Friday, November 23, 2012
Grab a cup of coffee..this may take a while!
It has been quite some time since I've updated the blog! Lately, updates have been happening through facebook. Jonathan and I make all posts public so you don't have to have an account or be our friend to see our posts related to him. You can just search for either one of us or friend us! Soo much has happened over the last few moths, and I would be for days if I went through every detail. Jonathan finished the second transplant at the end of July, and it was much better than the first one. Don't get me wrong, it was still an unpleasant experience, but I don't think anything could compare to the horror of the first transplant. When he started the second one we knew he had a pretty serious kidney infection, and it's a miracle that he had no complications during the transplant. However, we were told, when he was discharged, that the antibiotics he was taking would not be able to completely get rid of the infection and the kidney would have to be removed. The rarity and severity of this infection was very real. Only 200 cases have been reported worldwide with most being identified in autopsies! No thank you...let's get that thing taken out! So August 29, he had his right kidney removed. The surgery went very well, and everything was contained in the kidney. This was a major blow for Jonathan mentally and physically, and it certainly was not the surgery we were hoping he would be having. Around the same time as the surgery, we also found out that the transplants had not completely eliminated the disease, and his tumor marker was going back up. The number is supposed to between 1-0, and stem cell had brought it all the way down to 1.2. We truly felt like stem cell was the answer and that God had opened the doors for everything to go through so quickly. This was and still is devastating to us, but we have not given up hope!
While our doctors tried to find a chemo or medication that could stop the growth, we just began to cry out to God. The Bible says that God 'plans to prosper you and not to harm you, plans to give you hope and a future.' So if God plans for us to have hope and a future, than so should we! A few weeks after the surgery, we took a much needed trip to Denver, Boulder, and Estes Park. Jonathan showed me around his college town where he no doubt behaved like an angel ;)! We also went to the ranch where Jonathan worked for many years, Wind River Ranch, in Estes Park, and I finally was able to see this place and meet the people I have heard so much about. It is truly a sacred place! To put into words what Wind River means to Jonathan would be impossible, and we are just grateful for the opportunity to go there, together. We are also so thankful for the love and support we received while there. We love you guys and can't wait to get up there again soon! I've posted pics below from our trip!
When we returned home, we met with Jonathan's oncologist Dr. Tu, and he suggested a chemo regimen to try to stop the progression. A few days after the treatment, we were off again to Destin, FL. We had an amazing time and were completely believing that the chemo was working and we'd be back on track. Unfortunately, the chemo had zero affect on the disease. The number was getting high and Dr. Tu feared that we were running out of options. The strange thing was that Jonathan was not really in any pain, at least not anything significant, so it was hard for us to understand how this could be happening.
While in Colorado, we lost a dear friend of the family in a car accident, and it reminded us of something very real. No one is promised tomorrow. We can all say it over and over again, but until you are really faced with it, I don't think you can really know what it means. It doesn't matter what's happening in Jonathan's body, it doesn't matter if you're in picture perfect health, none of us are promised tomorrow. So while we waited for more treatment options, we decided to do something crazy..something we had been talking about for months and planned over and over in our minds...We got MARRIED!! A lot of you know this through facebook already, but for those of you don't...surprise!! On October 11 we decided that on October 20 we were going to get married! My poor mother had a week to plan everything, but she did a fabulous job! If you're wondering if your invite got lost in the mail, we decided to keep it very small with only our immediate families and grandparents. We also decided to keep it very quiet and wait to announce it. We thought it would be better for people to be surprised rather than to hear 'you're not invited.' We meant no harm, and we hope that everyone understands. Everything took place in Mandeville, LA, on the beautiful lakefront, and it was the most perfect day either of us could have imagined. Everything fell perfectly into place, including my wedding dress, which was purchased 2 days before the wedding and needed no alterations! For all you ladies out there, you know this just does not happen! We had the most amazing photographer who I will forever be indebted to!! She wrote the sweetest write up about being a part of our wedding that you can read here and also view some of our pictures. We took this huge leap of faith because we truly believe that we will have a future together!! We cannot say thank you enough for all of the sweet messages people have sent to us! It means so much to us to know how many people support us and love us! We had no idea our story would have such an impact on people, and we hope that through it all you see our faith and what God is doing through us. We pray for that everyday.
The day after our wedding, we had to head back to Houston for Jonathan to start a new chemo treatment on Monday. We got the results back for the tumor marker, and it was high, very high. I'm not getting into what exactly the numbers are because we feel at this point, it really doesn't matter. We don't want to take everyone on a number's roller coaster. CT results came back that day as well, and we had a better understanding of what was happening. Just to recap, Jonathan was diagnosed with a large primary tumor behind his sternum, innumerable nodules in both lungs, a large liver tumor and 2 small brain lesions. At the end of the transplants, the primary tumor had decreased by over half, the lungs cleared up significantly, the liver tumor had decreased by half, and the brain lesions were taken care of through gamma knife radiation. Ok, so when the results came back in October, the primary tumor decreased even further, two lung nodules increased a bit, and the liver tumor had doubled in size. Of course I have my theories as to what is going on, but I think everyone could agree that the liver seemed to be the problem. Dr. Tu and his nurse practitioner, Rosaly, are the absolute best team we could have ever prayed for and they will always fight for us. They are also very realistic with us. Dr. Tu had said when the number started going up again that he was no longer trying to cure Jonathan but rather maintain the disease, but even to maintain it would be a miracle.
