Additional Prayer Request for Nick 12/30/10

I certainly was not expecting or planning another post until next week, but things do change.

Nick got up this morning with a high fever and feeling really bad. I called the oncologist in Birmingham, which is the protocol we have to follow, for instructions. I was told the Nick needed to be taken to Huntsville Hospital Pediatric ER for an evaluation, blood tests, and to have blood cultures drawn out of his port. The results of this ER visit would allow the oncologist to decide if Nick needed to be admitted to Children's Hospital in Birmingham.

The ER doctor and nurses were wonderful. The blood cultures were drawn from Nick's port, and lots of other blood tests were drawn. A chest x-ray was done to rule out pneumonia. Nick was also swabbed for flu and strep throat.

The initial blood tests were fine and didn't really show anything. The blood cultures from the port will take up to 5 days for any infection there to be ruled out. The flu test was negative, but the strep test was positive.

I have never been so glad to have a positive strep test. This is something normal, not cancer related.

I know that this may not be easy to understand, but things with Nick can become very bad, very quickly. When a body runs fever, it is an immune response to whatever bacteria or virus is present. With Nick's immune deficiency, his body does not always react with enough of an immune response. Usually by the time Nick is running a high fever, it means that he is very, very sick. It's for that reason that the oncologist wanted Nick evaluated in the ER.

My prayer requests are that Nick feels better quickly, the medications work effectively, and the blood cultures will come back negative.

If the blood culture results show the presence of some kind of bacteria, it is likely that Nick will need surgery to remove his port and IV line. Then at some point, either during that surgery or in an additional surgery, a new port and IV line will need to be placed. The port and IV line are necessary for the administration of the chemotherapy. It also provides Nick with the additional benefit of not having to be stuck in his arms for blood tests. Nick has very limited vein access in his arms due to so many needle sticks during the last 15 years.

The thought of Nick needing to undergo surgery to remove the port and line is frightening for me. When Nick had to have his last port and IV line taken out many years ago, he nearly died from a very rare surgical complication. The IV line got stuck inside the vein and broke when the surgeon attempted to remove it. The broken IV line traveled through the left ventricle of Nick's heart, down into one of his lungs, and punctured that lung. Nick aspirated (vomited while a breathing tube was inserted and fluid entered the lungs) during the surgery. The surgeon had to call in a team from the Cardiac CATH lab to come and fish out the line from Nick's femoral artery (located in the groin area in the bend of the leg/hip). The surgeon also had to make other incisions to remove the pieces of line near Nick's collar bone and under his left arm. We spent a very long night in the Surgical Intensive Care Unit at UAB Hospital with Nick being very closely monitored. Prayers were answered when the chest x-rays were done the next morning and all of the fluid was gone from Nick's lungs. Nick's oxygen levels had improved and we were moved to a room. Later, we were able to come home and Nick had to take antibiotics for a long time. Everything ended well, but it was a very frightening time for all of us.

I am worried about there being a repeat performance.

Please cover us in prayer. I know that there are many prayers being offered up on our behalf. I truly appreciate them. I don't know how I am going to get my little family through this next journey, especially when I don't feel properly equipped.

The events of today showed me that I can handle whatever happens...at least during the moment. I still know how to take care of whatever needs to be done. I still know how to talk to the doctors and nurses. I can still turn into hospital mom in the blink of an eye. The difference is I don't have Keith fighting along side me.

Please continue to pray us through the fire.

In Christ,
Kristy Baxley

Update on Nick 12/29/10

Nick and I went to Birmingham for another checkup and IVIG today. A huge praise is that, with the mega dose of IVIG Nick received 4 weeks ago, his IGG level today is 572! It has not been that high in months and months. Nick received another large dose of IVIG today.

Since the visit 4 weeks ago, Nick has been dealing with a few issues that concerned me. When we met with the oncologist this morning, I talked with him about Nick's issues. Nick has had weight loss (22 lbs since October), loss of appetite, intermittent low grade fevers at night, and fatigue. These are all symptoms that the oncologist has been watching for, because they are indicators that the cancer has become active.

During the physical exam, the doctor found that Nick's spleen has become enlarged. This is also another indication of the cancer becoming active and possibly spreading. After we talked about everything and the doctor talked to Nick about how he's been feeling, the doctor decided that the time has come for action.

Nick and I will be returning to Birmingham next week on Thursday, Jan 6, 2011 for CT scans and chemotherapy. The CT scans will be a base line scan to measure the mass in the abdomen and look for any new places that the cancer might be located. These scans will be used to determine how well the chemo is working. I will know more next week on the details of how long and how often the treatments will be.

Nick doesn't really want to take chemo again, and I don't blame him. He is going to go forward and take the treatments though. The doctor explained to Nick that the chemo should help him feel better again and hopefully will be that way for a while. The doctor also reassured Nick that this chemo won't be anything like what Keith experienced. I didn't realize, until that moment, that Nick might be having some fears about that. It has shown me, once again, exactly how much I like Nick's oncologist. He's been Nick's doctor for this 15 year battle against cancer. Yes, it has been that long.

The chemo that Nick will be getting is the same chemo that he got 4 1/2 years ago. It's a mild regimen of chemo compared to a lot of the drugs. The doctor will have to take it slow with one chemo, because of the way it attacks the immune system. The other chemo drugs can cause nausea, hair loss, low blood cell counts, and kidney dysfunction.

There will also be medications brought on board to help counter the side effects: Zofran for nausea, Bactrim to protect against bacterial infections, and probably others yet to be named.

Today, we came home with 21 days of antibiotics to (hopefully) clear up this sinus thing Nick has now before the chemo starts next week.

I realize this is pretty straight forward. It's the only way I can get the information written tonight. I am devastated right now. I am trying to just hold on. Kacie has taken the news really hard. She is scared and worried. Nick is sad. He really is tired of having to take chemo.

Please pray as God leads. I don't even know what to say, except I can't believe that we are here...AGAIN!

Kristy Baxley

Merry Christmas

I hope this finds everyone well this Christmas.

The kids have had a wonderful Christmas. I have too, I guess. Kacie has said it would be the best Christmas ever if her dad were here. What does a mom say to that? I just hugged her and said I know.

We've had a very quiet day today. It's just been the three of us. Mom is at home on day 4 of the flu. Christmas with her has been postponed. We went for dinner at my sister's house yesterday. Keith's parents came over on Thursday and we did Christmas then. That was mainly just in case the weather was bad today, and my presents for the kids went with theirs.

We got a wonderful, very rare white Christmas in Alabama this year. At my house, we probably got about 4 inches of snow. It has been a beautiful sight. When I was a kid and we lived in west Tennessee, white Christmases happened at least a couple of times. We usually had snow every winter. It has been a long time since I have seen this heavy, wet, perfect for snowballs kind of snow. That is a wonderful Christmas gift.

I am glad that the day is almost over. I have had to work really hard to make myself do even the smallest Christmas activity this season. I have to say that this year has been more difficult for me than last year. Last year, I wanted (needed) to make Christmas special for us. This year, I just want it to be over. I don't have to make it through a whole year of firsts anymore. I don't have to wonder what it's going to be like. I'm not in shock anymore.

I'm having to accept with each and every Christmas, Kacie and Nick will be without the one thing they want the most...their dad. It's the one gift that I can't give them. I would if I could...

Update on Nick 12/13/10

I've tried to write this update several times and I just can't seem to make the words make sense. This update is almost two weeks late. I'm sorry about that.

Nick and I traveled to Birmingham on Wednesday, Dec 1. Nick's port acted up and needed to have the medicine to clear the line put in again. We met with the oncologist for the physical exam and nothing much was really found. The doctor didn't really have much to say this visit at all.

The doctor decided to go ahead and give Nick a 100% dose of IVIG. The IGG level was taking a long time coming back, so we just went ahead with it. Nick received 80 grams of IVIG. That roughly equals 1 gram of IVIG/kilo of body weight. That's a lot of IVIG. The nurse and I decided to try pushing the amount given per hour this time so that Nick and I could make it home before bedtime that night. Nick was able to handle it without having an allergic reaction during the infusion. This is great news. I hope that we will be able to do this more often. It really cuts the amount of time it takes for all of the medicine to go in. This time it took 4 hours for the infusion. Not bad with everything considered.

Here's the part where it gets tough and I can't seem to make sense of things.

On Thursday night (the day after Birmingham), Nick began running a low grade fever. He had some congestion and I assumed that the fever was from that. I assumed that Nick would need an antibiotic and would likely miss school the next day. Well, the fever disappeared as quickly as it appeared. That worried me a little bit. The last time Nick had fever that behaved this way was when the PTLD/lymphoma became active 4 1/2 years ago. Nick became sick from the cancer and needed chemotherapy.

Nick was fine Friday morning, but I went ahead and called Birmingham. It was finally decided that Nick needed to have his blood counts checked to try to determine if he had a virus or a bacterial infection. There was also the question if the port was infected and that had caused the fever. There were a lot of questions and no answers without having blood work done. So, off we went to the pediatrician's office late Friday afternoon.

