Friday, May 22, 2009

Mixed Emotions

Greetings friends, family, and faithful supporters:

Although, my sister's details of the events that unfolded in Houston were a very accurate description of the information that we received, I would like to share some additional sentiments.  The scans and appointments went very well considering the usual routine, but learning that the PET Scan leaves you Radioactive for a period of time was very disturbing.  Somehow, I missed that part with the first two.  But at least the news we received were about as hopeful as we could of expected given my situation.
Please understand that I don't mean to sound ungrateful or pessimistic about my roller coaster of emotions, but lately I have had a difficult time comprehending my feelings.  One moment I am thankful for all the support and love...and then I have feelings of guilt and bitterness for not feeling deserving of all the humble "gifts".  Then I have a moment of clarity that is a realization of how blessed I am to have inspired so many for their amazing words of encouragement and sacrifice.  I am a simple man that has complex emotions like everyone else...I love my family, friends, and God, but have a difficult time with organizing what should come first at any given moment.  I don't fear death the way I think I should and I am worried that this is a sign of content and will slowly eat away at my will to fight if continued to be challenged.  The pressure of such amazing support by so many gives me strength beyond belief, but also compresses the pressure for the obligation to live up to a life that should pave the way for someone with so much love and support.  I mean how can you fail if everyone around you gives you all they can offer in support of your battle.  What if I don't live up to the expectation?  Will there be those that said he could of done more?  That is why The Alex Laynor Foundation means so much to me and the possibility of what it could do for others.  I feel like this foundation can succeed where I might fail or at least breathe life into another family or families that will benefit from my battle with this disease.

Thank you for allowing me to share some very deep emotions and please understand that the love I have for each one of you and God is something that even I can't express.

See you on Saturday the 30th,

Thursday, May 14, 2009

Good News - Different News

Oh where to begin. First off, this is Kari writing, so I'm not as eloquent as Alex, but I know others are wanting updates on the Houston trip and I'm not sure Alex has computer access to update himself, so you are stuck with me. And forgive me if I get details wrong. All this is second hand from Danielle and my mom. I was not there, but the key info should be correct. All in all the news is good, just a different course of action than they went down there hoping for. The tumor has shrunk!!!! Can't get better news than that, ok, so the tumor is gone would be better, but let's be realistic. I don't think any of us really believed the taxol would shrink the tumor, our hope was that the tumor wouldn't grow and prevent spreading while the doctors figured out what to do next. Well, good ol' taxol has shrunk the tumor, and has had minimal negative reactions on Alex. Alex, may scoff at me saying minimal reaction, but considering the first chemo he ever did nearly killed him; minor complaints of pain, neuropathy, and general malaise are a walk in the park. So now the doctors want to give taxol 2 more rounds to see what it continues to do. Then keep going for as long as necessary and as long as Alex can handle the chemo. Eventually the taxol will start to take a toll on his body and he will have to try something else if needed. The doctors also have another chemo in mind to try, so there are options. What happened to the transplant idea, it is still there, but an ultimate last result. Why??? Dr. Reardon is why, and after much thought he is right. Dr. Reardon has not been a fan of the transplant from the beginning, but the Dallas doctors thought it was the best option. We never understood why Dr. Reardon was not a fan, but he met with Alex Tuesday night and made his case. Partly, if you look at Alex right now, he looks pretty healthy, definitely not in heart failure, so he would have a hard time even getting on the transplant list. List aside, Dr. Reardon is a believer that you stick with the heart God gave you for as long as you can. Right now, though it has cancer, his heart is working and working quite well, so there is no imminent need for a new heart. Third, transplants are their own little world of nastiness, and to be avoided at all costs. Transplants often are rejected, to prevent rejection, patients take A LOT of medication that causes many negative side effects, one of which being allows cancer cells to flourish. So if Alex had any other cancer cells in his body, the antirejection drugs would not allow his immune system to fight the cells, and he could easily get cancer somewhere else. So, even though Alex may eventually need a heart transplant, now is not the time.

So, on to the questions I had when I heard the news and many of you may have the same questions.
What if the cancer spreads in the meantime, and then he can't get a heart transplant? Well, and this is just hopeful speculation, Dr. Reardon said these types of tumors either spread in a nasty way or tend to stay in the heart. Because Alex has been battling this for 8 years, and solely in his heart, he is thinking that Alex tends to have the kind that doesn't spread, at least when it is controlled, with chemo and resection surgeries. So, the hope is that his cancer won't spread.

