Thursday, January 24, 2013

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

Thursday, January 10, 2013


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.


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.

Wednesday, January 9, 2013


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,