. Wow! It has happened over night.

How have I done with the holiday? To be completely honest, Tuesday night and Wednesday were tough. Wednesday was especially tough. Lots of grief snuck up on me and ambushed me, I didn't think it was still possible for grief to have that much power after so long without any major episodes.

It does, at least with me. I met with one MLC on Tuesday and another on Wednesday. It took me all of Wednesday to shake off the yuck, but I was great on Thanksgiving day. My oven dying didn't even throw me too much of a curve ball. Just made a plan B and made it work.

The other half of MLN and I cooked (ha ha) up a schedule to rotate food in and out of her oven. I was cooking the turkey in my rotisserie, so it was handled.

I am very thankful that I have had another year with my beautiful children. I am thankful that I have friends who are family and love us so very much. I am very blessed.

How can I say that? How can I feel that way when my son has had cancer for the majority of his life and my husband died?

My only answer is how can I not be blessed? Although I have a heart that has been so broken I didn't think it was possible for it to heal, there has been healing. Although the love of my life and my best friend has gone to his heavenly home, I am blessed to have had the time with him that I did. Although my child has fought for life harder than most people ever will, I am blessed to have been chosen to be his mother. Although I am so undeserving of any of the blessings I have received, God gave His Son to die on the cross for me.

How can I not be blessed?

Do I get selfish? Yes! Absolutely! I want a life without so much struggle, without so much constant stress and pain. I want a man to love me and my children with the kind of selfless love we had before. I want to love someone again. I want to be a wife again. I want to share my days and my nights with someone. I want my son well. I want my daughter to experience a life without worry over whether her brother is going to be okay.

Yes, I get selfish. I want what I don't have.

Yes, I am difficult to shop for. I want things that money can't buy. I want things that only the Lord God can provide. I have to trust Him for these provisions.

So, I take my life that is a lot of stress and struggle and make the best of it. I take my children (who were born out of an amazing once in a lifetime kind of love) as they are and love them, try to raise them right, remind them of their dad, have fun with them, and try to make things as normal as I possibly can. As normal as circumstances allow.

That's what Keith and I were doing before he got sick, and while he was sick. That's what I've been trying to do since he died. Be as normal as we can be within the limits of our circumstances.

The circumstances don't define us. We just make the best out of it.

That's something that I want the kids to KNOW as adults. Your circumstances don't make you who you are. It's how you handle the circumstances that make you who you are.

I wish you a happy and blessed thanksgiving. I hope that you have been able to love and be loved.

May we all remember the reason for this season that is now upon us.

Standing FIRMLY in HIS GRIP!


Friday, November 11, 2011

Update on Nick Baxley 11/11/11

Nick had his port for his central IV line removed and replaced on Wednesday, Nov 9. The surgery went very well. There were no complications! Praise God! The surgeon said the line coming out was “sticky”, but it did not break this time. Praise God!

The placement of the new line went fine. There weren’t any complications with that one either. Praise God!

We were able to be discharged from the hospital late Wednesday afternoon. The kids and I spent the night at a hotel near the hospital. Nick did very well through the night Wednesday night. He only needed Tylenol for pain.

We returned to Children’s Hospital on Thursday morning, Nov 10, for chemo, IVIG and a checkup with the oncologist.

The checkup was fine. Nick received his IVIG and chemo.

After much discussion with Nick and the oncologist, Nick has decided to continue on with the current chemo regimen. The “new” chemo has been stopped. The oncologist thinks that it did work in reducing the tumors, but it didn’t make enough difference recently to keep going with it. The doctor also thinks that the enormous amounts of steroids Nick needed while taking the “new” chemo had an impact on the tumors shrinking. The problem with giving that large amount of steroids is the adverse affect on the body...the reason the kidney and blood pressure problems showed up seemingly out of no where.

The chemo that Nick has decided to continue on with is the same chemo that he has been receiving for almost a year now. While it doesn’t appear to be shrinking the tumors anymore, the hope is that it will keep the tumors from growing (aka stable disease). A side benefit would be any shrinkage.
Continuing on with this chemo has very little risk to Nick’s kidneys and the rest of his body. The biggest challenge that we could be facing is if the tumors grow while Nick is on the chemo. That would mean that the cancer has gotten “smart” to the chemo and it won’t work at all anymore. It would also mean that particular chemo combination would no longer be available for use. Once that point is reached, it will be necessary to reevaluate everything.