The pediatrician ran blood work, a flu test, and a walking pneumonia test. He was congested and had developed a rough sounding cough. All of the tests were fine. There wasn't anything in the tests: no out of whack levels, no flu, no walking pneumonia. Nick being Nick, the decision was made to go ahead and put him on an antibiotic for the congestion. That's the standard course of treatment for Nick.

The question was raised if the weird fever could be a delayed reaction to so much IVIG. The pediatrician and the nurse in Birmingham think that could have been possible. That evening, I gave Nick a dose of Benadryl and the fever was gone.

Then it came back five nights later...

Nick has no other symptoms. Nick feels fine. Most of the time the low grade fever starts around 8 or 8:30 pm and is gone by 11:00 pm. If not by then, it is gone sometime before morning. Nick has finished his antibiotics. The congestion is better. The only thing that I know that fits this pattern is the cancer becoming active.

There isn't much that can be done right now. Nick is feeling fine. We're going to get through Christmas. Nick's next scheduled appointment is on Dec. 29. That's soon enough to begin addressing this. I am monitoring Nick very closely and if anything changes we will be right down there. In 2006 when this happened, it took 6-8 weeks after the weird fevers started for the oncologist to get the chemo plan worked out.

I could say that I am not worrying and I am letting God have this, but that would be lying. I'm not handling it very well. I am handling it by exerting a lot of energy to keep from thinking about it ALL the time. I am trying not to worry the kids. I am trying to keep a low profile (as much as possible) on keeping track of Nick's temps every night. By that, I'm trying to check his temps when Kacie is occupied with something else. She gets scared and worried when she sees me having to keep such a close watch on Nick.

I don't even know what to ask in the way of prayer requests. Pray as God leads.

Trying to remember to remain in His grip,

Kristy Baxley

Another second

Today would have been Keith's 40th birthday. Two years ago, I had the privilege and honor to give Keith a fantastic 38th birthday party. I could not have gotten it done without some very special friends. Keith wanted to wait until he was 40 to have this bash. We did know at the time that Keith's health was slowly deteriorating, but certainly did not expect that his death would be months away. At the end of the party, Keith decided that he wanted to have a birthday party every year until he turned 40. I realized today that he has gotten his wish. He has had the most amazing party with the Heavenly Father.

The kids and I decided not to go to the cemetery today. I need to go out there sometime soon just to check on things. I haven't been a long while. I didn't (and don't) push the kids to go. They understand completely that their dad is not there.

We celebrated Keith by going out to a nice lunch where we planned on having dessert first. Keith loved dessert. The dessert first didn't happen though. The restaurant no longer served the dessert the kids wanted. So, we ordered an appetizer, ate our meal, and went to Krispy Kreme for a dozen doughnuts. That got me cool points as a mom.

Overall, it hasn't been the most difficult day. It has been a day of remembrance, some sorrow, some grief, some happiness, lots of praise.

I sang in the choir's Christmas musical today. I found out that it was planned for this day on my very first practice with the choir of our new church. I really struggled with the decision to commit to singing in a big musical on Keith's birthday. After praying and really thinking about it, I decided to go ahead and commit. It's what Keith would have wanted me to do. It's what I would have done had he been alive. It is something that I truly love. I love being able to worship my Lord and Savior through song.

I am so glad that I made the decision to sing. I felt so full of praise for God this morning singing about the birth of Christ and what He did for us. The love that I feel for my Heavenly Father overflowed. I was able to praise God today, on Keith's 40th birthday, because Keith is with the One who loved him more than his family. That tops any earthly birthday present I could have come up with.

Happy birthday Keith! We love you and miss you!

The second Thanksgiving

In grief group, it is often mentioned that the days leading up to a holiday/special day are worse than the actual day itself. As the last 16 1/2 months have passed, I understand what that means. I have actually experienced that as well. Today, as I mark time until the second Thanksgiving arrives, I find it to be the opposite.

I was really looking forward to Thanksgiving last week. I'm not anymore. Now I find myself thinking about it being just another holiday without Keith. I've made it through all of the firsts. The rest of them are just designed to cause me more hurt, more heartache, more grief, more pain.

Oh yeah...it's going to be that kind of post. It's the way I am feeling tonight. I'm really having a tough time right now. The last few days have been tough and it seems that there is no real end in sight. I have been through a lot during the last week. I was buying and selling a house. Now I'm not. Nick had a sick episode one night that might be the cancer acting up. I literally made myself sick with worry before I could reign it in. Kacie had an episode of sick that caused problems with her asthma. That caused me quite a bit of worry and to lose some sleep too. I went to my first wedding since Keith died. The wedding was beautiful and brought back some wonderful memories for me, but then the pain snuck in later. Now I'm not sleeping much at all.

Now I am angry. I am angry that Keith died. I am angry that things haven't gotten easier with time, but more difficult. I am angry. I am angry. I AM ANGRY!

I had my session with MLC today. He is glad to see that I am finally expressing some more anger. I have had some episodes with anger since Keith died. The episodes have been draining, but necessary. After all, anger is one of the stages of grief. Apparently, it is one of those emotions with grief that don't come with a time table. I guess none of the grief emotions come with a timetable. MLC thinks that every time I have experienced one of these major emotional dips in the last year +, I have reached a new level of healing. I don't see it, but I guess he would.

MLC isn't worried about me getting through this next several days. I'm not worried either. I just want it to hurry up and be over. I want the whole holiday season to hurry up and be over. I am not convinced that the first was the worst.

Seconds

Seconds...60 of them in a minute. Seconds...the amount of time it takes for life to change dramatically. Seconds...the next round of plate filling at Thanksgiving dinner. Seconds...the term used to describe a manufactured good that doesn't quite meet the first run qualities. Seconds...what follows first.

It only took seconds for my life to change dramatically several times. Even though I know there are only 60 seconds in a minute, sometimes it feels like 60 billion. My second Thanksgiving without Keith is next week. That will bring with it the beginning of the second holiday season without Keith. The seconds are bothering me.

Don't get me wrong. I am relieved that I don't have to relive the firsts again. I don't think I really want to go through this second phase either though. Until tonight, I have been looking forward to Thanksgiving this year. It has to be better than last year. I was also driven by the excitement of buying and moving into a bigger house. Getting my house ready to go on the market was the yuck part, but necessary. I was really looking forward to getting a fresh start.

Notice that I am speaking in the past tense...was. My plans changed in a matter of seconds yesterday. Yesterday, everything looked great for the plans to move into a new phase of life for me and the kids. Yesterday, I was under contract to buy a bigger house. Yesterday, I was at peace with selling my house and taking on a mortgage when I don't have one now. Yesterday, I was looking forward to laying the ghosts of the bad memories to rest and only bringing the good memories with me.

Yesterday, it all fell apart. I found out that I wasn't given all of the information I needed in order to be able to make a sound financial decision. Yesterday, I found out that I can not afford to move. Yesterday, I had to tell my children that we weren't leaving this house for something bigger and better. Yesterday, I learned the hard way that there are people out there who are willing to lend you money that you can not afford to pay back so that you can buy a house that you can not afford to make payments on. People that will tell you everything is wonderful, shiny and gleaming. Then in a matter of seconds, it becomes glaringly clear that you were taken advantage of. It becomes clear that you narrowly missed making a huge decision that would have had a huge negative impact on a family that has already been through more than most.

Thank God for second chances. Thank God for watching over me and keeping me from falling into this pit. Thank God for putting people in my path that had the knowledge to look everything over and see the mistakes that I couldn't see. Thank God for my home that isn't perfect, is too small, and needs some work. Thank God that it is mine. Thank God that we have somewhere to live that is paid for.

I know I have been rambling. There is a lot on my heart and in my head tonight. Just venting the little bit about the house deal has helped. I wish we could have gotten this house. It was a really nice house. I am thankful that God answered my prayer. My prayer during this whole house thing has not been for Him to allow me to have this new house. It has been for Him to protect my finances, to protect me from making a mistake, to show me what His will is not mine. With everything, that was going so perfectly smooth it's crazy, to fall completely apart as quickly as it did, I can only believe that God heard my prayer and answered it. It wasn't what I wanted, but it is certainly better in the end.

Another example of remaining in His grip without even realizing it.

In the middle

Keith died 16 months ago today. I realized during the day today that this is not the first 7th and it won't be last 7th. That means I must be in the middle. I find that with each passing day I am able to think about Keith without as much consuming grief. I still carry a lot of sadness with me and I probably will for a long time. There are times when the grief rears up and it hits me. It did in church this morning. Singing a hymn, praising God, and I got blindsided. The tears came faster than I could stop them.

I am more aware of these moments when I am singing and praising God. It happens a lot in songs that are about leaving the pain of this life behind and entering heaven. I just become overwhelmed with emotion thinking about Keith walking the streets of gold, talking with the men and women of the Bible, sitting at the feet of the King, spending time with my dad and his granny.

I like being in the middle better than at the beginning. I was told by MLC recently that a year ago I was a train wreck. That surprised me a little bit. I didn't think of myself as a train wreck then. The more I have thought about it, I realized that I was a train wreck last year. More importantly, I realized that I am not a train wreck now. I am learning how to live a life without my spouse and best friend. I am learning how to be a single parent. I am learning how to put myself first occasionally. I am learning a lot about who I am. I am learning a lot about my children. I am learning a lot about the kind of man my husband was.

