Noah…may the force be with you!

We had our first radiation treatment today – scheduled for 11 am, but they wanted us there early to have a meeting. We met with all of the doctors and the short of it is that there is a large, black-olive size tumor at the base of his spine. Absolutely. Dennis and I have now seen it with our own eyes. The “one month ago MRI” showed a little mushy spot, today’s tumor was as defined as the original tumor. Once again… we did pray for clarity. Now, they are going to give it a boost of radiation; they cannot operate. We are thankful. If we would have gone through this whole process and then after figured out that “oops … that was cancer in his spine” we couldn’t go back and radiate it. We are back to high risk, M2 or M3, but we are thankful to God for the doctors clarity and a direct path.

So… Noah was amazing!! (His valium doesn’t hurt either He said that “this machine is AWESOME” and “I want to do this all day!!” – “This is better than Disney and there are NO lines!” On and on and on. The Ladies were laughing their heads off asking if they could keep him. They said they had never had child like him before. Of course… He’s Noah!

Once we left, he doused me with Silly String (nurses gift) and held Dad’s hand as we left. Tried to go eat; were sucker punched by the meltdown of head and stomach pain; he finally fell asleep and has been for about 3 hours  now. I’ve called the doctor 3 times now. Whew. And we got tickets to the butterfly garden – silly Mom & Dad. (At least they were free.)

Tomorrow is our first Chemo and Radiation day – Let’s see what that brings.

We love you all – please pray for killing all of the cells while protecting his brain and body. (Also, pray for Landin, his little sister, she is starting to show signs of stress as she is home without Mom and Dad.

Thank you! Amber & Dennis

Miracles are happening – what a great Thanksgiving!!

We arrived back at home late last night and I couldn’t wait to find a minute to post. Yesterday was a very long, hard day. Noah had a 3 hour MRI on his spine and head and then we drove home with him in a crying stupor from the anesthesia. But – Let me tell you about the phone call that started off our day.

I was trying it keep him comfortable as we prepared for the day. My phone rang and it was Dr. Kenneth Cohen from Johns Hopkins. (He is the Clinical Director, Pediatric Oncology; Director, Pediatric Neuro-Oncology; and Associate Professor, Oncology and Pediatrics The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins. You can Google him.) With everything that has been going on, I almost forgot that we asked for a second opinion from them. I ran to the stairwell, sat on a step and asked his opinion. He said that this (and last) Tuesday, he and all of his Pediatric colleagues had a “consortium” about Noah’s case and their findings were that he was a Standard case of Medulloblastoma (not High Risk) and that they all concurred that the spine is negative!  He said that they have seen many, many of these same cases that the contrast collects in blood vessels in the spine (where it was suspect in Noah.) I was shocked. My next question was treatment (as I thought about packing our bags for Baltimore.) He said that they would radiate with the 2340, lower dose radiation (not the 3600) in combo with chemo. I said “So, if the spine is negative, would you radiate it?” He said “Oh yes, the total spine and the head.” (I smiled.) He then asked if we had any plans and who else we were speaking with. I told him about Dr. Smith and that his treatment is what she recommended as well. He said that he was very glad to hear that she was our doctor and if he wasn’t in this field, he would bring this children to her! He knows her very well and went on and on raving her praises. He continued talking, telling me the giant differences in the damage between 3600 and 2340. I told him my story of the doctor that said the “from 6″4″ height to 5’7″ etc.” and he said that with the lower radiation, he may loose an inch, but with replacement thyroid, etc. he would be fine. He said the differences between the higher radiation to the lower, the damage is night and day.  He was the only other doctor that spoke to us with conviction other than Dr. Smith.

So that leads us to yesterday. As we sat in recovery at 6:30 pm, Dr. Smith stopped by to visit and confirm everything for Monday. She said from her preliminary review of the CT and the MRI, his port and shunt were great and she is classifying Noah as a M2 case!!! If anyone has read the “M” chart, we were told that he was an M3 or M4 in the hospital. (M4 being the worst!!)

God has answered our prayers in directing us to the right doctors and the right protocol for our baby boy.

Thank you, Thank you for your powerful prayers! He is lifting us up – wrapping us in his strength.

Our next venture starts Monday – Pray, Pray, Pray!!! Chemo and radiation 5 days a week. Whew!

We pray for all of you nightly and wish you a blessed Thanksgiving!! Enjoy and be thankful for all of God’s many, many blessing!!

