We arrived in Houston on Sunday night. Flight was great, but we did have to administer IV decadron in the ascend because Kass started to feel pressure in her head. We were so worried that she would feel sick, but she did ok. She got a headache on the way down, but after being back on the ground awhile her headache went away. So glad!
Our pet scan appointment was early on Monday morning and she was so tired she slept right thru it which we were glad since she had been throwing up prior to her appointment since she had been off treatment for about 4 hours before. We waited for CDs to be burned so we could walk them over to the Burzynski Clinic and maybe get results right away. We were so nervous and anxious for results. We got to the clinic and we had to do our routine Monday blood draw. After that , we left Kass in the infusion room for a bag of fluids since she had been sick all morning and we met with the radiologist. He tried to evaluate the pet scan comparing it to our last MRI, but he really didn't want to make guess at it before Houston Imaging made an actual calculation of exact activity of the tumor. We were disappointed that we would have to wait another day. Our nerves would have to hang on for a little longer.
|Where Hope Exists!|
So we went to eat and then headed over to spend the evening with the Geddes family who live very close to the clinic. We met the Geddes last year when their son Gage and Kassidy started treatment at the same time. We have kept in contact almost every day and they have been a great support for us since they have been around the block a few times. Gage has had brain tumors since he was 2 years old off & on, but he is now tumor free! Yeah! We are so thankful for great friends.
Today was the big day! Results day! We got to the clinic and not one of us could really eat. Our stomachs were a mess. Right before our appointment we met with the Heil family whose baby girl Alynn of only a couple months is fighting a ganglioglioma on the left side of her head and Catherine who is fighting lymphoma, it's her 3rd fight with cancer. We all decided we would go to lunch together after all of our appointments.
|Kass & Catherine whose battled breast, kidney & now fighting lymphoma. It was her 2nd day of treatment.|
|Kassidy & baby Alynn, she too has a ganglioglioma and she's been on treatment for a week and half.|
We then sat in the glass office and waited for doctors, our hearts beating so hard I swear could be heard thru our chests. Not long Dr. Burzynski, Dr. Acelar, & Dr. Marquis came in. First thing Dr. B mentioned how good Kass looked. She smiled! He started off by saying that by looking closely at the tumor that it looks negative! WHAT! We were shocked. We asked to repeat! Dr. Marquis then explained that Houston Imaging took a real close look at the tumor and they said anything below a 3% activity is deemed negative and that Kassidys tumor was well under 3% activity. Oh my gosh! A pet scan allows for doctors to see what part of the tumor still has active cancer cells and which part are dead cells (necrosis). That they carefully measured each one of Kassidys lesions and compared them. That the results took a little longer because Kassidy's tumor is not a single mass but a couple of them and they wanted to make sure they assessed each one correctly. WOW! Dr. B then proceeded to tell us that he would like to lower Kassidys ANP dose right away to 330ml on bag 1 fom 500 ml and keep bag 2 the same for the next 8 weeks. All we could think was " is this really happening?" After the 8 weeks we would do an MRI to make sure there was no growth and if there was not we would lower the dose again and repeat an MRI to make sure the tumor would stay the same size. And to tell you the truth after that we don't remember. Lol!
|Dr. Burzynski & Kass almost a year later!|
At that point we could not contain our excitement! Our hearts were jumping for joy in a way I have never felt before. The joy was overwhelming! We thanked all the doctors especially Dr. B and ran out of the office to tell our new found friends that were at the clinic at the time. Then we called a few loved ones so the could spread the GREAT news!
The greatest part of all this is that ANP worked for Kassidy! We are so glad after all she's gone thru this last year. All of it was not in vain. We pray that as we wean down the tumor doesn't come back. That either the remaining tumor completely dies off and the necrosis left behind does not cause any side effects or is later absorbed by her body. We are thinking she will still be in treatment for mother 8 months to complete the treatment, but now we see the light at the end of the tunnel. SIGH!
We are thankful to our Heavenly Father for this blessing! Our faith has carried us thru some hard months and we know that he has always been there holding our hand. We dreamed of this day! It is still so surreal. Kassidy has been so courageous thru all of this, we cannot be any more proud of her. God truly gave us an amazing young lady. One who trusted us to go "outside the box" of medicine protocols to make sure that her quality of life in the future would be spared. Today we know that we made the right decision. That sometimes listening to that silent whisper can make a world of difference, even though not all agreed especially some doctors. We thank each one of you that support us and that pray for us. I know there are many of you. I ask that you please don't give up on us just yet. The fight is still not over! But we are almost there ;) god bless each one of you because without you we would NOT be where we are today. Thank You from the bottom of our hearts!!!!