We have had quite a crazy few months and tonight I feel my heart is so heavy I might burst.  Though today marks that Nicky is 28 months old,  I think its time to re-visit the kids from my journey and though this is not a typical Nickybear update - it is what I believe we all need to understand is that cancer is vicious and plays by absolutely no rules. I fall apart at the thought of having to go through this all over again, yet too many of my friends and their babies are back at St Jude.

I will start by updating you on each child that needs prayers and how to pray for them, this seems easiest.

I will start with them in the order of the video so you can see how they have grown, the ones fighting so hard AGAIN, sometimes AGAIN & AGAIN and the ones that have passed away ... and a few updates among our Angels too.

 

1. Ryan D. - is N.E.D. ( no evidience of disease) and in school and she always has a little bit of her "Lia's" heart.... that's what she calls me. Her next scan is Feb 22,2012
2. Ashlan B. (showed in the photo to the left)  was diagnosed with astrocytoma - STILL fighting her disease and scans Feb 22, 2012 next scan we want NED. Her Momma wrote:::

http://www.caringbridge.org/visit/ashlanbertolini

When you look at Ashlan you see a beautiful, spirited angelic child...I often look and think how could cancer have ever touched something so pure.  It's baffling!

 

I can't agree more and we are praying!!!

 

3. Megan P. is N.E.D. please pray for her next scan Feb 1, 2012
4. Cora M. N.E.D and her next scan is Feb 10, 2012
5. Bree H. scanned this past week ... this is the reason that I decided to update all of the kids .... This is Bree today below with her sister Zaya.

Now Bree looks amazing, but but scan said that's simply not true.  I won't accept that nor should you! Bree was just a baby 12 months old with desmoplastic medulloblastoma when I met the family and heard faintly ... "Welcome to St Jude" ... I was awaiting a clinic appointment and my heart sunk.   I quickly turned around and told her I was so sorry they were there... I found them later that day and thought -  I am leaving for radiation soon, Christy, Ryken's Momma would be a good pair for her .. I thought a buddy support system was great ... why ??? Because I found my best friend, my closer than blood sister Nicole (Baby Wade's Momma) this way ... still today ... I love her so much and I carry Baby Wade in my heart.  I thought all families should have someone to match up to during this ride.

So Wednesday night I got a private text from Bree's Momma... Thursday confirmed the phone call from Wednesday.  I HATE CANCER!!!! So they were told this from their website:::http://www.caringbridge.org/visit/breehaga

New enhancement(highlighting), new small foci of restricted diffusion raises concerns for the developement of recurrent tumor and/or leptomeningeal metastatic disease.

I am numb, this word " leptomeningeal" is the most feared word for a baby under the age of 3, there is no treatment for it .... like my dear friend said ...leptomeningeal is like a doughnut ... dipped in sugar, how do you take the sugar off ??? You can't ... thats painful ... the visual of someone shaking powder over a babies brain and not being able to treat it hurts to my core.

So, pray with me these reports can and have been wrong before .... let it be so so very wrong now!

6. Nathan B. is N.E.D. and will be scanning this week Jan 24-27 pray for NED.
7.Colin T. is N.E.D. and will be scanning at the end of March pray for NED.
8.Abigail S. is N.E.D.not sure when she scans next but she did welcome a baby brother in September named Elijah Thomas!
9. Ian M.  is N.E.D.will scan the first week of March pray for N.E.D. they also are welcoming another baby boy to their family in a few months.

10. Riley B. ( to the left) another reason I post tonight .... just recently diagnosed with pituitary tumor .... not sure what it is - BUT PRAY! His Momma hasn't updated the caringbridge yet.

http://www.caringbridge.org/visit/babybrilliant

 Please just keep praying for him ... he was 9 weeks old at diagnoses for glioblastoma ... this seems like a secondary issue from treamtent and he needs us to pray!

Its hard for me to see these children as a picture of health and then a new scan indicates a completely different picture, I feel the parents caught off gaurd yet we all know its possible. I need you to read this post and pray along the way ...

