More than survived

The fourth Christmas since Keith's death is a few days behind us now. This one has been the best one for me emotionally. I was able to enjoy the day without being overcome with grief.

The kids seemed to do well with the day too. They enjoyed their presents and the time we spent with family.

We did change up a few things again this year. We are still trying to find the traditions that we can all live with and enjoy. Most of our family traditions, that have been in place since the kids were little bitty, have faded away. I realized this year that some of these traditions simply faded because the kids are basically both teenagers. There are still those family activities that are just too painful for me to even try to reintroduce. So, I tried to find something new to do. I don't know that I really succeeded this year. Kacie requested that we attend the Christmas Eve service at our church. That is one family tradition that we have done for years. It is one we will keep too.

We were really low key this year. Kacie and I were really tired. Nick had chemo a week before Christmas, which made him more tired than usual. Low key and quiet were definitely what we needed.

I didn't do much holiday cooking. I took requests from the kids and went with that. We still used the "little" tree and "new" ornaments for the fourth time. I like the little tree. Much to the kid's dismay, I will probably keep it. They want the big tree to come back. Nah...don't think so.

There wasn't really any other decorating and I'm good with that. I decided to keep it all very simple and stress free this year. I was able to achieve that goal on most levels. I actually had all the presents wrapped and stockings filled before 10:30. I went to bed before 11:00. This was the first Christmas in 18 years that I've gone to bed before midnight on Christmas Eve.

I do not like wrapping presents. Keith was the present wrapper in the family. Since his death, I have spent more time crying about wrapping the presents than it probably would have taken to wrap them. Not this year!! I got it all done fairly quickly. The kids helped some. They enjoy the wrapping...or rather playing tricks on whoever will receive the gift. The kids have Keith's sense of humor there. Nothing is off limits. Packing tape, duct tape, staplers, sharpies, scotch tape, lots of tape...did I mention tape?...Their goal is to make the present as tricky to open as humanly possible. I'm their favorite mark too. So, I let them have their fun. I pretend to get frustrated and I make funny faces while trying to get to the goody that's wrapped in 6 yards of paper and 35 yards of tape. We all laugh. The laughter chases away the tears that are hiding just out of sight, as they feel the absence of their dad more acutely at that moment.

We had Christmas with Keith's parents the next day. It was a wonderful time there as well. The kids spent the night. I went to dinner with a friend.

Today, the kids and I made the journey to Children's Hospital for Nick's PET scans. Nick did very well. The new machine is impressive to see. The procedure for radiation exposure is a lot different at Children's than what we have been used to in Huntsville. Kacie and I were able to stay with Nick the entire time. They were very much concerned with the comfort of the patient AND his sibling. Many times, I have to leave one of the kids in order to be with the other one. I end up going between the kids. Then I get stressed and upset about not being able to be in two places at the same time. I did not have to do that today AND IT WAS GREAT!!

I don't know when we will have results. The oncologist is out of town right now I imagine we will hear something next week.

Thank you for the continued thoughts and prayers. Please continue to cover us. There are some big decisions that are riding on the findings in these scans.

I wish you all a very blessed new year!!

In HIS Grip,

Kristy

Update on Nick 12/20/12

Merry Christmas to you all!

Nick and I were in Birmingham for another clinic visit, chemo, and IVIG on Tuesday of this week.

The visit itself was uneventful. Nick’s blood work looked good. The doctor mentioned that he was still waiting to see what Nick’s iron and iron binding capacity levels were. Since the doctor never mentioned it again, I am going to assume the levels either stabilized or were even back into the normal range. No news is good news!

Nick seems to be feeling okay post chemo. He has been a little more tired this time, but that is to be expected.

The next step for Nick comes on Friday, December 28. Nick will be having extensive PET scans done at Children’s Hospital. The scans were approved by insurance. Go figure... Anyway, the kids and I will make a quick trip down and back just for the scans. We don’t have to go into clinic that day or anything.

At this time, I do not know when I will have the results of the scans. It will likely be some time the following week. Nick’s next chemo treatment is scheduled for Jan 23.

Keep the surgeons in prayer as they are literally combing through these scans. They will be making the decision about surgery to remove the mass from Nick’s lower abdomen/pelvic area.

Also pray for the oncologist to have discernment and wisdom as he looks at the scans. He told us, not too long ago, that we are in uncharted territory and there really isn’t a treatment protocol for Nick’s illness. 

These scans will help to determine how we need to proceed.

We have been doing okay. I had the flu last week. The kids have both had the sniffles at various times. So far, neither of them have come down with the flu. My prayer is that we can avoid that and the other yuckiness that is going around.

The kids will be out of school for Christmas break tomorrow. Nick will be one semester away from graduation. WOW!!! So hard to believe that it is getting so close.

Kacie will be turning 13 on Jan 3. That’s another big milestone that is difficult to believe is already here.

I hope and pray that each of you have a very blessed Christmas.

As always, we remain...

In HIS Grip,

Kristy Baxley

Laying here...

Today has been a day that will be forever remembered for the tragic loss of life in a small New England school.

I lay here in my bed trying to sleep. It's late. I've been down sick with the flu for a couple of days. I can hear Nick's tv in his room. I can hear Kacie getting settled in her bed.

I'm restless. My heart is so heavy tonight. The scenes on tv have been horrific. The "normalcy" of the bedtime sounds in my house seem out of place tonight...yet I still have my children to hug a little tighter. So the sounds I'm hearing are very normal indeed.

I guess it's the realization that in several homes tonight, the sounds aren't normal and routine. The normalcy is gone forever. These families have to begin a grief journey that is truly unimaginable.

Christmas stockings are hung and presents wrapped for eager hands and smiling faces that won't ever...

It's a restless kind of night. My mother's heart is hurting. Yes. It's a restless kind of night.










I'm restless

Update on Nick 11/25/12

I hope this finds you all well fed and full of thankfulness this weekend. The kids and I have had a wonderful Thanksgiving.

I’ve waited a few days to post this most recent update, because I wanted to just focus on being thankful.

Wednesday, 11/21, Kacie and I were in Birmingham with Nick for another chemo treatment.

Nick’s port did not want to work again. There was another blood clot blocking the end of the line. I wasn't able to gain access to the port two weeks ago to flush the line. I wasn't really surprised that there was a problem. After having some of the clot buster medication put in the line, it worked just fine.

The only real concern the oncologist has right now is Nick’s iron level. The levels seem to be trending down again. That usually means two things could be happening. 1) Nick’s body isn't absorbing iron properly again. OR 2) Nick is becoming anemic again. There is a difference between being iron deficient and anemic. For Nick, the iron deficiency means that something in his body is preventing him from absorbing and using iron properly. The anemia that Nick has a history of developing is called autoimmune hemolytic anemia. It’s a form of anemia that is caused by the /lymphoma spreading to the spleen.

The oncologist does not think that Nick is to the point of having the anemia flare up again. He actually thinks that Nick is having trouble absorbing iron properly. What is causing this problem? We aren't sure yet. It could be the cancer going active again.

We are really hoping and praying that this is just a fluke and the cancer is not growing again. For now, the oncologist wants to increase Nick’s daily doses of iron to three times a day. Yes, that is a lot of iron. Nick has had to do this before, so we know the routine.

