Updates

feb12flySo 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.

So we arrived and settled into Grizzle House. 4006Into 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.

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Our first stop was med room, we got there at 6:45pm and Nick walked us over to the hospital because I just didn't want to walk alone. Nicky was a handful, port access and height and weight are a challenge and the labs and vitals too. In and out .... we expected his counts to be low since he has been sick and they were, his ANC was 1200. That just means we have to still be so careful with him being around germs and bacteria.

I did get to see Ryan D. and her Momma - her scan Monday was NED. We saw Tyler B. and his Momma and his scan Wed was NED, We saw Ashlan B. and he family and she remains STABLE, which is wonderful news. We saw Avery C. and her Daddy and Brody S. and his Momma, I saw Peyton A. dancing in his Jammies at Kay Cafe, they are there for Treatment. We saw Arianna R. and her family on our plane down they had a connection flight. We did not get to see Bree H. I was so worried that she may get sick from us and she has surgery on Monday so please pray.We also got to meet serveral new families.

feb12mri2What 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.

Every trip to St Jude is humblimg, Nick and I feel truly blessed when we see so many children facing so many difficulties and challenges. It reminds us of where we were in the beginning of this and how far we have come. This journey isn't an easy one and it will always be our new normal. I'm taking a few steps back from all this to enjoy my family right now. I will update on Bree for you all, but after that ... we are just going to enjoy this blessing of health, love and family. We are even heading to Disney for a week. We cant wait to see how Nicky reacts this time since he's the same age Christian was his first time there. I want to thank you all for praying so hard for our NickyBear. Your prayers carry us through the storms of tests that hold much weight. God's Hands are truly ALL OVER IT! It's just a break from all of this, while I advocate .... we just need some down time to be a family right now and enjoy all of God's blessings.

Below I will leave you with one last photo, it was at the airport when we left, notice Nickys coverse Shoes ... thank you Auntie Nicole. They are made by a company name Peaches Neet Feet and they create these one of a kind shoes for children fighting cancer. You can donate to the company to provide more shoes or order them for a child you might know, but they are so special and personal.This is their site: http://www.peachsneetfeet.blogspot.com/  or on facebook to see all the shoes ...http://www.facebook.com/PeachsNeetFeet She is so inpiring .... may God Bless this company....

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All I can say is MRI is NED ( no evidence of disease) all clear!!! Praising our Heavenly Fathers Holy Name!!!! Thank you for you prayers, I leave you with one last request today - please pray for Bree H. She will have surgery Monday, please pray for strength for her family as they make difficult treatment choices. God Bless!

Ok quick update - as you know Nickys had a cold last week. We didn't know if we should go because they won't sedate him if he's congested etc. So we went to his pediatrics this morning and she gave us the green light and also caught that he has an ear infection in his right ear. So pray for HEALING ... Pray for a safe trip to Memphis we leave at 1pm to head to the airport. We didn't pack - so we are rushing now. Pray for a smooth day tomorrow and a clear / clean MRI. Thank you LORD for letting him heal over night so that we don't have to reschedule!!! Thank you for your prayers ... see - they do work!

GOD BLESS YOU ALL .... I will update as soon as I can .... late tomorrow.

Anna Rose earned her wings on Feb 19, 2012 at age 2 she fought so hard for over a year from a brain tumor called ATRT.

If you can not see the video click the link below

In Loving Memory of Anna Rose

This is one of the first times I sat in front of a computer key board and just starred .... All day trying to compose myself, to look uneffected.... I was shocked at the responses from people I love .... the first one I will never forget .... it was such a selfish comment. I won't name names .... they know who they are, the first was a call that caught me off guard while I was visibly in complete shock after reading post from Anna Rose's Daddy that she earned her wings early Sunday,  2/19/2012. I knew it was happening, but even when I know the pain is no less. Did I pray differently because I knew it wasn't good - "NO!!!!" I wouldn't want someone to pray differently for my son .... so after the call when they clearly didn't take notice to my upset voice, because they were too about themselves to notice I was upset.... I text them and said, sorry you caught me off guard ... Anna Rose earned her wings this morning. Their response ::: "Yup I'm sure lots of people earned their wings today ( smiliey face) and it happens every day. People we don't even know die for our freedom! God Bless them all. Love have a Blessed Day.

feb2012newI honestly couldn't believe what I just read .... this is someone that is close in my personal camp, someone that was not there when I needed them most - but told me they regreted it. My response ::: People that die for our freedom had a choice to be HEROS - these babies have no choice :(

I am grateful for my armed forces, for fire fighters, cops and the people that choose to get on the front line for us. I mean no disrespect, but to say that to me - a mother of a child who didn't enroll in a superhero voyage, I never got the choice to put my son through hell with chemo and radiation .... was just a horrible, SELFISH comment on their part, and as I keep telling that person they have no clue .... they made it clear they have no clue.

The second blow came again from someone close," there will always be a child dying ... another doing bad" .... NOT TO ME .... these children I love are personal ----- they each have a part of my heart .... I love them and I feel so sorry for the ignorance of others and pray that God allows them to learn through us still because I would never want them to endure this way of life. I am grateful for each child that the Lord has brought into my path so I ask for you to pray for Anna Roses Family and Friends that miss her and will continue to miss her all the days of their life. 

Please Pray for Brees LP today to be clear of cancer cells - Pray for our Nickys cold to go away so we can get this MRI over with and with CLEAN SCANS... I wanted to Share Anna Rose with you .... this is something I will never get use to, I hope and pray you don't either .... pray for CURES ....

TKendal3o the left is One of NickyBears finest Guardian Angels, Kendal Lividini ... Kendal is my husbands dear friends daughter that lost her fight to AML Luekemia Jan 7, 2011. We know that Kendal is watching over Nicky because she prayed her heart out for him, despite her own illness. Kendal, if you can see this ... we miss you and are so grateful for the love you had for a little boy in Memphis just beginning this journey. We believe you will always be watching over him.... I also placed the Orange ribbon on your photo, because this month, February is Luekemia awareness month.  May God bring CURES.