Dr. Tu changed the scheduled chemo treatment to accommodate these new findings and added a chemo that would specifically target the liver. This chemo had not been used for his type of cancer so it was a gamble. Jonathan received this new chemo through an infusion pump he carried around in a fanny pack for 46 hours. Yes, he hates the fanny pack and who wouldn't?! A few hours before he was scheduled to be disconnected, he started having severe upper abdominal pain. We went to the ER to have everything checked out and the pain was getting worse by the second. Very strong pain medicine was doing nothing for him! They admitted him overnight, and when the doctor came to see him in the morning, they said that they feared the liver was continuing to grow despite this chemo as well. However, a closer look at the x-ray showed a different diagnosis...he was extremely constipated!! I have never been more relieved to hear that the man I just married was full of ..well, you know! They wanted to keep him a few days until he 'cleared out' and to help to manage his pain, but the pain shifted to his side and never went away. A few nights turned into the weekend. Our 'severe constipation' diagnosis turned into an unexplained fever which turned into 'we're sorry but we think your liver tumor is in fact still growing.' They said that they would manage his pain as best they could, but if this chemo is not working (which they assumed it was not), there are not many options. I'm not going to go into exactly what we were being told over the our time there, but I will tell you that it was not good.
Some of you may think this is crazy talk, and that's ok, just accept me for my craziness. I didn't believe what we were being told in the hospital; in fact, I flat out rejected it. No, I don't have a medical background (although I do know more about cancer than I ever hoped to), but I know what I believe in my spirit to be true and that is that Jonathan is already healed. I also believe what the Bible says is true, which is that Jonathan's and everyone's sickness has already been paid for. No, I don't know why some people are not healed or why we are going through this. I do know that God has a purpose and plan for all of us and it doesn't involve us getting sick. The truth is I don't know what the future holds for me or Jonathan, but I know that God holds our future. I trust that he will see us through the dark times no matter what, and what happens in our life is not by accident. Trust me, when I see the love of my life going through the most horrific things you can imagine, the first person I want to blame is God. Why is He allowing this to happen? Why hasn't he taken care of this by now? Why Jonathan..why me? It's overwhelmingly depressing and defeating at times. But every time, not just some times, every single time we need God to show up, he does. Not when we think it's time, of course, but when he's ready.
We stayed 1 week in the hospital. It was a terrific honeymoon in the luxury suite at MD Anderson overlooking the parking garage. Jonathan was discharged with morphine pills he was supposed to take morning and night for an indefinite amount of time. Four days after being discharged we met with the doctor for a follow-up visit. Jonathan had no pain in his abdomen; he had also not taken a single morphine pill. What happened that day no one could have imagined...the tumor marker was down 87%. It went from really high to 'I can't explain this'. A chemo treatment that has never been used for germ cell tumors not only stopped the cancer but significantly destroyed it!! Jonathan received the second treatment a few weeks ago, and on Monday, the number went down again. To have multiple doctors look at you and say that they can't explain what's happening is a feeling I can't explain!! We know exactly what's happening!! Dr. Tu said the news was his Thanksgiving and Christmas present! Three doctors told us, “I don't know what you're doing, but keep doing it.” We don't know what happens from here and we are no where near the safe zone, but we thank God for the miracles we have already received!! We'll keep doing what we're doing, all of you keeping doing what you're doing, and we're all going to sit back and watch what God's doing! He is now on his third treatment this week and it will continue every two weeks. He has a brain MRI scheduled for Monday. Please pray for clear and positive results!
Needless to say, this Thanksgiving we are overwhelming thankful for life, family, friends, memories, and each and every day we have together!! Our hearts are so full we could literally burst! We are so thankful for all of you reading this and believing for us. Your support through this tough time has has meant more to us than we could ever express. Every card, facebook post, message, text, call, email, etc. we receive is appreciated immensely. You guys have really out done yourselves, and we hope that if ever the tables were turned, we would show the same level of support we have received for all of you. Thank you, Thank you, Thank you!!
Please continue to keep us and our families in your prayers! We ask that you pray for Dr. Tu and Rosaly, as well, that God would give them the wisdom to direct our next steps!
We love and appreciate all of you,
Lindsey and Jonathan
Almost forgot...On Sunday, December 2, our friends and family in New Orleans, along with Friends In Need, are hosting a benefit for us. The event will take place at 5 pm at Generations Hall in the Warehouse District. There will be a live band, free food and drinks, a silent auction, raffles, door prizes, etc.! I saw some of the items being auctioned, and you will not be disappointed!! Jonathan and I are planning to be at the event, and we would love to see everyone there having a great time with us! Tickets are $40, and can be purchased at the door or online here. Can't wait to see everyone!!
Posted by Fans of Jonathan at 12:58 PM