Now, we wait and see what happens.

The other thing going on with Nick is the surgeon, Dr. Beierle, wants to see more in depth scans before she makes a decision about trying to remove the cancer from Nick’s abdomen. There are some insurance issues concerning getting new scans. The insurance doesn’t want to pay for them. The oncologist and surgeon are going to try to take a more in-depth look at the scans that were done in August to see if they can gather the information needed to make the necessary decisions.

We are waiting to see what happens on this side of things as well.

Nick is scheduled to go back the week before Christmas for his next doses of chemo and IVIG.

Lots of prayer will be very much appreciated.

Happy Thanksgiving to you all.

In HIS Grip,

Kristy 

And she's....

SAFE!!

I have a picture of a baseball ref waving his arms as the player slides into the base just ahead of the ball.

I'm safe! I made it through Thanksgiving #4 since Keith's death.

Yeah...I know. I'm still counting things. Not all the time and not everything though.

I am very thankful that today was a good day. I did have some moments when the sadness and grief showed up. Kind of like that family member that always brings the worst food to a meal. You hope that this time it will be different, but it's not. Well...not much anyway.

I had my cry. I let myself miss Keith and grieve for him. Not for very long. It's never for very long any more. I always have some Scripture that God brings to my mind or a realization that settles my grief back down. Today it was both. The Scripture was about mourning for a season. The realization was of how thankful I truly am that Keith is healed. It was exactly what I needed today.

The kids and I slept in this morning and spent the afternoon with extended family. I think for the first time in an extremely long time, I didn't cook any part of the meal today. Kacie baked some cupcakes to take. It was so nice to literally just show up, especially since I'm half way sick and utterly exhausted.

Between working as much as possible, traveling with Kacie for dance, and traveling with Nick for chemo, November has been quite busy!

No wonder I'm exhausted! When I get really tired, I get emotional. That's another reason I am glad today has come to a close. I don't need any help from holidays to stir up my emotions.

I hope everyone has had a blessed Thanksgiving.

In HIS Grip,
Kristy

State of Transition

For a long, long time, I have felt that myself and my family have been living in a constant state of transition. In a recent conversation with a close friend, I realized that we haven't been living as much in a state of transition. We have actually been living in a state of survival.

Yes...survival.

The YEARS of constantly fighting cancer with Keith and Nick have all been spent surviving from one day to the next. Sometimes, it's been one minute to the next...one foot in front of the other.

I don't spend much time trying to dissect the events over the past 17 years. There is simply too much heartache and pain. Too many bad memories that threaten the good memories.  What happened, happened and there isn't anything I can do to go back and change it. Keith and I made the best decisions we felt we could make at the time. No looking back. No regrets. That's been our motto for years. That is my motto still, although it is difficult to stick to it at times.

With my recent acceptance of God's call to become a teacher (Have I mentioned that to y'all? I'll have to check.), I have realized that what my friend has been saying is indeed true. We have been living in survival mode for a very long time. It may be more accurate to say that we have lived in both a state of transition and survival all these years. It's more like a balance scale.        

Survival outweighing transition more often than not.

Now, we are living in a time when transition is outweighing survival. 

Why do I say that? I say it simply from the realization that I am finally able to plan ahead. I am able to actually imagine and think about the future. I know that may seem like an alien concept to some. How can I have gone for so long without thinking about the future and making plans? It was because thinking about the future was too scary, too uncertain, too painful, and just too much. We were under so much stress with all of the health crises. I never felt comfortable making any plans or setting any long term goals. So much so, that I NEVER planned a trip without having trip insurance. I NEVER made a plan without there being not just the plan, but a PLAN B, C, D...and Z. My plans had plans. 

Some of y'all are snickering or laughing. You know me and my plans.

I am still a little bit scared that my plans aren't actually God's plans. It's okay though. I am praying earnestly that God will continue to only open doors and windows that He wants opened. 

I haven't set any unrealistic goals. My main personal goal is to finish my degree in Elementary Education. Even though I only need 2 1/2 years to finish my degree according to the program plan that I am in, I want to be finished in 5 years. I know all too well that life has a way of interrupting the best laid plans. The 2 1/2 year plan is with me being able to go to school full time. I'm not sure that is possible, especially since I have to work full time and be Mom. 

My hope is that some day, the time of living in a constant state of survival will be just a distant memory...instead of a way of life. 

Transition is actually the reality of life. I don't mind that so much.

I'm excited, nervous, and a little bit scared. It's nice to have a sense of a hope and a future. It's extremely comforting to KNOW that I am seeing Jeremiah 29:11 in living color!

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future."  Jeremiah 29:11 NIV

In HIS Grip!

Kristy

Kinsman Redeemer

I had not ever heard the term "kinsman redeemer" until a few years ago. The term sounded comforting. If I remember correctly, I first heard the term shortly after Keith's death. I was looking for comfort anywhere I could find it.

I found myself drawn to the book of Ruth. At first, I identified so much with Naomi. Her husband died and she was left with 2 children (sons). I saw myself in those few verses. I was stuck though, because I was looking for more about Naomi. More about how she dealt with grief and raising her children. I found nothing in the book of Ruth about Naomi and her grief or parenting through her grief. (Theologians, I'm just speaking from my heart here. A huge measure of grace please.) So, I closed up Ruth and went back to reading the Psalms, Proverbs, the Gospels or whatever verses caught my attention.

Sometime later, I was drawn back to the story of Naomi and Ruth. My focus was different this time though. Naomi lost her husband AND her sons! I realized I was beginning to see Naomi through the eyes of Keith's mom. What heartache! I haven't endured the loss of a child yet. Suddenly, I felt like I didn't identify with Naomi as much as I thought I did...at least not from that aspect. I did find that I definitely could identify with how she felt toward God. Naomi was extremely sad. She felt that God had turned against her.  
Ruth 1:13 "would you wait until they grew up? Would you remain unmarried for them? No, my daughters. It is more bitter for me than for you, because the Lord’s hand has turned against me!"

I could relate to how Naomi is feeling in this verse. There have been times when I felt that God had turned his hand against me. Granted, I don't allow myself to fall into that trap anymore. I recognize now that it is Satan using my doubts, fears, and grief to try to take my eyes off of God.

Something still nagged at me about identifying with Naomi. I couldn't figure it out at that time. I just knew that I felt somewhat unsettled about identifying myself with Naomi and her bitterness. Her bitterness was so deep, upon her return to Bethlehem in Judah, she changed her name to Mara.
Ruth 1:20-21  20“Don’t call me Naomi,” she told them. “Call me Mara,because the Almighty has made my life very bitter. 21I went away full, but the Lord has brought me back empty. Why call me Naomi? The Lord has afflicted me; the Almighty has brought misfortune upon me.”

Once I read this part of Naomi's story, it became very clear to me that the Almighty had not made my life bitter. He made my life better! I did not become empty or afflicted. Yes, life has been hard. Harder than hard sometimes, but I'm not bitter. I have joy in each and every day. Sometimes that joy is more difficult to find than others, but IT IS THERE! My joy is not in earthly things. My joy is in the Lord and ALL that HE HAS DONE.