11. Isiash P. is N.E.D and  just finished HBOT treatment for necrosis from radiation. What that means is that the treatment was not only killing cancer but healthy brain tissue and for them to stop it, this 6 week therapy helped him greatly.  This is not the case always and I am so grateful that this worked for him - Hyberbaric Oxygen Therapy.

12. Luca P. (Photo below) was diagnosed as a classic Medulloblastoma and had a second surgery to remove his cancer and then went to MD Anderson to have full cranial and spinal Proton radiation done. Words from his last scan::: http://www.carepages.com/carepages/LucaPaonessa

Thank you all for your continued support and prayers. Today we received good news. The PET scan was negative and MRI showed no new lesions and the "spot" was stable. Not sure what the "spot" is but it doesn't appear to be tumor. We are thankful beyond words. Also, spinal fluid was negative. So, no surgery for Luca and a blessed Christmas. Luca will continue on oral chemotherapy and we will scan again in 2-3 months.
Sending each of you a big hug from Luca. I BELIEVE.

We are all BELIEVING right with you! He Scans Feb 1-2, 2012 at Jude Pray they hear N.E.D.

13. Tyler B. is N.E.D and scans Feb 22, 2012 pray for NED
14. Seth B. is N.E.D. and scans Feb 9, 2012 Pray for NED
15. My Nicky is N.E.D. .... and the 15th child to go to Proton in Jacksonville .... next scan Feb 23, 2012 Pray for NED
16. Yeeshai G. is N.E.D. and scans are coming up for him in Feb sometime.
17. Brody S. in the picture to your right was diagnosed with a PNET tumor, just moved back into Target House to start chemo and already completed full crainal and spinal radiation. He needs our prayers, I will take a quote from his website his Momma wrote:::

http://www.caringbridge.org/visit/brodythetankengine

Oh and yes the MRI results! I was hoping the Doc would have seen the MRI instead of just the report, but this has not happened yet. So we discussed the report briefly with our NP. The results showed an additional “brighter” spot adjacent to a previous spot. It has not been ruled out to be a vessel. A 2nd MRI will need to rule this in or out. Another MRI will not be for 2 months! I’ve tried not to let the results weigh to heavily. It is just crucial that his cancer respond to this chemo combination. I am trying not to think of our next scan, but I must say the anxiety is looming. What a huge scan it will be. Will the chemo be working or not? Praying….

So to conclude on Brody, Pray for his parents and for Brody that this chemo is working and that with the radiation this is his cure!

18. Lain T. I believe he is N.E.D. and I am waiting for a confirmation from his daddy.
19. Christian S. is N.E.D. and he welcomed his new baby sister Katie back is August. He scans March 7 I believe.
20. Sofia C. diagnosed at 7 months old with ATRT made it trhrough chemo and Proton, she earned her wings at 9:10am on June 22,2011. Prayers for her family ... her family also welcomed a new baby girl into their worlds Bibi Dec 12, 2011 
21. Aiden L. last scan in Nov was N.E.D. and is a big brother to his sister Layton Brooke
22. Angel C. is N.E.D. and has a scan in March
23.Kelly C. is N.E.D. and just turned 3 .. she should be scanning in March
24. Kylie O. (in the photo below) had tumor progression back in Nov at her scan and is now been placed on the ICE protocol of chemos for the next 6 months. Please pray the chemos work for her. Her tumor type is 1 of a kind in the world, a primary epithelial and so knowing how to treat it has been a difficult task for the doctors.

25. Peyton A. ( in the photo below) was diagnosed with Desmoplastic Medulloblastoma, his last scan revealed a tumor the size of a peanut. He is scheduled for surgery this is what his family wrote on his update:::

http://www.caringbridge.org/visit/peytonarmstrong

We knew there was a 10% chance that it could come back but we were praying he would continue to be cancer free. Peytons tumor is in the same place it was in the beginning, which is a blessing as we do not want the tumor spreading to new areas. The tumor is the size of a peanut and will be removed on Monday. The doctors are very confident that they will be able to remove all of the tumor again. We know we have the best doctors surrounding Peyton and that he is in the best care. After the surgery he will spend a little time recovering from the surgery and then will undergo radiation in Memphis.

