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!!

Transplant #2

Hello everyone. I want to thank you all for the continued support.  I am not often able to respond to the messages I receive but I see them and they offer me great encouragement. Currently I am in the process of a tandem stem cell transplant.  My first transplant started on May 17, I was released from the hospital on June 7th . I was able to go home for 2 nights and was re admitted to the hospital due to complications with an infection.  I was kept in the hospital a total of 39 days for the first one. Stem cell transplantation involves using the highest doses of chemotherapy that can be administered. They completely wipe out your immune system and replace it with stem cells or "baby cells" that have previously been taken from me. These cells must engraft and slowly begin building me back to normal. The process is a long one and very difficult as with any chemotherapy particularly at these doses the side effects are very hard on the body.  I ask that you all pray for strength as I start the process again Thursday. The first transplant yielded some very encouraging results. The tumor marker number after transplant is 10.7. The results couldn't be better according to the doctors.  As I begin the second transplant the goal is to now completely wipe out any remaining cells. My hospital time will likely be the same. Pray for me, send positive thoughts as we prepare to battle this together.  I'm so grateful and feel blessed beyond measure that the results are so positive. Jonathan Avitia

Tranplant Started

Well we have had a great last 2 weeks preparing for Jonathan's stem cell transplant.  We have been so busy that I haven't had a chance to update everyone so I apologize!  Jonathan was admitted Thursday night for the transplant process. They started chemo Friday, and the last dose was given this morning. He was given extremely high doses of chemo which will completely wipe out his immune system (stem cells) in the next few days. At the moment, his blood counts are still normal, but this will start to change as early as tomorrow or Wednesday.  On Wednesday he will receive his stem cells that were collected a few weeks ago. Over the next couple of weeks, his stem cells will begin to regenerate themselves and create a new immune system. Until that happens he will be at an extreme risk for infection, and we have to take extreme caution to prevent him from any infections.  The biggest side effects will be sores in his mouth, throat, and esophagus, fever, a possible skin rash, and fatigue.  So far he is handling things pretty well. He did have a slight fever earlier which was making him feel pretty lousy, but as I write this, he is fever-free, feeling better and sleeping! He will have to be in the hospital for at least 2 more weeks while he recovers.  His release date will depend on how quickly his blood counts recover, so please pray they recover as soon as possible! Once he is out of the hospital, he will need to be monitored daily for at least a month until he has fully recovered. This transplant protocol is a bit different from most because once he has recovered, he will be admitted for a second transplant. The second one will be less intense than the first, but it is still a major treatment that will require the same precautions. Being in the hospital for an extended period of time is tough on anyone, and we are trying to remember that there is light at the end of the tunnel and this is not forever!  Please be sure to leave him a message on here or on Facebook encouraging him through this time! We are trying to settle into to some type of routine and feel settled in our new 'home', but when we do, I promise we will be updating everyone more frequently with his progress. We know God is working a miracle in his life and he is healed in Jesus name! Please continue to keep us all in your prayers!! We love and appreciate you all!! With love, Lindsey

Gamma Knife - Round 2

From Jonathan's Facebook 4/2/12
I know I look like an astronaut, but I wanted to share this amazing technology with everyone. Here they have set the head frame with pins and are measuring to create a 3D image to pinpoint the radiation. The neurosurgeon repeatedly commented on the size on the size of my head and shot down my theory of bigger brains = smarter. We're now waiting for the doctor to formulate the plan. Pray for their wisdom.
"Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize. Therefore I do not run like someone running aimlessly; I do not fight like a boxer beating the air."(1 Corinthians 9:24, 26 NIV)



From Lindsey's Facebook 4/2/12

Jonathan is out of the procedure and in 'recovery'. Thanks so much for your prayers! Please keep them coming and specifically pray that he has no serious side effects - seizures, nausea, extreme headache! God is good!!

Jonathan is doing very well after the gamma knife procedure yesterday!  Other than some external swelling, he is feeling great! Thanks so much for your love, prayers and support!  We love and appreciate you all!

With Love,

Lindsey

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!

Notes from Lindsey about Jonathan's New Numbers and Gamma Knife Procedure Today!