I will leave you with this photo taken yesterday of Nicky ... please be mindful of the things you say to others. Be Kind to every one Always ... God Bless... and thank you for your continued support and prayers.

nickybear2012new2

"Cancer" - what comes flooding into your mind when you hear the word Cancer? Most of us can sadly apply this word to someone we know or love, regardless of the outcome. One word, Cancer - numbing, crippling, anxiety, fear, depair, hopeless, helpless, pain, torture, heart gripping, grief and many many more.

feb12joyHowever it is through true Faith in the Lord those words turn into hope, determination and you learn to lean on God completely. Jessica Joy Rees a 9 year old touched the world in her 10 month battle against an inoperable brain tumor. She was the child of a pastor from Saddle Back Church in CA. She told the world "NEVER EVER GIVE UP" , she earned her angel wings on Jan 5, 2012. The letters N.E.G.U. standing for her phrase "NEVER EVER GIVE UP" has become her legacy she has left on our world. While sick, Jess created JOY JARS and filled them with treats and toys for kids fighting cancer. This past week we recieved a JOY JAR from NEGU Foundation. I couldn't help but cry when I saw this beautiful colorful kid like box arrive and saw Jessica's photo on it. Through so much sadness there is so much good that rises from people like Jessica.

This was a difficult week - I have been asking you all to pray for many children and I STILL ask you to continue to .... I have had a hard time writing a post lately, there's just too much sadness in my heart over children I have grown to love. Last week you all saw me post on facebook that Anna Rose was placed on Hospice and her health is rapidly declining.  As if that alone wasn't hard enough, there is a nationwide shortage of IV morphine to keep their daughter comfortable. Each post gets harder and harder to read knowing she is suffering. There is nothing to describe the pain in my heart reading her Daddies words lately.   This past Friday also Bree H. rescanned - it only brought a confimation that the cancer has returned.  I can not tell you how helpless I feel when I have a parent, in this case Kris call me with a tear filled, choked up voice say, "I can't imagine living without her".  There is NOTHING worse than the thought of a life without your child that has been through so much temporary torture in order for them to be cured - only to be told its back. It is unclear until Monday when they perform an LP ( lumbar puncture ) what  possible options will be. I ask you to pray that her CSF ( cranial spinal fluid is cancer free ), that a safe surgery can be preformed, allowing her to still be able to beat this disease.

feb12

Now to update you on my Nickybear. He's such a precious child! He loves the snow though we have not had much that sticks. As you may already know we are due to fly in to St Jude Wednesday. February 22,2012 and he will have his port accessed and an assessment done for his MRI on the 23rd.  All winter long we have stayed home to keep him safe and as timing will have it, Christian got sick about two weeks ago - then the following week Nick got sick. Nick didn't call the doctor when he should have and well ... he only got sicker. As you can probably guess even though I did all I could to keep him away from his Daddy, Nicky started up with a coup voice on Tuesday night it is now saturday and he sounds so congested coughing. So please pray this cold goes away! Not much we can do but give him benedryl to dry him up a bit but boy getting him to take any meds is close to impossible. So .... we will raise no red flags unless he's still sounding this bad by Monday afternoon.  Last year, his Feb scan he was fighting a cold then too and the day before the MRI - he was fine thank God. Please pray it goes away now so we are not stressed out wondering if he can get scanned. We also ask that you pray that his scan results are cancer free.

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feb12needleWe take a ton of naps together and I am just so grateful to cuddle with this precious boy of mine. He has finally added some new words to his vocabulary - LOL of course Elmo is the word this week, no shocker there since he loves Elmo. He's such a boy too, Cars everywhere and we repeat watching the movie Cars non-stop from his room to the living room there is a trail of Cars everywhere. This past month I decided I was done waiting at Rose Cancer Center for port flushes when I knew I was completely capable of it myself. Some of you saw the post on Facebook but this is the needle I have to place in his port in his chest to flush monthly. I promise you a cancer mom is truly an un-certified nurse.  Its amazing all I have had to manage and learn over night during this journey.

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feb12smileHe is just a joy and so interactive, he loves to play with his toys and now he imitates what the characters do from Toy Story.  It's just amazing how much he has grown in the last few months. He LOVES to Dance and LOVES to slap and twirl around till he falls on his butt. I am just so blessed God gave this child to Nick and I! He loves to chase the dogs around and tease them and he loves any attention his big brother Christian will give him. I look at him in amazement when I take a look back from videos and photos of the last year and a half, he's came so far and we thank God every single day for this gift.

Dear Lord,

Please watch over Nicky this week, heal this cold so we can get to Jude safely and please Lord, let him remain cancer free. We ask that you watch over our friends that we are praying for - that you bring healing and comfort to each of these precious babies. That through you, our Father -  that you will extend your arms around the families and comfort them and bring peace to all that in out of our control. Faithfully we ask for miracles because Lord, we know YOU ARE ABLE. Father bring CURES ... PLEASE ....


feb12speechOh ... lastly I forgot to mention we started speech therapy to get the ball rolling and even though its very repetitive, I have learned sitting there how to help Nicky be more vocal and it is totally catching on. When we go to the pantry now he use to shake his head - now if I grab the wrong thing he bluntly says "NO" lol ... he's becoming more vocal and saying new things all the time - what a blessing! Thats Nancy below his speech therapist!

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I planned to email out the previous update below, until I got a phone call that stopped me in my tracks. I needed to wait until the family was ready to publicly tell everyone and so the post below this one is a bit delayed in reaching you all.

