Friday, December 30, 2011

Update on Nick 12/30/11

It’s been a little while since I sent out an update on Nick. Things have been pretty routine. Nick was in Birmingham last week for chemotherapy, IVIG, and checkups with the oncologist and the kidney specialist (aka nephrologist). Everything on the oncology side checked out okay. Nick got his chemo and IVIG without any problems.

The checkup with the nephrologist was Nick’s first follow up since being put on blood pressure medication. The doctor is very satisfied with the way the medication is controlling Nick’s blood pressure. The doctor wanted Nick to have a special scan of his kidneys in order to check for scarring. The scan is called a DMSA scan and falls under nuclear medicine. It is very similar to the PET scans that Keith and Nick had in past times. This one involves less radiation though.

Nick and I went back down to Children’s Hospital yesterday (Wednesday, Dec 28) for the DMSA scans. I don’t have any final results yet, but as soon as I do I will pass them along.

I’m not totally clear on what good results are for this scan. Honestly, I’m confused after speaking with the nephrologist about it prior to the scans. I’ve decided I’m not going to pass along any information that I have right now until I get some things clarified. Just pray that the doctor sees what needs to be seen and God’s will be done. It would also be good if the kidney problems would just be healed.

Right now, there aren’t any other tests scheduled. The oncologist is debating on how soon to do the next round of CT scans.

Due to scheduling conflicts, we get an extra week off before Nick’s next chemo treatment. I will say that I am not sad about that! Any kind of break is greatly appreciated!

We are scheduled to return for chemo and IVIG on Jan 18. Please continue to pray as God leads. I also ask that prayers specifically for Nick’s immune system be lifted up. Going the extra week stretches the protection that the IVIG provides. Pray that Nick’s immune system can stay strong. He is on some antibiotics because of some congestion that surfaced a couple of days following his chemo. That’s being very proactive, but with the Christmas holiday and all the contact with people, it was better not to take any chances.

I hope this finds you all well. I hope that you and yours had a very blessed Christmas. We certainly did!

In HIS Grip,

Kristy Baxley

Sunday, December 4, 2011

Update on Nick Baxley 12/4/11

I’ve taken the days between our latest visit to Birmingham and now to digest some new information. We have also been incredibly busy since coming back from Birmingham.

Thank you for the continued thoughts and prayers. Nick is feeling great. He seems to have completely recovered from the surgery to remove and replace his port. The new port was very easily accessed on Wednesday, and it worked beautifully! What a praise!!!

Nick had his scheduled chemo treatment on Wednesday, 11/30. He has done very with that as well. He hasn’t had any sickness. He does tire quickly though. That is just another one of the side effects of being on long term chemotherapy.

From the oncology side of things, Nick is stable and doing well. His blood counts are holding steady. His IGG level is steady as well, as long as we continue with the IVIG infusions.

The new information I received is from the kidney specialist. All of the tests that were done on our initial visit with Dr.F have led him to diagnose Nick with Chronic Kidney Disease Stage II (mild). That is copied exactly as it is printed on my copy of Nick’s diagnoses.

I don’t understand a lot about Nick’s latest medical issue. The kidney’s are a part of the body that I haven’t had to learn a whole lot about. What I do know, I had to learn due to the kidney problems created by the chemotherapy Nick was on when he was little. So, I am learning as we go.

The damage caused by that particular chemo drug 16 years ago is what initially set this new diagnosis into motion. Nick’s kidney function was watched very closely for many years after he received his last dose of that chemotherapy. Nick’s basic kidney function blood levels eventually returned to normal and we didn’t really think much of it until years later.

When Nick had his colon surgery in 2005 that had all of the complications, he also went into Acute Renal Failure. That was when we began to realize that Nick’s kidney issues were far from being as stable as we had believed. The complications from the surgery and very strong medications necessary to treat the infections caused Nick’s kidneys to stop functioning for a brief period of time. The doctors were able to get Nick out of renal failure, but the episode had left Nick’s kidneys scarred. Nick began chemotherapy a year later for the first round of PTLD/lymphoma. During the five years since, Nick’s kidneys have seemed fine until this past summer.

At the end of this past summer, Nick began to have blood pressure problems. Nick was receiving a lot of steroids at the time, and that was thought to be the culprit. As the summer moved into fall, Nick’s blood pressure did not come down. Coming off of the extreme doses of steroids did not help either. That is when the oncologist decided to consult with the kidney specialist.

That brings us up to this past week.

The nurse for the kidney specialist and I talked a few times this week. She confirmed that most of the extensive blood tests to check Nick’s kidneys were within normal ranges. There was one test that was not. This test checked the renin levels in Nick’s blood. This level was high. (I haven’t done enough research yet to be able to really explain renin and what it does.) What I do know is that the high renin level means that the kidneys are in a cycle of continual damage.

The damage that is being caused can not be repaired. The best case right now is to stop the damage cycle. Basically, Nick’s kidneys won’t get better, but hopefully we can stop them from getting worse.

More tests are scheduled to be done on December 20 and December 28. The December 20 tests will be blood tests to recheck the same levels from the initial visit. The December 28 visit will be for a special scan that will allow the kidney doctor to see how well Nick’s kidney’s are actually functioning. Nick will be injected with a dye and after 4 hours, he will have some kind of scan that will track where the dye went etc. (Again, another thing that I don’t know much about and haven’t researched yet.)

The December 20 visit will be combined with the next round of chemo and IVIG. The December 28 visit will be strictly for the special scans. Yes, two visits very closely together with Christmas sandwiched in between. SIGH...

The good news I am focusing on is that the new blood pressure medication the kidney doctor started Nick on 6 weeks ago is working to control his blood pressure. What impact does this medication have on stopping the damage cycle? Honestly, I don’t know. I hope that the fact that Nick’s blood pressure is responding means the damage cycle is being interrupted.

I know that this is a lot of information to digest once again. When it’s overwhelming for me, I know that it has to be overwhelming for everyone else too.

I don’t know how to ask you all to pray. I am simply praying for God’s will to prevail. I am resting in the knowledge that whatever happens, Nick WILL BE HEALED.

As always, we remain FIRMLY,


Kristy Baxley

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...

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.

Saturday, September 24, 2011

Update on Nick Baxley 9/24/11

Nick did very well with the new chemo yesterday.

He had absolutely NO REACTION! PRAISE GOD!

I was able to speak with the oncologist about the blood pressure vs. possible kidney issues. He does NOT see any evidence in Nick’s lab work that measures kidney functions to indicate that Nick is having any kidney dysfunction at this time.

Yes, I said at this this time. The oncologist feels that the reason the kidney specialists want to evaluate Nick is because he has a history of kidney damage and one occurrence of failure. If they evaluate Nick now, they will hopefully be able to catch a problem early on.

The oncologist also told me that the type of damage Nick has to his kidneys does not typically cause blood pressure problems. He DOES believe that the blood pressure problem is due to an accumulation of everything: lots of steroids, lots of chemo, lots of long term medications, etc.