Hey everyone! Lindsey has asked me to post some updates about Jonathan from her  Facebook page:

From Friday: 


"We got the results of Jonathan's new tumor marker number, and it's 44!! It went down 20 points in 1 week! We're so excited and grateful right now! He is having a brain MRI right now in preparation for the gamma knife procedure Monday. If no tumors are present, the radiation will not be necessary. We're believing for great results from this scan! Nothing is too big or too small!! — with Ila Mae Avitia and 3 others at Mays Clinic @ M. D. Anderson."


From today:


"Jonathan is having his head frame placed for the gamma knife surgery. We're not sure exactly what time he will being having it done, but it will be a long day for us. There is another guy having this procedure today as well, and we're praying and believing with him and his wife. Please keep both of them in your prayers today! — at MD Anderson Cancer Center."


In case you're interested, here is a very detailed video about what is happening today http://www.youtube.com/watch?v=B8SIOaJ7lWQ. 


~Winston

Happy 30th Birthday Jonathan!!

      30 years ago today Jonathan was born! I know for each of us on this blog we have known Jonathan for different lengths of time during those 30 years.  Some have known him for the whole 30 years and some only met Jonathan in the last year or two.  For me personally, I met Jonathan five years ago and he has been a part of my heart since the minute I met him.  I know that all of us have let him become a part of our hearts since Jonathan is so easy to love! 

     Jonathan, I know that these last several months have tried your faith and your physical stamina but you keep getting up every day and doing what you have to do to get better and you keep fighting with the love and prayers behind you of every person who has ever had the pleasure of knowing you.  I hope and pray that on your 30th birthday you will reflect on that and look forward to the future where I know in my heart there is complete healing in store for you. May your 30th birthday be filled with love, happiness and peace.  You are in our thoughts, our prayers and most of all in our hearts.  Happy Birthday Jonathan!

Latest news

I was hoping I wouldn't have to go into a complicated explanation of today's tumor marker number, but I do so here it goes.  Before the 8th round of treatment, the number went up a little to 38. During treatment it spiked at 86, which is normal, and when they checked it 3 days later, it was starting to go down at 83.  We expected the number would spike, but the important part is that it goes back down. While we always want the number to be zero or at least below 10, we REALLY need to keep going in the right direction...down!  So today, a week out of treatment, the number is at 63!  We will recheck the number next Thursday for the 'real' tumor marker for this round.  It is very important for Dr. Tu to understand what the tm number is doing over the next 2 weeks. If the number continues to go down...sorry, WHEN the number continues to go down on its own outside of treatment, then we may be seeing light at the end of the tunnel for chemo.  His blood counts today were the lowest they have ever been, which is very dangerous and scary. We were sent to the hospital after our meeting with Dr. Tu for a blood transfusion. He is about 2 hours into the 4hr infusion. It's never ideal for this to happen, but he should be feeling better tomorrow..thanks donor! He will take about 2 weeks to fully recover, and we will have to be very careful with his exposure to people and places.  He has been suffering with severe mouth sores again, so we are hoping the new blood will help to heal them quickly!

We met with a brain radiation oncologist and neurosurgeon last week, and they collectively decided that surgery is not an option for the remaining lesion in the brain. They will be doing Gamma Knife Surgery, which does not involve any knives or surgery!  It's an out patient treatment that will send 192 radiation beams straight to the tiny tumor. The individual beams are not strong enough to cause any damage, but when they all meet at the tumor, they cause extensive damage - only to the tumor.  The success rate for this treatment is extremely high and within a few days he should be feeling completely normal. They will redo the brain MRI next week to see if any tumor still exists or if it's had any growth or shrinkage. If something still remains, the 'surgery' is scheduled for the 19th. Once the brain lesion is taken care of, it will allow us to eliminate a marker releaser and focus on the remaining tumors in the chest, liver, and lungs. 

We also met with the stem cell transplant team today. In our minds, that is really a last resort. It's a very intense treatment with no guarantees, and the whole process could take up to 4-5 months with 2 months being in the hospital. This treatment would only be necessary if the tumor markers do not normalize with low dose chemo. We have to get the ball rolling with them early because it takes a while for the acceptance process to go through (3-6 months). It was educational, but we hope that is all we have to know about it.