So, I spent some more time in the book of Ruth at that point. I found myself reading about how Naomi and Ruth had bonded. I read about Ruth gleaning behind the harvesters in the fields of Boaz so that she and Naomi could eat. I learned about the kindness and protection Boaz offered Ruth. A kindness and protection not always shown to foreigners.

This is when I learned about a kinsman redeemer. A kinsman redeemer is defined as someone who is bound by Levitical Law to redeem a relative from serious difficulty. Boaz was a relative to Naomi's late husband Elimelek. As soon as Boaz was told about Ruth and that she was taking care of Naomi, he knew that it was his responsibility to help them.

I continued to read about Ruth and Naomi. After a time, Naomi knew that it was time for Ruth to be remarried. Naomi instructed Ruth to go to Boaz for guidance. Ruth did as Naomi bid. Boaz promised Ruth that he would see to it that she was taken care of. If the closer relative (kinsmen redeemer) couldn't take Ruth on as a wife, Boaz would do it himself.

I will admit that when I got to this part of the story, I wondered what Boaz was thinking. How could he do that? He seemed like such a nice man! Why turn Ruth over to someone she doesn't know? Hasn't she already been through enough just in the loss of her husband? She left her homeland and her family to take care of her mother-in-law! That just doesn't seem fair!

Once I realized that my thoughts were coming from living in today's world, the actions Boaz took made more sense to me. Naomi knew that the only chance Ruth had to become remarried was for a kinsman redeemer to step in. Since Boaz had already been acting as kinsman redeemer to both of them, he seemed to be the best person to go to for guidance. Keep in mind friends, women could not marry on their own. A male relative had to oversee the match. Women were property. Women could not own land. Everything had to be in the male's name. If there wasn't a male heir to the family line and property, the family name would be lost.

The story continues as Boaz meets with the other kinsman redeemer. This guy, once he realizes that he will be required to take on Ruth as a wife and it could endanger his own estate, decides against the transaction of the property of Elimelek, Mahlon, and Kilion (Naomi's husband and sons). Boaz keeps his promise to Ruth and completes the purchase of all the property of Naomi's husband and sons.

Ruth 4:3-10  3Then he said to the guardian-redeemer, “Naomi, who has come back from Moab, is selling the piece of land that belonged to our relative Elimelek. 4I thought I should bring the matter to your attention and suggest that you buy it in the presence of these seated here and in the presence of the elders of my people. If you will redeem it, do so. But if you will not, tell me, so I will know. For no one has the right to do it except you, and I am next in line."

“I will redeem it,” he said. 

5Then Boaz said, “On the day you buy the land from Naomi, you also acquire Ruth the Moabite, the dead man’s widow, in order to maintain the name of the dead with his property.”

6At this, the guardian-redeemer said, “Then I cannot redeem it because I might endanger my own estate. You redeem it yourself. I cannot do it.”

7(Now in earlier times in Israel, for the redemption and transfer of property to become final, one party took off his sandal and gave it to the other. This was the method of legalizing transactions in Israel.)

8So the guardian-redeemer said to Boaz, “Buy it yourself.” And he removed his sandal.

9Then Boaz announced to the elders and all the people, “Today you are witnesses that I have bought from Naomi all the property of Elimelek, Kilion and Mahlon. 10I have also acquired Ruth the Moabite, Mahlon’s widow, as my wife, in order to maintain the name of the dead with his property, so that his name will not disappear from among his family or from his hometown. Today you are witnesses!”

The Lord then blessed the union of Boaz and Ruth with the birth of a son. This son, became Naomi's kinsman redeemer. He was named Obed. This baby grew up to become the father of Jesse. Jesse was the father of David.

My Redeemer came from the house of David. Jesus. Only God can work things out in the way that through the death, bitterness, grief, sadness, and  hardships endured by Naomi and Ruth, THE ONLY TRUE KINSMAN REDEEMER would be born.

Ruth is one of my favorite stories in the Bible. It fills me with hope. It also reminds me that I AM REDEEMED!

I've been dating off and on for a little over a year now. I don't like dating. It's tough. I am constantly reminded of what I had with Keith, and that it's gone. I have learned some things though. The book of Ruth helped me make sense of some things too.

I don't need a Boaz to come into my life and fix everything. I'm not broken, and I don't need fixing. I don't want or need a kinsman redeemer. What I do want is someone to share my life with. I want a help-meet. I want the companionship of a man who loves me and loves my kids. If that man isn't in God's plan for me, it's okay. I'll manage. I KNOW that God has got a plan for me, just as he had that plan for Ruth so long ago.

All of this is a result of a recent date with a very nice man who decided he wasn't my Boaz. The thing is, I never asked or expected him to be anyone other than himself.

In HIS Grip,
Kristy

**All Scripture is taken from YouVersion and is from the NIV translation.**

Update on Nick 10/25/12

Hi Everyone!

Yesterday Nick and I were in Birmingham for his checkup, chemo, and IVIG.

Overall, it was a really good day. Nick’s blood work looks pretty good. His blood counts seem to be holding steady. The physical checkup did not reveal any issues. The oncologist seemed pleased with how “well” Nick seems. Nick is feeling pretty good today. Mainly he is tired. He did go to school this morning. :-)

The only problem that we had was with the port...again. It needed the special medicine put in it to clean out the line. That delayed things some. The medicine worked and the line cleared up. The IVIG and chemo were able to be given without any more problems.

The problem with this port/central IV line is it keeps developing something called a fibrin sheath on the tip of the central IV line located in Nick’s chest. A fibrin sheath is a collection of cells (similar to a blood clot) around some type of catheter (tube) in the body preventing full use of the catheter. This fibrin sheath has to be dissolved. If it isn’t dissolved, the fibrin sheath can harbor infection and make the patient very sick. (We’ve had this happen before.)

In order to dissolve the fibrin sheath, the central IV line has to be injected with some kind of blood clot dissolving medication. TPA is what is used at Children’s Hospital. TPA has been used in stroke patients to dissolve the blood clots that caused the stroke. It doesn’t usually take a lot of this medication in order for Nick’s line to work, but it isn’t something that you really want to keep putting in the line. What goes in the line, goes into the body. TPA is not something that anyone really wants to use on a regular basis.

Nick’s body has a history of developing these fibrin sheaths. It’s been a problem we have battled with every single port he has ever had. The line Nick has in right now has only been in a year. Usually we can use a line for 3-5 years before we have problems with it. I’m not sure with this one.

So, we are going to try something different during the time between chemo treatments. I am going to access Nick’s port at home in 2 weeks, flush the line really well, and put in fresh heparin (The medicine that is used to “lock” the line so no clots will form). We will find out if trying this additional flush and “lock” works when Nick returns to the clinic on November 21 for his next treatment.

Please pray that this works. I really don’t want to have to put Nick through another port removal/placement surgery right now.

Pray for me as I access the port. I’m not worried about accessing the port. I’ve done it before. I just want it to work. I’m praying for no issues when I access it. The procedure for accessing the port involves having a sterile field, being masked and gloved, sticking a special needle/catheter into the port, checking for blood flow, rinsing the line with sterile saline, then filling the line with heparin, and finally removing the catheter from Nick’s port.