Baby Evan earned his Angel wings on Saturday 1/21/12 just two days after his first birthday. I ask you all to pray for his family and friends in the coming, days, weeks and months to come.  While our minds know that he is home with our Lord, our human hearts long for him to be here in his Momma's arms and to see him grow up. I ache for every family that has endured such an immesurable loss, yet in the cancer community I can't even count how many children I have witnessed earn wings far too soon.

What I have learned is that some typical quotes with childhood cancer will simply never apply. God only gives you what you can handle is a tough one to hear while a mother holds her only child for the last time in this earthly life.  Don't get me wrong, my faith remains centered and it gives me the strength to keep moving, praying and doing all I can to help other families effected by these diseases.  There is never the right words to comfort a grieving parent. While if you believe in God, we do truly know there is no greater healing than to be present with the Lord, fully restored. It is again the battle of the human heart and our expectations of wanting them healed in their earthly life and their earthly bodies that hurts to read on blog after blog that a child is now healed, in my mind I think yes ... they are ... but not here and I weep. I cry for the families that are left broken over this loss - the magnitude of love for a child has no boundaries, nor any limits ... our hearts long for them to live and grow up healthy and well. Here is Baby Evan's site http://www.caringbridge.org/visit/evan011911

Last night I got a panic text from a dear friend of mine Ginny, little David is the same age as Nicky and their stories are almost exactly the same. David was diagnosed a month earlier than Nicky with the same diagnoses and their treatment was almost the same and their birthdays only 2 days apart. We met in the beginning and having such similar stories, we bonded quickly. David was rushed to ER last night, after bath time he suffered a short stroke. No neurological issues, thank you Lord. I ask that you pray for him while the doctors figure out their plan of action right now. This is David to the right. I ask you all to please pray for peace for his parents while they wait for answers.

If you haven't taken the time to read the post below - I encourage you to. I updated you on all the children from my protocol.

God Bless you all ... Praying for CURES .... !!!!

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."

I hope everyone had a wonderful Christmas and with "Hope" in their hearts that this will be a great year 2012! Praying it brings cures and better treatments for so many diseases.

Nicky has been a "JOY" and it was a blessing to watch him play with his cousins and interact with them really for the first time during the holidays. It was a special Christmas because he actually unwrapped gifts and his face lit up when he got super excited and, of course his favorite phrase with his hands turned up, "Whaaaaa's Dattttt???" He repeats it over and over lol its pretty funny when he is excited over something. He has new favorite movies lately, Cars is by far over played in our household daily. Now he's into BOLT and Megamind too. He's pretty picky and will give you the DVD he wants to watch no matter who is watching TV he rules the house. We have accomdated that by using a mini DVD player for him to view on so the rest of us aren't subjected to having to watch his choice 24/7 but I truly don't mind watching his favorite movies.

This photo was from Christmas morning. While he seemed totally happy with the Cars versions he got, his Baba and Dedo had to trump all Santa did and Mom and Dads gifts later that night....

Thats right, he got his first car at age 2 and I told everyone I will gladly replicate this car at age 16 - GOD PLEASE KEEP HIM WELL! He watched over his new car like a hawk, it was so funny to watch him. Christian got everything he wanted too and is following his Daddy wanting to play Hockey now ... GO WINGS :) --- our Christmas finale' George style was 22 pairs of Uggs lol yes everyone got a pair all 12 grand children and all the kids and spouses. it was a year to BOOT ! : )

He is becoming easier to take to dinner and in public places now though we are diving into cold season, we are trying to limit where we take him. He loves his tummy rubbed and it's so great to feel that bare belly with nothing on it anymore! 1 1/2 years with either a tube of bandages and now it is gone .... it's wonderful and God is GOOD! Many of you know I am extremely involved in the cancer community and with that comes news on any given day, or a new family reaching out for support.  I never turn away from that responsibility..... I pray for more children than I can keep up with, I have a mental schedule of MRI's and follow up with the parents ... some families I tend to get closer to.... and while I celebrated the Holidays, I was still reminded of children that had passed away Marlie D. 9 yrs old, passed away New Years Eve. please pray for the Dodison family. While so many parents faced their first of many holidays without their children, I want those parents to know I remembered you all, I see each of your babies and childrens faces in my memories and I pray at different times for strength for each of you. Just like MRI dates I memorize mentally, I haven't forgotten a date of each child I followed pass away. I mourn for the parents and families that are missing them so much. While some kids I know are fighting so hard, the reality that some families cross into yet another bridge after a relapse ... is the possiblity that are efforts have been exhuasted... for the littlest fighters there is only so much their bodies can take and for some, there are no curavtive treatment options. I know this sounds silly, but we bought the Star Wars series on DVD and since Christmas we have watched 2 each night ....in one espisode this dialog remains true for Christian's:

Luke Skywalker: You don't believe in the Force, do you?
Han Solo: Kid, I've flown from one side of this galaxy to the other. I've seen a lot of strange stuff, but I've never seen anything to make me believe there's one all-powerful Force controlling everything. There's no mystical energy field that controls my destiny. Anyway, it's all a lot of simple tricks and nonsense.
Ben Kenobi: [gets up and takes a blast helmet] I suggest you try it again, Luke. Only this time, let go your conscious self and act on instinct. [puts the helmet on Luke, which covers his eyes]
Luke Skywalker: But with the blast shield down, I can't even see! How am I supposed to fight?
Ben Kenobi: Your eyes can deceive you. Don't trust them. Stretch out with your feelings! [Watches Luke succeed in blocking the lasers] You see? You can do it.
Han Solo: I call it luck.
Ben Kenobi: In my experience, there is no such thing as luck.

Funny how you notice things that apply to everyday life, if you just apply the word GOD instead of FORCE how true this example is..... we base so much on what we see.... to be honest it is difficult seeing so many children not make it and yet believing completely that God's Hands are on every single situation... even when prayers aren't always answered. Miracles exist, the problem is that in pediatric cancer - we just don't see them often enough and still the fact remains that even the worst types of cancer some children survive all odds and some live much longer any doctor could predict.

