Monday, March 19, 2012

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


Tuesday, March 13, 2012

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!

Thursday, March 8, 2012

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,