In other news, we are sadly moving from our gorgeous farm house tomorrow.  (we'll be at the hospital til 1 am, no big deal!)  Since our length of time here is uncertain, we simply could not afford to keep the house for an unlimited amount of time.  We will miss our house, the horses, the dogs, and our landlords very much, but we are looking forward to starting a new chapter in the new apartment!  We were offered an amazing deal for a place literally across the street from the medical center. Being that close to the hospital will be very nice especially if/when he has surgery and treatment. Sometimes our 15 min ride to the house feels like an hour when he is not feeling well. We are also hoping that our constant time here in Houston will be able to taper off here soon, and we will be able to spend more time in New Orleans and Gatesville!  We can dream and believe, right?!  There will be a waiting period (<6months) between the end of all treatment and surgery, so that is the time I'm referring to.  For now, we're looking forward to a fun weekend with Pepe and Ila Mae coming to visit and help move of course! ;)

Overall, we are still encouraged and believing and expecting for a complete healing, but we're on God's timing and not our own!  Please continue praying and believing!! We appreciate and love you all very much!! 

With love,

Lindsey

Post from Lindsey's Facebook

Saturday, February 25

We are half way through Jonathan's 8th round of treament, and he has good and bad days. Today was a good day, and we were able to go to the BBQ Cook-off at the Texas Rodeo!! It was freezing, but it was so nice to get out, eat some good food, and ride a few rides! Thanks Dennis and Lynn Augustin McMahon for a great day!!

Jonathan will have his last day of treatment for round 8 tomorrow, Wednesday.  We will not find out his new tumor marker number for about 2 weeks.  Please continue to pray for the best result of "zero." 

Love and appreciate all of you,

Lindsey

It's a Journey...

Cancer is a funny thing because no matter how many people have had it before you, each person's journey is unique to them. There are no books, no answers, and sometimes no explanations.  It's quite possibly the most frustrating thing to deal with! Now that that's out of the way...Jonathan's new tumor marker number is 38, which means it went up a little bit from 23. The frustrating part is the doctor doesn't know why. There could be a number of different reasons why, but we do not know for sure. It could be the cancer is being very stubborn, a false reading from the chemo (which has happened before but we did not share), a dead tumor leaking the traceable hormone, or an active tumor.  There are still tumors in all the original locations (smaller but still there), so it's impossible to know who the culprit could be, but it seems like Dr. Tu suspects the liver. He is talking about a few different options for moving forward, but for the immediate time, Jonathan is going in tomorrow for another round of ATP which he has had before. Its a 1 day treatment each week for 3 weeks.  He opted to have it in-patient this time (I think he likes the attention from the nurses..he's definitely a favorite!).  We can handle 1 night in the hospital..we're pros! 

We did not receive 'terrible' news today, but I would be lying if I said we aren't disappointed, frustrated, sad, etc. This is a journey, there will be bumps in the road, but we will overcome them!!  Please continue praying for Jonathan's complete healing and for 'zero'! We appreciate all your love and support!

The righteous cry, and the LORD hears and delivers them out of all their troubles.  Psalm 34:17   Thank you God for your promises! Tomorrow is a new day!

With love,

Lindsey

Update from Houtson

Well our two week break will be over tomorrow. We meet with Dr. Tu tomorrow afternoon to find out the new tumor marker number and what the next step will be. This last round of chemo was very hard on Jonathan. He struggled a lot with nausea, fatigue, and a new one for him..mouth sores. Thank God for 'magic mouthwash' because it was affecting his eating, drinking, and even his speech! We finally got everything under control, and we were able to enjoy the last week with friends and family who came to visit. I've been trying to take more pictures of our lives these days and I've included a few below from some recent visits. 

Yesterday Jonathan spoke with the Radiation Oncologist, who ordered his brain MRI a few weeks ago, and he confirmed that only 1 spot (5mm) remains in his brain. There were two, possibly 3! They're not sure if the spot they see is a tiny tumor still or if it's just leftover tissue, but if it shows up on the next MRI, they will have to determine the best way to treat/remove it. We are believing this spot will disappear and that no surgery will be required in his brain! 