I think I like being in the middle. Time will tell.

It is finished!

Football/marching season is over! It is finished! Yeah! I am so glad that this season is finally finished. It's been fun. It was not as different as I thought it might be from last year. I honestly could not remember a whole lot of last year's marching season. I know that I was deeply grieving. I was in the fog that comes from grief. I know I was extremely tired. I just didn't know if it was from the grief, the hectic schedule, or both.

It was both. I am absolutely exhausted. I have spent more of today in the bed than out. I have slept a lot today. I'm not too far away from going back to bed tonight. I do not feel good at all today. I hope it's just because I'm tired and not getting sick.


Friday night was the last football game of the season. Yesterday was the last marching competition of the season. The band did very well. All superior ratings, best in class band, and best overall band.


I am still a band geek, just all grown up. I love watching the bands compete. I do not remember being this worn out when I was doing this in high school.



What else is going on? Nick and I will be in Birmingham in about 12 hours. I do get really tired of going down there all the time. I wonder if there will ever come a day, before Nick is an adult and can take care of himself, that we will not have to go every month. I feel silly complaining about going. I know that there are families that have to be down there every single day. I know that it could be so much worse than what it is now. It has been so much worse than what it is now. I know that things can change for the worse with Nick with any visit.


I realized earlier that on November 28 we will have been going to Children's Hospital for 15 years. For some reason, which I'm sure that MLC will help me uncover, the realization of this is weighing heavily on me. I guess a part of it is that I thought (hoped) that once Nick was healed from the liver cancer and the liver transplant we wouldn't have to keep going back.


We had that for a little while. It seems like Keith's cancer diagnosis set off some kind of domino effect. We can't seem to be able to get out of the vicious cycle that we are in. On chemo, off chemo; in remission, out of remission. I wish we could just be off chemo, off of immune therapy, and in remission all at the same time.

I have realized that from the time Nick was diagnosed with the PTLD/lymphoma 5 years ago, we have been in this vicious cycle. Keith had already been sick for almost 2 years when Nick was diagnosed with the PTLD/lymphoma. They were both sick at the same time. Nick went into remission for a year, but during that time Keith was always on chemo. Keith never went into remission after that one time very early on. Nick was only in remission for a year. Nick has been out of remission for 3 years come January.

Granted, he hasn't had to go back on chemo yet, but he's still getting the IVIG. That is given in the chemo area of the oncology clinic. It is treated like a chemotherapy drug. I sit there looking at the kids getting chemo and I can't help but remember what those days are like. I'm sitting there watching the IV drip, drip, drip. I know it's not pumping poison into Nick to kill a cancer that is trying to kill him. I know he is getting the medicine to plug holes in his immune system that have been left from years of cancer, chemo, and transplant drugs. I know that for that day we are not there for chemo, but there are feelings that are EXACTLY the same.

I guess that is a big reason why I'm tired of going. I'm tired of feeling these same feelings. After all, it's been almost 15 years.

I did not mean to get off on that tangent. Not really sure where it came from, but it obviously needed to be let out.

I'm headed back to bed. Morning is going to come early, and the day will be exhausting.

Please pray for safe travels, good lab reports, no port problems, a good checkup, and another month without needing chemo.

Trying to remain

In His Grip!

Tired of...

Warning: This post is likely to be full of whining.

I am so tired in about every way I think is possible to be tired. I think that I am having some issues with the depression again. I am tired of dealing with this depression. I am tired of not feeling in control of my emotions or my state of mind. I am so tired of grieving too.

Yep, I said it. I am tired of grieving. I am tired of being a widow. I am tired of being a single parent. I am tired of playing this game or riding this ride. I am the person on the roller coaster screaming, "LET ME OFF! LET ME OFF! LET ME OFF!"

OK God! I am ready to get off this ride. I am ready for my life to resume normal. Oh yeah...I forgot that normal doesn't exist in my world. Okay then. I am ready for the storms to stop, for calm to reign, for the stress to ease, for healing to be complete.

Today I was finally able to get back to the gym. I took a step class and then I stayed for Bodyflow. I love Bodyflow. I don't do it very well, but I still love it. What is Bodyflow? It is a workout class that concentrates on Pilate's, Yoga, and Tai-Chi. I love, love, love this class. The last part of class is for relaxation. We focus on breathing and relaxing. One part of that exercise is to go to some place in your mind where you feel good. Some place where you are happy. When I have done this class before, my place has usually been the beach. Not today. The place that popped into my head was to be with Keith again.

That makes me feel like my mind is turning against me. I miss Keith so very much sometimes that I can not grasp the reality that he is truly gone. Between my mind automatically turning toward being with him when I can't and the PTSD (post traumatic stress disorder) forcing me to relive the trauma of Keith's illness and death, I feel like I am losing all sense of reason.

Yes, MLC knows. He is working with me on it. He also has some other treatment options in mind that we are discussing. One of the things we have already begun is trying to desensitize me to the traumatic memories that I keep reliving. I basically have to talk my way through which ever memory surfaces. I will have to keep talking about it until the memory no longer sets off the reaction. I was wiped out after my last session with MLC. The good news is I can tell a little bit of difference in the strength of the particular memory that we talked about. It's not a huge difference, but being able to see a little bit of an improvement is good.

Did I mention that I am tired?

I've been taking a lot of naps lately. Most everyone thinks that's great. I don't. In my "normal" self, I'm not a napper. I never have been unless I was sick, pregnant, or up all night with a sick one. (Started to say kid, but then I remembered that I have been up all night with Keith before.) I'm tired of feeling like I need naps. I'm tired of being tired.

I guess I can quit whining now. Don't say I didn't give you fair warning dear reader. I did.

Before I forget to mention it, Nick's Birmingham appointment for next Thursday has been moved to Monday. Nothing is wrong on our end. The doctor will not be in clinic on Thursday, so we got bumped up. No big deal. It's happened before. It will probably happen again.

I'm tired of going to Birmingham too.

Since I'm so tired, I'm signing off and going to bed.

Good night!

Ramblings

I haven't posted because I just don't know what to say. There seems to be so much going on and I don't even know where to start with it all. So this post will be ramblings about whatever comes to mind.

Let's see...Kacie had to get new glasses. Her vision has changed in just a year and now she needs to wear glasses full time. Not surprising since I wear glasses full time and have since I was a teen. Kacie is continuing to do well in school and loves dance. She has a pretty full schedule this year, but she seems to be handling it very well. We have had conversations about the importance of homework versus dance. I made it very clear that dance is a privilege not a requirement. She can't go to dance until her homework is finished. That's because she dances for 4 hours a week: two hours on Monday and two hours on Tuesday. She doesn't like the rule, but it carries weight. Kacie is really settling in with our new church family. She has a speaking part in the Christmas play. She likes getting to know her friends from school on a new and different level.

Nick began taking driver's ed this week. His time of becoming a licensed driver is drawing ever near. I know I'm not ready in so many ways, but I am ready in so many ways. He has been feeling well lately. I feel like I'm waiting for the shoe to drop. I know I need to not watch so close, but old habits die hard and Keith isn't here to be the voice of reason. Nick seems to be doing well in school too. He will begin taking some classes at the tech school next semester. He is really excited about this opportunity. I am too, just because it means a chance for him to learn something he loves. Nick is enjoying band. The football/marching season is quickly coming to a close. It has picked up steam during the past couple of weeks. We will be hitting it hard until the first of November.

Both kids are continuing to work their way through the grief from Keith's death. We all are. I continue with my counseling/therapy. I'm still on medication for the depression. I still have good days and bad days. Lately it seems like there are more bad days than good ones.

The second year after the death of your spouse is easier in many, many ways. It is also more difficult in many, many ways too. One thing that I have noticed is that I don't have as many bad days as I did during the first year. It seemed like every day had the potential to be a bad day during that first year. Now, the bad days are fewer, but when there is a bad day(s) it tends to be really intense.

I'm in a time of intensity right now. I'm not sure why. I do know that MLC (My Lovely Counselor) told me that this isn't unusual, especially for younger widows. I have to say that I will be glad when this time has passed. It's tough to be where I am now. There isn't a lot of good about it. I'm not going into detail about it simply because it's very personal and it is painful. I am trying hard not to fall into this pit that is full of feelings of abandonment and being damaged beyond repair.

I am still in school. I have two more classes to take before I transfer to Athens State to finish my degree. I have decided to continue at a slower pace for the time being. One of the classes I need isn't even being offered for the spring semester, so decision to only take one class again was a little easier. :-) I've done well so far. I hope I can continue to do so. I hope to be able to start at Athens in the fall of 2011. I don't know if I'll be able to finish in two years, but God knows the time frame and I am fully trusting in Him to make this happen.

That's about all the rambling I've got for tonight.

Until next time,
Kristy

Update on Nick 10/07/10

Nick had a checkup today in Birmingham. It snuck up on me this time. I didn't realize that I had not sent out a prayer request/update until we were on the road this morning.

The checkup went well. The oncologist didn't find anything during the physical exam and Nick's blood work all looked pretty good. The IGG level was low again at ~365. I don't remember the exact number. One good part is it has been 5 weeks since Nick received his last dose of IVIG. This may be a sign that the increased amounts of IVIG are doing some good, since Nick's number wasn't down in the 200s.

