Sunday, October 30, 2011

Taking a deep breath

I've had to do that several times during the last few days.

I got a call from Birmingham on Friday. The surgeon wants CT scans of Nick's veins in his neck and chest in order to make a plan for the port removal/replacement.

This isn't standard operating procedure. Well, at least not one we've encountered before. Maybe it is when someone like Nick has had several central IV lines in the past. Maybe the surgeon has looked back at the last time a port was taken out and saw the details of the nightmare that minor procedure became. There are a lot of maybes...

I was truly filled with the peace that passes ALL understanding...until Friday's phone call. The doubts and fear came flooding in. I've had to dig deep to find that peace again.

I've had to decide to "doubt the doubter", as Keith used to say. Just tell old Satan, "I doubt that!" Then let that be it.

This morning's sermon at church was exactly what I needed to hear. It was based on the Scripture in Acts 12, where Peter was freed from his chains by an angel of God. I love that story. It's one of my favorites.

Pastor went on to say that God is so sovereign that He doesn't have to explain why He allows bad things to happen when He has the power to stop them. God doesn't cause bad things to happen, but sometimes He lets them happen.

Boy that's hard to swallow! I know sometimes I want to make God out to be the bad guy. I ask why, whine, complain, and think that the day I kneel before Him I will get the answers I crave.

That thinking is so warped! That isn't it at all. In everything I've read about Heaven and what happens after earthly death, nothing even comes close to indicating a Q & A session with God is going to take place.

I'm not saying that I think any human is insignificant to God. What I believe is that when a believer kneels before the Heavenly Father, all things earthly completely drop away. Everything that was consuming while on earth, no longer matters. All that matters is worshipping the King of Kings...the Great I AM.

That's it. Nothing more...nothing less.

Saturday, October 22, 2011

Update on Nick 10/21/11

****Warning**** Contains lots of information
Both kids and I were in Birmingham this week for lots of tests, checkups, IVIG and chemo.
We were originally scheduled to go last week, but due to some conflicts, we pushed things out a week. It became clear that everything could not be completed in one day, so we made it a two day trip.
On Tuesday, Oct 18, we met with the kidney specialist (Dr. F). He is a wonderful doctor. I really like him and his approach to Nick’s unique health situation. Dr. F has extensive knowledge in dealing with kids who not only have kidney problems, but more specifically kids who are transplant patients that have kidney problems. He answered 95% of my questions before I even asked them. He told us that 80% of liver transplant recipients develop kidney problems ten years after the transplant. Nick is 15 years post transplant.
Dr. F is not surprised that Nick has begun to have blood pressure problems. He said that Nick would likely be developing problems without all of his other medical issues. Once you factor in ALL of the other health issues Nick has and has had, it is a perfect recipe for kidney issues.
Right now, the issue is Nick’s blood pressure. Dr. F ran a bunch of blood tests that check for several different enzymes and proteins in Nick’s blood. These different things give Dr. F an idea about how well Nick’s kidneys are functioning. We don’t have the results back yet. The most basic kidney function tests have been routinely checked for years with Nick. Those results are within normal ranges. The tests that Dr. F is looking for are specific measures of enzymes and proteins the body only releases when there are kidney problems present. Nick’s blood pressure medication has been changed in anticipation of the results showing that Nick’s kidneys are releasing some version of these proteins or enzymes.
So, what does all this mean? Basically it means that Nick’s kidneys are beat up from all of the years of antibiotics, chemo, illnesses, transplant meds, steroids, surgeries, etc. Everything has a cumulative effect on the kidneys. Dr. F said that our plan of action now is to control the problems that come up and protect the remaining kidney function. His belief is that Nick will continue to have kidney problems. We will try to control what happens as it comes.
We also found out on Tuesday that Nick’s port that is implanted in his chest is no longer usable. I really can’t complain. Nick has had this port for 5 years. Nick will be having surgery to remove this unusable port and replace it with a new one on Wednesday, Nov 9.
The last time Nick had this surgery he had several very rare complications. Please be in prayer that everything goes according to God’s will.
After working for quite a while to access the port and finally finding vein access for a traditional IV, Nick was able to receive IVIG on Tuesday as well.
We spent the night at a hotel and returned on Wednesday morning, Oct 19, for CT scans and a checkup with the oncologist (Dr. H).
The results of the CT scans are not what we had hoped. The scans showed that the three tumors have only shrunk marginally. Nowhere near enough to say that any of the chemo has been working effectively. After much discussion, we all (Nick, myself, and Dr. H) decided to stop chemotherapy.
Nick received a dose that day. He will receive one more dose on Thursday, Nov 10. This will only be the “old” chemo. The “new” chemo was not given at all Wednesday and won’t be given again. Nick has pretty much received all that he can for right now.
Dr. H is going to repeat CT scans in about 4 months (I think...lots of numbers were thrown around) to see what’s going on with the cancer. If the cancer remains stable, Nick will remain off of chemotherapy. If the cancer grows and Nick isn’t “sick”, we will probably keep holding. If the cancer grows and Nick gets “sick”, then we’ll start back up the chemo. This is all with the understanding that this same non-aggressive chemo approach will likely not work.
Why not take a more aggressive approach? Firstly, Nick doesn’t want to. His body, his right. I whole heartedly agree with him. Secondly, Nick had aggressive chemotherapy when he was a toddler. He suffered kidney damage, heart damage, and hearing damage as a result of that chemo. Risking what fragile health Nick has left isn’t worth it, especially when there isn’t a guarantee that it will work. Thirdly, at the end of everything, Nick still has familial polyposis. There isn’t a cure. It will become cancer one day. It can not be controlled. I have done the research and all of the medical intervention available to help maintain some control over this disease is very invasive and aggressive. It means removal of portions of affected organs (i.e. stomach, pancreas, liver, small intestine), insertion of a feeding tube at some point, and more surgeries.
We don’t know for certain that any of these worst case scenarios will happen, but there is medical documentation that these circumstances have happened with people who only have one of Nick’s health problems. I have yet to find documentation about someone with all of Nick’s health problems.
I don’t know what to ask anyone to pray for at this point. Wisdom, not only for me, Nick, and Kacie, but also for the doctors...especially Dr. H. He has been Nick’s oncologist for 16 years. He is really having a tough time dealing with the reality of Nick’s health and the decisions Nick and I feel it’s time to make.
The only other thing that I know to pray for is God’s will be done. That’s how I’m praying and have been. If it’s God’s will that Nick be healed here on earth, then so be it. If not, then God give us what we need to endure.
I don’t want to make this sound dire, yet I’m afraid that I have. I don’t want to sugar coat anything either.
Things are not dire with Nick’s health right now. Without a miracle from God, it can certainly get that way.
Please do NOT hesitate to ask me any questions! Answering questions helps me to better understand what the doctors are telling us.
Thank you for your continued thoughts and prayers.
Please continue to lift us up.
As always, we remain...
In HIS Grip,
Kristy Baxley