Yet to the left of this site since I built it remains a simply verse: Corinthians 5:7 We live by faith, not by sight. Yes it is easier said than done, but it is essentially crucial being a cancer parent. BELIEVE ... BELIEVE ...BELIEVE ... to not judge God by what we see daily, but to believe all things are possible through God, true FAITH. It is a struggle, but this year I am going to do my best to wake up regardless of the 10 plus, new updates in my email box awaiting me to lose all faith in a bad report ... or that we lose another child we have prayed for.

So tonight I have been following two special children that have both been on my heart, I ask you to dig deep and pray for Anna Rose whose last MRI on Friday showed that the cancer is aggressive and new tumors are present.... she's turning 2 soon ... please pray for her follow her her: http://www.caringbridge.org/visit/weloveannarose

Secondly, another little man that has my heart in knots ... he is 11 months old and his name is Evan Wolfe ........ he was inoperable and has the same diagnoses as Baby Wade his site is at http://www.caringbridge.org/visit/evan011911 .... they need us to storm heaven please ...Lastly we have our little man David P. scanning on the 19th ... pray for NED .... and please Lord keep our Nicky cancer free, we are 6 weeks away from going back to St Jude .....

So tonight ... let's believe in MIRACLES and that GOD is and always will be in CONTROL of ALL things .... we need CURES ....

God Bless you all .... The very PROUD Momma of my boys .... hugs from me and my NICKYBEAR! 
Luke Skywalker: You don't believe in the Force, do you?
Han Solo: Kid, I've flown from one side of this galaxy to the other. I've seen a lot of strange stuff, but I've never seen anything to make me believe there's one all-powerful Force controlling everything. There's no mystical energy field that controls my destiny. Anyway, it's all a lot of simple tricks and nonsense.
Ben Kenobi: [gets up and takes a blast helmet] I suggest you try it again, Luke. Only this time, let go your conscious self and act on instinct. [puts the helmet on Luke, which covers his eyes]
Luke Skywalker: But with the blast shield down, I can't even see! How am I supposed to fight?
Ben Kenobi: Your eyes can deceive you. Don't trust them. Stretch out with your feelings! [Watches Luke succeed in blocking the lasers] You see? You can do it.
Han Solo: I call it luck.
Ben Kenobi: In my experience, there is no such thing as luck.



Sorry didn't expect to post,  but when I saw this video tonight it hit like a bullet, mostly because I know at least 6 kids and mostly my Arianna is in it and once again without hair ... she is featured in the red shirt and bow on her head ... what a princess! LOVE her!

It wasn't the video as much as it was from a blog entry from an NON-CANCER Mom that put it in her own words that I need to share:

Sick Kids in Beautiful Video Put Holidays in Perspective

Posted by Julie Ryan Evans
on December 22, 2011 at 1:23 PM

The holiday stress in my head this week is a like a giant red and green wheel spinning constantly and gaining speed. Have I found the perfect prime rib recipe? Are all the presents purchased, and is one kid going to need therapy one day because the other has more boxes? Are two pies enough to feed nine people? And dear lord, my quest for the perfect centerpiece is killing me.

Every year, I try to take things down a notch, to do less, embrace the simpler things, and not cave to the seasonal pressure, but no matter how many deep breaths I take, or lectures I give myself on the real meaning of the season, I still find myself and those around me frazzled. This video from the kids at St. Jude's Hospital is a pretty powerful de-frazzler.

It made me pause like nothing else to think of these kids and their families and the fights they're fighting. How different their holidays will be with an often deadly diagnosis, how none of the festive frenzy -- no matter how well-intended is really that important. Their innocent and jubilant faces remind me how fortunate we are each and every day that we have our children with us, that we have our health, and that stressing over the perfect meal is really ridiculous.

It's not that we should scrap our holiday traditions, because they're important, and a lot of the hustle and bustle results from good causes -- caring and sharing and making memories.  But it shouldn't consume and exhaust us as it often does; it should delight us.

I watch this video and I think of my dear friend who lost her son to cancer, and I think of a  young girl at my son's school who was just diagnosed with an inoperable brain tumor. I think of how the kids in the video could be any of our children at any time. And suddenly my  to-do list is a lot less intimidating, because really if something doesn't get done, it's just not that big of a deal. And who really needs a centerpiece anyway.

Did this video move you?

::::::::::::::::::::::::::::::::::::::

I then sat in my car and I cried while sitting in the Walgreens parking lot. I could not compose myself.  Then still looking at my phone came across and felt like I needed to post this for the Mommies missing their child this year :::

THIS POEM WAS WRITTEN BY A 13-YEAR-OLD BOY, 
WHO BATTLED A BRAIN TUMOR FOR FOUR YEARS. 
HE DIED December 14, 1997, AND GAVE THIS POEM TO HIS MOTHER, 
JUST BEFORE HE DIED ....

 