I really wish he would have told me this on Wednesday, but...

I am not going to worry about this. I simply can’t. It is too overwhelming. There are just too many unknown factors at this time. God’s in control and always has been.

Nick’s blood pressure did show a little improvement yesterday. The oncologist feels like the blood pressure medication is making a difference, so Nick will keep taking it until further notice.

We have a couple of weeks off until the “week of craziness” begins. All of the scans (PET and CT) will determine how the chemo treatments continue.

Please pray that the scans show no cancer.

In His Grip,

Kristy Baxley

Thursday, September 22, 2011

Update on Nick Baxley 9/22/11

Nick and I were in Birmingham yesterday (Wednesday, 9/21) for another checkup, chemo, and IVIG.

Nick’s blood pressure was high when his vital signs were checked upon arrival. It was rechecked a few times prior to the doctor coming into the exam room. Nick’s blood pressure stayed up.

The doctor decided that since Nick has not been on the high dose steroids for about 17 days, the increase in Nick’s blood pressure is likely due to the long term stress of everything going on within Nick’s body: the continued large doses of steroids, chemo, etc..

The doctor decided to consult with kidney specialists before putting Nick on any medication to bring the blood pressure under control.

Why? Well, the answer the doctor gave me is they know more about that than he does. I have some other thoughts that MAY (Read that this next stuff is simply my thoughts/fears. Nothing has been confirmed. This is simply from what I know or suspect.) also be involved with the oncologist’s decision to bring in yet another specialist.

When Nick was a baby, the chemo that he received for the liver cancer caused kidney damage. The damage was not severe enough to warrant any dialysis or further treatment. Over the years, Nick’s kidney function stabilized and we really didn’t have to pay as close attention to things.

When Nick had his colon surgery in 2005 and had all of the post surgery complications, we found out that Nick’s kidney’s were more fragile than anyone (even the doctors) realized. Nick went into what is medically known as Acute Renal Failure. In English, this basically means that Nick’s kidney’s had stopped functioning properly. With medical intervention, the doctors were able to pull him out of that. (Acute basically means that it just happened that one time.)

Since that time, we have been very careful with Nick’s kidneys. Nick has had to drink lots of water every day to help keep his kidneys flushed out and to stay properly hydrated.

All that being said, my thoughts/fears are that the oncologist has called in the kidney specialists because Nick’s kidneys may be showing signs of stress again. High blood pressure is a symptom of kidney problems. Since Nick already has documented kidney damage and one episode of acute renal failure, it is a logical concern that something could be going on that needs attention.

The oncologist did not say this, but based on what I know, this is a very valid concern.

Please, please pray over this. Nick developing kidney problems, due to all of the stress on his body as he has grown up, has been a fear for 16 years.

Nick began taking the blood pressure medication last night. When we go back to clinic in the morning (Friday, 9/23) if his blood pressure isn’t better, the dose will be doubled.

Nick will also be evaluated by the kidney specialists in three weeks. I don’t know anything further than that at this time.

I’m trying really hard not to borrow trouble. Nick and Kacie don’t know exactly how deep my concerns/fears run. I explained to both of them that sometimes when people are on chemo for a long time, all of the medicines and steroids can cause problems with blood pressure. All of that is true and it is what happened with Keith. That’s all they need to know for now.

Onto the rest...

Nick received the “old” chemo and IVIG yesterday. Nick did very well with it. Once the IV fluids were going and the Benadryl kicked in, Nick’s blood pressure stabilized and stayed within normal range.

We will go back into clinic tomorrow (Friday, 9/23) for the “new” chemo. Please pray for no reaction.

I mentioned that we will be seeing the kidney specialists in three weeks on October 13. That is also the same day Nick will have another set of CT scans done. On the Monday of that week (Oct 10), Nick will have PET scans done here in Huntsville.

Also on October 13, Nick will have another checkup with the oncologist, as well as chemo and IVIG.

That is going to be a crazy, busy, stress-filled week!

The only other thing that I can think of right this minute about our visit yesterday is the oncologist mentioned that he isn’t sure how many more doses of the “new” chemo he will give Nick. Nick’s lymphocyte count (the

part of the white blood cells this chemo affects) has decreased dramatically. I think the doctor said Nick has less than 20% of normal. It may even be lower than that. The cells will come back eventually, but in the mean time it is that portion of immunity that is lost.

I know this is a lot of information to digest. I haven’t really digested it all myself. I wanted to get this part out before we go back tomorrow so you all will know how to pray.

Thank you continuing to cover us in prayer. Please continue to pray as the Lord leads!

Trying to remain...

In His Grip,

Kristy Baxley

Wednesday, September 14, 2011

More acceptance

This past Saturday morning I was doing the yard work. I actually enjoy mowing. Who wouldn't? I have a really nice riding mower! I just don't get very many opportunities to use it, because I let the kids (mostly Nick) mow while I weed eat.

Anyway...Saturday Nick didn't get out there to help me quickly enough. I got aggravated with the weed eater and decided to mow for a while. That gave me the opportunity to let my mind just process.

I found myself coming to the realization that a portion of the acceptance process is no longer fighting the reality of being alone, being a single parent, making decisions and knowing the outcome is on you. I can go on and on and on. All of these thoughts and others flooded over me while I was mowing.

I have been fighting all of this. I didn't even realize it. It hit me like a ton of bricks. I have been putting out a lot of energy putting off making decisions, taking needed actions, etc etc etc.

At that moment, I decided to mentally put on my big girl panties and start dealing with life instead of life dealing with me. As much as I can anyway...I still have the issues with Nick that cause quite a bit of stress.

I've talked with MLC about this revealing moment. He thought it was a major step forward for me in the healing process. He also warned me that strong emotions will still surface. I will still likely encounter some anger at having to make decisions alone, being a single parent, and who knows what else.

So here I am, two years and two months after my husband's death and I am still dealing with acceptance issues.

I think it's safe to assume that acceptance of life after a loss (any kind) takes time and never really finishes.

Hmmmm...grief seems to work the same way.

Monday, September 5, 2011

Labor Day 2011

This holiday has seen lots and lots of rain in my neck of the woods. Wanna Be Hurricane Lee is making his way across the Southeast slowly, but surely.

The kids and I have spent this cool, rainy day staying in and catching up on housework, homework, and REST.

Only the necessary housework has been done. Since getting the carpet taken out, it's been easier to keep the floors clean. Since spending an afternoon shredding and filing, my kitchen table has remained cleared off. My desk is a different story, but I am making progress. That's the point right?!

Yesterday, the kids, myself, Nana and Pawpaw went to explore Lake Winnepasauka Amusement Park near Chattanooga, TN. We won four tickets as a door prize through The Caring House (where the kids and I have been receiving our grief counseling for two years). We finally had the opportunity to drive the couple of hours and have some fun.

