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Today is the 1st National Ependymoma Awareness Day - Lord please let there be cures found in 2012! Thank God for CERN for collerborating of our kids and adults with this diagnoses.
Sorry for the delay in posting. As I mentioned a few posts ago we were taking our first real vacation since Nicky's diagnoses. Before you hit play on the video to the left, this gameroom at the Contempory Hotel was an everynight stop and Nicky loved it and the simulation rides. We also met the truest Mullet Man around, notice Nick say is that for real lol. We went to Disney in peek season, not the smartest move but we did it anyway. It was 91-93 degrees and too hot to really enjoy the packed parks but we did our best to manage the heat and get on rides. We did the Animal Kingdom and then Epcot, followed by Universal Studios, and then Magic Kingdom that was so packed we bailed and Christian and I went back at 10pm for 2 nights to hit the rides while Nick and Nicky chilled out and watched movies back at the room. Nicky and I both managed to get sick, he had croup and I got strep throat so after 4 days we were in an emergency clinic off the Disney property for 4 1/2 hours just to have them diagnose us both with what I already told them we had. Almost seems silly to go to the doctors when you know whats wrong, like I should get a discount for doing their job and telling them what to prescribe us. Nicky loved the pool time and even with sunblock 50 he managed to get tan lines! That's a first for him. He hated the Characters lol, but loved to see new animals and would just stare at them pointing saying in the most excited tone, "Whats dat, Whats dat????" We were gone two full weeks and it felt like a lifetime once we got back home. When we got home Nick picked up Haley our pup and you would think she was new - Nicky was so excited to see her chasing her and calling her, "HayNay " On and Nicky got his first hair cut .... THANK YOU ANDREA for being so patient and kind and coming to our home to cut his hair - we love you ... !!!
Above is a photo of Nicky in the gameroom and the one to the right is him napping in the cabana poolside at the Disney pool.
The last few weeks have been very difficult for me in so many ways. The loss I feel for Kristin, Bree's Momma and her family pains me and in the midst of it all while traveling back home I somehow missed updates and posts on caringbridges and facebook and today while catching up on all my kids I love, I read Brody S. update and learned that my sweet little Arianna had scanned last week, the results were not good and her Lumbar Puncture showed that cancer cells are now present in her spinal fluid. Sometimes I wonder how this world actually exists simultaneously while the rest of the world is moving at a normal pace, unaware. I remember walking into St Jude with rose colored glasses, believing every child there would be treated and healed and my heart was an open door filled with love and compassion for each family I met. I look back at how naive I was, how that approach has brought so much pain and tears with it - but looking back I wouldn't change anything about it because I love them so very much and my life is richer from each child and each family - I hope they feel that way about us too. 
Yet some days the pain is so overwhelming and it crushs my energy and steals my "JOY", this is where I ask you to remember to not only pray for the children but for us all as families helping each other because the load is heavy and God carries us to carry each other. Ask God for strength, wisdom and guidance for us parents. However, some calls are heart stopping when a parent is choosing plots for burial, or making decisions on burial or cremation that seems like an injuctice is being dealt reality is so heavy that no parent should ever have to live through. Pray for Kristin's family, Pray for Brody S family scanning soon, pray for Avery C. scanning this upcoming week, pray for Arianna's family .... plain and simple .... please pray for these families. I know I am missing some - forgive me I will remember and add you ....
Bree's family had a balloon release for her celebration of life and though we could not be there - we released at 4pm with everyone else and wrote messages of love to our princess.
Please take a moment to listen to this song/video written for Arriana called "Dance Arianna".... its a wonderful song.
We will once again arrive at St Jude May 28-31. Nickys MRI no matter how many times I ask, keeps landing on a Wednesday and will be May 30, 2012 at 8am. He will have an ABR ( hearing test) the next day followed by a LP ( lumbar puncture). This is the first hearing test since he was radiated and so we need extra prayers that the doctors are wrong and that Nicky can still hear from his left ear. The doctors told us that his left ear was within the highest dose path and that it will be affected. Let's pray that they are wrong. Pray that he remains cancer free and that scans are NED and clear. Pray that he grows up healthy and strong never needing meds or treatment for anything ever again please! You know I will be posting before we leave and remind you all to pray harder, please dont read this and say you will - do it now please!
