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!