Pray for Kacie. I will likely have to do this when she is home. It has been YEARS since she has seen any kind of medical procedures done at home. I’m not sure that she even remembers when the other procedures were having to be done with any regularity. Don’t get me wrong, this is a very minor procedure. So minor, I feel weird calling it a procedure. I’m just not sure how she will react to me having to actually “do” anything involving Nick’s chemo stuff here at home. I’ve tried very hard to keep anything chemo related away from our home since Keith died.

I haven’t told her yet what I’m going to have to do. I will as the time gets closer, but not until then. She stresses way too much over stuff like this.

Moving on...The oncologist spoke briefly with the surgeon (I can’t remember her name). She will not make a decision on removing the mass in Nick’s abdomen until a new set of PET scans has been done with the new higher tech machine there at Children’s. The surgeon is not satisfied with the pictures taken by the PET scanner here in Huntsville. I don’t have a problem with her wanting more pictures. It actually tells me a lot about how cautious and conservative she is. I like that! The problem is going to be getting the insurance to agree to pay for the additional scans.

Please cover this in prayer. Until these scans get approved and the surgeon is able to make a determination, we are in a holding pattern.

The target date for the PET scan is December 19. The oncologist wanted the scans done in November, but I don’t. I want to have the holidays without any major surgical decisions hanging over our heads.

The next chemo visit is November 21. The PET scans, if they are approved, on December 19. Then another chemo and IVIG visit on December 26 or 27.

Assuming everything runs as planned, we should have a decision from the surgeon when we return for the chemo visit on December 26 or 27.

So...even though yesterday was relatively calm, there are lots of prayer requests that have come out of that day.

Please pray as the Lord leads.

As always, we remain...

In HIS Grip,

Kristy Baxley

Only Grace

I realize I've not been posting much lately. There are some things that I am dealing with that simply hurt so much and so deep that I just can't share it here.

These are the words to he song that's on my heart tonight.

Pray for me friends. I'm having trouble getting back up again.


Only Grace by Matthew West

There is no guilt here
There is no shame
No pointing fingers
There is no blame
What happened yesterday has disappeared
The dirt has washed away
And now its clear

There's only grace. There's only love
There's only mercy and believe me its enough
Your sins are gone
Without a trace
And there's nothing left now
There's only grace

Your starting over now
Under the sun
Your stepping forward now
A new life has begun
Your new life has begun

And there's only grace
There's only love
There's only mercy and believe me its enough
Your sins are gone
Without a trace
and there's nothing left now
There's only grace

And if you should fall again
Get back up, get back up
Reach out and take my hand
And get back up, get back up
Get back up again
Ooh get back up again

There's only grace
There's only love
There's only mercy and believe me its enough, its enough
Your sins are gone without a trace
and there's nothing left now
There's only...there's only grace
There's only mercy and believe me its enough, its enough
Your sins are gone without a trace
And there's nothing left now
There's only grace....

So get back up, get back up again
Get back up, get back up, get back up again

Oh no, You never let go

The following lyrics are to a song by Matt Redman, "You Never Let Go".

I needed these words tonight. I need the reminder that God NEVER lets go. No matter what.

I hope someone else can find comfort in these words as I have tonight.

Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back
I know you are near

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We'll live to know You here on the earth

Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You

Update on Nick 9/28/12

Nick’s latest visit to Birmingham got pushed out a couple of extra weeks, because I got sick. I think it’s the first time in the almost 17 years of having to take him down there that I have been too sick to go.

So, we were there this week. Overall it was a very positive visit.

We got the final results on all of the scans that were done on Nick’s last visit. The scans show an amazing amount of stability. The oncologist said that the results were completely unexpected. He even went back and compared these most recent scans to scans done one year ago. There has been NO growth. NONE...AT ALL of the main mass in the lower right side.

There are no new tumors. The smaller spot behind Nick’s belly button is even in question about being a cancer. 

The doctor is wondering if it’s a lingering infection from surgery or something.

These AWESOME findings have made the oncologist question the continuing need for long term chemotherapy. 

There are questions now being asked about the main mass even being “live” anymore and if surgery is a possibility. The PET scans were not as defined as the doctor would like in order to make a more solid determination of whether the cancer is still active (live) or inactive (dead).

The oncologist is going to take Nick’s case before the surgical team for their opinion on trying to remove the mass. The last time Nick’s case was taken to the team, surgery was not an option. The risk was simply too great due to the location of the mass. It couldn’t be reached without putting Nick’s life at great risk. I don’t know that anything has really changed in that aspect, but I know that God is PERFECTLY capable of changing it.

The oncologist also said that he isn’t sure about what step to take next because this cancer isn’t behaving like the “books” say it should. We ARE in uncharted territory. Imagine that! We’ve been in that place before. Nick was the first liver transplant done to cure a cancer 16 years ago at UAB Hospital. I wouldn’t know how to act if things went according to previous medical history. It’s okay though, because God knows exactly where we are and what needs to happen. He has a plan. (Jer 29:11).

The plan that we agreed to set into motion will be some very subtle changes at first. Immediately, the oncologist has changed Nick’s chemo schedule to every 4 weeks instead of every 3. That will give the teams some time to see how the mass reacts without really putting Nick at major risk. If Nick’s immune system could tolerate going longer, we would stretch it even further. At this point in time, 4 weeks is really the max for his immune system to be strong enough between IVIG treatments.

While we are on the 4 week chemo/IVIG schedule, the oncologist will take Nick’s case to the team of surgeons. They will begin the painstaking process of looking at ALL of the scans to determine if surgery is a viable option. After the first of the year, the oncologist wants to schedule Nick for another set of PET and CT scans to see what the mass is doing. The oncologist wants to have these scans (and all future scans) moved down to Children’s. 

The hospital has a new, very high tech PET/CT scanner in the new building. Apparently, this new machine shows things in much getter detail than the one we’ve been using in Huntsville.

Why doesn’t he just go ahead and get these newer, more detailed scans? Because insurance won’t pay for them. The answer is that simple. We will be lucky if the insurance company approves the scans after the first of the year. That’s a BIG prayer request right there!

The next part of the plan is dependent on surgery. If the surgery is able to be done, Nick will have chemotherapy for 6 months to a year post surgery recovery to make sure that there are no lingering cancer cells. After that point, we will play the watch, wait and pray game. Watch, wait, and pray that the cancer doesn’t come back.

This is the first glimpse of a future without long term chemotherapy that makes sense to me. Nick has very mixed feelings about the surgery. I would be surprised if he didn’t. I’m not sure how I feel about it yet. I’ll know more when we have more answers I guess. 

The oncologist mentioned that this cancer isn’t behaving like the medical journals indicate. Why? He doesn’t have an answer to that question. He did say that he has had another patient who had a cancer that was not behaving in the expected way. They did a highly controversial surgery to remove an area that was adversely affected by the kid’s particular cancer. The kid has been cancer free ever since. There’s no proven medical reason why that worked. The oncologist even said he would be laughed at when he brings Nick’s case and proposed plan to the other doctors, because it is so out of the realm of accepted treatments for Nick’s type of cancer.

That quality is one of the things I like so much about Nick’s oncologist. This is the very same attitude that he had almost 17 years ago when we first met him. He was willing to think outside the box and look for other treatment options.