Please pray for Peyton as he is very aware that he will be back at St Judes, the doctors and nurses that will be taking care of him, and safe travels for us all.

So I ask you again with this relapse that this treatment path and surgery are his CURE!!!

26. Sidney H. is N.E.D. and is doing well.
27. Sophia W. is N.E.D. and is doing well and just had her port removed Dec 2.
28. Rachel D. is N.E.D. and doing well ...
29. Avery C. (to the left)  hit a bump in the road once again this past October and she is now on a new protocol in her treating home hospital, she just scanned there and is STABLE thank you Lord ... we want to see N.E.D. please pray this treatment continues to work for her. She will also be scanning again at Jude Jan 29 - pray for even more healing ...

30. Belle M.  ( photo below) was diagnosed with Choroid Plexus Carcinoma and has been finishing up her chemo after doing full radiation. She scans in the next 2 days, please pray she is STABLE or better yet ... N.E.D.written from her website::

http://www.caringbridge.org/visit/bellemitchell

Belle is feeling good.  We are on our way to Memphis this afternoon.  Please pray for a safe, uneventful and on-time flight!  Thanks for your prayers.

Miss Belle we are praying right with you ...

31. Haley H. (in photo to the right) after her relapse of Anaplastic Medulloblastoma and finishing full radiation I am happy to read this post from her Momma on Dec 13. ::::::::::

http://www.caringbridge.org/visit/haleyhines

Today is a special day because we are celebrating a clean report for Haley's MRI and Spinal Tap.  This means she is presently tumor-free and kicking cancer's butt!  We aren't allowed to call this stage "remission" or even "cancer-free", but we can say that no tumors or cancerous cells appear to be in Haley's system at this present time.  (Tom asked the doctor so that we would be "politically correct" when speaking about Haley's illness.)

Haley we are praying you have only N.E.D. scans from here on out.

32. Ehrren G. (photo below) has had a difficult road with Anaplastic Ependymoma and is once again at St jude for radiation. His momma counts down and they only have 12 treatments left!

http://www.caringbridge.org/visit/Ehrrengillespie/

We are counting down with you!!!!

And for all the ones we have lost, please pray for each family .... the strength to endure, know that your children are NEVER forgotten and each face is part of anyones heart that watches this video and shares it too.  There were a few faces missing, John B. lost his battle with ATRT earning his wings. Lanie W. also passed away http://www.caringbridge.org/visit/laniewatkins and earned her wings and lost her fight against Medulloblastoma. There are new families I had added that were not in the video and they are all in treatment still and some have finished - so please pray for the new families too. Willa Rose F., Ronan V., are both headed to Proton and Maisie W. is scanning Feb. 1-2  she is NED and we pray it stays NED. Some don't even have websites but these are the ones that do so you can always find them on the friends we follow tab under SJYC07. We also have Hallie C. that is finishing her round 4 of chemo then a scan to follow in 3 weeks pray for NED.

In our Angels .... Baby Wade is a big Brother, to a little brother named Jackson. Baby Mason is a big brother to a sister named Nia, Ana Sofia C. is a big sister to a baby girl named Bibi and sweet Ryken is a big brother to a baby girl on the way the first week of March who will be named Griffin. We welcome all the new little ones and pray for their health always. I am certain there are many more new additions I am not aware of or might miss on this update. But this update was long over due, I showed the ones that are still fighting so you can see the faces of the babies that I am asking you to pray for.

Lastly, we lost a face many St Jude families know - Clinton Miliken we was diagnosed with Medulloblastoma right before his 5th birthday .... He earned his wings on Jan 19,2012. This is him below .... PLEASE PRAY ... I know you can't remember each child ... but pick one or two and really pray for them .... these are the faces I need you all to remember right now.His Momma wrote this on facebook:

Posted from Kim Mabry Milliken:
Today at 2:46 while cuddled in my arms, my sweet Clinton Milliken left this earth and let his heart fly away to heaven.

As my friend Red said, " I hope gods ready when he brings that angel home cause he doesn't play the harp he bangs the drums and wears fireman rain boots while he does it."

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