Keith and I grew up attending the county or state fairs that would come around each fall. Once we had the kids, we saw the fairs in a completely different light. The rides weren't safe enough. The carnies were too rough and simply money hungry. I could go on and on and on. Keith and I never took the kids to the fair. Never.

Lake Winnie is like a county fair, but very clean...and very permanent. It was wonderful to see the rides that I grew up riding (Tilt-A-Whirl, Swings, Flying Genie, Matterhorn, Bumper Cars, etc) refurbished and shining. It was wonderful to watch the kids experience the fun of going to an amusement park and it not cost a ton of money. The simplicity of this park is wonderful. That is what charmed me the most. It didn't have the famous mascots or the high tech rides. We didn't wait in line for more than 10 minutes. The scattered rain showers didn't shut the rides down. The workers were polite and willing to help you.

I also noticed that there were a lot of families there that had special needs children/family members with them.
That especially made an impression on me. I am the mother of a child with special needs. It was very frightening to take Nick to theme/amusement parks when he was younger, because of his inability to communicate his needs clearly. I would get very nervous taking Nick anywhere that posed the possibility of him getting lost.It is much easier now that Nick is older and his communication skills are 100% improved. 

To see so many families with their loved ones having such fun made me relax even more. I am not doing the best job at putting this into words. Y'all, it warmed my heart to see young and old, those with disabilities and those without, wandering around, having fun, laughing and rushing from one ride to another.

Lake Winnie is truly a family place.

I want to go back. The kids want to go back. I think Nana and Pawpaw may even want to go back.

So, if you are looking for a blast from the past, Lake Winnie is a wonderful way to spend a day.

Other than our adventure yesterday, it's been a quiet Labor Day. That is nice in and of itself. It seems like I'm just going constantly. I guess I am if I stop and look at life.

I am looking forward to the next time we can take a day to take a break.

Saturday, September 3, 2011

Yes, it's another post today

I have a lot on my mind and heart tonight. According to MLC (My Lovely Counselor), the best thing for me to do when this happens is to GET IT OUT!!! The problem in that is that I don't really like the whole process of getting it out. I would rather shelve it and...well, never mind.

Onto the getting it out..

I have been tired, needy, moody, feeling crappy, grumpy, down (maybe even depressed), and definitely being high maintenance. I've been especially high maintenance with a very close friend of mine today.

I hate it when I get this way. It has been a very long time since I have felt such turmoil going on inside my mind and my heart. I have reached a level of healing with the grief that doesn't have the roller coaster of emotional ups and downs ALL of the time.

After having my sweet friend tell me to stop being obsessive and to relax, I began to pray. I really could not figure out what was up with me today.

I knew that there was likely some leftover emotions simply because this has been a tough week. Two trips to Birmingham, chemo, and CT scans make for a tough week emotionally and physically.

After praying, I took a bubble bath. I had also spoken with another very close friend and she suggested that I try to unwind. Maybe that would help.

The praying and the bubble bath (more the praying though) helped me to gain some clarity in what my problem has been today...aside from the obvious leftovers of the week.

Today marks a pretty significant day in the life of my family. I even wrote about it in my previous email/post. Today marks 15 years since Nick's liver transplant. I wrote about it. I got on my soap box about organ donation. I hurt for the mom who lost her son that day. I hurt for the young mother that was afraid she would never see her baby boy again.

I also figured out that I am hurting for that same mom who is now a widow. A single mom trying to take care of the baby who has grown into a young man, whose father has died from cancer. The same young man faces a battle of his own that the mom can't conquer.

I have lots of grief, sadness, hopes, fears, dreams, and praises all trying to fight for space in my heart and mind.

No wonder I don't feel good today.

I'm taking the rest of the night to treat myself with a huge measure of kindness and grace.

Good night y'all!

Update on Nick Baxley 9/3/11

Thank you so very much for blanketing us in prayer yesterday (Friday, 9/2/11).

Nick handled the chemo very well. He did NOT have enough of a reaction that required ANY medical intervention. Praise God!!!!!

At the very end of the infusion (just like the last time Nick got this chemo), Nick’s blood pressure jumped up. The chemo was basically finished. The IV was stopped and the doctor was called. While the nurse was talking with the doctor, Nick’s body began to recover on it’s own. The doctor was pleased that Nick’s blood pressure was coming down on it’s own without any extra IV medications to stop the reaction.

Since this was the same type of reaction Nick had the previous time with this chemo and his body recovered quickly, the doctor was fine to let us come on home. The only special instructions I had Nick his chemo dose of steroids as soon as we got home, instead of waiting until bedtime. I also gave Nick another dose of Benadryl at bedtime.

So, the doctor has decided to give us two full weeks off from this chemo. He wants to keep Nick off of as many extra steroids as possible. The reason is that while the steroids will stop the reaction, they will also cause an increase in Nick’s blood pressure later.

This morning, Nick’s blood pressure is borderline. I’m doing what I can to steer him in the right direction with his diet, but that is a challenge. All of these steroids make Nick crave the foods that make the blood pressure rise. That’s tough on Nick...and me when I have to tell him no.

We are scheduled to go back to Children’s Hospital on Wednesday, Sept 21. Nick is scheduled to receive the full chemo schedule, old and new. I already know that isn’t likely to happen. It took from 10:00 am to 5:00 pm yesterday to get that one chemo drug in. The four or five IV drugs that Nick got on Wednesday took the same amount of time. Since the drugs can not be run at that same time (they are incompatible), we have to give each one it’s turn.

Please continue to pray for us and the doctors. Decisions are still to be made. Remission seems to be a possibility for the first time in three years. Lots of room for hope and answered prayers.

On a side note: Today marks the 15th anniversary of Nick’s gift of life. He received his new liver 15 years ago today. Please join me sometime today and ask a special blessing on the family that blessed my family. The decision that mom, dad, siblings, grandparents, possibly even a wife, made gave us 15 more years with Nick than we would have had. Nick would have died without that gift of life.

Today, I am very thankful, yet my mother’s heart is hurting...even after 15 years. There is a mother out there that is remembering the day her son died. I hope and pray that she can rest in knowing that her son was able to save not only Nick’s life, but several others as well. All because she and the rest of his family made the decision to donate his organs.

If you aren’t an organ donor, please pray about becoming one. If you are one, be SURE that your loved ones KNOW that is what you want done. Just because it says so on your driver’s license doesn’t mean that it will happen. Decisions by your next of kin have to be made and permission forms still have to be signed.

That’s my soap box for today.

We are trying to remain...

In His Grip,

Kristy Baxley

Thursday, September 1, 2011

Update on Nick Baxley 9/1/11

Nick and I were in Birmingham yesterday for another checkup, IVIG, and CT scans.

The most important part of yesterday's visit were the CT scans. The oncologist has been very concerned about the growth of the PTLD/lymphoma. These scans were to see what the cancer is doing, but also to determine if the “new” chemo Nick was receiving during the last part of the summer has had any effect on the cancer.

