Updates
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What a week! I have to go backwards because as you probably already know I wanted to tell everyone about NickyBears scans and that they are stable. So let's start with Sunday - We missed our first flight going to New York for Celebrity Apprentice's season finale'. I was in tears and so stressed because it was becoming increasingly apparent that Baby Nicholas' stranger anxiety was times ten in public. I called the St Jude rep and they got us on the next flight into New York. what a complete mess trying to juggle a really traumatized child and strollers and bags times 2 because we had to have toys, diapers and food for an entire week at Jude. We finally arrived and he did not sleep so I was hoping to get ready while he napped but I had asked Kim (Christian S.'s Momma and her Momma ((Momma T)) to come see us. While it was great to see them, he slept and showed me just the tip of how fussy he was going to be with new people. It really stressed me out because we lived in Jacksonville with them and we visited together the whole time we were there and Nicholas was fine with them, but did not remember them: ( . This goes to show what 6 months of isolation on oral chemo can do. I do not regret being so protective and cautious with him though because we did remain without going inpatient the entire time! We also got a visit from Mei Lai (Minty's Momma) she played a specific role into getting into the group (ependyparents) of parents that dealt with the same diagnoses as Baby Nicholas and that led me to Tamiko, Colin's T.'s Momma that gave me our protocol. So It was worth the rush and fuss to get to hug one of the most amazing women that helped me while she herself had a daughter battling this disease and treatment was not working. Some of you remember me mentioning her and when she lost Minty the day after her 1st birthday..
As you all know, Mr. John Rich invited Nicky and I out there and in my heart I thought there must be a reason why so I felt like I needed to do everything humanly possible to help aid him using the video to honor the babies of the brain tumor protocol, even if I had to fly to New York on my son's diagnoses date. I was mostly sad that we couldn't go inside because the loud crowd was upsetting Nicholas. We sat in the hall to watch it. A short story while I stood outside of the theater moments before John Rich won .... 3 NBC workers were sitting outside with me and my son and saw Marlee's footage - I must say it was moving .... one man said wow - how can she not win right? - then shouts to me with my back to him and says what do you think? I said, " Well I am a bit bias since I am a St Jude Mother .... I said I would love to be dealing with a hearing deficit where all i needed to do was teach my son to sign, (most people don't know, I speak sign language because I am hard of hearing in my left ear and was told I would probably lose my hearing completely, I NEVER DID and hear just fine) but instead my son is fighting a disease that has NO CURE and I have no peace with what the future may bring ..... I said tonight a year ago today, May 22, 2010 my son was diagnosed and my whole life changed ... and now I am sitting outside a theater with so much hope in my heart for the 41 families that I have releases signed for that the video would honor their babies. I struggled with coming and then never got a chance to even thank him personally for writing the song. I told the man - St Jude gives away hearing aids to any child fighting cancer from anywhere in the world that is deaf or has hearing loss regardless of insurance - most children receiving chemo or radiation for a brain tumor have hearing deficits so while both charities are simply amazing .... we need cures more than anything!
I was sad NBC did allow the footage from the video to play - but mostly I was sad the words of the song were modified from a song written for St Jude and even more so I was so sad that while a whole choir was on stage signing not one of the 5 St Jude families were shown ( I for obvious reasons could not be), but I felt guilty that charity dollars were wasted to bring 5 families there and not one of the children were shown on stage and John Rich WON! Even little doll Colin stuck it out with his cowboy hat on and he was so so tired, bless his heart.
One of our founding fathers (Abraham Lincoln) once said "No man stands so tall as when he stoops to help a child", John Rich, you are a giant! Congratulations! We wanted to thank him in person, but that never happened. So off to Memphis we went. The flight was stressful, we got into Jude mid day and so I strolled Nicky over ... it was quiet and the halls echoed memories of the people I love and little faces I have lost during the last year. It was an emotional walk filled with sadness and tears and pain. I could vividly see moments replay in different areas of the hospital. Then I went to see Sofia C. her Momma inpatient and she said they were being sent home on hospice.... I was just so broken leaving her room.