The oncologist's plan as far as the IGG problem is to continue to increase Nick's doses of IVIG until we reach a dose of 1 gram. That would pretty much replace all of the IGG that his body would make on it's own. Last month's dose was 55 mg. Today's dose was increased to 65 mg. Next month it will likely go up to 75 or 80 mg. It's slow going more at my insistence than what the doctor would like. Nick's body didn't handle the last huge dose very well a couple of months ago. I want the doctor to go slower. I don't like seeing Nick be sick from something that's supposed to help him. It's something that I can't deal with right now. So...we are taking it slow. We will as long as I can keep the doctor hearing my concerns.

As far as the chemo issue, that's all still on hold until some kind of symptoms present. The oncologist is keeping Nick's concerns about taking chemo in mind. He assured me of that today. During the physical exam, the doctor noted that Nick's spleen was back in it's normal place. Last month it was somewhat enlarged. If it were still that way today, it would be looked at to determine if a symptom were presenting. It wasn't enlarged at all today, so no problem. The doctor also has decided to do routine chest x-rays each month to look for any swollen lymph nodes that can't be seen any other way. Today's x-rays were clear.

Overall, today was a good day. It was very long. It started out with me needing to take my SUV to the tire place to have my tires looked at because my tire sensors were indicating a problem. This was before 7:00 this morning as we were trying to get on the road. Thankfully the problem was very minor and quickly taken care of. We were only 45 minutes late to clinic today.

We are scheduled to return to Birmingham on November 4 for a repeat of today's performance. My hope and prayer is that it will go at least as well as today did.

Thank you for continuing to pray for us. Overall, we are doing pretty well. Some days are still better than others, but I am told that is to be expected.

Pray as God leads you.

As always, we remain...

In His Grip,
Kristy Baxley

Pity Party

Ok...It's fair to say that my last post was a pity party. I don't have them often and almost never on here, but I needed the vent.

I'm better now. The kids and I went to the Smokies the first part of the week for a vacation with Keith's parents. It was a wonderful time away. We stayed at this indoor water park resort. It was a nice place. We didn't leave the resort until the third day we were there.

It was our first vacation since Keith's death with Nana and Pawpaw. Keith, the kids and I went on vacation with them every year for six or seven years. It was nice to go on a trip with them again. I know that we all missed Keith. His absence was definitely felt. I do think it was good for all of us to experience the moving forward of life.

I really appreciated the extra help with the kids. I was able to get caught up (a little ahead even) on my homework. I don't feel nearly as overwhelmed with that as I was.

Our "place" for vacation with Keith's parents has usually been the Alabama gulf coast. We were planning on going there this time, and I just couldn't go. I couldn't make the reservations. I couldn't do it. My heart was not in it...at all. When I made the suggestion of this alternative, everyone, including the kids, was excited. It may be that our vacation place has to change for a while, at least until more healing has taken place.

Nick has a checkup in Birmingham in the morning. I'm not looking forward to going, but it's necessary. Hopefully it will be a run of the mill kind of day.

Thank you for praying us through the days since my last post. Life isn't nearly as nasty and yucky now. I'm praying that it stays that way for a while.

In His Grip,
Kristy

There are some days

There are just some days that you don't want to live again, see again, or even think about anymore. These days do tend to stay with me though. It seems that since Keith died I have had more of those kind of days than the kind you want to relive, cherish, and hold near to your heart.

Those kind of bad, yucky, crappy, Alexander's No Good, Very Bad, Terrible Day kind of days just wear me out emotionally, mentally, and physically. The Alexander's reference is to a children's book about a kid that has had a really bad day. I can relate.

I wish I knew of some kind of cure for these bad days. I don't. I know that I pray A LOT during these days and after these days. I wish these nasty days would stop happening to my family. It seems like they just keep piling on. Kacie has asked me why God keeps allowing so much bad to happen to us. My only answer to her was that I didn't know. We just have to keep moving through the tough times and keep our eyes on God. She responded with, "Never lose faith, never lose hope, and never give up Mom." From her lips to God's ears and mine! What a perceptive child she is!

Please keep praying for us. There is a lot of yuck going on right now that I can't talk about. Just please cover us in prayer.

I want to end this with my "Remaining in His Grip", but I can't. I don't know where His Grip is right now. I don't feel it. I know it's there. I have faith that it's there. I just can't exactly find it.

So...I'm trusting that His Grip is there and the kids and I remain there, even though I can't exactly find it. After all, that is faith...believing in what you cannot see or in my case feel today.

Kristy

Please, please pray for God's wisdom, protection, and mercy to intervene.

Still surprised sometimes

I am surprised at how strong the grief can still be at times. Most days, I don't have the overwhelming, intense grief that seemed to be my constant companion during the first year following Keith's death. Somewhere along the way this summer, the grief became less intense and the surges of big grief became less frequent as well.

I have really become comfortable with the grief that I do carry around with me daily. There are times when I miss Keith with an intensity that my heart simply aches. Those times are usually limited to something with the kids or some kind of goal I've met. You know, the kinds of things that a wife shares with her husband who is also her best friend.

The past few days have been days that the grief has been more intense. So much is changing within our family and it just doesn't seem right that Keith isn't here to have in a part in it. I'm not going to go into the minutiae of all the changes, but it's all good stuff. It's normal living for the most part. It's living a life that isn't entirely focused on the treatment of cancer and the end of that battle. It's being able to get into a routine that doesn't include spending hours and hours in the chemo clinic several days a week.

My heart is aching tonight for my sweet husband. I miss him. It still catches me off guard sometimes...even more than a year later.

14 months

I haven't posted in a while about how long it has been since Keith died. I haven't needed to. For a while after his death, writing about exactly how long it had been served a good purpose for me. It helped me come to terms with the reality of Keith's death. It is very difficult to truly come to terms (both in your heart and in your mind) with the death of your loved one. It doesn't matter if the death was expected or sudden. It is tough to come to terms with the finality of death.

In keeping up with the hours, then days, weeks, months, and finally reaching the one year mark, I have been able to reach a point emotionally and mentally that I can DEAL with the results of Keith's death. I finally crossed over into the land of acceptance. It didn't all come in one fell swoop or happen overnight. It happened in little pieces all during the last year. It is a healing wound.

Why am I posting about how long it's been now? I've been thinking about it a lot this week. It struck me that this 7th was exactly on the day that Keith died. I haven't been overcome with a huge amount of grief. I actually have found that while there is grief, there is also a huge measure of healing that has taken place. My emotions have been closer to the surface this week than I have experienced in a while. I find that I have needed to cry some this week. That's fine. I cry when I need to.

I miss Keith. Some days, I miss him with a longing that is so intense I still expect him to walk through the door. I have realized that what I miss is the "well" Keith. I miss everything about him. In accepting his death, I have come to terms with the loss of the dream that we would return to that life one day. I had to accept that my life is meant to continue on without Keith. That is another level of acceptance that is very difficult to reach and CAN NOT be rushed.

I still have work to do though. I am still coming to terms with the reality of life after his death. I have to live. I have to take care of my children. I have to find some kind of gainful employment to take care of us. I am only one person. I have limitations. I am a single parent. I am the go to guy. I am my children's rock. I am the _________ (fill in the blank, and it probably applies).

I do realize that the work that I have to do is work that I will always be doing. When Keith died, I became the most important person in our children's lives. Sounds weird, but hang with me a sec...The kids went from two solid parents to one solid, but grieving parent. That shakes up a kid. I know when my dad died (I was 22), it shook my very foundation, even though I was married and had a baby. I see some of that in my kids. The death of their dad shook their foundations...AND why wouldn't it?!

Death should shake your foundation. It should make you question your mortality, where you go when you die, how will you survive the death of someone you love. It should be difficult to deal with if only because death is permanent. Once absolute death occurs it can not be reversed. Death is forever.

As the realization and acceptance that surround death begins to settle in, the children begin to realize just how much their lives have changed and are continuing to change. As their only living parent, I KNOW that I will be the most important person in their lives for a very long time. They don't have two anymore. They only have one.

Keith has been gone 14 months. This week I feel every one of those months apart. It's been a tougher week than I have had in a while. It's okay though...that is how grief works.

As always, I strive to remain...

In His Grip!

Update on Nick 9/3/10

Yesterday proved to be one of the longest days we have had in the clinic in a long time. We arrived shortly after 8:00 and we didn't leave until 5:00. That is certainly a full day.

The checkup went well...mostly. The oncologist has decided to hold off on any chemotherapy for now. He wants to wait until some kind of symptom presents. That is not an unusual way to approach the kind of cancer Nick has. Right now, the cancer is acting as an immunological deficiency. The doctor is wanting to wait until the cancer is acting like a cancer.

How will we know? The doctor is watching several different things for signs of a change. He is keeping a check on the size of Nick's spleen, different blood counts that would indicate anemia, pain levels in the back and abdomen, unexplained nausea or fevers. The onset of any one of these will be closely watched in order to establish a pattern. Once a pattern develops, the decision to begin chemotherapy will be made.