I am very pleased to report that the CT scans showed that the three places where the PTLD/lymphoma is located ALL SHOW IMPROVEMENT!!! The largest of the tumors is significantly smaller. The spleen remains cancer free. The smallest tumor, that has shown NO change during the entire course of treatment, has now gotten smaller!

I have asked many of you to pray specifically for us to be able to see God move, and move He did! The oncologist even told me yesterday that he did not believe that the “new” chemo would have made any difference AT ALL! God is so very good!

So, what is the plan? The plan is for Nick to go back on the “new” chemo starting tomorrow, Friday, Sept 2. Nick received the regular chemo, along with the IVIG (to boost his immune system), yesterday.

This “new” chemo is the same chemo that Nick received during the summer that he had allergic reactions to during every infusion.

Why is the oncologist going to start giving it again? Basically, he said that the benefit now outweighs the risk. The chemo is working. So, Nick’s body is going to be pushed at this point. Nick will be given an adjusted dose of the chemo. The oncologist is kind of splitting the difference between the lowest dose Nick had a slight reaction to and the highest dose that caused a more significant reaction.

We will just have to see how it goes. I’m nervous, but I also am thankful that the chemo has worked.

After tomorrow, we are scheduled to return for more of all the chemotherapy drugs and the IVIG on Sept 21. I’m pleased that we will have a couple of weeks to recover and regroup.

Please continue to pray for us and for Nick’s doctors. There still isn’t a decision about the bone marrow transplant. There should be a meeting of the specialists in about two weeks if all goes according to the oncologist’s schedule.

I feel like there are so many prayer requests that there are simply too many too mention. Please pray as God leads.

We remain...

In His Grip,

Kristy Baxley

Monday, August 15, 2011

Update on Nick Baxley 8/15/11

I apologize for the delay in letting y’all know how Friday’s chemo went. The weekend was very hectic trying to get things ready for the first day of school today.

Nick handled the “new” chemo pretty well...mostly.

The oncologist decided to reduce the dosage from 1500 mg down to 1000 mg. He really wanted to keep from having to give Nick more steroids.

Nick did very well, until the very end of the chemo. Literally, the IV bag was empty and the last little bit of chemo was going in when he began to react.

The reaction really only showed up in Nick’s blood pressure. The doctor was hoping that since the reaction came when the chemo was finishing Nick’s body would be able to recover without any intervention.

After about 15 minutes, Nick’s blood pressure was still high. The doctor ended up deciding to give Nick more steroids so that the reaction would stop. It did. I didn’t have to give Nick any more Benadryl once we were home. I did have to give some more steroids, but not a lot.

The oncologist has decided to stop the “new” chemo for now. I don’t know if it is completely off the table, but Nick is NOT getting the chemo this week.

I have to say that I am relieved. More than relieved really.

We will go back to Birmingham on August 31. Nick is scheduled for CT scans to see what this cancer is doing. He is also scheduled for the old chemo and IVIG.

Please pray as God leads.

We really need to see God move right now.

In His Grip,

Kristy Baxley

Wednesday, August 10, 2011

Update on Nick Baxley 8/10/11

Hi All!

We were back at Children’s Hospital today for the “old” chemo and IVIG. I am very thankful that Nick handled all of the chemo and IVIG very well today. He did not react at all to the IVIG. Even though there is a risk of a reaction with the IVIG, Nick hasn’t had a reaction to this in several years.

I was concerned that he might react today simply because of the reaction that Nick had to the “new” chemo 10 days ago.

Everything went very well though and for that I praise God!

There isn’t much else to report from today. Nick’s labs were good. There still isn’t any news from the bone marrow transplant team. Maybe we will know something when we go back on Friday for the “new” chemo.

The oncologist did mention today that he may decide to stop the “new” chemo after Friday. He is concerned about the way Nick’s body is handling the chemo and the extra steroids.

Certainly lots to think and pray about...

Friday will likely be another very long day. The doctor and nurses are already working on an action plan on how to increase Nick’s rate per hour and keep the reaction to a minimum.

To say that I am anxious is an understatement.

Please pray.

In His Grip,

Kristy Baxley

Saturday, August 6, 2011

Changes, changes, and more changes

It is certainly an understatement that my family has been through a lot of change during the last several months...uh, years. I can't believe we have begun the journey of our third year without Keith!!!

One of the biggest changes in our home has been in the last couple of weeks. I decided for many reasons to go ahead and get some work done on the inside of the house. These are all changes that Keith and I talked about doing, but never got around to. My bedroom has been redone. Nick's room is redone. Kacie's room is almost finished.

Her bedroom is what led me to write tonight. I let the kids pick out the new color/theme for their rooms. Nick chose Alabama Crimson Tide. No surprised there. He has one wall that is crimson red. It is the wall where his closet is at so it's only an accent type thing. The other three walls are gray. The trim is white. He already had Alabama bedding and other stuff. He also has the wonderful gift of framed Crimson Tide art work. His bedroom is finished and it is AWESOME!!!! He is thrilled.

Kacie chose the color Sassy Lilac. It is definitely in the purple family. It is a totally preteen girl color. Today was paint Kacie's room day. I haven't had any sadness painting...until today. When I began working in Nick's room, I was remembering when I painted it the first time. Nick was five or six. I had no grief issues. None. When I woke up this morning, I was immediately met with some sadness. Going along with my tools for grief recovery, I thought for a minute about why I was sad. I realized that today I would be painting over the "baby" paint that Keith put on while I was expecting Kacie. Keith and a family friend painted that room. We decided on light green because we didn't know if the baby was a Kacie or a Christopher. I was banned from the room. No painting for the pregnant lady.

This morning I was sad to be painting over something that Keith did with such love for not only this little life, but out of love for me. It was our first place to live that we could paint the walls. It was the first room in this house to be painted. I wanted it to be a nursery. He made that happen.

I let myself feel sad about letting that go. I still have the memories. I also have a baby that was a Kacie and is now 11 1/2 years old. She is starting middle school in about 9 days. She needs to have a room that is no longer a nursery color. I realized that this painting would have been done if Keith were alive and well.

I mainly realized that this was another necessary change for the three of us to continue on through this phase of our life without Keith.

So...I got out of bed and got started on transforming Kacie's room. My mom came to help me. We knocked it out in just a few hours.

Kacie's room looks great! Once the new floor is down and the furniture rearranged, it will look even better.

The smile on her face when she saw the finished walls was worth every thing! She is so excited!

I am loving the changes I've made in my bedroom. The walls are a subtle lilac. I know, us girls have a thing for purple! I've accented with eggplant. It's very soothing. I love it.

Life is so full of changes: from kids growing up to losing a spouse and everything in between.

Change is necessary. Change is inevitable. Sometimes, change is even good.