I have no idea what will come out of all of this, but my hope is that it will finally get Nick to place of normalcy as he enters adulthood. Being cancer free would be an AWESOME graduation present!!

There are lots of prayer requests here. Please pray as God leads you warriors.

In HIS Grip,

Kristy Baxley

PS: Nick’s blood counts all looked good. The liver function number, that was high last time, has come back down to a more normal level. His IGG level was low, but not rock bottom low. His kidney function levels looked good too! Praise God!

Update on Nick 8/23/12

It’s been a week since we were in Birmingham for the long stretch of tests and chemo. I have been waiting to hear results from these tests before I sent out an update.

Overall, everything looks to be stable. The PET and CT scans showed the cancer to be stable with a small amount of improvement. YAY! PRAISE GOD!

The tumor located behind the belly button showed the most improvement both on PET imaging for metabolic activity and on CT for reduction in size. The mass is still “hot” or PET positive, but the “heat” generated by the cancer cells was noted to be less. The phrase in the report described it as being “not as bright”. That is definitely some good news!

The larger pelvic mass did not show as much improvement in size. It is considered to be stable at this point. It was also still PET positive and without much change in the “heat” reading. Stable is good and we will take it! 

PRAISE GOD!

The other big praise is there were NO indications of ANY NEW DISEASE! Woo-hoo!!! Another huge praise!!! No new cancers!!

I don’t have the final impressions of the pill camera endoscopy, but the CT scans showed that there are polyps present in the small intestine. It did not show anything large that would cause a blockage. ANOTHER PRAISE!

It has been a year since Nick has had these GI tests run, so I am very happy that nothing large was found. This is the first time, with this length of time between tests, that nothing large has been found. PRAISE GOD!

I don’t anticipate the final results of the pill camera to tell me anything conflicting. In the past, these two tests have been in sync.

The only thing that the CT scans showed that did cause me some concern is called a calcified granuloma in the right lobe of Nick’s liver. From what I understand from the research I’ve done, this isn’t that uncommon. A granuloma is a benign tumor caused by a collection of white blood cells usually left over from fighting some type of infection or inflammation. Calcified means that it’s basically hardened. So...my guess is that it’s a little hard ball of old white blood cells.

When Nick’s lab work came back, one of his liver function numbers was elevated. That really concerned me. Even though it will be 16 years on Sept 3 since Nick’s liver transplant, I still watch his numbers closely. The elevation of this GGT level had me concerned and I did talk to the doctor about it. He was not overly concerned, because the number was not extremely high. It was just higher than Nick’s normal. Since that conversation, the results of the CT scans showing this calcified granuloma makes me think that is the reason for the elevation of the liver function. The research I’ve done has also indicated that some of the medications Nick has to take and the PTLD/lymphoma can also be the cause of the development of the granuloma. The best news is that it’s calcified, because that means it’s old.

I am not really going to worry about it until the transplant team tells me to worry about it. The doctor has ordered a full liver function panel of blood work next time we’re down there just to cover the bases. I’m good with that.

Another big praise is that Nick’s IGG level, which basically indicates how much immune system Nick has, was 1238!! That is the highest it has been in YEARS!!! It is completely normal. This is a major indicator that the IVIG infusions are working. We aren’t sure if Nick’s body is actually making any IGG on it’s own. The only way (to my knowledge) to know this is to stop giving the IVIG for awhile and we do not want to take that risk.

So with all of that in mind, the oncologist has decided to let us wait 4 weeks until our next trip to Birmingham for chemo and IVIG. This will allow the doctor to see what Nick’s IGG level does by waiting an extra week. How much difference can one week make? Infusions of IVIG are only “good” for 2-3 weeks. That’s why Nick has to get them so often. With his body not making ANY IGG at all, he needs the infusions of IVIG all the time. The theory the doctor is testing is to see how low Nick’s IGG level gets by waiting one more week before “refilling” with the IVIG.

I know this is a lot of information to digest. It’s taken me a few days to even get close to digesting all of the information.

There are lots of praises and answered prayers here. I am so thankful for that. I have been feeling really worn out and run down for a while. I REALLY needed to hear some good news. I am thankful.

Please continue to pray for Nick. Pray for me and Kacie too. When someone in the family has cancer, it affects the WHOLE family. I think we are all feeling the effects of fighting cancer for so many years.

Nick is scheduled to return to Children’s Hospital for labs, chemo, and IVIG on September 12. If anything comes up before then, I will certainly let y’all know.

Thank you for continuing to walk alongside us through this journey.

In HIS Grip,

Kristy Baxley

And now we wait

I don't know anything from the tests and scans Nick had this week.

We arrived in Birmingham Monday evening. Nick drank his prep for the pill camera. We actually had a pretty good night. I guess that's one small benefit to Nick not having a large intestine. These preps don't take all night.

Tuesday morning we got to the hospital bright and early. Nick did really well handling the diet restrictions for the 24+ hours. He was only allowed clear liquids after he ate lunch on Monday. Then he couldn't have anything to eat or drink from 10 pm Monday night until almost 10 am Tuesday morning. Then it was only clear liquids again. He was able to have some pudding a little before noon on Tuesday.

The test ended a lot quicker than we anticipated. The pill camera takes as long as it takes. It ended it's journey a little after noon on Tuesday. We weren't anticipating it to be finished until after 3:00. Another blessing there. The GI nurse was a little concerned that the camera might have traveled too quickly to get good pictures. I haven't heard either way yet.

After we left the hospital Tuesday afternoon, I took Nick to eat some food. He was so hungry. We had an enjoyable evening swimming at the hotel pool. We were the only ones in there. I got a nap in and was able to catch up a little bit on resting.

We were back at the hospital on Wednesday morning. This time Nick was only without food and drink for a few hours in preparation for the CT scans that morning. Nick was worried about being able to drink the bottle of nasty contrast for these particular scans. It's not the usual for him, and this stuff even smells bad. The change in the contrast this time is so the doctors can look at the intestinal lining to see if there are any polyps growing from the genetic disorder.

Nick drank the contrast down without any problems. I am so proud of him! He managed to keep from getting sick from it. That is a huge answer to prayer. Once the CT scans were finished, we headed back to the cancer clinic for Nick's check up and infusions.

The checkup went fine. The doctor didn't find anything that overly concerned him. Nick's Igg level is AWESOME!! It's very much in the normal range right now. BIG PRAISE!! Most of the other blood counts were good as well. There were two that stood out as being off though. One is the sedimentation rate (aka sed rate). It basically measures how fast the red blood cells settle to the bottom (I think). The faster they settle, the higher the sed rate. That higher level is an indicator of inflammation. It is a blood test used in many ways to diagnose or interpret different diseases.

Anyway...Nick's sed rate was a little high. Not majorly outside the bounds of normal, but it will bear watching. The other lab value that is a cause for concern is the GGT. This number is an indicator of how well the liver is functioning. We have lived by the GGT for 16 years. The liver transplant team looks at this number to help determine if the liver transplant may be going into rejection or is already in rejection. Nick's GGT has been very good for a very long time. It was outside the bounds of normal on Wednesday. Over 50. 50 was the magic number the first several years after the liver transplant. As long as the GGT stayed under 50, we were good. Nick's level on Wednesday was over 50. :-(

I'm not sure whether to worry about it or not. The oncologist said that we would also watch this number as well to see if there are any problems. I know the transplant team will be looking into as well. I don't really know what to think about it. I don't know how the transplant team handles the increased levels after so many years. So...more uncharted territory.