It's amazing that Jonathan has been through 7 rounds of chemo. Prayers are truly being answered! He is not feeling 100% by any means, but his strength the last few days has been remarkable! He has been working on a few plans, getting out of the house, and even helping me around the house! I'm particularly grateful for the last one :) I just can't believe how strong he is through all of this! Please continue to keep him in your prayers! We are believing for great results tomorrow, and we just know God's hand in all of this! 

Please Pray specifically for 'zero', wisdom for Dr. Tu, and mental, emotional, and physical strength!! We love and appreciate all of you more than we could ever express! 

With love, 
Lindsey 

P.s. Winston, I'm sorry I forgot to take a picture of you two when you were here!! 
                  
                                                                   Hibachi with my family and Kevin

                             
                     Jonathan and Kevin celebrating Kevin's new job with Vietnamese coffee!

                                                  
                                                         Ila surprised us last weekend!

 Auntie Connie, Pepe's sister, came in from San Francisco!

Updates from Lindsey's Facebook

 Thursday

We're still sitting in the doctor's office waiting for treatment orders, but we're so excited we just have to share with everyone the good news...the new tm number is 23!!! He will be going into the hospital tomorrow for a new treatment that will last 4 days. Brain results will be Monday. Thanks everyone for the prayers, but most importantly, Thank you Jesus for your healing power!!

Friday

We're all settled in the room, and they just started Jonathan's pre-meds. He will be having two chemo meds tonight-one for 15 min and the other for 12 hours. Our favorite nurse, Mylene, is with us tonight, which makes Jonathan feel very much at ease. Thank God for amazing nurses! He has already had 3 of the 4 meds being used this round, but the 12hr med is new and the others are at a higher concentration or longer infusion than before. Day 2 & 3 he will have 24hr infusions, which is never fun, and day 4 will be 2 hrs. Please pray his nerves are settled and we are able to sleep as much as possible! I'm trying to get better at updating...bear with me! Goodnight!

 

Prayers

Friends, we need lots of prayers tomorrow!! We will find out Jonathan's tumor marker number after his 6th round of treatment, and he will be having a brain MRI to see if the two spots have disappeared. We are believing for great news!! We have had such an amazing week with no treatment and no major side effects! God has really blessed us and we know the blessings will continue tomorrow! Thank you for your love and prayers!!

Jonathan's Soldiers on Vacation at Sea World in San Antonio!

Jonathan's Soldiers at Sea World in San Antonio!

Happy New Year Jonathan!

Love, The Moffett Family,

The Best Family and

The Warren Family

Almost There

We hope everyone is getting excited for Christmas!  We cannot thank Chris Erwin and the people of Gatesville enough for the wonderful benefit they had for Jonathan yesterday!!  We wish that we could have been there more than anything.  The outpouring of love and support is just overwhelming!! We pray that God truly blesses each and every one of you!

We went to see Dr. Tu today for the new tumor marker number and the results of a chest CT Scan from yesterday.  The new number is 54!  Dr. Tu was hoping the number would be at zero (as were we), but we are still extremely grateful that everything is continuing to move in the right direction, even if it is slower than we hoped for.  It is crucial that the number gets to zero with this next treatment!! We need to specifically focus our prayers to this number and that it stabilizes once it gets to zero.  Dr. Tu is changing the chemo again to ATP, which is a 1 day treatment, once a week for 3 weeks.  He will be going in tomorrow morning at 9 for this outpatient treatment.  It is a combination of 3 drugs, 2 of which he has seen previously.  This treatment should be less invasive to Jonathan's body, but hopefully it is the right "chemo cocktail" for the tumors!  This 1 day treatment also means that Jonathan will not have to be in the hospital for Christmas, and I cannot tell you what a blessing that is!

Since the tumor marker number did not normalize, the chest scan was done prematurely; however, it was encouraging to know where he stands at this point.  The lung nodules have significantly decreased in number and size!  The first report said there were innumerable nodules in each lung, and it now says that innumerable nodules have disappeared!  The mass behind his sternum has decreased in size as well.  More than likely, this mass will have to be surgically removed, but we will have to wait to see what this next chemo and God will do!  Again the most important thing right now is for the tumor marker number to get to zero!  Everything else will be handled once that happens.

Many have also asked how you can donate to Jonathan.  A dear friend set up a PayPal account through our company website, http://www.javitia.com/, where you can donate.  We are humbled by any outpouring of love whether monetary, prayers, cards, emails, etc.  God has truly put the most amazing people in our lives!