A couple of things that the doctor noted during the checkup yesterday: two of the blood test results were a little bit lower than last month, and Nick's spleen seemed a little larger during the physical exam. The differences were not significant to indicate that a pattern is being established. It is, at this point in time, something the oncologist will be watching. He feels that overall Nick looks good and everything is okay.

Nick's IGG level was low...again. Last month's mega dose of IVIG (750 ml-regular dose is 350 ml), did help some. Nick's IGG level yesterday was in the 400s instead of in the 200s. That is good, but since the low end of normal is about 750, Nick still has a long way to go. The IVIG dose Nick received yesterday was 550 ml. We didn't go with another mega dose yesterday because Nick had a rough night after the dose last time. The doctor decided to split the difference and see how Nick did with it.

Nick did very well during the infusion and during the night last night. One thing that might have helped is that the IVIG was run very slowly yesterday. I don't think it was intentional since there was a nurses meeting that our infusion nurse was attending. We had a couple of nurses that were watching over Nick and the rates didn't get increased at the normal pace.

Honestly, I was not happy about it yesterday because we were there all day long and I was tired. Seeing how well Nick felt and how good his night was, I'm counting it as an unexpected blessing.

We will go back in 4 weeks for another checkup, blood work, and IVIG. The decision on chemotherapy will be reevaluated with each checkup. The doctor has decided that when chemotherapy becomes necessary, he will begin with the mild chemo. He was very attentive to Nick's concerns about taking the aggressive therapy. Follow-up CT and PET scans will likely be sometime around December. The doctor doesn't want to wait too long and miss something.

Please pray as God leads you.

In His Grip,
Kristy Baxley

We are still here

I don't have much energy tonight to write a full post, but I wanted to drop in for a quick update.

The kids are okay. Their schedules are c-r-a-z-y! Band, dance, band, dance, church, band, football game, BREATHE, church...then do it all over again!

Then I decided to go back to school. Now I have my own homework and studying to throw into the mix.

Nick and I will be making the trek to Birmingham on Thursday, Sept 2 for the next checkup. The potential is there for some big decisions to be made concerning chemotherapy. I'm trying not to think too much about it before we actually get there.

I have some other external stressors going on now too. Please pray for me as I try to find my balance with everything.

I received a wonderful gift from a sweet friend yesterday. She found a cross that is specifically designed to hold on to. It's called the Clinging Cross. It fits into my hand perfectly. She thought of me because I sign off with "In His Grip". I love this tangible symbol of strength that I can literally hold on to.

That's it for tonight. I am so tired. I stay tired lately.

I'll catch everything up after Thursday.

Please pray for us.

As always, we remain...

In His Grip!

Living life and new beginnings

I have realized that I am beginning to LIVE life again. One year ago, I didn't think actively living life, rather than just passing through each day, was even possible. To be completely honest, I didn't think it was possible even 3 months ago.

I am trying to learn how to live this new life that I had thrust upon me 13 1/2 months ago. It has truly taken me the entire past year to be ready to take these first steps to being an active participant in life again. I have grieved harder than I thought was humanly possible. Through this difficult and painful time, I have been able to find some healing. My heart will forever hold a wound that will not fully heal, but I accept that. I wouldn't have that wound if I didn't love Keith and wasn't loved by Keith. I gladly accept my wound as a medal of honor. I am honored that I was chosen to be Keith's wife for 17 years.

For 14 years, I have wanted to continue my college education. For 14 years, I have prayed for God's guidance in this. I gladly put that education on hold to become mom to Nick. Just about the time Nick was diagnosed with liver cancer in 1995, I had been making plans to return to college. I accepted that my plans were not God's plans. My job was to be mom and full time caregiver/advocate to a very sick little boy. Then when Nick was well and making progress in catching up, I began to think about college again. I think I had even requested my transcripts and was in the process of applying for admission. Then I found out that I was pregnant with Kacie. I put college on the back burner. Obviously, I was not following God's will for my life.

I loved being at home with my children. I loved making a home for my husband and family. I still wanted to finish college, but I knew my purpose was to be a stay at home mom. Nick still had health problems frequently. Keith and I wanted Kacie to have the same one on one time with me that Nick had as a toddler. I continued to pray about what God wanted from me, what He wanted me to do. As Kacie grew and began preschool, I also began to look at college once again. Then Keith was diagnosed with cancer in 2003.

Once again, I accepted the task God had for me. During the calmer times of Keith's cancer battle, I would pray about school, think about school, and try to make it happen. It never worked out. Not once.

Then Nick's health problems began in earnest once again, Keith got sicker, Kacie needed me to be strong. It goes on and on and on. I still wanted to go back to college but I no longer knew what I wanted to be. Should I go into the medical field? I know so much. It would be a waste if I didn't...right?! Should I continue my original dream of being a teacher? I don't know. What if I don't like it?! Will there even be any jobs with all of the cutbacks?

Questions, questions and more questions. Then Keith died. Even in the first days and weeks after Keith's death, I knew I would eventually need to make a decision about a career and college. I still didn't know what God wanted for me though.

After much counseling with friends, family, and my MLCs, I decided to change what I was praying for. Instead of just praying for God's guidance, I began to pray for clear and concise direction. I prayed and confessed that I really wanted to have a degree/career that made a difference. I prayed and confessed that I wanted to do what God wanted me to do...not what I wanted. I finally gave over all of my confusion and wants to God. I finally allowed Him the room to show me what HE wants from me...not what I want from Him.

God, in His amazing and Almighty ways, answered my prayers. I not only know what I want to do, but I KNOW what God wants me to do. Guess what?! They match! Imagine that! I have since found out that He also answered many prayers about my return to college. When I found out who all has been praying for me specifically and without my knowledge, I felt honored and loved, and a little ganged up on. I feel like folks have ganged up on me in prayer. That is so not a bad thing!

I am officially back in college. I will have my first class on Tuesday. I am excited and scared. I am worried and confident. I am relieved to be back, yet wondering if I have lost my mind. It's safe to say that I have some mixed feelings about finally being able to do what I have wanted to do for 14 years.

Not much has changed in my daily life. I am still a widow trying to raise two kids, a full time caregiver/advocate to a child with cancer, trying to be both mom and dad sometimes. I still have times when I am grieving. I still miss my husband and best friend. It probably isn't the best time for me to go back to college, but I have learned that there will always be a reason not to go back.

There are many other signs of active living going on around my house. I am a little overwhelmed by the amount of changes that are happening, but I also know that it is time.

As always though, I am remaining...

In His Grip!

One week later

It's been one week since the kids and I received the news about Nick's cancer. I haven't written anything since my last post...not even in my personal journal. Honestly, I just simply have not wanted to even think about what happened and everything that was said. I just wanted to live without the burden for just a little while.

The burden has always been there. It's always in the back of my mind. I was shelving again. I know that is a coping skill that I am not supposed to use. MLC (My Lovely Counselor just in case there is a new reader) told me just last Friday in a time like this shelving until I can DEAL with the emotional/mental weight of the burden is okay. It's the long term, packed into boxes, duct taped shut shelving that I am not supposed to use to cope.

I found myself crying on my way back home from school drop off yesterday morning. I felt like I was back in the same place I was in every day last school year: missing Keith with an intensity that is felt physically. I eventually figured out that the emotional overload happened yesterday because I have been extremely busy Monday and Tuesday. Yesterday was simply the first day I had since school started, since Thursday's Birmingham visit, since the 13 month mark that I had slowed down long enough for any kind of emotion to surface.

It certainly surfaced yesterday. I found my way through it. I attended an extra grief group session to help me over the hump. I occupied my my mind. I used the tools I have learned during the past year to handle days such as yesterday. I thought it was over. I was wrong.

It came back today, except it brought along the reality of Nick's diagnosis. This afternoon I felt like I had slid downhill backwards on my butt. In case you've never had that happen, it's not fun. It is very painful. I think I found every rock, every stick, every tree root and pine cone on my way down.

The reality of Nick's diagnosis and impending treatment is overwhelming. I am trying not to focus on the what ifs. The problem is that I know too much about every aspect of each plan that the oncologist is considering for the treatment of this cancer. We have already been there, done that with each and every treatment option.

I wish I could just forget and not think about all this right now. It is truly overwhelming to even consider any part of this right now. I simply do not want Nick to have to go through this again. I find myself going back to the past questioning of the purpose of putting this child (who just happens to be turning 16 in a couple of weeks) through this fight for his life...AGAIN!

I have to stop now. I'm beginning to go there again. I am just so tired of cancer being my family's life. I don't have anything uplifting to say in this post. I'm frustrated and tired. I am sad and mad. I am grieving and still functioning.

I am trying to remain in His Grip, because I simply don't know where else to be.

Update on Nick 8/5/10

I don't know how to begin. So I guess I will just jump in.

The thing I dreaded has happened. Nick is NOT in remission. When I met with the oncologist this afternoon, he told me that since our phone conversation on Monday evening things had changed. Sometime since Monday, the pathologist was reviewing all of Nick's previous pathology reports, especially the one from the biopsies used to initially diagnose the PTLD/lymphoma 4 years ago. During the review, the pathologist discovered two very specific tests that had not been run on the biopsy this time that were done in the past.

I am going to try to keep from getting too technical, so bear with me.