What if Alex can't do chemo anymore? Dr. Reardon continues to not feel this location of the cancer is operable, he said you don't mess with the skeletal frame of the heart, and the cancer is along the septum. But...he said there are other options for surgery, such as artificial heart, so that may be the next option, before a human heart transplant.

How is Alex handling the news? Really well, Dr. Reardon offers Alex reassurance and comfort that no one else can. When Alex got the news this time, I really believe he thought he had months to live. Dr. Reardon assured Alex that right now he is fine, and if chemo continues to work, we don't even have to consider the more drastic options for a while. So he has time, and quite possibly lots of it.

What's the plan? That is perhaps the hardest part for me and admittedly, Danielle too. Every other time there was a clear cut plan, do X, Y, and Z, if it works, you are done. We'll see you at your routine follow-ups. This time, since they don't have the surgical option and chemo tools that they had before, they are trying out new things and seeing what works. No clear cut long term plan, just a we'll try this and see how it goes. If it works, stick with that, if it doesn't, new plan. So, Alex will be on chemo for 2 months. Then he will go back to Houston, see how things look. If the chemo is still working, then they will put in a pic line and keep going with the chemo. Alex requested they not do the pic line now, so he can enjoy his summer in the water. Not to mention, Alex is rough on pic lines. His are usually in his arm and they aren't intended for bulging muscles, so he pulls out the stitches all the time. Such a small thing, but so important to helping him feel a little more normal this summer.

Hope I thought of everything, feel free to post questions and I will try to answer them. Outside the obvious prayer request, pray for some spots found on Alex's liver. Not to alarm, the doctors have seen them before and are not overly concerned. The spots could be a lot of things and they really don't think the cancer has spread to his liver, but they are still watching the spots closely and will see if they respond to the chemo. The liver is the most likely first place the cancer would spread, so they have to be diligent. Just pray that it is not cancer, if the cancer spreads we are in a whole different ballpark.

Tuesday, May 12, 2009

Big Week

Since Alex has been really busy with Austin in the hospital, normal life and then getting ready for Houston, I thought I would post an entry for him. Austin, by the way, is doing great and back at school, missing the 24/7 pampering I'm sure. Today, Alex, Danielle, and my mom drove to Houston to begin the week of tests and results. Tonight they were meeting with Dr. Reardon, the surgeon who has done his previous surgeries. Dr. Reardon was scheduled to be out of town this week, so tonight was the only night he could meet with them. Yes, a doctor, surgeon at that, who makes house calls. Dr. Reardon is nothing short of extraordinary. So I am waiting to hear how that went. The conversation will be mostly hypothetical, since he will not have any of the recent test results, but he gives Alex and Danielle reassurance and peace of mind and they need that right now. The rest of the week will consist of tests to see what the chemo did to the tumor, if the cancer has spread and where he should go from here. So now we wait... and pray!!!! We will update once we know more.

Saturday, May 2, 2009

My Son...My Pride...My Courage

As I sit here at Children's Hospital in Plano(incredible facility by the way) with Danielle and Austin, I find myself relieved and frustrated with our current situation.  First of all, my "Little Hercules" of a son is going to have to spend his 7th birthday in the hospital.  Although I remain relieved that it wasn't anything more serious, an abscess in his neck that developed because of a previous staph infection is nothing to overlook.  He will have to get IV Antibiotics for 48 hours before they will release him.  At his age he amazes me with the strength and courage that he continues to showcase without effort.  We did not catch the abscess earlier because of his amazing tolerance for pain.  This could be because of the numerous laser surgeries he had on his Port Wine Stain as a small child or just his nature, but either way his toughness worked against him this past week.  I am also a little frustrated with the man upstairs because I thought we had a little want what you want to me, but leave my kids and wife alone.  I feel that I have taken more than enough for the team.  I know, I know God doesn't work that way, but then sometimes My Faith asks "How does it work?".  My first thought when going through this incredibly difficult is was for Brenda and John to go through everything they did in losing Stephen.  They are my Heroes and have such a special place in my heart, along with Stephen, because I hate to admit, but I don't think I would have the strength to lose Lexi or Austin.  If God takes me from this Earth sooner than expected, it will be difficult for my family and friends.  But in losing one of my children, I would be lost forever and be afraid that I would not be able to find my way back.  
So Parents...for Brenda and well as all those parents who have had to suffer the unbearable loss or difficult chronic illness of such an innocent gift from God, please hug and kiss your kids and love them like it is their last to honor all those who have had to sacrifice so much.
Don't forget that God blessed and allowed you the joy of raising HIS don't take it for granted because you might not be able to forgive yourself.
My kids are my Greatest Source of Strength, but also my Biggest Weakness in how I react...

Proudest Father