Friday, June 24, 2011

On my mind...

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

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

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

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

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

Shattered my heart into a million pieces.

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

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

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

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

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

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

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

Jumping thought trains...

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

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

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

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

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

As always, we remain...

In His Grip!

Wednesday, June 22, 2011

Update on Nick Baxley 6/22/11

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

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

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

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

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

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

Now to today’s visit...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

As always, we remain...

In His Grip,

Kristy Baxley

Sunday, June 12, 2011

just some thoughts

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

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

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

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

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

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

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

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

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

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

Good night!

Saturday, June 4, 2011

Update on Nick 6/4/11

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

On to the update...

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

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

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

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

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

I'm going with what he said.

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

In His Grip,

Kristy Baxley