Tuesday, October 4, 2011

Moaning and groaning

Yep...that's what this one is going to be, moaning and groaning.

Well...maybe not.

I really don't know what this post is going to be about. I just know that I need to clean out some of this clutter that is taking up lots of room in my mind.

I have found myself face to face with the past in recent days. Lots of happy memories have come flooding back. Memories that I have not been able to recall in a very long time. It's not that I had forgotten the happy memories. There was just so much that was really tough to deal with that there wasn't any room or time for the happy.

When the flood of memories came, it washed over me like a tidal wave. I thought it was going to take me under at first. I wasn't in a place where I could stop what I was doing and deal with the memories and emotions. I shelved it until later.

Later showed up the following morning. I was sad and couldn't figure out why. I didn't feel good physically or mentally and couldn't figure out why. After taking some time writing in my journal and putting all of the "tools" MLC has equipped me with, I figured out the link between all of the good memories and my grief.

Yep...that's right. Another episode of grief. UGH! I asked one of the MLC's if this kind of stuff is ever going to stop. He said it's a yes and no answer. There will always be grief, but it won't always be this strong.

I honestly am still surprised at the power the grief has at times. I don't have the constant heartache from grief anymore. I am more prone to "ambush moments" now. I classify the barrage of happy memories as an "ambush moment". It was not something I was expecting. I didn't anticipate it in any way. It just happened.

Why did the onslaught of happy memories cause me grief? According to MLC, it's because I haven't been able to spend as much time since Keith's death remembering the happy times. Nick's cancer has prevented a lot of that from happening. I have many extenuating circumstances that are not common in people who have lost a spouse. Most widows aren't also dealing with a child who has cancer.

I have been grieving the loss of the life that was. The life before Keith got sick. The life that we lived between Nick's first cancer and Keith's diagnosis.

There was a lot of life that happened in that short period of time. A lot of good life that happened. We were living a pretty normal, routine least by our standards.

It's difficult to look back on the happy times. It has been difficult for many, many years.

I have also realized that I can't move forward with my life now until I accept the past and everything that comes with it.

Healing hurts, but it is a necessary pain if I want to live life.

I am finding out that life can be fun. I guess that means I have to hurt in order to heal.