For I am spending Christmas ...
THE SIGHT IS SO SPECTACULAR,
PLEASE WIPE AWAY THE TEAR, 
FOR I AM SPENDING CHRISTMAS 
WITH JESUS CHRIST THIS YEAR.
I HEAR THE MANY CHRISTMAS SONGS 
THAT PEOPLE HOLD SO DEAR,
BUT SOUNDS OF MUSIC CAN'T COMPARE
WITH THE CHRISTMAS CHOIR UP HERE. 
I HAVE NO WORDS TO TELL YOU, 
THE JOY THEIR VOICES BRING,
FOR IT IS BEYOND DESCRIPTION, 
TO HEAR THE ANGELS SING. 
I KNOW HOW MUCH YOU MISS ME,
I SEE THE PAIN IN YOUR HEART,
BUT I AM NOT SO FAR AWAY, 
WE REALLY AREN'T APART. 
SO BE HAPPY FOR ME, DEAR ONES, 
YOU KNOW I HOLD YOU DEAR.
AND BE GLAD I AM SPENDING CHRISTMAS 
WITH JESUS CHRIST THIS YEAR. 
I SENT YOU EACH A SPECIAL GIFT, 
FROM MY HEAVENLY HOME ABOVE, 
I SENT YOU EACH A MEMORY 
OF MY UNDYING LOVE. 
AFTER ALL, LOVE IS A GIFT 
MORE PRECIOUS THAN PURE GOLD, 
IT WAS ALWAYS MOST IMPORTANT
IN THE STORIES JESUS TOLD.
PLEASE LOVE AND KEEP EACH OTHER, 
AS THE FATHER SAID TO DO, 
FOR I CAN'T COUNT THE BLESSINGS
OR LOVE HE HAS FOR EACH OF YOU. 
SO HAVE A MERRY CHRISTMAS 
AND WIPE AWAY THAT TEAR, 
REMEMBER, I AM SPENDING CHRISTMAS 
WITH JESUS CHRIST THIS YEAR. 



Here's our NickyBear .... I want to thank our photographer Sabreena for being so patient with him! I told her we have so much to catch up on with memories .... she is very talented and if you like her work she comes to you - here is her info:  http://www.pbsabreena.com/

On another note, yesterday Nicky is now 29 months old. I celebrate every milestone and everyday with him! He is becoming easier around people socially and that is a blessing. His tummy is healing great from surgery and the scar is already fading away. This time of year fills me with such mixed emotions. I am so very grateful for my family, for another clean scan and yet there is a part of me, the vaunerable mother in me that knows the pain of watching your child have to walk through the mind field of cancer and so, so many are missed this time of year especially is hard on these families.

It is hard to place into words the pain my heart I carry for these families, especially now. I had a friend email me this week and he said that this had changed me forever. That comment could not be more accurate. It has changed the compassion I have the love I have for complete strangers, the JOY I find in being able to be there when I am needed. I recall a quote from Spiderman, "With great power comes great responsibility."  I like to change those words and say with "With great love and compassion comes great responsibility."  It is in this whole process that I have found God deeper than I ever thought possible, it is with that relationship that I have learned to love deeper than I ever knew how. I recall last Christmas Eve, ready to walk out the door to go to Nick's parents house and my cell rang, and I the other end was Ryken's Momma. That call was surreal, she told me he had scanned because they thought he had the flu and the doctors gave him a week to live. That entire night I had such a heavy heart, such a empty feeling of helplessness and I couldn't change the pain she had in her voice. There seems such an unfairness that is hard to accept with this process of life and why one so little and precious was going home too soon. We miss you Ryken B. your little fist pumps and smile, what a precious child he was. Kendal is also on my heart, we wanted her to beat Leukemia sooo badly ... she fought so hard! Pray for these families ....

This morning a little one we have been following peacefully passed away at 6:22am and while I never knew this princess, Bella Bowman was truly beautiful and again .... I ask for prayers for her family Her story can be found here:http://www.caringbridge.org/visit/bellabowman , she too was not only part of our St Jude family, but our ependyparents group also and she and Nicky shared the same diagnoses. I recall so many that passed away Jonathan M., I quoted his Momma last years letter, so profound her letter explaining how would she tell his siblings that we wasn't going to wake up to open presents ... There are so many memories I have of soooo many children, many I did not even know - but as a community whether it be St Jude, shared diagnosed or just cancer alone .... there is a silent bond that no words would be adequate enough to to describe that catastophic toll this new way of life places on you.

This Christmas I am reminded of a Christmas card I send out in 2003 and inside is said, Then the Grinch thought of something he hadn't before. What if Christmas, he thought, doesn't come from a store? What if Christmas, perhaps, means a little bit more? This Christmas be so grateful for what you have, you can not buy what is most priceless .... FAMILY.

Another Mother (Ivee the Blessed) wrote this, Many of you know why we call this G.I.F.T. week. It makes sense, being that it's Christmas time, a time for giving and receiving. BUT, I didn't call the day of remembrance that for just the fun of the season. No! Not at all. G.I.F.T., of course an acrostic, but it holds so many meanings for us.

I am incorporating this G.I.F.T. into our lives with Nicky's story, it wasn't what some call "mother's intuition" That the night I was so uneasy with Nicky's body feeling limp in my arms On May 22,2010, because I prayed and God told me - get him to ER .... there is nothing to explain, God saved Nickys life, God gave us a second chance,  that through the hands of Dr. Holly Gilmer that He administered a clean surgery .... is it a G.I.F.T. that St Jude had a curative protocol for our son and as you can see from these photos, WE ARE SOOOOOO BLESSED! We take nothing for granted.

G.I.F.T. is not about me. It is all about my Lord, my Savior, and Nicky's Healer.
...God
..........Is
...............Faithful and
......................................True!

May you have a Merry Christmas, please always pray for CURES ... pray that God shows mercy to Nicky and that he remains cancer free. Next MRI Feb 23.2012 .... and pray for the endless list of families with loved ones they miss dearly during this holiday season.

 


williambeaumont

Beaumont First things first .... the night before surgery we were a little worried and not wanting to raise red flags to stop Nickys tummy surgery because the week before his ANC was 1000 and he was sick with that bug he gave Christian and I, and what a bug that was! So he seemed ok and I took him for his scheduled appointment at Beaumont in Royal Oak at 7:00am and surgery scheduled for 8:30am .... so I didn't have my paperwork to tell me exactly where to go and there are many buildings on campus at Beaumont Hospital, I recalled the nurse telling me to park in the South Tower and to go to the 2nd floor. So I parked in the South tower, never parked there before - it's always the Rose Cancer Center. So as I walked into the main floor of a hospital that echoed memories of Nickys surgery 18 months ago - I just jumped on the elevator with anxiety and hit 2.