Tuesday, August 2, 2011

Update on Nick Baxley 8/2/11

We were back in Birmingham for the second dose of the new chemo this past Friday, 7/29.

The chemo dose was double from the first dose last week. This round, while still given slowly, was given at a rate that was doubled as well. Last week the rate was 12.5 ml/hour and increased by 12.5 ml every 30 minutes until a maximum rate of 100 ml/hour was reached. This week, the rate was 25 ml/hour and increased by 25 ml every 30 minutes until the maximum rate of 100 ml/hour was reached.

The rates per hour are done this slowly in order to help keep any kind of reaction to this chemo from happening. Recall that last week, Nick had no reaction at all.

I was nervous going into this round of chemo since everything was doubled.

Nick handled the increases to his maximum rate very well. He even handled the first hour at the full maximum rate very well. It was into the second hour of receiving the chemo at the maximum rate that things began to get “interesting”.

At this point, Nick was into the 4th total hour of receiving the chemo, but it was only the 2nd hour of running full force.

Nick began to have a reaction.

The oncologist and the nurses said it was a mild one, but from my point of view...I really don’t want to see anything worse. This was enough.

What did the reaction look like? Well, it started with Nick sweating. Then his blood pressure got really high. His pulse rate got really high. He also started running a fever. His breathing became rapid too. He also went white as a sheet.

The nurse immediately stopped the medicine and began the process of stabilizing Nick. The oncologist came right over and began checking Nick over. Another big dose of IV steroids was given. Nick had already had some as a pre-chemo dose, along with 50 mg of IV Benadryl and 500 mg of Tylenol. Each of these medicines are given before the chemo is started to help prevent a reaction.

Nick recovered very quickly just with the chemo being stopped. Once the extra steroids were given, the chemo had to be started back.

I’m not going to lie...I did not want them to start it back. I was scared. Kacie was crying and scared. I was trying to calm her down, keep an eye on Nick, stay out of the way, and NOT let them see how scared I was. I did not want to start this chemo back up again...

We did though. The chemo can’t work if it isn’t given a chance. The nurse explained to me that while the reaction looked scary, it really wasn’t that serious. It was actually a mild reaction and since Nick had been given more steroids, it should be okay for us to keep going with the chemo.

So...I took a deep breath and gave my consent.

Nick did pretty well for about an hour. Then his blood pressure and heart rate started bouncing around again. This continued until a little after 5:00, when Nick’s blood pressure reached the highest for the day. The nurse called the doctor to come in. He decided that Nick had been through enough and had gotten most of the chemo. We could stop.

Nick had been receiving this chemo for a little more than 7 hours at this point.

We were allowed to be discharged to come home. Nick’s vital signs were still on the high side, but getting progressively better the longer the chemo was turned off. We did have to come home with some additional high dose steroids and some more Benadryl before bedtime. By the time the day was finished, Nick had been given about 350 mg of steroids and about 87.5 mg of Benadryl. That’s a whole bunch of medication folks!!!

The doctor finally decided on Nick’s treatment schedule. We go back on Wednesday, August 10 for the “old” chemo and IVIG. Then we return on Friday, August 12 for the “new” chemo. We return again on Friday, August 19 for another dose of the “new” chemo.

So far there isn’t any news about the bone marrow testing. I’ll let you know when I know something.

The doctor probably won’t do any CT scans until September, unless Nick begins to show signs of the cancer getting worse.

Pray as the Lord leads.

I’m more stressed than I have been in a very long time. This is very hard on all of us. Nick is taking it in stride, as is his way. Kacie is very worried about her brother. I’m trying to hold it all together, but I’m tired mentally, physically, and emotionally. I’m having some issues with the similarities of what Nick is going through to what Keith went through before he died. Please pray that I can get my head straightened out.

Trying to remember that we remain...

In His Grip,

Kristy Baxley

Saturday, July 23, 2011

Update on Nick Baxley 7/23/11

Nick and I were at Children’s Hospital in Birmingham yesterday (Friday, 7/22) for the new chemo.

Thank you all so very much for the thoughts and prayers yesterday.

The many prayers were definitely answered. Nick did NOT have ANY kind of reaction to the chemo infusion. HUGE PRAISES!!!

Yesterday, Nick was given 1/2 of the regular dose of the chemo. It was given very, very slowly. The rate was 12.5 drips an hour. (FYI: The plain IV fluids Nick gets are given at 200 drips an hour.) After 30 minutes passed without a reaction, the rate was increased by 12.5. Nick made it through that first thirty minutes without any problems. His rate then became 25 drips an hour.

For every 30 minutes that passed without a reaction, the rate of infusion was increased by 12.5 drips until we finally reached a maximum rate of 100 drips an hour.

Nick made it the entire way without any kind of reaction.

He was given 50 mg of IV Benadryl and 500 mg of Tylenol before the chemo ever started to help prevent any kind of reaction. Within 10 minutes of getting the IV Benadryl, Nick was asleep. Usually Benadryl doesn’t make Nick sleepy, but at that dose, it knocked him out.

The chemo was started about 10:45 am and we finished about 3:15 pm.

My job was to watch Nick closely for any kind of reaction. I got a break to run to the cafeteria for some lunch. A clinic aide was available to come sit with Nick while I was gone. Nick doesn’t need to be left alone while the infusion is going since the reaction risk is so high. It made for a long day.

We will be going back to clinic for the next dose of this chemo this coming week...Friday 7/29. The chemo will be the full dose this time. The rate per hour will be increased as well. The risk for a reaction will be pretty high again since the dose will be doubled.

After this, hopefully the risk will go down.

Normally, this chemo is given every week for 6 or 8 weeks. The oncologist hasn’t really decided how often Nick is going to receive it though. The oncologist is also trying to make it as easy on me as possible by keeping our trips down there less frequent.

For now, I’m just taking it from one visit to the next. I’m trying not to look too far ahead. It gets very overwhelming.

There are many prayer requests once again. Some of the ones weighing most heavily on my mind are: the financial burden of driving to Birmingham every week, managing the kid’s school work with the weekly trips, Nick’s tolerance of the chemo, the chemo working, the bone marrow decisions...I could go on and on and on.

It’s been difficult these last few days coming to terms with everything and the reality that I am doing this as a single parent. That’s another prayer request. I’ve been doing “this” for a long time with Nick, but I’ve never had to do these weekly trips without Keith to help. I’m feeling pretty overwhelmed right now.

I’m going to leave it here for now. If I get to the point that I can open up anymore, I’ll write on my blog.

I’ll send out another update next week. I’ll also be posting Nick’s progress with the next chemo on Facebook like I did yesterday.

Please keep praying as the Lord leads.

Trying to remember that we do remain...

In His Grip,
Kristy Baxley

Thursday, July 21, 2011

More indepth update on Nick 7/21/11

Yesterday (Wednesday, 7/20), Nick had another checkup, IVIG, and chemo. Kacie, Nick, and I also all had blood drawn to begin the HLA typing necessary to begin determining Nick’s eligibility for a bone marrow transplant.