One of the tests specifically looks for Reed-Sternberg cells. If these cells are present, then a diagnosis of Hodgkin's lymphoma is usually made. The pathology done four years ago showed that these cells were present. Post Transplant Lymphoproliferative Disease (PTLD) sometimes looks very similar to Hodgkin's lymphoma. Along with these Reed-Sternberg cells being present, the cells also contained the Epstein Barr Virus (EBV). That is where Nick's initial diagnosis of EBV driven "Hodgkin's like" PTLD/lymphoma came from.

When the pathologist ran this test again on the new biopsy, the Reed-Sternberg cells were found once again. These are also the only cells that contained EBV as well. This means that Nick still has EBV driven "Hodgkin's like" PTLD/lymphoma. This is the reason for Nick's immune system dysfunction. The PTLD seems to be attacking Nick's immune system.

The oncologist was very clear that this result does not mean that things are worse. He said this only confirms what he was already thinking. This comes as no surprise to him. The surprise was the absence of the cells in the initial pathology report from Monday.

On my side of things though, it feels like the world has tipped again. The kids and I really enjoyed living in the land of remission, if only for a few days. The three of us are trying to handle this set back. Nick is dealing with some sadness and confusion. Kacie is sad and afraid. I'm feeling deflated.

The treatment plan is undecided at this time. The oncologist wants to take some time to do some research on different treatment plans. From what we discussed today, the chemotherapy treatments range from mild (like what Nick had 4 years ago) to very aggressive (like what Nick had when he was a baby). The benefit will have to out way the risk in whatever treatment the oncologist comes up with. He also said that he may decide not to do anything and keep going the way we have been...watching and waiting.

Nick tolerated the large dose of IVIG very well today. His IGG level was very low once again today, and that's only three weeks after his last dose. Hopefully, today's mega dose will give Nick better coverage. The oncologist will check Nick's IGG level before the next dose is given to see how effective today was.

There is so much more that I could go into, but I'm not right now. My mind is just swimming with information and I am overwhelmed with different emotions.

Thank you for the thoughts and prayers today.

I just don't know what else to say. Please don't be discouraged and lose faith that Nick can be healed. I am trying hard to keep from falling into that same place. I do believe that Nick will be healed and I will keep praying to that end.

Right now, the kids and I are focusing on remaining...

In His Grip!

Watching and waiting

I'm writing this post from the infusion room of the Hematology/Oncology clinic at Children's Hospital. I have spent countless hours over the years in this clinic...watching and waiting.

As I sit here today, I see the mom and dad of a little girl sitting across the room from us. I don't know why the little girl is here. I don't know anything about this family other than what I see. The mom is hugely pregnant. The dad is holding the little girl (who looks to be about three) in his lap. What strikes me about this family, other than the fact that I think they are newbies to this world, is the fear that clouds the dad's face that he can't quite mask. The mom is trying so hard to remain calm. She is sitting in the same position as I, to the left of your child in a chair that is slightly behind the child's chair. Mom is crying, trying not to let her little girl see her cry. Dad looks to be deep in thought as holds his little girl. The child is distracted by the TV. Mom had to leave the room. She came back calmer than when she left.

It brings back so many memories of watching and waiting when Nick was young. Watching Keith's face as he held Nick in his lap, not fully able to mask the fear. Remembering myself as I struggled to keep my emotions under some sort of control. I didn't want my child to be more scared than he already was.

Even now, I am struggling not to cry as I watch this family waiting. It's difficult for me to sit here and not say anything to them. Why don't I? Because right now, it wouldn't help. They have insulated themselves from what is going on outside of their own crisis. It's easy to see once you've been there. I've been there so many times. It didn't matter if someone tried to make conversation with me, tell me they would pray for us, offer us some kind of hope that we would survive whatever catastrophe that was about to happen. Nothing anyone said to me during these beginning moments mattered. We were too numb. We were too much in shock. We could only focus on getting through this moment.

I can all but feel the sadness emanating off of them. There is strength there too though. The nurse has come to take their daughter for the tests that will give them the answers. Dad carries his little girl. Mom follows behind. They are taking the walk that has the power to change their lives forever.

As I watch and I wait, all I can do is pray.

Watching...waiting...praying

Update on Nick 8/2/10

Nick's oncologist called this evening with the pathology results from the biopsies.

I have mentioned before that the pathologist would be testing for several different things.

The tests for any kind of fungal infection and micro bacterial infection were NEGATIVE. Praise God!

This was a very real concern for us. It is not uncommon for transplant patients to become exposed to some kind of fungus or micro bacteria that would cause problems similar to Nick's. People with normal immune systems are able to fight of these invaders without any ill effects.

There were also tests run that determined the structure of Nick's lymph system. These tests showed that the lymph structure is NORMAL. Praise God!

Another test showed that the EBV (Epstein Barr Virus) is still present in some of the cells that make up blood cells. The amount of the EBV present is not much more than what is likely present in anyone that has had previous exposure. Another praise. We are always watching the EBV levels. The PTLD/lymphoma that Nick was diagnosed with began from an EBV exposure. The levels help the doctor know exactly how active the EBV is in Nick's body.

The doctor said that overall the pathology is not impressive.

The tests also showed that the lymph tissue samples taken did not indicate classical EBV driven PTLD lymphoma. This is another praise. When the oncologist and the pathologist compared the current results to the pathology results from 4 years ago, they determined that it is completely different this time. These results indicate that we are dealing with a chronic EBV infection that often knocks out the B cell portion of the white blood cells and is sometimes associated with giant lymph nodes (such as the ones in the pelvic region where Nick's mass is at).

Now for the best news of all.

Nick's oncologist said that he believes that the PTLD/lymphoma is in REMISSION!!!!!!!! Hallelujah! Praise God!

Nick is cancer free! I can barely grasp the reality of this news. This is the first time in 6 1/2 years that no one in our house has had cancer. No chemo.

Ok...(trying to remember to breathe)...Nick's diagnosis is EBV driven immunodeficiency. It is likely caused by a chronic EBV infection constantly attacking Nick's B cells. The best course of action right now will be to continue to treat Nick with the IVIG. The oncologist is doubling the dose of IVIG that Nick will be receiving in the hopes that it will fully replace what Nick is missing and give him more immune protection longer. The usual dose of IVIG is about 300 mg. Last month, Nick received 350 mg. A bit of an increase, but not a lot.

On Thursday, Nick will likely be receiving around 800 mg of IVIG. This will basically replace all of the immune globulin in Nick's body. It sounds aggressive. It is aggressive. It is not something that the doctor is approaching lightly. Anytime IVIG is given, the patient is at risk for an allergic reaction. This risk increases with the increase in the dosage. I will confess that this worries me. I know it is what is best for Nick, but the allergic reaction is frightening. The nurses are prepared for it. The one time Nick had a reaction it was very mild and was gotten under control quickly. This time I'm worried.

Please pray for us on Thursday. Pray that Nick's body will handle this treatment without any ill effects or allergic reactions. Pray that I can handle the stress of just watching and waiting for several hours.

Thank you all for the thoughts and prayers. It is so wonderful to be able to write an update with such wonderful news and praises.

I will update again sometime Thursday or Friday. I will also update on Facebook throughout the day.

We continue to work to remain...

In His Grip,
Kristy

Yet another post...

You aren't imagining things. This is another new post on the heels of an earlier post.

I want to share just a few thoughts I've had as the day has progressed.

I took the kids to see the new Karate Kid movie this afternoon. I was absolutely in love with the original Karate Kid (aka Ralph Macchio) during it's first go round. I did not mind seeing this version. I looked forward to seeing an updated version of the movie.

I was not counting on the amount of grief that is in the movie. The boy's dad has died prior to the beginning of the movie. The sensei lost his wife and child in a tragic accident prior to the beginning of the movie as well. This all comes to light in a powerful display of raw grief in the movie. The sensei is smashing his newly rebuilt car to bits with a sledge hammer on the anniversary date of their deaths.

Okay...here is a moment of complete and total transparency. I completely understand why he was bashing the car to bits with the sledge hammer. I have felt emotions that were that intense. I have felt that grief would completely consume me in the way that it was consuming the sensei. There have been times that I have wanted to destroy something. The one time I let the rage out it was in a non harmful way that consisted of tearing up a lot of magazines. I made a HUGE mess. MLC was very impressed with the mess I made and the constructive way I found to release the anger that had erupted.

During that scene after the sensei has shared the story of the death of his wife and son, the boy gets out of the battered car, goes and gets these training poles that have loops of rope on one end. He comes over to his teacher, loops the ropes around each of the teacher's hands, and begins to tug on the teacher urging him to get out of the car. At that point, the boy is using the poles to help his teacher move. The teacher is mimicking the boy's movements as long as he is holding onto the loops of rope on each pole.

It struck me with such intensity that when someone is walking through grief, whether it be as recent as yesterday or as long ago as 30 years, he/she needs someone to urge them to grab hold of the loops of rope and let someone show them how to move again. The reason being that someone who is deeply grieving may not remember how to move.

I am so thankful that I had several someones who were able to urge me to take hold of the loops and show me how to move again. In the early days, I had to remember to breathe. I could not have gotten through it without these special someones. They took care of me, my kids, my house. They made sure I ate, even when I didn't want to. They got me out of the house. They did not allow the grief to consume me when I was too weak to fight it. They encouraged me and kept me grounded. They loved me and let me cry.