As I walked off the 2nd floor the walls closed in on me as I realized I just walked into OR Surgical area, the first spot I saw to my left was where I sat at 4:00am on May 22, 2010 while Nicky underwent a temp drain placed in his head to relieve the pressure. I tried to breath ... then I looked to the right to where I walked off the elevator and The Strange Family met me with food and hugs and then I was surrounded by family, friends and Pastor Steve. I immediately remembered a man in blood stained scrubs walking out towards us 4 hours into the surgery and I thought my son was dead .... we was sent to update us that the surgery was going as planned - after that visual, this is when I passed out for the finally two hours before Dr. Holly Gilmer-Hill walked out and I jumped up in fear and hope and ran to her .... the women at the desk saw my eyes filled with tears and she asked if I was ok. Visibly I was not ok, unprepared to walk into this area of a place filled with anxiety and pain. I quickly said," No I am not ok, please tell me this is not where I wait for small procedures??" The woman said no and she was kind enough to walk me to where I was suppose to be and checked me in to make sure I was ok. Nick would have came with me but I guess I didn't realize the massive effect of walking into the actual areas where this nightmare begin would haunt me so much and he showed up soon after.

So we got into the pre-op area and we waited and waited and finally at 9am, I said when is this surgery ???.... They told me we were bumped and shocked no one had called - surgery is scheduled at 10:30am and emergency took our spot. I was fine with that, just wish they told me not to sit there from 7 to 10.... then you realize how spoiled you are at St Jude where they let your child be sedated in the comfort of your arms. I am so use to this and I will not let him be sedated without being twlighted without me. It was tough, but then Dr.Han walked in and again the room closed in on me as he was the first person to cradle Nicky in the OR at 4am on May 22,2010 and place IVs in his tiny 8 month old body. He knew I was not letting him touch my boy and yet I was still comforted with him because we was familiar.  He had no problem with supporting my requests and that I requested Versed ( this is a drug that erases your memory and it also is a heavy sedative. ) He allowed my request.  He promised me once Nicky was gassed no more than two tries to poke him and that was it - port needle was on the bed that I brought. He was kind enough to agree and the procedure went smooth. His recovery was a little rough day one, but day two he was moving around much better. I recall the nurse in recovery saying this is just another step towards being done. Boy I pray that is true and I pray that the last surgery he needs in his life is his port removed period. He sounded coupe like for 3 days so I was pretty upset when the nurse called and I asked did you incubate him? She said yes and I said half or whole - she said whole this is the size of the tube that goes into the airway for breathing ... they NEVER told me he was being given anything but gas so I was not happy with them ..... either way Dr. Morden did a great job and the scar is already fading and Nickys healing.

So enough about that .... all is well, Nicky is well ... we are relaxing for a brief moment .... It has been a crazy ride since then ..... Aaron Gray (same dx as our Nicky)  passed away and our hearts are in pain .... then Flo passed away from Ovarian Cancer, then a few days later Alan Goldman passed away from Pancreatic Cancer and then a few days later my great Uncle Hank passed away. Much sadness while we are trying to be grateful for today ....Please pray for these families.

Update on my kids we follow ... Reese C., tumors have shrunk and stable, she is not part of SJYC07 protocol but she is part of our Jude family. Back to our protocol -  Avery C. Tumors have shrunk!!!  Hallie C. is NED, Angel C. NED, Haley H. NED,  Ashlan B.  is possibly stable with a stubborn spot so PRAY, Christian S. NED, Luca P. STABLE ... pray for NED, Bella M. STABLE .. pray for NED! Now the kicker Ehrren G. another tumor has presented and not in a position for operation .... pray for radiation to cure his body ...Aaron B. scans this upcoming week ... pray pray pray .... new kids walking in there daily and Willa Rose has her second surgery Jan 9, 2012. ohhhh... Anna Rose in NY ... she is STABLE pray for cure

And FYI it's not HAPPY HOLIDAYS ... its Christmas .... so MERRY CHRISTMAS and thank Jesus for his sacrifice for us ....PRAY FOR CURES IN 2012 .... Nicky and all of us did a photo shoot in the next few days I will post some of the photos for you all to see! God Bless you all ....

Ohhhhh and I keep forgetting to post our newest family member that came into lives on November 5, 2011 ... meet Bentley - he's made it through George Boot Camp so he's staying and doing very very well ....he's 2 1/2 pounds of fun!

He's keeping Nicky busy - he likes to chase him and Haley Blu (our other pup she's 3) has a partner in crime now!!!

Just a reminder to pray for NickyBears surgery Tuesday morning at Beaumont to close his tummy from where the feeding tude was, it would not close on its own and St Jude could not fit us in while there. So pray for a speedy recovery and surgery!

4003

Back to Memphis, Nicky and I flew in a day early and Nick met us after Nicky was sedated.  As I posted a few days ago below the MRI is NED and Clear of Disease!!! AMEN ...While there I was able to visit 3 families inpatient, which made the extra day there go by much quicker. We started by seeing Baby Ronan V., he is in his 3rd round of chemo and day 8, and 9. It brought back so many memories being in that exact room, out of all the rooms this one I remember the most. Room 2077, There are certian things about Jude you can not erase and this was the room I was in starting Day 1 of round 4 of methotrexate. This room also echoed a very real anxiety and sadness .... it was there when our Doctor, Dr. Wight walked in hours later from hearing the news of Baby Wades scan..... I remember looking at her and saying, "You have the hardest job in the world .... I don't know how you do this everyday." She said, "With hope ... hope that we find better ways to treat the kids." She could tell I was a wreck and I think that is why she got us discharged so quickly that round. Nonetheless when Ronan's Mom said sit.... I could not and rather stand in my high heel boots and be uncomfortable.  But I was grateful to meet Baby Ronan and his Momma.

blue2

We then got to see Hallie C. she was sleeping, but I needed to go give her Momma a hug and just show her what a difference a year can make by showing her how our Nicky looks today and showing her a photo of a year ago. She was also on her Day 8 and 9 or round 2 and has a scan coming up, please say a prayer for her that she is NED!!! (no evidence of disease.)