While Nick was receiving his chemo and IVIG infusions Wednesday afternoon, there was an emergency with another child in the same treatment area. It was really bad and really scary. The child had a severe allergic reaction to the treatment he was receiving. The staff ended up having to call the CODE team to come help get the child breathing again. They were able to get him stabilized and he was moved to the intensive care unit for further care.

That situation is a part of the reason why I don't have any results on the PET or CT scans.

The oncologist said he will call me once he has thoroughly reviewed these scans and compared them to previous scans. I had hoped to hear something by now, but I haven't. Nick's doctor is notorious for calling at really odd times, so it's possible for me to hear something this weekend...even on Sunday.

I'm doing okay with leaving things in God's hands most of the time. It helps that the kids are starting school on Monday. Nick's first day of his senior year. Kacie will have her first day of  seventh grade..."junior" high. WOW! When did they grow up?

 As always, we are trying to remain...

In His Grip!

Kristy

Ups and downs

Things have been mostly routine lately...or I've been trying to convince myself that they are routine. In all actuality, nothing is routine. I feel like my world is spinning out of control and there isn't anything I can "do" about it.

You may be wondering what the heck I am talking about. I know I haven't been writing here much. Like I said, I've been clinging to what little bit of routine there is. I haven't even been writing much in my private journal.

My little battle weary family is going through another major transition. Nick is turning 18 in 2 weeks. That has led to some drastic changes AND acceptance of certain realities that have taken us both by surprise. Nick is starting his senior year in high school. WOW! It's a tremendous achievement for Nick, especially since Keith and I were told no less than 5 times that he wouldn't live, he wouldn't be able to function outside of a third grade level, and he would never be able to be an independent adult. It's all wrong. The doctors were all wrong. God was and is in control of this young man's life. He always has been. He always will be.

So...what's my problem? My emotions are in a crazy whirlwind once again. It is sadness and grief, but these emotions that have become so familiar to me are changing. I'm sad that Keith isn't here to see Nick growing into a man. I'm sad that Keith isn't here to teach Nick how to be a Godly man.

I'm having nightmares about my lack of ability to be a father figure to Nick. I can't be what I'm not. I'm not the only thing that Nick needs right now. He needs his dad and his dad isn't here.

As if ALL OF THAT weren't enough, it's time for Nick's version of the yearly tests. Tomorrow he has to begin the prep for the pill camera endoscopy that will take most all day Tuesday. Then on Wednesday, he will have CT scans, chemo, and IVIG.

I keep telling myself this is just routine, but now that the time to actually do this is here...I'm not so sure. It's occurring to me that this "routine" we are in will likely be Nick's routine until further notice. Chemo, IVIG, scans, scopes to check the progression of the polyposis....and it begins all over again. It will be this way until God either calls Nick home or He gives Nick a miracle.

It's occurring to me as I see other young men Nick's age enter their senior year, that what Nick is going through is so far removed from routine. Nothing about it is routine. Keith and I did the best we could with what we had to give Nick a sense of normalcy and routine when life seemed like it was spinning out of control. I've tried to find the new normalcy since Keith's death. Just when I think that I'm doing ok with being a single parent and making the hard medical decisions for Nick without his dad, I get hit with something else that causes me to question myself and my abilities as a parent.

I'm in a rough place today. I'm crying and I haven't needed to cry in a long time. Kacie wanted to know why we didn't go to church again this morning. It's because I just couldn't get ready. I just couldn't make myself go. The nightmares last night have left me with a huge amount of sadness and grief. More than I've experienced in a long time. I don't know what I'm able to accomplish today. Right now, it's sitting here on the couch crying.

So...pray for me friends.

Kristy

Update on Nick 7/27/12

Nick and I were in the clinic for another round of chemo and IVIG on Wednesday, July 25.

Overall, everything went well. The only major issue we had was when the nurses had a difficult time gaining access to Nick’s port (the permanent central IV line in his chest). The problem this time was actually getting the needle in the right place. This is not a problem that we usually deal with. It’s very rare actually. Anyway, after multiple attempts, Nick’s blood pressure dropped rapidly, he broke out in a sweat, and he turned gray. The nurses and I got Nick laid down before he actually went fully unconscious. Nick immediately came back around, so the nurses and doctor all felt like the episode was a fluke. Just something that happened from the stress on Nick’s body and him holding his breath too long. His blood pressure remained fine throughout the day and there were no more problems.

It scared me. The nurses were AWESOME!! Their calm approach kept me calm. I don’t scare easily, but when it’s something Nick hasn’t EVER done before...well...it scares me.

As far as I know, Nick’s lab work was good. I do know that there is still signs that the chemo is effecting Nick’s bladder. The levels are still within the parameters of allowing treatment though.

In three weeks, Nick is scheduled for CT scans. The scans will be looking to see what the cancer is doing, if it’s spread anywhere, and also to see if there is any activity with the FAP (the genetic condition that causes intestinal polyps to grow out of control).

Normally, Nick is really good with CT scans and drinking the contrast. With this set of scans needing to look at the lining of the intestines, Nick will have to drink a different contrast. This contrast is very thick and chalky. It is very difficult for Nick to drink it, especially because of the way the chemo has affected his sense of taste and texture. Nick ALWAYS gets sick when he has to drink this stuff. I have already asked that the doctor try to find another way of seeing what he needs to see without putting Nick through this.

Please pray that either an alternative can be found or that Nick will be able to endure it without getting sick. Also pray for compassion from the radiology technicians. They tend to think that every child acts this way just because they don’t want to drink the stuff. They don’t realize that Nick isn’t putting on an act. They always seem to forget that he’s the kid that will drink whatever they tell him to without complaint 99% of the time. If he says he’s getting sick from it, he really is. It’s not some excuse to try to get out of it.

Can you tell I’m stressed already?

The oncologist also wants Nick to have a PET scan to check the molecular activity of the cancer. The last time the oncologist wanted this test done the insurance wouldn’t pay for it. The doctor feels like Nick really needs to have the PET scan done. It’s been a year since the last one was done. Please pray for that situation.

The GI doctor is also being consulted about scheduling a scoping procedure to check the FAP as well. It’s been a year since they’ve looked. It’s time. Please pray they don’t find anything.

We are trying to get everything scheduled before school starts. The CT scans are scheduled for August 15. We don’t have any information on any of the other procedures yet. I’ll let you know when I do find out.

The oncologist also agrees with the kidney specialist’s thoughts about the episodes of Nick having the balance issues. Nick has been adding more fluids most mornings. So far, so good. No problems. Praise God!

I know this is getting long, but I have one more concern that I would like you to cover in prayer.