When I was so enamoured with the original Karate Kid 20+ years ago, I did not realize the lessons that were in this movie. I have spent some time this evening comparing the first movie to the new one. I did not remember this intense grief being in the first movie. I went back and read a synopsis of the original movie and it was all there. Other than the obvious factor of maturity, I realize that losing the love of my life has made me more sensitive to others who have lost a loved one.

Grief is everywhere around me. It's in the newest book released by one of my favorite authors. I've had to stop reading the book for just a little while because the grief is too intense. I find that I am being confronted by grief almost daily in some way. It isn't so much my own grief that is confronting me now, as it is external grief. It just pops up out of no where, and I have to handle whatever emotion comes as a result of the confrontation.

And I thought the second year would be a little easier to handle...

It's now August as I am posting this. My baby boy turns 16 in 25 days from now. My sweet husband has been gone for 13 months in less than a week. In another month, we will acknowledge Nick's 14th transplant day. I will remember the mom whose amazing love for her dying son allowed my son to live.

I wonder if she had someone who helped her learn to move again.

I'm still here

I am still here. I've actually started a couple of posts that I decided against posting. I just can't seem to write about anything lately.

So...I will revert to the old standby that MLC wants me to use. Bullet points about whatever comes into mind.

Here goes:

• Nick is finished with band camp, and I am so glad. It has been a long couple of weeks.
• School starts in 8 days. I'm happy, but sad. I am not ready for the busy-ness that school starting will bring.
• I have decided to go back to substitute teaching this year. I thought I didn't want to do that anymore, but I realized that decision was made out of grief. I fully understand the reasoning behind not making major decisions during the first year. I definitely was not thinking clearly. I need to give myself a chance to love it or hate it without being influenced by the constant stress of care giving or grieving.
• I am still grieving. Moving through the one year anniversary does not make the grieving magically disappear. The wonderful group of counselors I have been working with all warned me that the one year mark would not bring with it some kind of dramatic change in my grief. Yesterday showed me that. For the first time in MONTHS, I had to pull off the road so that I could have a good cry. The grief just ambushed me out of no where. I let it wash over me and found my way out. I did need to treat myself with a measure of grace and kindness for the rest of the day yesterday, but it's all okay. It's just the way it goes with grief. Sometimes you're up, and sometimes you're down.
• When school starts, Kacie will be in the 5th grade. It will be my family's last year at the elementary school. We have been a part of this school since 1999, when Nick started kindergarten there. It's hard to believe that my kids have gotten that old. Nick is a sophomore in high school. Kacie is in her last year at elementary school. Nick is learning to drive. Kacie doesn't think that ALL boys have cooties anymore. I am beginning to see pieces of the young man that Nick is quickly becoming and the young woman that Kacie is just beginning to become.
• Both kids remind me so much of Keith. Nick looks more like Keith with every passing day. A great many of his mannerisms are like Keith's as well. Kacie has always looked like Keith and acted like me. I am beginning to see glimpses of the kind and generous heart that her dad possessed.
• I still don't have any results from Nick's biopsies. I am very frustrated. I reached my limit of patience 6 days ago. No one has got the answers and can't seem to find them. So, I am trying very hard to keep from calling them each and everyday. I am trying to wait patiently. I am trying not to worry about why they aren't calling me. I am trying not to catastrophize all of the what ifs that are circling in my mind CONSTANTLY.
• This last week before school starts is a busy one. I have a few appointments this week for myself. Kacie has an appointment to have two baby teeth pulled. Both kids need haircuts. I have got to carve out time to buy Nick new shoes and both kids school supplies. Then Thursday is the next Birmingham visit. Whew! I'm tired just thinking about it.

I guess that's it for now. I needed to unload more than I realized. I will have to let MLC know that his advice and strategies have worked once again.

As always, I am trying to remain...

In His Grip!

Thinking before acting

I have been thinking a lot during these past few days about the effect of sin on my testimony. I have been tempted so many times by Satan (who hasn't though?), but I don't know that I've really paid much attention to how giving into Satan would affect my testimony. I don't know that I have ever really given much thought at all to my testimony, except that it is a work in progress.

My thoughts have opened up more questions than answers for me. I know that actions do have an effect on the testimony of a Christian. We have seen it too many times in the media where well known Christians have fallen prey to sins of the flesh. Were they truly forgiven among the public and especially the Christian population? They should be forgiven for we are all sinners. Jesus said in John 8:7, "If any one of you is without sin, let him be the first to throw a stone." I can not be the one to cast a stone at another, because I am a sinner. That is the thought that I believe should be in the forefront of our minds and hearts as we look at the Christians around us.

Once tainted, can the testimony ever be redeemed? If we look around with true honesty, I believe that we will see that God has redeemed many testimonies, even when the sin seems too great for redemption to take place. I believe that God uses our sins to even further our testimonies, but only if we turn away from sin and allow God the room to work.

I know that none of us is perfect, but do we expect those among us who have a strong testimony to continue to live without sin? (I will say that I fully believe that each Christian's testimony is equally as strong as an others. It's up to the person to fully embrace that and share it with others.) Is that expectation what causes Christians to look at the testimony as tainted and then we continue to live in the flesh and hold that against them?

I know that it is very difficult for me to think about how my actions will affect my testimony. There are times that I don't want to think about my testimony. I don't want it to be important to me for the next however long it is. I want to give into the sins of the flesh instead of constantly fighting. I know that sometimes falling prey to sins of the flesh seems the easiest way to go instead choosing the more difficult road that is the life that God wants us to live.

Thinking before acting isn't something that comes easily, at least it didn't to me as I was growing up. It still doesn't come easily at times even as an adult. It doesn't come easily to my children. Teaching our children to think before acting is a major challenge in growing them up. I think that same line of thinking can apply to our relationship with our Heavenly Father. He is trying so hard to grow us up. He is trying so hard to teach us to think before acting. He only wants the best for us. He does give us room to make mistakes though. He doesn't turn us away. He loves us unconditionally.

Why is it then that we continue on the path of fleshly desires without thinking before acting? Why is it that sins of the flesh have such a strong hold over us at times? Why is it that we choose the sin-filled path when we KNOW it is wrong?

I don't expect answers. A lot of my questions are simply answered by the statement that we live in a sinned filled world. We are human. We are not perfect. If we accept the gift of salvation from Jesus Christ, then we are sinners saved by grace and covered by the blood of Jesus.

The tricky part for me is that I don't need to let the redeeming power of the blood of Jesus cause me not to think about the effect my actions will have on my testimony. It is very easy to justify falling prey to sin. "It's okay for me to _____. I know I will be forgiven, because I am a sinner saved by grace." In my opinion, that is a treacherous way of thinking. That way of thinking surely has the power to allow Satan room to mess with my testimony. I think that I should hold my testimony near and dear to my heart. My testimony should be something precious to behold and to be shared. I don't need to create drama or sin in my life in order to add to my testimony. Trying to live "in" this sin-filled world without being "of" this world is certainly challenging enough. That alone will add to my testimony without my deliberate interference.

Taking a deep breath

Before I jump into what I am writing about, I want to let you know that Nick is doing very well. He seems to be feeling good. There aren't any side effects from the procedure so far. He has a very small incision, probably less than half an inch. There are no stitches and it is covered only by a band aid. I am hoping that he continues to recover so quickly and without problems. Band camp begins Monday. I really think that he will be ready for it.

Ok, now onto my post.

I am taking a deep breath today both physically and emotionally. The passing of the first anniversary of Keith's death didn't bring with it some huge emotional shift. I had been warned by my many lovely counselors (I have 2 that are specifically grief and the 1 that I've been going to for years) that a shift of that sort likely would not happen. I do wish that it had happened. I am so tired of feeling so much pain, heartache, and sadness. It seems that I have been feeling these emotions for so long.

I also didn't have much time between heavy emotional events. Four days after the one year anniversary of Keith's death was what would have been our 18th wedding anniversary. I know that I have already posted some about what I was feeling as the day came about. Right now is the first chance I have had to think about how Sunday and the last few days have affected me.

I had a VERY difficult time Sunday. The sadness and grief were more intense than even on the anniversary of Keith's death. The depression flared up. I truly had to force myself to get out of bed. Sunday was perhaps the worst day I have had with the depression in a very long time. I really did not do much on Sunday except cry, grieve, and remember. I did take some time to remember that young couple that was so full of life and excited for the future.

I was encouraged to do something to honor my marriage to Keith. There have been lots of good suggestions on observing birthdays, mother's day, and father's day. There just aren't any good suggestions on observing a wedding anniversary when the spouse has died. My guess is that it is such a personal and intimate day that only the left behind spouse can determine how to honor that special day. In between my crying episodes, I took out my wedding pictures and looked through them with the kids. They really enjoyed looking at the pictures. I don't think the kids had ever seen the pictures before. There were several good pictures of my dad who passed away 13 years ago. That was very intriguing for Kacie since she never knew her "Papaw". Of course, everyone in the pictures is nearly 20 years younger. The kids reactions to seeing Aunt Kim and Uncle Todd in their teen years was fun. Of course seeing me almost 20 years younger was fun for them too. "That's you Mom?!" There weren't comments like that about Keith since his looks didn't change that much through the years, except when cancer took it's toll.