I was very concerned about how Kacie would do with the blood draw. She does not do well with needles. I am very proud of her. She was awesome yesterday. I put some of the numbing cream I keep on hand for Nick’s invasive needle sticks on her inner elbows. She didn’t feel any pain at all. The worst part was the tourniquet.

I don’t know how long it will take for the test results come to back. I didn’t ask yesterday.

Nick’s physical exam was fine. Nothing new. His lab results were good as well. In fact, his iron levels are just a hair below normal. His body is finally absorbing iron! Yay!

I don’t remember how much, if at all, I’ve mentioned the problems with Nick’s iron absorption. One of the issues with chronic illness, especially Nick’s version of cancer, is the body’s ability to absorb iron. Anemia results very quickly when iron levels decrease. Nick began “leaking” iron a while back. The oncologist and the GI doc believe that it has likely been caused from some small amounts of blood loss due to the number of polyps in Nick’s small intestine. The oncologist’s main concern was getting the iron levels back up.

We are finally there!!! Nick has been taking 300 mg of iron three times a day for months. As of yesterday, that dose can go down to one time a day. Yay!

Nick got the “old” chemo yesterday. The oncologist is going to give the “new” chemo, but not until tomorrow.

Yes, that’s right. We have to go back tomorrow.

The chemo drug that Nick will be getting is one that he got 5 years ago when he was being treated for this same cancer. This particular chemotherapy is known for inducing an allergic reaction when given years apart. In order to try to prevent a reaction, the doctor wants to give the chemo very slowly. It will likely take four hours or more to get this first dose. If Nick doesn’t have a reaction this first time, he probably won’t during the subsequent doses. The first dose is very critical though.

Tomorrow (Friday, 7/22), we have to be back in clinic around 8:30 am. The chemo will get started hopefully by 9:30-10:00. Nick will be given Benadryl and other medications to help prevent any kind of reaction. If a reaction happens, the chemo will be stopped. Whatever emergency measures are needed to stop the reaction will be given. Once the reaction has passed, the chemo will be restarted. That’s just the process. I know it doesn’t make sense, but that’s how it is.

What will a reaction look like? It could be anything from an itchy rash, hives, shivering, nausea, (all of which would be a mild type of reaction) to anaphylaxis (severest reaction).

Please pray for NO REACTION!!!!

Nick will be at risk during the entire infusion. Needless to say, tomorrow is going to be just a little more stressful than usual.

Nick has been feeling pretty good today. This is great. I’m glad that the chemo from yesterday hasn’t made him feel bad.

I will be updating on Facebook throughout the day tomorrow. I’ll try to get an email update out by Saturday, I hope...

There are many, many prayer requests. I feel very overwhelmed at even trying to mention them all. I’m going to ask that you pray as God leads you to.

As always, we are trying to remain...

In His Grip,
Kristy Baxley

Quick Update on Nick 7/21/11

This is just going to be a quick update. I'll get a more detailed one out later today.

Nick got the "old" chemo and IVIG yesterday. He did very well. All of his labs look good. His iron levels are just a hair below normal, which is great! It means that we can back off of the oral iron and his body is allowing the iron to be absorbed.

We have to go back to Birmingham tomorrow, Friday, July 22, for the "new" chemo.

Nick is at high risk for having an allergic reaction to this chemo, because he has had it before. It's got something to do with the way this chemo works.

Anyway...due to this, the chemo has to be given very slowly and there wasn't time yesterday.

Pray for us tomorrow.

In His Grip,

Monday, July 11, 2011

Number 19

Nineteen years ago today, I pledged my life and my love to my high school sweetheart. He pledged his love and his life to me.

Two years and four days ago, I said good bye to that man.

We really meant it when we took our marriage vows: for better or worse, for richer or poorer, in sickness and in health, forsaking all others until death do we part.

Death parted us.

We certainly endured and survived each and every aspect of our vows. We never dreamed that we would go through the struggles that we did. We never dreamed that we would have to fight for our marriage the way we did. We never dreamed that we would not live to be grandparents together.

I never dreamed that I would be a widow, even when it was staring me in the face. I never wanted to truly accept that would happen to me.

Mr. T. (one of my grief counselors) told me today to think of Keith and how he might be celebrating today. After just a quick second, I realized that, while I am sad about Keith's earthly, physical death and the end of our earthly marriage, Keith is with Christ. He has no worries of this world.

His chains are gone. He's been set free.

No anniversary present on this great earth can top that!

Happy anniversary Keith!

I love you!

Monday, July 4, 2011

The Second Fourth

Today is the second 4th of July since Keith's death.

The arrival of today means that the second anniversary of his death is only three days away.

I had a difficult time getting to sleep last night. It was actually in the wee hours of this morning before I fell asleep.

I think July 4th was Keith's favorite "American" holiday. He loved the cookouts and fireworks. The fireworks were his absolute favorite.

His love for fireworks has been passed along to Nick. It is bittersweet. I wish Keith were here to teach Nick about buying fireworks, the do's and dont's of fireworks, safety... Instead, Nick has me. I like watching them. I don't care about buying them. I don't know anything about buying them. I don't like lighting them. There's no adrenaline rush for me the way it was for Keith and apparently is for Nick.

Yesterday, Nick and I went to buy fireworks. Ok...I know that this does not sound like a big deal, but for me it was and still is a little bit.

For the majority of our time together, Keith's love of fireworks was quite obvious. His extended family lives in south Alabama and Georgia. There is a huge fireworks warehouse that is open year round about an hour or so from Keith's grandparents house. Every trip we made down there, Keith would make a visit to that fireworks store. It would not be anything for Keith to come back loaded down with a few hundred dollars worth of fireworks. Yes, you read that right. When we couldn't get down there, Keith asked his parents to buy some and haul them home.

When he went, he would be gone for hours. He knew what the best deals were for the money. He knew what kind of show each one would provide. He knew how loud the report would be. He tried to teach me. I listened some. I wish now I had listened more...

So, for that few hundred dollars, we would have TONS of fireworks. Keith would be able to put on a really nice show and satisfy his need to blow things up. ;-)

July 4, 2009 was the first year that Keith could not blow up fireworks. My mom and Nick shot off the best of the best of Keith's collection, while Keith and I sat on the porch, holding hands, and the oxygen generator humming in the background. All the while KNOWING that THIS was HIS LAST FAVORITE holiday.

Keith died on July 7, 2009.

July 4, 2010 the kids and I went out to my mom's house. We did the cookout. We shot fireworks. She helped Nick again and I helped a little. Her neighbor helped Nick too. We finished off the best of the best of Keith's collection. I cried. The close of the first year without Keith was closing in upon

July 4, 2011 is here. I took Nick to buy fireworks yesterday. We don't have any of his dad's best of the best left. Nick really wants to put on a show...just like his dad. So, we go into a large fireworks store. I don't have enough of a clue to know what the best deal for the money is. Again...I wish I had paid more attention. A really nice man came up and asked if we needed help. I said yes and told him what we were looking for. He worked really hard to give me the best deal for my money. I didn't spend the money that Keith always did, but I don't have it to spend now either.