We went into E-clinic and the play area and burnt off some time there, we missed a visit to see Arianna's family but I did get to see that princess at rehab the next day briefly. Nicky was filled with energy and loved running around Jude.  I could see other parents looking to see if he was a patient - the identifing marker is the blue bracelet that he was not wearing our first day there. I am sure people wondered where my other child was when passing us and seeing Nicky clearly looking like a picture of complete health. I remember sizing parents up wondering which child was the patient in the beginning.... most of the time the treating patients are bald, thin hair, NG-tube in their nose or feeding tubes running from their stomachs, or clearly deficits from surgery or treatment, sometimes both  - multiple markers pointing to the patient.

art

We finally headed back to Grizzle and caught up with Tyler B. who was scanning the same day as us. They played in the playroom and we talked about the kids from our protocol. There are so many to update on. It was so good to see Tyler, so full of life with his brown spikey hair looking healthy too. Upon leaving the hospital I was able to visit Willa Rose and her family and see such wonderful progress since her first days there our last visit 3 months ago. It is wonderful to see them achieving goals and gaining strength, even through treatment.

blue3

chilisSo as you know the MRI is NED and all is clear!!! PRAISE GOD! The ultrasound was not too bad to sit through and they saw nothing alarming So the only thing left  was for us to have our clearnance visit and say our goodbyes for another 90 days of freedom. To update on the kids that scanned this week, Brody S. scan is stable and we still need to pray it is once again NED. We also scanned with Tyler B. NED clear once again ... then there was Yesaahi  G.  in South Africa on our protocol and his scan was NED clear ... While Kylie O. I was told her scan showed minor progression - there are still cureable options left so please keep that little one in your prayers. Campbell's results showed that the chemo needs to be modified and so we pray... and we are waiting on Reese's news still. We ran into Scout L. who got a great scan too. Belle M. scans Monday, please pray for her and Luca P. will be coming up shortly with Christian S. next week. And Little Anna L. scans on the 6th too.

Crazy enough while waiting that Wednesday night in the lobby of Grizzle House, it was filled with all of the faces of 6 months ago at Target House when we needed to take cover from a Tornado and Reese and her family and Kylie and her entire family were there .... what odd timing we were personally off by a week, but it was still good to see so many faces there that we knew. We even got to see Isaiah P. and his Momma there for HBOT treatments and doing much better.

We met a family that lost their son a year ago while waiting in the lobby for Nicky's ultrasound and when they asked questions about Nicky, we asked questions about a little girl that was only 1yrs. old  that looked healthy. They told us they had lost their son a little over a year ago, 6 weeks before giving birth to their daughter. Out of fear they chose to scan her at 1 yrs old. in their local town, that scan showed something so there they sat AGAIN at St jude.... my heart literally hurt so much thinking of them all day ... I apologized to them and said no family should ever be here, but to even sit in this room twice, Lord please let this be a clean scan! The mother emailed me back, I was so happy to learn that scan was CLEAR ... thank you Lord. This is their son's story http://www.caringbridge.org/visit/jamesvidrine Pray for their daughter Adeline to always remain PERFECTLY healthy ...

So we came home and were able to decorate our tree with peace in our hearts. This is something I could not do until we came home, so the tree sat empty for 10 days waiting for us when we came back.

While we feel so blessed we learned of our dear friends father, Steve Goldman's father  was given months to live with Metastasis Pancreatic Cancer.  We learn this moments after getting our good news and our hearts hurt for you all, you supported us and prayed for our boy and now we are praying for you. Not only that but another child's post came in the day we arrived, Aaron Gray and his Momma was the last donation for Nickys CURE SEARCH WALK to put us to ourt goal this is his entry in his journal http://www.caringbridge.org/visit/aarongray - Lord hold this family up!

Nicky brought a bug back from St Jude and Christian and I were so sick vomitting from 1am Friday -10:30am Saturday, Super Daddy Nick had to put on a Cape and take care of everyone, there's a first for everything!!! .... we couldn't make it to church but we learned that the Jackson family lost their sister Flo to Ovarian Cancer this morning.  There are too many names to list of children and loved ones fighting or whom we have lost from cancer in the last year and a half ... it has been a tough to love so many and hurt with so many, and wake up and fight the thoughts everyday that could steal all the wind from your day.

What I know is God is GOOD ..... we will never be able to grasp all that we endure, what I know is that God uses us and uses our lives and stories to teach each other lessons in every single way. Out of the most pain, we learn the most ... wish that was the absolute opposite .. but it simply is not how this world works.

Dear Lord,

We thank you for allowing us peace of mind to come home and celebrate the holidays! Please show mercy on so many families hurting right now .. your love is ALL HEALING .... ALL POWERFUL ... and we ask that you lift up all the families mentioned in this post .... show your unfailing love and your mercy ... Father .... we leave all things in your Hands always .....Please look over NIcky during his surgery and Beaumont this Tuesday morning to close his tummy that just would not heal on it's own!! Make his healing quick Lord ....

 

First things first, NED ( NO EVIDENCE OF DISEASE) people - God has shown us his confirmation of the blessing that occurred May 24, 2010 when God made Nicky CANCER FREE! I was doing ok today but the day started early, 6am to get him ready for 7:15am labs and clearance. Normally you all know we get results quick, after a 9am MRI and recovery at 12:00pm .... the wait started. Our Doctor told us if she could not contact us by 3pm she would be in a meetting until 5pm and call after. So the clock went past 3pm and we thought ok 5pm then ... 6pm went by nothing ... 7pm went by ... nothing ... I want to personally thank Pastor David for this Sundays service where he said that GOD WANTS TO COME IN LAST MINUTE AND SAVE THE DAY so to speak ..... waiting last minute is stressful when you are prepared mentally for a call hours ago. Our doctor had an emergency and called and said everything looks great ...So relieved ... so blessed and so happy to go home tomorrow to decorate that empty Christmas Tree! It was waiting for this news with us ....