After spending some time looking at the photos and crying some more, I remembered the video of our wedding. I can say that I truly hungered to hear Keith's voice again. I hungered to see him alive and well again. I didn't realize that I had this hunger until I began watching the video. I watched it with the kids. They enjoyed watching how everything in their lives began. I cried and grieved a lot during the video.

Oh how I loved that man! Oh how he loved me! Marrying him was one of the best days of my life. I couldn't see it on Sunday, but I see now how much good it did me to watch the video and look at the pictures. Even in the midst of the depression, some healing was able to find it's way in.

I moved from the tough day full of lots of grief, depression, and sadness straight into having to prepare for the trip to Birmingham for Nick's surgery. No rest for the weary right?! I did the hospital packing and the hotel packing. I had to fight off a huge amount of grief and sadness. I really did not want to do this Birmingham trip without Keith. I did not want to send our son into surgery without Keith by my side. I had to though, and I did.

I made it through telling my son that I loved him as I left him in there care of the medical staff. I made it through the time of waiting. I am so thankful that God had mercy on me and the wait time was not very long at all. I prayed for God to be with Nick and hold him close. I prayed for God to be right there with me so that I would not feel so alone without Keith. I was not alone. Keith's parents, one of his sisters, my mom, and Kacie were all there with me. I still felt very alone without Keith there.

Today is really the first chance I have had for any emotions from Tuesday to surface. I am going to have to tread carefully for the next few days. I am worn out and weary. I am taking several deep breaths. I am focusing on the fact that I was able to get through the first anniversary of Keith's death, the first wedding anniversary that I truly felt (Last year I was still in shock), and Nick's first surgery since Keith's death. That is a lot for anyone to go through in just a matter of days. I survived.

I've made it through all of the firsts for a while. I am now fully into the second year after Keith's death. While I may not be full of happiness, I know that I am capable of feeling it. I may not be able to be with my husband, but I have lots of wonderful memories that I can draw on to help me through the difficult times. I know that I can handle anything as long as I keep my eyes focused on God. He will not let me go through this life without Him, unless I choose not to allow Him.

I know that I don't even want to think about living my life a day without God by my side.

As always, I am trying to remain...

In His Grip!

Update on Nick 7/13/10

I can not get this to send out as an email. I am hoping that many of you that get my emails will check this for the full update from today.

I will get this email sent out as soon as I can figure out what is preventing me from sending emails. It may not get sent until we return home.

Thanks for your patience.

Nick's surgery went as well as any procedure could have possibly gone. When I met with the doctor prior to the procedure, he told me that he fully expected the procedure to take at least an hour but probably longer. He said that it would take at least 45 minutes just to get the set up done. That includes doing everything to prepare for the procedure, as well as sedating Nick, doing the CT scan to find a route to the mass, and marking the pathway. The actual procedure probably would only take about 15 minutes depending on how many tissue samples the doctor was able to obtain at one time.

In only 45 minutes, the doctor was speaking to me in the waiting room. I was completely in shock. Honestly, my first thought was that something had gone wrong. Nope. He was there to tell me that the procedure was finished, and Nick did very well. The doctor was able to find a very clear pathway to the mass and he was able to obtain some good pieces of tissue for pathology. Nick did not need general anesthesia. He only had to be sedated.

Nick spent an hour or so in the recovery room before he was moved to observation. He stayed in observation until he was discharged around 3:00 this afternoon.

Nick has had very little pain or discomfort. He literally only has a band aid over the site. No stitches, but he has to keep it clean and dry. Nick has to take it easy tonight and tomorrow. We also need to be watchful for any signs of infection or bleeding.

Early tomorrow morning (Wednesday, June 14), we will be in the oncology clinic at Children's Hospital for a checkup and IVIG. Tomorrow is the day that Nick is scheduled to receive the mega dose of IVIG. I don’t know if anything has changed, but please be in prayer that tomorrow will be a good day medically for Nick too. My hope is that we will be able to return home once tomorrow's visit complete.

Thank you so much for covering us so completely in prayer. God has answered so many prayers today. I think we did very well considering that this was another very big first for us. It was a tough day for me emotionally doing this without Keith, but I made it through the day.

I don't know how long it will take for us to get any answers back. Hopefully, the oncologist can give some more definite information on that tomorrow.

Thank you again for your prayers, words of encouragement, thoughts, and support.

As always, we strive to remain...

In His Grip,

Kristy Baxley

18 Years

By the time I finish writing this, the day will have become July 11, 2010. It will be my 18th wedding anniversary. While technically it is not the first anniversary since Keith's death, it is the first one that I can say I have truly felt. I did not feel anything last year, other than the shock and numbness that comes in the immediate days that follow the death of a spouse. In case you're counting, yes, Keith's funeral was the day before our 17th wedding anniversary last year. He died four days before our anniversary.

How am I tonight? In all honesty...I am weary and worn down. The depression is acting up a little bit. I wish I could skip tomorrow. I already feel a tremendous amount of sadness and grief and the day isn't even here yet. I miss my husband with an intensity I didn't think still existed within me after so many months.

All day long today, wonderful (yet bittersweet) memories have found their way into my thoughts in the quiet times. I don't need to look at the pictures or watch the video, because I have them all in my mind. Remembering things about the day we became Mr and Mrs Baxley that I haven't thought of in years. Remembering the fluttering of my heart as my dad led me down the aisle. Remembering that special grin on Keith's face as he took my hand. Remembering the way his hands shook as he placed the ring on my finger. Remembering, remembering, remembering.

Memories are all I have left to see me through now. It's difficult knowing that Keith won't be giving me flowers tomorrow. Knowing that when the anniversaries are recognized at church in the morning, ours won't be one of them. Knowing that I won't give him a small gift that comes straight from my heart.

It's very difficult to accept that the love of my life, my high school sweetheart, is no longer on this earth to share this very special day with me. This day that is ours.

It is another day that I am counting down the hours until it is over. It is another day, among several recent days, that my heart wound is bleeding. It is another day that it feels like this wound might be the one that never ceases to bleed. The wound that will never heal. It is another day that I truly have to depend on God to see me through it, because I simply can not. It's just too hard.

I am definitely remaining in His grip today.

The first day of the second year

I did it. The kids did it. We made it through the first year without Keith, loving husband and father. I don't ever have to do this past year again. I am relieved that this year of so many firsts is behind me.

Today has not brought with it some kind of miracle healing of my sadness and grief. It has brought on a sense of relief. I made it. There have been many, many days during the past year that I honestly did not know how I was going to make it from one minute to the next, much less an hour, a day, or a week. I had to learn a lot about myself and my God during my journey in order to make it from one moment to the next.

I made it through the first year and I don't ever have to do that again. I don't ever want to do that again. It has been the most difficult and challenging time of my entire life. Yes, that includes Nick's cancer journey and Keith's cancer journey. That includes the death of my dad and three of my grandparents. That includes every time in my life that I thought was too hard to make it through. I know now exactly what I am capable of accomplishing.

Even when life gets tough and rough, which it often does, I KNOW that I can endure it. What's my secret? Leaning on the everlasting arms of my Lord and Savior Jesus Christ. My relationship with Almighty God has grown and changed so much during the past year. I have come to accept that growth would not have happened if God's plan for Keith's life were different. That was very tough to accept. The day my heart accepted this was a day that I spent in deep grief, sadness, and almost despair. I thought my heart would surely break into a million pieces. I fought the feelings with every ounce of my being. I did not want to accept that Keith's death happened because it was God's plan for his life. It was God's plan for my life and the lives of my children. Even now, just sharing about it, the feelings are still very deep and my heart wants to reject it. The truth is there and I had to be willing to accept it. I have accepted Keith's death as God's will for all of our lives. A very tough pill to swallow.

I do not believe or think of myself as some kind of super Christian. I am far from it. I am simply a sinner saved by grace and covered by the blood of Christ. I remember Keith as a quiet warrior. He was not a super Christian either. He was someone who shared his life and his walk with anyone who was interested in hearing it. He was not someone who was famous or outspoken. He was not someone who sought out the limelight. Keith was someone who walked the walk of a person with a deep faith and love of his Lord and Savior. He tried to share God's love in whatever way he could. Sometimes it was giving money. Sometimes it was just sharing his struggles with cancer with fellow cancer patients. Sometimes it was just by getting out of bed when mind and body desperately wanted to stay in bed. Keith was a quiet warrior who fought the good fight and accepted his heavenly reward with the grace that was simply who he was. He taught me that I need to take these attributes that were Keith and let them become a part of me and pass them along to our children.

I still miss the love of my life. My kids miss their dad. We still love him tremendously. We will always love him and miss him. Next week when Nick is in surgery, I will feel Keith's absence more than ever. It will be another first without him by my side. I will have my Heavenly Father right there with me the whole time.

I am so blessed by the life that God has given me, even with all of the tough times. I am blessed because God allowed me the honor of being married to a quiet warrior that loved me and our children. The only thing he loved more than us was his Lord and Savior. What a legacy Keith has left behind!