Nick is turning 18 in less than a month. That means transitions are going to need to begin happening. Nick will be able to remain a patient at Children’s until he’s 21, because he has been a patient there for so long. The problem comes with the complexity of Nick’s health. His oncologist is going to begin the process of finding an adult oncologist to treat Nick. It will likely take most of the next three years to fully make the transition from pediatric oncology to adult oncology. I don’t understand all of the aspects, but Nick’s doctor does. He told me that it’s something that is not easily done and takes a long time. To my understanding, it’s because Nick will be an adult with a pediatric cancer and there isn’t a lot of knowledge available in that area.

The only thing I know to do is pray. God knows what Nick needs. He will lead us there.

Thank you for continuing to lift us up in prayer. Thank you for the notes of encouragement and being there for us.

Trying to remain...

In HIS Grip,

Kristy Baxley

Update on Nick from July 12, 2012 **Out of order**

Hi All!

I’ve been waiting to hear the final results on Nick’s MRI, but since I haven’t heard anything I decided to go ahead and share what I know.

The preliminary results are that the MRI is negative. The only thing noted in the radiologist’s report is a cyst in the maxillary sinus.

I use the term “preliminary” because I haven’t actually spoken with Nick’s oncologist about the MRI results at this time. I have learned from past experience not to completely rely on the radiology report until Nick’s oncologist has reviewed the scans WITH the entire team.

Since I haven’t heard anything, I am taking the “no news is good news” approach. Thank you for the thoughts and prayers. This is a huge praise.

We still don’t have an answer to what could be causing Nick’s occasional balance issues. The next steps and tests are still to be decided. An EEG is not out of the question.

Nick had his lab work, chemo, and IVIG last week before the MRI. He did very well. He didn’t have any nausea issues this time. Another huge praise. The only real post treatment issue Nick had was fatigue. He tired easily and stayed more tired for about 4 days after his chemo. That seems to be the pattern of how things are going to be with the chemo now.

Nick will have a checkup with the kidney specialist this coming Tuesday, July 17. Yes, it’s another trip down to Birmingham. It’s just becoming too complicated to see more than one specialist in one day now.

Nick’s next chemo treatment is scheduled for Wednesday, July 25. Yes, that is the week after the trip to see the kidney doc. Ugh...I am so tired of these trips.

Approximately three weeks after the July 25 visit, Nick will likely be scheduled to have GI scopes (some combination of endoscopy, colonoscopy, pill camera) done to check the progress of the genetic disease that caused Keith’s cancer and death. Nick will also be scheduled to have CT scans to check the progress of the cancer and receive his chemo and IVIG around this same time. Yes, we will likely be spending at least one night in Birmingham. It’s going to take at least two days for all of this to be done. At this time, I don’t anticipate there to be a hospital stay, unless something happens during the scoping procedure. The kids and I will likely stay in a hotel near the hospital.

There are lots of prayer requests in this email. Please pray as God leads.

Please also continue to pray for the stuff from the wreck Kacie and I were in to get settled. It’s taking a long time to get the settlement worked out. I don’t want to involve an attorney, but I may have no choice in the matter.

Our physical injuries are getting better with every passing day. Kacie’s knee is getting stronger, but she still has some soreness to deal with. I guess the same can be said about my shoulder. 

Please pray for me. I’ve been looking for a job for a few months and haven’t found one. I REALLY need more income. I am also having to look at health insurance options for Nick. His insurance and social security benefits will cancel once he graduates in May 2013.

Thank you for the continued thoughts and prayers. It’s been a long, hard road and doesn’t seem to be getting any shorter or easier.

Trying to remain...

In HIS Grip,

Kristy Baxley

Update on Nick 7/17/12

Nick had a checkup this morning with the kidney specialist at Children’s Hospital. Nick’s kidney function looks to be settling down...finally. The kidney doctor gave us a lot of very good information today about why the kidney problems only seemed to show up recently, as well as a possible answer to Nick’s balance issues.

The kidney problems have been there since Nick had the chemotherapy for the liver cancer 16 1/2 years ago. We have suspected there were problems, but each time a problem cropped up, it would go away almost as quickly.

The doctor said today that the tests that were done six months ago and the lab work in between all indicate that the kidney problems are not a new issue. It’s actually a long term issue that is now to the point of needing treatment. The reason it’s just now showing up is because the kidneys have four basic levels of function. Once the injury to the kidneys takes place, the levels of function immediately begins to decrease. The more injuries that happen (from toxic medication in Nick’s case), the more layers of function that are affected. The human body has many ways that it makes up for the loss of function, until it gets to the point that medication is needed to supplement. That’s basically what happened back in the winter with Nick’s blood pressure issues. It was a symptom that the kidneys were no longer able to handle the toxins.

The DMSA scan Nick had in February was to see how much scarring there was in the kidneys. The doctor said today that it wasn’t a question of if there was scarring. It was how much scarring. Nick’s kidney’s are functioning at 60% on one side and 40% on the other. It’s not terrible by any means. One side obviously has more scarring than the other.

With that in mind, the goal now is to protect the kidney function Nick has left. The medication that the kidney doctor put Nick on several months ago to treat the blood pressure issue is actually being used to kind of pump up the kidneys and support their functions. The doctor told us today that Nick will not ever be able to come off of this type of medication. It has officially been added to Nick’s maintenance medications. This particular medication is most effective in protecting kidney function in diabetic patients. The success rate for someone with Nick’s particular health issues is not nearly as high, but as the doctor said, “We will take what we can get.”

I asked if any of the kidney issues or medication could cause balance problems. He said actually it all can. It’s a combination of the medication and dehydration. He advised Nick to add 12 ounces of fluid –preferably no calorie Gatorade- very first thing in the morning. It makes a lot of sense to me, especially since Nick can dehydrate very quickly and without any real warning. So, we are going to try this and see if it helps.

Today was very eye-opening for me. I knew Nick’s kidneys were fragile, but I didn’t realize exactly how fragile. If Nick ever has another massive infection like the one he had in 2005 that requires major IV antibiotics, he WILL go into kidney failure again. The doctor said today that is the only guarantee he will give me about Nick. This saddens me, but it also helps me to be a better advocate for Nick. I know that the kidney doctor needs to be on call when something has the potential to go haywire...along with the other that are already in that group.

The doctor also said today that he will continue to monitor Nick from a distance, meaning he’ll keep an eye on the different labs that are done and blood pressure that is recorded each time Nick is in clinic for chemo.

That is very reassuring.

I hope all of this is somewhat clear.

Overall, it was a very good checkup with what I consider good news. Huge praises for answered prayers!!

Thank you for covering us in prayer. It was very nice to go into Children’s, see the doctor, get good news, and leave all within a couple hours!

We go back to see the kidney doctor in 6 months.

We go in for chemo and IVIG next week.

Working to remain...

In HIS Grip,

Kristy Baxley

Tomorrow

Tomorrow is July 3. It is Kacie's half birthday. I have no idea why she keeps up with it, but she does. It could be because when she mentioned it three years ago, I came up with a spur of the moment family outing to celebrate her. We had just found out that her daddy wasn't much longer for this earth, and without a miracle from God, Kacie's daddy wouldn't be here for her 10th birthday.

We went bowling. Keith cheered us on from his seat, the oxygen tank his ever present companion. We also went to Sonic for treats. This small family outing would be our last one together before Keith's death a few days later.

So, I'm sad. I miss that sweet man. It is so hard to believe that in just a few days, it will be 3 years since Keith left this earth and his very sick body.