Love Amber

Well we have picked a path, (or “protocol” in doctor talk.) We are in Gainesville right now and after many doctors, many conferences, much help (Thank you Robin and everyone) and many prayers we will be working with Dr. Amy Smith in Gainesville at Shands. With the type of Medulloblastoma that Noah has, it is very sensitive and responsive to radiation. In a nutshell, with most doctors (John’s Hopkins, St Jude’s, etc) the protocol would be 3600 “rads” and chemotherapy to the “posterior fossa” (which means brain) and total spine. This is great for killing the cancer, but as one doctor explained that “at least he will be alive – let’s say he was supposed to be 6′ 4” – he will be 5′ 7″ and may be able to learn and think if we were lucky.”  We also explored the Chemo first method, but the founder of this protocol said that he would still do radiation after and his patients have a very high toxicity rate and are in the hospital approx. 61 days. (Very sick – we found the only advantage was 6 more months of age.) I soon learned that survival was a check box that meant alive whether a vegetable or not. Breathing was a check in the success column. Well, this is not acceptable for Dennis and I. As his parents, it is our job to protect his quality of life with our life. We also learned that there is a whole ‘lot of politics that goes along with this. Basically, all doctors want you to do a protocol “on study” and you are crossing a “picket line” if you do it “off study.” Short story… There is one Dr. in the country doing a study in Denver that uses much lower doses of radiation combined with chemo. It is a controversial study, but they have a very high rate of success so far with less long term brain damage. We met Dr. Amy Smith through Arnold Palmer and the short story (again) is her mentor is the one running the Denver study and he said that he will give it to her to run as our protocol even if it’s off study because it will be good for Noah. Whew! I guess in the medical community this is unheard of. Amy is about healing children, not becoming famous. I think this is an an answer to all of our prayers – leading us – his path – his will. Adding the right people and doctors to our lives. By the way, Amy is a strong Christian. Thank you Lord!

We will be home on Wednesday thru Thanksgiving. (We have SOOOOOO much to be thankful for!!!!) We will start our protocol on Nov. 30th for 6 weeks. We have a “wonderful” room in the Residence Inn Marriott I-75. He has radiation and chemo everyday except Sat. & Sun. (We are going to try to come home on the weekends if he can.) Landin will be at home with our Angels Jenna, Grandma (Donna – Denny’s Mom) and Zaza (Nancy – my Mommy). Doing everything “herself!!” She is so funny!

That’s what I know right now. Thank you all and please keep praying for 3 things, – Cancer removal, Brain and cognitive protection, and Noah’s spirit and strength. (Ok, it’s 5 things!

We love you all and we are praying for you. I know that you need strength as well. Have a wonderful and blessed Thanksgiving!

Love Amber & Dennis (and Noah)

I will post pictures soon!

Sorry for checking out – (Maryellen, I will call tomorrow.) On Friday evening, we came home. Isn’t that supposed to be a good thing? I find it very hard, because in my mind – home means well. Noah was sick Sat. & Sun., but is doing better and is in no pain. He has adjusted to the shunt. We spent the entire weekend locked in his room building the 4,000 piece Lego Death Star. (Pictures to come.) We didn’t come out once – good thing he has a connected bathroom.

Before we left the hospital, my dearest friend Paul Manutes (and Mark Drennen, an un-known friend) whispered into Jedi Mickey’s Ear that a HUGE Star Wars fan was in the hospital. Jedi Mickey  jumped into a his Landspeeder and came right over with a message from Darth Vader. He let him know that the “force is strong with him and he gave him his REAL “Lightsaver.” Amazing!!!! (Pictures to come.) Noah was really happy – real smiles!

By the end of this week, we will have a plan. I thank you all for the prayers, they are working!  Grandparents, Robin, Maryellen, Guillermo, Tracey, Claudio, Ivika, Karen, Heidi, Julie, Lynn, Marc & Donna, Angie, Marjean, the Rockness’, all the Moms, Joe & Ann, Doug, Andrew’s Angels, Our Employees, Our Clients – EVERYONE!!! Thank you, Thank you, Thank you!!!! I wish I could list everyone but please know that we are so thankful for all of your cards, letters, food, gifts – knowing that all of you are praying and having so much hope, gives us hope! We know God is still in control! We are very blessed!

I will update soon with the plan. With all my love – Amber