Please keep standing in faith with us through this journey!  We appreciate all the prayers and support, and we certainly could not get through this without them.  We wish you all a very Merry Christmas!

With Love,

Lindsey

Jonathan's Army! Photo from Round Rock!

Here are two of Jonathan's Soldiers in Round Rock, TX!!!  Thank you Sue and Fred for your prayers!

Relay for Life in Gatesville!

Here are some awesome pictures sent by Amber Tippit from this year's Relay for Life in Gatesville. They did a balloon send off for Jonathan! If you look closely you can see a whole lot of Jonathan's black bracelets! Thanks, Amber!! 

Update from Ila Mae

This is reposted from Ila Mae's Facebook page:


Family & Friends:
My Bubba has been admitted for another 5 day treatment of chemotherapy. This time, the routine will be different in a couple of ways. Two new chemo drugs will be introduced: Paclitaxel and Ifosfamide. Cisplatin will be a part of this round as well--he's had it before. With past treatments, the longest interval for a chemo drip was 2 hours. Tonight, the first chemo administered will be Paclitaxel...and it will drip for 24 hours.
For the next 5 days, I ask that you please pray for my brother's peace of mind, that he focuses on positive thoughts. Pray for his body's endurance, that the side effects be small and he maintains his ability to nourish his body with food. Overall, please pray for my brother's strength, that he may never be weak in body or mind!
Thank you so much- Love, Ila Mae

Think ZERO!

I received word last night from Lindsey Dotson that Jonathan's tumor markers are down again! This time they have decreased to 128. When it comes to tumor markers, obviously the goal is to get to ZERO. I jokingly told Jonathan last night that he spent his whole life trying to be somebody and now his only goal is to be a "zero" - it's a funny thought about a very serious goal! Mention the number ZERO in your prayers and thoughts as that is Jonathan's magic number. Think ZERO!

He was admitted last night about 7:30 pm for another round of treatment. Please read Ila Mae's very detailed post directly above this one for all the specifics!

Thanks for all your prayers, thoughts, and concerns!

Let's help Jonathan be a ZERO!

More soldiers for Jonathan's Army!!!

                                         Two more of Jonathan's Soldiers! Stephanie Khouri sent
                                          these pics in from Austin!!!

More good news!

Word out of Houston this morning is that Jonathan's tumors markers are down AGAIN to 242!! (When Jonathan was first admitted to M.D. Anderson his reading was 104,000) This is very positive and very good news! Stay tuned for more information!

~Winston

Update on Jonathan

I apologize for not updating everyone for so long!  We’ve been somewhat busy here in Houston with moving, doctor visits, and a little fun when we can.  We have a little story to share to show everyone how God hears all of our prayers no matter how small or silly we might think they are.  After Jonathan’s first round of treatment, we rented an apartment nearby the hospital that was convenient but expensive.  As the lease on the 1 month rental was coming to a close, Jonathan kept saying he really wanted to rent a house on a horse farm or with a lot of land.  Given our need to be close to the hospital (and the size of Houston), we did not even consider this as a possibility.  As I was looking for a new place, I stumbled across this listing entitled “Rare and Unique Rental Opportunity.”  When I clicked on the listing, I almost couldn’t believe what I was reading.  It was a beautiful, brand new house that was 3 bedroom/2 bath, furnished, only 8 miles from the hospital, and….on a horse farm!!!  The landlords, who wanted a year lease, let us sign a short term lease and have been such a blessing to us.  They also live on the 10 acres in their own gorgeous home, and our only other neighbors are 5 dogs and 40 beautiful horses! We’ve only been here since Wednesday, but I can’t tell you the difference this environment has made in our lives.  I’m attaching a few pictures to show everyone our new paradise! 

As for Jonathan, he is doing fairly well.  His white blood cells have been hit very hard in the last week, and he is being monitored daily for fever and any signs of infection.  Because he is at such a high risk for infection, much of our time is being spent at the house or outdoors.  This is when the horse farm really comes in handy!  The low blood counts leave him feeling tired and weak, but his overall demeanor and attitude is very good.  We have really tried to enjoy the last two weeks and take advantage of his free time from the hospital.  He has a full day of appointments tomorrow, and depending on his blood counts, he could be admitted for the 2^nd 21-day cycle of treatment.  We will also find out his new tumor marker numbers.  We are praying and believing the numbers are at zero, his blood counts are up, and all tumors are gone!  Keep Jonathan in your prayers tomorrow, and we will try to update everyone after the appointments.  Thanks again for all of the love and support!  We cannot tell you how much of a blessing you all are!