I'm finding that even though I am moving forward with the process of living, there will always be a part of me that remains with Keith. That is something that many who have traveled a similar path have tried to explain. I am now fully beginning to understand.


I can go out on a date or meet someone new, yet still grieve the death of my husband. 




sigh...

Where...Who...How...There...I am

Where does my help come from? My help comes from the Lord.
Where does my strength come from? My strength comes from the Lord.
Where do I turn when it seems there is no where to turn? I turn to the Lord.
Where do I place my worries and fears? I place them at the foot of the throne of Jesus.

Who is with me when I am completely alone? The Lord is with me always.
Who carries me whether I know it or not? The Lord carries me always.
Who is holding me close when the night is too long? The Lord holds me.
Who guides my path? The Lord is the lamp for my feet and the light for my path.

How can I have faith? If I didn't have faith, I would have NOTHING.
How can I love God when I can't see Him? To know God is to love Him.
How can I know God is real? I know He is real because the Bible says He is real.
How do I make it through each and every day? I make it because I know that God has a plan for me.

There are times when I am overwhelmed with what I have lost: my husband, my son's health, a "normal" life.
There are times when I feel utterly and completely alone. 
There are times when I feel helpless, hopeless, and just LESS.
There are times when I feel like I don't have enough faith.

I am reminded that God is with me every moment and step of the way.
I am assured of His presence and peace. All I have to do is ask.
I am promised that He will NEVER forsake me.
I am told that enough faith can be the size of a mustard seed.

It's been a tough few days for me. I needed to see these things. I need the reassurance that He is here. I need to know that I am not alone.

I need to know that I am...

In His Grip!

On my mind... Caution: This is not pretty!

There is so much on my mind these days that I can't seem to make sense of any of it.

MLC tells me to just get it out when things start jumbling up. Sometimes, I just want to scream at him, "But what if I can't put it into words? WHAT AM I SUPPOSED TO DO THEN?!"

Come to think of it, I may have already done that...

Since I've been seeing the same lovely counselor for 6 years, there's probably not much that I haven't said to him. Poor guy!

So...I guess I should share what's on my mind.

The stuff with Nick is probably number one right now. As hard as I try to keep the what if's from circling, they do. Everything from memories of what happened with Keith to tons of memories of Nick's health problems. All of that just collides and combines to form a jumbled up mess.

It seems like I have so much circling in my head that I just can not seem to think straight anymore. It seems like as soon I begin to think somewhat clearly, everything falls to pieces and overwhelms me again.

I don't like admitting that I feel like I can't handle things. I don't like admitting here, in my journal, or to MLC. I know that I'm not Wonder Woman. I just don't know that I can "do" this again. I am sick and tired of cancer living in my house. I feel like I am constantly living in a state of chaos. I feel like I can't get a hold on  anything lately.

It REALLY bugs me that it feels like life is ALWAYS in a state of transition. I don't want to hear any of this, "Everyone's life is always transitioning." or "God does give you more than you can handle." or "Every day is a new day." or "Just take things as they come."

That is my point. I am tired of taking things as they come. I really would like to be able to make plans. I would like to have enough money to take a vacation. I would like to NOT have to go to Birmingham ALL the dang time!!! I would like to have enough energy to get my entire house cleaned in just a morning. I would like to have a life that didn't involve a daily fight to keep depression, bad memories, creditors, and grief at bay. I would like a life that is just plain. A plain ole life that doesn't need to have a Plan A, B, C, and Z.

Ok...so my rant is finished for now. Kacie just brought me a "tropical" drink...Arizona Diet Blueberry Green Tea with crushed ice. 

Who can stay in a rant with such sweet kiddos?!

I guess I found out how I can keep going. These kids keep me going.

Always...

In HIS Grip

Update on Nick 6/14/12

***Latest News*** Nick isn't feeling well at all today. He has gotten sick to his stomach. Please pray that he'll feel better quickly.

***Original Post***

Nick and I were in Birmingham yesterday at Children’s Hospital for another checkup with his oncologist, as well as chemotherapy and IVIG.

Nick’s blood work looks very good. Every level that came back was within normal range. As always, there are some blood tests that don’t come back right away. With these particular tests, no news is good news.

Everything went very well with Nick’s port working, and Nick receiving the IVIG and chemo.

Now on to the hard part...

I have mentioned in the last few months that Nick has had an issue here and there with maintaining his balance at odd times. I also pushed for Nick’s oncologist to order a set of CT scans of Nick’s brain to check for any tumors that might be growing and causing the small issues with Nick’s balance. Those scans were done in March and everything was fine. The CT of his brain did not show any areas of concern...at all.

Nick went for a little while without having any more balance issues. Myself, the oncologist, Nick, and his ENT doctor attributed the cause to a possible inner ear/fluid in his ear issue or even just clumsy from long bone growth. Nick didn’t have any more balance issues for about a month (give or take). There hasn’t been any kind of pattern to when the balance problems occur.

Nick has had two relatively defined balance episodes within a week of each other. When Nick told the oncologist about this most recent event, the doctor immediately did a neurological exam and asked Nick several very pointed questions (Back pain? Ringing in one ear or both ears? Headaches? Dizziness? Loss of balance upon standing? etc.). Nick answered no to all of the questions.

I’m not sure if the oncologist saw something in the neurological exam that concerned him. Once the doctor finished the neuro exam, he told me that he wants a full MRI of Nick’s brain with and without contrast. He also said that if there is a cancer there it is probably a slow growing one.

This has been Nick’s doctor for almost 17 years. He has NEVER said these words to me. Every time, up to today, Nick has reported having the occasional balance issue, the doctor did NOT even entertain the idea that there could be a cancer in Nick’s brain. The CT scans done of Nick’s brain in March were because I pushed for them. They were for my peace of mind. The CT scans of Nick’s brain were done at the same time the other CT scans were done and did not require any extra effort. An MRI requires more effort and isn’t ordered without a lot of thought. I did no coercing or convincing today. The MRI decision is 100% on the doctor.

I’m sorry if this is confusing. I don’t have a very good grasp of everything just yet.

The MRI will likely be scheduled for Thursday, July 5. I will find out this coming Monday on the exact time. The doctor wants it done the next time we come back to clinic. He did not see any reason for the MRI to be done sooner. I’m perfectly fine with waiting until then. We will get the results the same day Nick has the MRI.

I am operating on a need to know basis with the kids. Obviously, Nick knows since it’s his body and he was there. The doctor and I both tried very carefully to keep Nick from being afraid. Nick knows that the MRI is going to be done to try to figure out why he is having the balance issues. Kacie knows NOTHING at this time. She is away at CentriKid Camp with our church until Friday. I will likely address everything in the same way that I did with Nick. I am being so careful with what words I use because of what they saw happen with their dad. I am being VERY careful about using the words “tumor” and “cancer” in conjunction with “brain”. I do not want either of them to be afraid or worried before there truly is something to worry about.

I am asking to please pray specifically that the doctors be able to see anything that needs to be seen. Please pray for some resolution to Nick’s balance issues. Clear and defined answers to these things that are plaguing us would be nice.

Above all else, please pray as God leads.

We are truly...

In His Grip!

Kristy Baxley