The next morning Tuesday, we went to the Kay Cafe and I fed Nicky his normal eggs, toast and milk .... while sitting there I heard a blazing reminder ..... I heard the sound of a feeding pump - the same pump Nicky had.... I put my head down thanking God that I can feed my son, because there were so many times filling bags with formula I never knew if he would ever be able to eat again. That sound brought back so many memories of waking up to those beeping sounds for 4 months. We tried to get through appointments but everything was stressful because he would just scream when he saw new faces and would not comply. We realize this is our biggest obstacle to overcome! Have I mentioned how amazing God is? This day marked a year since the cancer was removed from my precious boy!
So Wednesday .... you already know the details of the run around of the MRI day we had from below (LOOK I ADDED THE PHOTOS) .... it was a crazy emotional day, if not see below last post. Then Thursday came and he had his ABR (hearing test) I knew that nothing had changed because I can't sneak out of a room without him hearing me. The results came back and they were stable and actually some improvement with the tubes we had placed in March. So then off to eclinic to see our Doctor. She had us escorted back to the review room for MRI's this made my heart stop.... but she said I need to show you this because this report would scare you because you understand words most parents don't. I was grateful she showed us because she was right - I do understand this so much more than most do. That report would have given me heart failure! So, she placed his scans back to back .... then she placed the one with the tumor and the one we just had next to each other .... she said this makes you appreciate the last year of everything you went through doesn't it! YES INDEED.... it was overwhelming to see the difference ....
We went to Med room for our monthly infusion of pentamidine and when we finished the room was filled with balloons, our doctor and our nurses singing "Our patients have the cutest S.M.I.L.E Our patents have the sweetest H.E.A.R.T. O, we love to see you everyday, But now it's time we get to say, PACK YOUR BAGS GET OUT THE DOOR, YOU DONT NEED CHEMO ANYMORE"..... we were officially done! We come home as a family, to celebrate are small victories in this world of cancer and we are so grateful for the family and friends that really allowed your hearts to understand this journey ... a year ago this weekend was after his surgery and our son was coding (which means code blue - possibly dying) and having upper respiratory failure, he couldn't breathe on his own - I remember throwing my body against the wall and falling to the ground crying while all the PICU staff rushed to his aid. We didn't know if he would make it after surgery watching monitors beep ....I remember a phone call to my little brother and my heart stopped when I heard him at a party on a boat with loud music while my world just totally stopped.... it was then in that moment that I realized - some people get it and some people don't .... some people followed every journal entry and some people read none. Some left messages even if I couldn't return them, I knew you were with me. Days when I could barely get through, some of you prayed with me or for me. I would get random texts from friends and I would tell them to read this site and they never did ... some whom were distant friends, some not really friends at all .... but they loved us and prayed so hard when we needed it most ... you know who you are - we communicated through it all -YOU WERE THERE - TRULY THERE and we love you all so much for your support .... in this year real friends stepped up, people we thought would be there weren't .... we learned a lot ... we learned what was the most important and what truly does not matter .... please never stop praying - as I have said before there is no cure for what my son and many many babies and children endure and our doctor said the pharmaceutical companies can not make enough off of childhood cancers so no one funds new drugs and some that work are taken off the market because no profit is made from them. Do not be confused that American Cancer Society DOES NOT help pediatric cancer truly .... they just don't give enough ... please please when you have it donate to St Judes. It on this site to your right ....
GOD BLESS YOU ALL .... please pray for Baby Nicholas ... pray for all the kids ... pray for Sofia C. and Thanking God .for Luca P.'s clean scans and please pray for Kylie O. and Ashlan B. upcoming scans. PRAY FOR CURES .... thank you to everyone that changed their profile pics for this month - it mattered to us and it meant you helped create awareness .... thank you... from here on out - I will be posting probably bi-monthly or monthly .... or if there is a reason .... but not weekly as treatment has finished !!!!!