Nick is thrilled with what I bought yesterday. He can't wait until we go out to Mom's house this afternoon for a cookout and then fireworks. Nick is ready to see what we bought. He is ready to step into the shoes his dad left behind. I'm not ready to let Nick step into the role of fireworks boss. I'm probably going to have to man up and help fill the role of teaching Nick the in's and out's of blowing things up. I don't like blowing things up...The things we do for love.

I wish you all a very, blessed, happy and safe July 4th!

As always, we remain...

In His Grip!

Friday, June 24, 2011

On my mind...

There are many, many thoughts running circles in my mind. It's been that way for several days now.

A lot of my thoughts are circling around the medical news with Nick.

What's left has been divided between my economics class, kids, bills, etc, etc, etc.

I've had a tough time coming to terms with the FULL meaning of the changes that are likely going to be taking place because of the cancer Nick has.

Kacie put it very well today when I shared about Nick's clinic visit. She cried and said she "just didn't understand why God continued to let Nick to have cancer. He's been through so much. It isn't fair that he should have to fight this like Daddy did."

Shattered my heart into a million pieces.

I know that I have been struggling with the similarities between Nick's current fight with cancer and Keith's long fight. I didn't think the kids had given it much thought. I really don't give these kids enough credit!

She managed to sum up everything that I've been feeling.

This is a tough place that my family is in. It's even tougher to KNOW that we are going to be here awhile without divine intervention from our Heavenly Father. It's odd to think that we are in a tough place now when in reality, we've been in a tough place for many years.

I had the realization on Tuesday that it has been six years since this constant back and forth to Children's Hospital became routine for the second time in Nick's life. Realizing that it has been six years was like walking right into a brick wall. I did not realize how many years the constant back and forth has been going on.

Six years ago, Nick had his colon surgery that resulted in a 29 day hospitalization due to complications. Due to how fragile his health became because of that surgery, we had to make countless trips to Children's for checkups with the surgeon. By the time Nick's health had stabilized and he had fully recovered from all of the complications of the surgery, we found out he had PTLD/lymphoma. Then we began the journey that we are still on...

Nick was in remission from the cancer for a year before the cancer came back. Keith was in remission during the summer six years ago when Nick had that surgery. Keith came out of his remission at the same time Nick's cancer was diagnosed.

Now...Keith has been gone for almost 2 years. Nick still has cancer and will likely need a bone marrow transplant. I just can't seem to grasp the magnitude of all that is contained in just those two sentences.

Jumping thought trains...

I decided to withdraw from my economics class. I made it official today. I had to let something go. I was close to losing my mind trying to deal with my family stuff AND that class. MLC (My Lovely Counselor) had tried to get me to see that taking a summer class (esp one as in depth as microeconomics) was probably not the best thing for me. Did I listen? Nooooooooo. I'm Super Mom. I can handle it! It's just a summer class. I have plenty of time. The kids aren't in school. I'm not balancing school, band, dance, church, and all of the other externals that come with being a parent. ETC. ETC. ETC.

When I shared my decision to take microeconomics with MLC, he just kind of looked at me and said okay. He isn't going to wear me out about the decisions I make, unless it's a really bad decision.

When I told MLC today about my decision to withdraw, he clapped. He is very proud of my decision to cut my losses and reduce some of the stress in my life that I CAN control. He's so good for me. I was really battling feeling like a quitter, but he helped me see that I'm not. I needed to reduce some of the load that is on me, and that's what I did.

I don't regret it either. I slept better last night than I have in a while.

I'm going to end it here for tonight. There's still a lot that I want to share, but I'm just too tired right now.

As always, we remain...

In His Grip!

Wednesday, June 22, 2011

Update on Nick Baxley 6/22/11

Hi All,
I’m probably back to 90% on my contact list. I decided to go ahead and send out what I know to who I have. If there is anyone you know that has stopped receiving my emails, please have them contact me and I will add them back to the list.

We have been to Birmingham today for a checkup, chemo, and IVIG.

To play catch up a little bit: Three weeks ago, Nick had CT scans to check the progress of the cancer/chemo. The CT scans showed that the cancer is no longer shrinking, but it isn’t growing either. Nick’s oncologist said that means the chemo is no longer working as effectively as it was. Nick’s cancer is considered stable at this point in time...not growing, not shrinking.
Because of the decrease in response to the chemo, it is time to step back and take a look at other options. There are really only a couple of options. One is to stop treatment and let God do His work as the Ultimate Physician. The other option is giving Nick more aggressive chemotherapy.
The oncologist does not want to put Nick through aggressive chemotherapy unless we can reach a complete cure. The best possible chance Nick has of reaching cure for the cancer is aggressive chemo, but the best chance at cure for the immune system disorder is a bone marrow transplant. The oncologist’s line of thought is that it would be in Nick’s best interest to use the aggressive chemo in conjunction with the bone marrow transplant.

In order to prepare Nick’s body for a bone marrow transplant, it is necessary to give enormous amounts of aggressive chemotherapy. These would be the same chemo drugs needed to fight the cancer now. There is only so much of certain chemo drugs that can be given.The oncologist doesn’t want to use up anything before we have determined if a bone marrow transplant is viable.

The oncologist has sent Nick’s medical records over to the bone marrow transplant doctors for review. They are in the process of reviewing ALL of Nick’s medical history to determine if he qualifies for a bone marrow transplant.

He is also trying to convene all the other specialists to discuss Nick’s extensive medical history and how the various other medical needs will be affected by the aggressive chemo and subsequent bone marrow transplant.

Now to today’s visit...

Nick’s blood work is showing improvement, especially in his iron levels. This is good news. The oncologist told me today that he wasn’t really concerned much with Nick’s IGG level, because he wasn’t going to change anything anyway. Nick’s IGG levels have been consistently normal for almost three months now. Obviously the IVIG has reached a maintenance level. This is another good thing.

As for the PTLD/lymphoma, Nick and I have been talking about little else these past few days. Nick hasn’t wanted to talk about it at all until recently. We have talked and prayed. Then we talked and prayed more. Nick was able to sit down with his doctor today and ask the doctor the same questions he’s been asking me. The doctor confirmed everything that I have been sharing with Nick. The oncologist took Nick’s concerns about aggressive chemo very seriously. Nick does not want to the chemo or it’s side effects to interfere with his life right now. I completely understand that. Nick has lived a life interrupted.

What do we do right now? Well, the oncologist told us this morning that he is going to add in one more chemo drug, rituximab. This drug was a part of Nick’s treatment plan when he had chemo 4 1/2 years ago. The reason that the oncologist hasn’t already given it to Nick this go around is because the cancer cells did not look like this drug would do any good. Another big reason is the effect this chemo will have on Nick’s already compromised immune system.