We will be walking for CURE SEARCH once again, it acutally lands on Nickys 3rd Birthday September 22,2012 - I am asking you now to mark your calendars for our little man and come out and walk for all the children. I know that the people that showed up last year, were so inspired that they will come back again - please dont miss this amazing event. I will say my husband and I were humbled at the people that did take time out of their very busy lives to walk with us. We are starting early asking for walkers and if you can not walk sign up as a virtual walker PLEASE ... or just donate - this is the only event we will ask you to donate to yearly for Nickys Birthday, for the kids and for CURES. We will be walking for all the children we have lost, those fighting and those that continue to be watched - praying for CURES!
http://www.curesearchwalk.org/southeastmi/nickybear22
I will leave you with this photo of Nicky and his Daddy .... he loves the water .... GOD BLESS YOU ALL .... THANK YOU FOR YOUR PRAYERS AND ALL THE SUPPORT ....
So let me tell you about our latest trip to St Jude. Nick and I have our trade offs, this photo is one of them. Daddy handles Nicky on the flights and Momma handles all the medical work and sedations and appointments. Even though Nicky is cuddled up in his Daddies arms, that's only a portion of the flight. Nicks got witty humor and it was pretty comical after the flight in Memphis he said," Anyone behind us would think I was wrestling an alligator!" No doubt when Nicky gets fussy and has to be restained, it's quite a task that lasts 30-45 minutes at times. Especially because of his ear infection.
Into the same room we had in August. Upon arriving after lack of sleep and stress over not being sure we would make it to Memphis, I got sick .... it was a bummer because I really couldn't be around anyone and so many families were there that we know. I couldn't chance getting any of the kids sick because many of them are in treatment, whether it is chemo or radiation, their counts are low so I didn't get to spend much time with anyone.
What you didn't know about the MRI ... well we had a clearance visit and when we got there for results, there were none to have because the systems to view them were down. it was stressful, we actually went back and packed and went back to the hospital to wait and they told us not to and to go and that Dr. Wright would call us with the results. I hate that ... lol ... I did not want to leave and head to an airport without knowing. Then Nick put his phone in my hand .... there was a message from Dr. Wright while we walked out of the hospital the phone did not ring and she left a message saying all looks good and we could come back if he had 5 minutes if we wanted to see ... I thought he was joking .... It made my day and I was feeling better, I mean hearing the MRI is NED is a breath of AMAZING energy .... Then the unexpected.... we got to the airport and had a 5 hour delay due to equipment in the plane, a panel not staying in place. We didn't get home until 3am and we were so tired. Nicky slept during our normal flight time and was up the entire way back. AGAIN Daddy saved the day handling him. With lack of sleep we both got sicker and Nicky seems to be doing better. We got an email yesterday from Dr. Wright saying Nickys LP (lumbar puncture) was negative for cancer cells. Just another BEAUTIFUL relief.
As I told you I would be updating on Bree H. she had surgery today and she out of recovery and awake, I ask that you continue to pray. The surgeon believes he removed it all. Tomorrow she will have an MRI to confirm this. Please pray her recovery is smooth and deficit free! I also ask you to pray that her pathology remains desmoplastic instead of a more aggressive form of Medulloblastoma. Better yet - let this just be benign from treatment.
So, this is the first time I really feel like if you have it - please, please give it. It doesn't matter if its only $5.00, or $10.00 I am listing Gamma's email that has a paypal account to it, any amount you can give to help them right now will work. You can even buy a Bree t-shirt if you want, but mainly its not about the shirts - its about helping this family be able to sustain having a home to go back to in 4 months when treatment is done. If someone deserves a contribution - it is this family. My Nicky is rocking a Bree -T Shirt while we pray that she will be healed and restored from surgery and the treatment process.This is the email address for paypal.