June 7, 2010

Written by | DATE_FORMAT_LC3

When we arrived there was a time change so we had to wait for our full schedule to get going. Nick and Christian went back to the Grizzle House, (Much like a hotel for temporary stays on campus at St. Jude) We were told this is where we will stay this week. While Baby Nicholas and I started our appointments.

While Baby Nicholas and I started our appointments, on our way to the Registration area, which by the way is where you start each day at St. Jude - they give you your full schedule and place a bracelet and your on your way. While standing there, I looked at all the children and just felt so sad .... all these families lined up everyday moving quickly from place to place trying to cure their children. I felt like I was in over my head, God where am I? I looked to my left and saw a child, he looked my son's age and had a shunt. I looked at the mom, who clearly looked stressed holding her coffee. I knew he was a brain tumor patient and I looked for that mom all day. We finished our triage visit and were sent to E-clinic - this is the clinic assigned to us since we are neuro-tumor. We met with our doctor, Dr. Karen Wright. She was extremely kind and thorough and went over what the week looked like. After 2 hours there, I walked the campus looking for that mom. I found her sitting at rehab clinic. We exchanged numbers and I was so eager to ask her what I was getting into. We were suppose to have an orientation, but it didn't happen so our first day was cut short.

May 22 - June 4, 2010

Written by | DATE_FORMAT_LC3

Where do I start .... If you read our story that led to this it will give you more perspective of what led to where we now are. If you have not I will ask you to go to Our Story and read that.

This is my son .... I never left his side, I promised him I would never leave the hospital without him. I kept that promise. I can barely look at this photo, it's surreal to look at him like this. This photo was taken after his surgery, I wanted to take it only to show him one day what he went through and how God was there with us the whole time.

What I will never forget is the day of the surgery, May 24, 2010 - it was a Monday and I was so exhausted from not sleeping that I literally passed out after I saw a man in stained scrubs walk towards us and ask if we were Nicholas George's family, he was only there to tell us that the surgery just started and to wait for updates. Fear got the worst of me ....I think it exhausted me to the point I passed out until 15 minutes before his 6 hour surgery was complete. (The Lion in the photo to the right is from Bridget (Post) Capasso and her family sent to the PICU - A Lion to give us courage to get through - Thank you so much Brig ... I love you thank you for thinking of my boy)

What I will tell you is that the day of my son's surgery - I will never forget the gratitude I had in my heart when I saw David Strange and his wife waiting in the lobby of the OR for me, they brought snacks and hugs and left ... I wept .... Pastor Steve from our church stayed the entire 6 hours plus and prayed with us and just sat there ... I was a complete mess .... all I remember is being on my knees begging God ... to please let them get the entire tumor out and to heal him ....

Dr. Holly Gilmer walked out and told us that she removed it all, it was sponge like and easy to remove. I hugged her - I knew God brought us to her .... there is no other explanation that we went to ER when we did and that God gave me the insight to know to not leave without knowing..... Baby Nicholas stayed incubated from Monday until late Tuesday because they wanted to do another MRI to make sure it was all removed. The MRI showed that she did an incredible job. God's hands administered through the surgery - no doubt.

Our surgeon told us it was malignant, so we knew it was cancer that night. Unknowing we thought a little chemo for clean up and that would be it. Little did we know our journey had not even begun. I was online all night researching Ependymoma the name the surgeon told us she believed the tumor was. The first mother I contacted ... Michelle Roderick (Erin's Momma) ... she was so kind .. she told me after a a four year battle, she just lost Erin her daughter, she told me to research PROTON (radiation) and she directed me to people still doing ok... fighting the fight.

(If these photos from PICU can't express our souls nothing will)

I was heartbroken .... I realized this wasn't even close to over ... she connected me to a few families ...Mei Lai Hippisley Coxe (Minty's Momma) was the next person I reached .... she also said I am not in a good place, but told me to find braintrust.org .... ependyparents group. I woke up to a fleet of emails because she sent my desperate information and plea to the list. The emails mimicked each other, Find Dr. Merchant ... Proton ... St. Jude ... about 13 emails and I remember being in the lobby of PICU, I called it my prayer couch where I went and just lost it begging God for help... I promise you I felt him bear hug me multiple times during the darkest hours I have ever lived - God was there. I spoke to numerous families fighting this disease --- I was on a mission God brought so many people into my world to help me know what to do next ....

During my research ...life stopped ... Baby Nicholas went into respiratory failure when they excubated him all I remember is the entire PICU staff being in the room .... I walk in the hall and threw my body against the wall and fell to the ground ... they stabilized him - but over the next few days this happened multiple times where I thought we were losing our son. Our Beaumont staff --- my PICU staff I couldn't be more grateful for ....the one I still love the most is Katie Smith ...., but I can't complain about any of them - they were so caring, kind and gentle with our boy. I remember reading monitors - that's all that mattered.

I researched and researched and spoke to over 15-20 families ... I am thankful for each conversation ... but one email changed it all. I was praying for God to give us our path to heal him .... and then I got the email from Tamiko (Colins Mom) that changed everything. She asked me if Nicholas was swallowing ... he was not ... she explained everything we were going through, however my doctor should have I told me what we were in for. She then sent me the protocol ... I say it like she sent me gold -- but she did ... it was "THE PROTOCOL" for Nicholas .... I remember reading it crying so hard knowing he fit the criteria for this new curative for his cancer and knowing no one in the country would touch him because he was too young. I remember walking into our PICU room and Nick sitting there and I said, "We are going to Memphis", He said no... I don't want to go to Memphis ... I said God just gave us our path .... we are going to Memphis and we need to pack.

We went back and forth on this and waited for pathology .... it was Memorial Day Weekend and it took 10 days to get path results. Once the doctors walked in .... they said that it was a grade III, which was the worst grade. I believe God told me that because I did my homework before they even entered the room. I had already requested his tumor sample, slides, CT's, MRI's and reports all be sent to St. Jude.

I believe now it was a blessing in disguise that we were in PICU so long - that gave them time to see if Nicholas needed a shunt. Because of his swallowing being and issue, it kept us there longer and he did not need a shunt. He failed 2 barium swallow tests. I will now never understand why ENT was not scheduled before we left to see or evaluate my son.

I remember seeing Dr. Holly Gilmer an saying, "If this was your child what would you do?", her response was -" I would do what you are doing and deal with cognitive issues later." I never second guessed it, they scheduled for us to get a second opinion from a member of COG, from U of M, Dr. Patricia Robertson and we were scheduled on June 8th and never made it because we were discharged from Beaumont on June 4th, packed to arrived at Memphis (St Jude) on June 7, 2010.