Why now? This drug is the only thing we have left to add to the arsenal in the hopes of controlling the cancer or even shrinking it again. This drug is hopefully going to be what keeps Nick stable until a decision can be made about the bone marrow transplant and the aggressive chemo. Nick will get his first dose on July 22. Today Nick received the same chemo he has been getting, as well as IVIG.

For right now, we will maintain status quo. Nick is completely thrilled with this combined decision we all were able to reach. He is completely at peace. Nick has told me repeatedly that he feels like God has a plan for him and he thinks we need to give God more time to work. (These were his exact words.)

The oncologist said that he wants to meet with other specialists. Due to scheduling difficulties among so many doctors, there is also a very good possibility that Nick’s case will be taken before the tumor board for review. This is a group of oncologists and other doctors that meet to discuss a cancer patient’s case and possible treatment options. The next tumor board meeting will likely take place next week. I don’t think it’s exactly what Nick’s oncologist had in mind for this meeting, but he did say this might be the only way to get the minds together at the same time.

From our side, the only other thing is to have HLA typing done.

HLA typing info: Human leukocyte antigen (HLA) typing is used to match patients and donors for bone marrow or cord blood transplants. HLA are proteins — or markers — found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not. A close match between your HLA markers and your donor's can reduce the risk that your immune cells will attack your donor's cells or that your donor's immune cells will attack your body after the transplant.

This information is from if anyone wishes to check the site out.

Nick, Kacie, and I will have HLA typing tests done on July 22. The purpose of Nick’s HLA typing is to determine what type of marrow would be the best match. Kacie’s HLA typing test will be used to determine if she is a match for Nick. She is the most likely family match to Nick. The purpose of my HLA typing will be two-fold. One: There is an outside shot that I could be a match. Two: My HLA typing test can help to determine the best match for Nick. I’m not sure of the in’s and out’s on exactly how my part works, but the doctor does and that is what matters.

Several of you have asked about being tested for bone marrow compatibility with Nick and being a possible donor. I asked the oncologist about that today and he said that we are not at that point yet. I will let you know when we get there, if we get there.

There are so many prayer requests in this update. There are also many praises.

I am praying for God’s will in Nick’s life, clear and concise discernment in the decision making, and for God to surround the doctors involved in the decision making. Another prayer I’ve been praying is that Nick will be open to hearing not only me and the doctors, but God’s still small voice too. I want Nick to KNOW what God’s will is for his life, not just what I want or what the doctors think is best.

Please continue to pray for Nick and our family. I am not telling Kacie right away about the need for her to give some blood for testing. She gets VERY anxious when needles are involved. Pray for Kacie too. Any path that Nick’s treatment takes is going to be difficult on her. Pray for me. I’m very tired emotionally. It’s been a long, hard journey to this point, and it doesn’t seem to be getting any easier.

Contact me with any questions. I will do my best to find an answer.

As always, we remain...

In His Grip,

Kristy Baxley

Sunday, June 12, 2011

just some thoughts

The kids have been with Keith's parents since last Wednesday. A huge vacation of sorts for them. Kacie came home on Friday afternoon for some girl time. I put her on the church bus to CentriKid camp early this morning. Nick is still on vacation at Nana's house for another day or two.

I have learned that I am more okay with being alone in the house than I have been since Keith died. Yes, it has taken me most of two years to be able to say that. At least I can say it now. There have been lots of times since Keith's death that I didn't know if I would ever be able to stand being alone, without feeling like the walls were closing in on me.

I am taking a summer class in order to finish up the 2 year Associates Degree I started in 1992. If I can pass this class, I will receive my diploma at the end of the summer. I can say I am a graduate of Calhoun Community College Class of 2011. It's just the beginning of meeting goals I had set so long ago, but it will be nice to know that I have finally completed something...even with living a life interrupted.

I have no idea what I am going to do next. I have several pressing decisions to make that I feel grossly unprepared for. I am praying for guidance and discernment. That's the only thing I know to do.

I have my laptop back. YAY! Thank you BH for fixing it! The verdict is still out on retrieving any info from the corrupt hard drive. I'm praying for pictures and documents. I'll settle for pictures though. I have decided, after two major computer crashes, that I am buying an external hard drive simply for storing pictures and important documents.

I literally just realized that I probably lost all of my embroidery designs too. Ack! Oh well...I'm not sewing much right now. I'll deal.

Nick is feeling good. He's been kept busy at Nana's house. He is having a blast. We go back to Birmingham on June 22 for more chemo. I am assuming that we will also be told where things stand with the construction of the "new" plan.

Honestly...I don't want to hear anything about a new plan. I don't want to hear anything other than Nick is in remission. The problem with what I want is that it's a hope and a wish, not the reality right now anyway.

More honesty...I am really tired of watching the ones I love suffer from cancer. It has been a long, long journey...15 1/2 years. I'm ready for some peace and calm that comes from living a life without cancer in the house. I'm wondering if that will ever be possible. More praying going on there too.

Well...I have blogged here instead of watching my economics lecture. I'll have to make that up tomorrow. For now, I am headed to bed.

Good night!

Saturday, June 4, 2011

Update on Nick 6/4/11

My laptop has died and it took my email update list with it...If you know someone who usually receives my emails, please direct them here, or send this out to your own prayer partners and friends as an email. Grrrr! I am so aggravated about my laptop. It's being worked on, but it takes time.

On to the update...

The CT scans showed no change in the cancer. This is a good news/bad news situation. The good news is that the chemo is keeping the cancer from growing. The bad news is that the chemo isn't working to shrink the cancer anymore.

The oncologist said that it is time to begin looking at making changes in the chemo plan. This is where he is approaching the bone marrow transplant option from. The next phase of chemo for Nick's cancer is pretty aggressive. According to the doctor's thinking, if we are going to hit the cancer with aggressive chemo, then let's look at using that opportunity to correct not only the cancer, but the immune disorder as well with a bone marrow transplant.

The doctor is going to be speaking with many other specialists that need to be involved in the decision making process. The decision making will not happen quickly. It will likely take weeks, if not months to come to a mutual decision because of all of Nick's various health problems and extensive medical history.

The plan for now is to continue with the chemo that Nick is on with the hopes that it will control the growth of the cancer. Hopefully it will remain stable. If things worsen, then there will be a new plan made.

The polyps in the small intestine do not concern the oncologist. He wasn't surprised by their presence. He looked at the films and saw no evidence of anything that looked like cancer. That apparently was his goal in the procedure. He doesn't feel like we need to make the trek to Ohio yet. We can if we want to, but he feels like we can maintain control of the FAP in Birmingham a while longer.

I'm going with what he said.

Please continue to remember us in prayer. I don't know what to pray for anymore. Please pray as God leads.

In His Grip,

Kristy Baxley