I will be quite honest and say that I don’t know what changed Nick’s mind. In the conversations he and I have had during the last three weeks, he had complete understanding and even acceptance of the choices he made. The change of heart and mind came Wednesday evening as we were pulling into the hotel. So, we will go forward with Nick’s wishes and let God be our guide.

Another answered prayer came when Nick’s oncologist told us that he is willing to do whatever Nick wants. The doctor has had a very difficult time coming to terms with what Nick wants. The doctor is finally listening to Nick and I believe looking at Nick as being mature enough to make informed decisions.

I finally don’t feel like I am butting my head against a brick wall trying to advocate for Nick.

Now, if I can just get this mess straightened out with Nick’s insurance not paying for any of the “new” chemo that he was given. Please pray for this to be resolved. Right now, Children’s Hospital is billing me for $90,000.00. Yes. That is the correct number of zeros. I’ve done everything I can do from my end. It’s all in the hands of God, the hospital and BCBS. My prayer is that I won’t be held responsible for this. I don’t have 90 grand, and I don’t have room in my budget for a payment plan either.

So, the plan is for Nick to spend the next few days recovering from surgery and chemo. Hopefully, he will be well enough to return to school on Monday.

We will return to Birmingham on Wednesday, Nov 30, for another chemo treatment and more IVIG.

Please continue to lift us up in prayer. I don’t know what specifically to ask for in prayer other than what I’ve mentioned. I know that my prayers are mainly focused on God’s will being done. Please pray as God leads you.

As always, we remain FIRMLY...

In HIS Grip,

Kristy Baxley

Wednesday, November 2, 2011

It's November and other random stuff

Yes I am just coming to terms with the fact that November is here once again. Another year is coming to an end. I'm not really sure where this past year has gone. I am glad that I've survived for what is almost one more year. I'm not really looking forward to this coming year. Still too many uncertainties, especially with Nick's health.

With it being November, it means I have to start thinking and planning for Christmas. Since Keith's passing, I don't enjoy the thinking, planning or doing the stuff that comes with the holiday season. Of course, that's on the long range view.

In the short view, we are one week away from Nick's central IV line (aka port) removal and replacement surgery. That's the thing that is weighing heaviest on my heart right now. The last time Nick had the surgery to remove a port, he almost died. It was 15 years ago. There were some really rare complications. Everything turned out fine, but it was a very frightening ordeal. My paternal grandfather also passed away that very same day. There's a lot of untapped grief and pain that is coming to the surface with the latest developments.

I had convinced myself that I was okay with everything. I'm not okay. I'm afraid of what could happen next week. I'm afraid of the in between. By that I mean the time between whatever happens in surgery and the end of the ordeal. Everything hinges on what happens in surgery.

To add fuel to my nerves and anxiety: The surgeon wants Nick to have a special CT scan, called a veinogram, to look at all of the veins in Nick's neck and chest. This isn't something that has been done with Nick before. The past central IV lines that have been placed weren't this complicated before we even got started. I know that the surgeon wants to have a plan made prior to going into surgery. I feel pretty sure the need for a plan (or several) is two fold. One is likely because of the complications that happened the last time a line was removed. The other is there aren't very many places left to put a central IV line.

Those realizations bring on some weight of the enormity of exactly where Nick's physical health is at. I'm guilty, at least according to MLC, of not realizing the enormity of the burden I've carried for so long. Maybe I don't. Maye it's a self-preservation thing. Maybe it's my version of denial. I don't know. I just know that for the past few days, I've spent more time crying than I have in months and months. I know that the depression is no longer sleeping quietly. The post traumatic stress disorder (PTSD) is making itself known as well.

I feel like I have fallen back into a pattern of grieving that I thought I had left behind. I thought I had finally overcome and conquered that dark, sad place. I am picking up on the red flags of being in that place.

My MLC's are in close contact with me. They are all encouraging me to talk, talk, talk. Use my tools. Be kind and gentle with myself. Listen to my body. Destress as much and as often as I can.

I know that a part of my talk, talk, talking is going to need to be here and in my personal journal. I'm going to have to let it out before it becomes toxic. warned. I don't know what I'm going to be putting here for the next little while. I'm going to try to be as open as I can. I'm not the most open person by nature. This should be interesting...