Small set back

We got the reports from yesterday's CT scans , brain MRI and tumor markers, and we have great and not so great news! The not so great news is that they seemed to have missed a tiny spot in Jonathan's brain, and he has to have another gamma knife procedure Monday or Wednesday. Our immediate reaction is, 'how could they miss this,' followed by a few other thoughts! Apparently it was so small when the last procedure was done that they just didn't see it. It has grown a little since, so it is now more visible, but it is still extremely tiny at 7mm - a brain tumor nonetheless, that we need to take care of quickly. This will push the stem cell transplant start date back 1-1.5 weeks depending on the day gamma knife is scheduled.   Now on to the great news!  Jonathan's tumor marker is down from 223 to 72!!  The root of the disease is the mass behind his sternum, and it is less than half it's original size!  This is the tumor they are anticipating to remove surgically after chemo.  The liver tumor, which has been very stubborn, is finally responding, and it is also half it's size. This tumor was about the size of his fist originally.  The lung nodules have significantly decreased and the remaining ones are half or less than half their original size! It is definitely disappointing to know that he has to go through this procedure again, but we thank God for the technology to be able to take care of it safely and effectively. I will keep everyone updated on the definite date.  We are beyond grateful that the good news far exceeded the not so good news today, and we just continue to pray and believe for complete healing!!  Thank you so much for your love and prayers! With love, Lindsey

I apologize for taking so long to update everyone with the latest news.  I have always been a writer and have written down my thoughts my whole life, but when it comes to writing anything about this situation we are in, I struggle a lot (I’m sure most of you agree!).  To say that the last few weeks have been eventful would be an understatement, and I just have not been up to reliving some of it through words!  However, the events have been a mix good and bad  different. 

 Jonathan’s Gamma Knife Surgery went great, and he had no major side effects (seizures, bleeding, etc.), which was a huge blessing!  The weekend after the ‘surgery’, he was feeling pretty good and was itching to get away.  Over the last 6 months, he has received so much chemo and been through so much, that this last month without chemo was truly a blessing.  He was able to regain his strength, eat whatever he wanted, and stay out of the hospital for the most part.  When he felt ok to travel again, we knew we had to take advantage of the opportunity and get the heck out of town!  So we packed our bags and headed to Lake Travis for a mini-vacation, with the doctor’s approval of course.  It was just what we needed after being in stuck in Houston for so long.  The weather was beautiful, the wildflowers were plentiful and the change of scenery was much needed!  It was also the first time we were able to travel without worrying about low blood counts and risk of infection since he was so far out of treatment!  It was truly a blessing and helped to take our minds off of what the next weeks held in store for us!

Jonathan’s tumor marker number was to be checked the day after we got back, and since he had not had chemo for quite a while and the brain tumor was taken care of, we were really hoping the number was zero or close to it.  It was up to 141.  We didn’t panic because we thought it could be a spike from the Gamma Knife, so we checked it again 4 days later.  It was 147.  Again, we didn’t panic, but we, along with Dr. Tu, were confused.  Typically if his type of cancer is being resistant to chemo, the number shoots up very quickly into the thousands and can double over 3-5 days.  This was just 7 points!  So we waited another 5 days, and it was 273.  Nearly doubled!

To explain how we felt, what we were told, and how our faith was tested would just be too much to handle for me and probably you too.  What I will say is that God is good ALL THE TIME!!  When the doctors say things are impossible, God shows up; when you feel hopeless and scared, God shows up; when you cry out to God begging for mercy and grace, He shows up!  I cannot explain to you the transformation that happened to us over the last couple of weeks.  We do not know what the future holds for Jonathan, me or anyone for that matter, but what we do know is that God is never going to leave us!  He is the final authority over all of our lives, and no matter what any doctor tell us, God has the final say.  To those who think I’m a complete whack-a-doodle, all I can tell you is that God is so real, and I hope that each and every one of you get to experience that feeling in some way.   

On Thursday, things were doom and gloom big time.  The bottom line is that if the chemo does not completely kill the cancer, there is nothing the doctors can do.  That’s a tough pill to swallow when you’ve exhausted almost every chemo regimen for your type of cancer and your number is beginning to double over 5 days.  By the next Tuesday, God showed up, and there was hope!  The stem cell transplant was approved by the doctor and insurance 2 hours before Jonathan was about to start an experimental drug.  We prayed and prayed that God would give us a peace about this drug if that was His plan, and 2 HOURS before he was going to have it flowing through his veins, God gave us options!  That’s the exact word Dr. Tu used…options!  What a great and wonderful place to be!  We were desperately hoping that he would be cured before we even had to consider stem cell, but as long as he’s cured, we don’t really care how it happens! 

Because his numbers were rising and stem cell will take about a month to put in place, Dr. Tu decided to have him start a new treatment that is commonly used with other types of cancer or refractory tumors (tumors that come back after remission).  It is only a two drug regimen and the immediate side effects are much milder than previous treatments.  He had the first dose last Wednesday, and his tumor marker was already down 50 points Monday morning!  He had the second dose this week, and we will know more about the progress next week.  We are beyond grateful that the cancer has been stopped and is moving back in the right direction!  In the meantime, everything for the transplant is moving right along.  In order to harvest his stem cells, he has to have 2 shots/day for 10 days to boost his counts.  Thank God for insurance because these shots were $14,500!!  Yes, you read that correctly, but we paid $0!!  He had to have the stem cell catheter put in his chest today, which is less than a pleasant experience, but he will not have to continue to be poked and prodded throughout this experience.  His arms and veins will finally have a chance to heal, which he is very happy about!  They will start trying to collect his stem cells next week.  The process should be a painless, 4 hour extraction, and they will repeat as many times as needed to get the amount required.  Since this update is already very lengthy, I will save the details for the transplant process for a later entry, but you can go ahead and start praying for our mental sanity along with Jonathan’s health!!

If you have tried to call, text, email, send a carrier pigeon to either of us over the last month and we have not responded, we do apologize.  Sometimes you just really do not want to talk or can’t talk.  We are recovering quite nicely from the ‘different’ news we received, and we are trying to take advantage of every day and every opportunity that arises.  This whole situation has made us appreciate life, each other, family, and friends much more than we could have every imagined!  We challenge each of you to cherish every moment you are blessed with, say ‘I love you’ everyday, let the small things go, and do everything you can to stay in the best health! 

We love and appreciate you all,

Lindsey

Here are some photos over the few weeks!