Dear Lord .... THANK YOU FOR ALLOWING US TO FINISH TREATMENT ... as Nickys Momma all I wanted was to know I did ALL I could and the rest I put in your PERFECT Hands .... Your will Lord .... and I pray and pray and pray your will is to let my son live a long life .... please Father .... bring CURES ... gift researchers ... PLEASE .... thank you for healing our son and continuing to heal him ....
Wow where do I start.... first the important news .... he had his MRI scheduled at 8:30am ... prep at 7:15am - we were told yesterday that our time changed to late noon and it of course was upsetting trying to figure out how to keep him happy without eating all day. The scheduler asked me to stop by to pick up a new schedule. I headed over and saw another family and a child in a wheel chair that clearly was pumped with massive steriods, so swollen it was heartbreaking. I asked the mother if she was there to get a new MRI schedule, she said yes. I asked what time, she said 7:15am. I responded you took my time slot, but thats totally ok. I felt so humbled looking at this little boy in such a poor condition. She said she was so sorry, I know its hard not to eat that long for a baby. I responded, please don't apologize it ok, he can wait. I then asked her sons diagnoses. When she said DIPG my heart sank and I realized then that at Jude when a schedule changes, there is a very good reason for it. I will never again question a schedule change. The severity of his condition was heartbreaking. So a few hours later I got a call from the schedulers that told me that we had our initial time back and that the emergency scan was canceled because the child was too sick to scan. While I as glad to take that spot back, I didnt want it knowing another child was so very ill.
A few minutes later my phone rang and I had Nick answer it since I was maxed out! She said it was a terrible day and that everything was NED (NO EVIDENCE OF DISEASE) That means clear !!!! CSF (Cranial Spinal Fluid) Clear of cancer cells. Long breath .......she also had no clue the schedulers were telling us to wait, she felt bad about it but she didn't know. As we walk into the Grizzle House a tornado watch sent us all into the stair wells! This is becoming a new habit while we visit Memphis. I will report back with the rest of the details later .... but I just wanted to tell you the 8 hour wait really stunk and I know people wait days ... we are just so spoiled at Jude and our Doctor. Thank you all for your prayers .... you have no idea how grateful we are that we FINALLY get to come home no more chemo or meds and just enjoy our family for the first time in a year!!!!! We can't wait to be somewhat normal -though our normal is very different we are embracing and new normal and praying for scans to remain cancer free always. To the ones that read our updates and truly have been with us through this whole journey - THANK YOU SO MUCH you have touched our hearts and we know who you are .... We love you ...
Our week off from chemo was great, and with that came our weekly labs ANC 1200 hgb (red blood) 10.8 and platelets 155. We had our monthly hospital infusions a Rose Cancer Center at Beaumont Hospital. We also had our monthly pediatric appointment. Nothing to report thank God! Thursday our fedex package came holding in this box our last round, cycle 6 of oral chemo that was started Saturday May 28, 2011. Mixed emotions starring at that box .... we are 28 days away from NO MO CHEMO!!! That's slang used at St Jude with the kids. Its exciting to be done, but its scary to feel like we are doing nothing soon.
The first week on this wasn't too bad, and I apologize for not updating sooner. This is a stressful time of year for me, a year ago is when Nicholas starting showing symptoms and I seem to find myself replaying everything leading up to May 22, his diagnoses date. It's emotional. To top it off, out of all the holidays of the year ... Mother's Day and the idea of so many AMAZING Mothers I have met, loved and call my friends lost their children this year to cancer. Not only did some lose a child, some lost their only child. I can't help but mourn for them, I wish I could just focus on me... but God just created me to wear my heart on my sleeve and I can't help but hurt for them.
Baby Nicholas has finally gained some solid weight and hes eating great. He loves it outside so much and chasing the bubble maker machine daddy totes around the lawn.
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