With love,

Lindsey



You can see the red brick house in the back!



God is so good to us!!

Jonathan's Soldiers at Gatesville High School!

Jonathan's army of cafeteria workers at Gatesville High School!

Thank you for sending in the photo!

Jonathan's Army....1033 strong!!!!!

Hey everyone,
    I just wanted to give you an update on Jonathan's army!  We have received requests for wristbands from 1033 people in 10 states, 35 cities and 3 countries!!!!  That is a lot of prayers!  And God is definitely listening.  Please keep praying each time you see the wristband on your arm and send positive thoughts and prayers to Jonathan and his family.  As of tomorrow morning, all of the orders that I currently have for wristbands will have been mailed out.  The new order came in this morning and I am almost out of those!!  Don't forget when you get the wristbands to send in photos so that Jonathan can see photos of his army!  Below I am including some photos that I got today of some of Jonathan's army from Colorado and from Gatesville.  He even has four-legged army members!  Thank you, thank you, thank you for all of your love, support and prayers for Jonathan!
Love, Donna

                                                   Soldiers from Gatesville Primary School!

Lynn, Lee, Kobi and Dallas....Jonathan's soldiers in Estes Park, Colorado!

I love that we have four legged soldiers too in Jonathan's army!!

Blessings of a Hometown

When I was growing up in Gatesville, one of the things I disliked the most about it was that everyone knew everything about you and everyone knew your business. Now that I've grown up and moved away, one of my FAVORITE things about Gatesville is that everyones knows everything about you and everyone knows your business!! Why the change? Because I've come to realize that for those of us that grew up in small towns, you realize how firm a foundation it can be in your life when troubles come along (which they will). A hometown is like a tree, firmly rooted and deeply planted, and when the winds of life blow violently, the roots simply hold firmly to the ground and remind you that no matter where you live or go in the world, you will never weather a storm alone. And you will NEVER be alone in a battle.

What prompted this thought were these photos sent by Luke Jageler of him and Jonathan. Truly the roots of friendship run deep! Thanks for these great pics Luke!

~Winston

Good news from Houston!

We finally have a plan to share with everyone!  Jonathan's doctor visit Monday was very informative for us, and it was much needed.  Last night he started his first full dose treatment.  He will be on a 21 day cycle now with a 5 day treatment beginning each round.  He will receive 2 outpatient chemo treatments during this time as well. They are anitcipating 3-4 of these cylcles, but it all depends on how the cancer reacts to the treatment. The doctor explained to us when his 'bad' days should be expected, but also when his good days will start again. Of course when his good days start again, the cycle starts over, but at least he knows they will come.  He told us to expect to be here for 3-4 months, but we are believing for a shorter stay!  They still remain very positive about his response to treatment and getting this thing cured!

The first two rounds of chemo were very effective, and the tumor marker numbers continue to decrease!  The tumor markers are present in your blood only if you have a tumor; therefore, the marker number should be zero. When we arrived at MD Anderson, Jonathan's tm was over 104k.  After the first treatment, they went down significantly to 19k, and after the second treatment, they are at 4,950!!  Dr. Tu said that the presence of the tumors is directly correlated to the tumor marker number - meaning as the tm go down, so do the amount/size of tumors!  Once the tm number stabilizes to zero, chemo will no longer be needed or affective because a) the tumors are completely gone or b) what tumor remains will have to be surgically removed.  We are praying and believing that the chemo will remove all tumors and no surgery will be needed!
There will be some hard days ahead as the stronger chemo treatments work through his body, but we know God is working a miracle in his life and this too shall pass.  We appreciate all of your sweet messages and words of encouragement.  Donna said she has given out 775 wristbands supporting Jonathan!  He was absolutely amazed by the number of people praying and believing for him.  Keep praying..we know God is listening!!

Sincerely,

Lindsey