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