So many kids are here .. please pray for our ultrasound on Nickys kidneys, the doctors don't seem worried but they are still picking up contrast. We will be flying home tomorrow afternoon and another 3 month countdown to St Jude begins!!! It was a long day my phone has never blown up like this with so many people worried .... we so felt you love while we too were starting to get worried as the time went by .... BUT ALL IS WELL .....

I SOUGHT THE LORD, AND HE DELIVERED ME FROM ALL MY FEARS. Psalm 34:4

Pray for Brodys scan tomorrow, for Averys scan tomorrow for Reeses on Friday ... Kylies tomorrow ..... wow too many to name ... please say some prayers for great scan for all and for Campbell getting todays results tomorrow.

THANK YOU ALL FOR LOVING US AND YOUR RELENTLESS CONCERN ... all the texts, you worried for us ... : ) We love you !!!!

 

What a week .... so much undisclosed but this journey is about Nicky ... so on Thanksgiving Eve I find it impossible to not write about how thankful we are for every minute of every day with him.  Yesterday marked that we is now 26 months old ... everyday and every month is a BLESSING .... we do not take for granted. We met locally with the surgical team at Beaumont to close NIckys tummy surigcally because after 5 months of wound care, NOTHING is closing this thing.  The surgeon told me that if it didn't close in a few weeks that is should be done surgically - while relieved it was finally being handled .... another surgery Ughhhh ...  thankfully it's and in and out procedure and we do not have to stay in the hospital, which Dear Lord.... THANK YOU ... I couldn't bear to sit in the hospital he was in after surgery ... I pray we never have to stay there ever.

Our scan is a week away, ... thanksgiving is tomorrow .... ask yourself ... what are you truly grateful for? This is a simple answer for us .... we are greatful for Jesus Christ who allows us sinners a gateway to God .... someone stopped Nick in a store randomly and asked, "are you are Christian?" Nick replied YES .... he said do you know why God sent Moses and the 10 commandments? Nick was a little taken back a stranger grabbed his arm and asked him this ... the mans reply was ... God knew that the 10 commandments no one for be able to find salvation and this is why He sent Jesus Christ..... he looked at Nick and said look around you .... do not be stressed and do not worry .... if you do you take Jesus back to te cross and he already paid that price - don't take him back to the cross again. Profound for a stranger to apporach him in such a way ... he told him to think of others first and to just be happy ... do what Jesus did for us ...

Tonight I post no photos .... but ask you that tomorrow when you sit at your dinner table that you pray for cures, pray for our Nickys scan a week away that it is clear and mostly ... pray for all the families that are in treatment and the ones that we have lost that are soooo missed this year and for the years to follow....

My greatest lesson - is compassion .... give when you have change to give - give when you have dollars to give ... help when you can donate your time to soup kitchens and even your local salvation army ... all volunteers ..... find your way to make a difference this holiday season...because any effort from your heart matters..Find a way to leave an imprint on others hearts .... pay attention to people around you, maybe you need to grab someone, or maybe you need to be grabbed ... either way .. learn from us ...

I am grateful Lord for my boys .... the blessing they are ... I am beyond grateful for every mintue with Nicky .... I am BLESSED beyond measure that my husbnad supports me and all the time I spend volunteering my efforts to aid pediatric cancer. I am blessed because my family is only second to God .... and I am grateful for the lessons, even the ones filled with pain ... I am grateful for my friends - the ones that are truly family ... thank you dear Lord ... for all you have done for us and continue to do .... please allow Nickys scan to be cancer free .... God Bless you all and have a Happy Thanksgiving ...

Please pray for Laine Watkins family as she earned her wings this past week and find myself wishing we just had cures!!!! Lord give researchers PLEASE  Amen ... amen .... AMEN ... Happy Thanksgiving

btw - Colin T is still caner free .. thank God!!! ...   : )

So much to say, I seem to barely have time to write lately. So first things first .... we are still trying to figure out our St Jude stay because since we removed Nickys feeding tube 5 months ago, it simply will not close on its own as expected. That means another surgery for our little guy and while I am not happy about it, it will be closed properly and it will heal now so this is a good thing. 5 months of wound care is no fun at all, for him or for us - so we not only need your prayers for his MRI, but that this procedure is QUICK and HEALS fast! With the holidays approaching so quickly, I find myself getting anxiety to a totally different level when I see Christmas decorations in all the stores with this looming test in my every thought. I just want great results so we can have a great holiday season! Our Heavenly Father has His hands on our boy standing it faith on that!

hallhouse

So Halloween Christian and Nick love to make the house SPOOKY ... lol all down our long driveway were tiki torches and gates with webs with strobe lights and sound effects... the kids loved it.  Christian and I did our annual carving of the pumpkins and I did one for NickyBear, though I won't lie it was almost just NICKY because it hurt so much to carve the pumpkin. Christian did his this year without any help from me with the double ghosts and the paper ones he won a school contest with. Christian is extremely talented and crreative.

pumpkins

Nicky would have nothing to do with putting on a costume, however I am still determined to get him in it while sleeping for at least a photo LOL. Nicky and I went to Rose Cancer Center for his port flush last week and he did great. It's either he doesn't care or he's going to scream the whole time and thankfully we got through both monthly flushes with no problems. Below is a photo taken in the lobby there, its really kid friendly so it helps when we need to wait.

rosecenter

bdaymomSo the 4 of us went to eat at ECC for my birthday and it was a rushed dinner, but it didn't matter to me as long as I have my boys that's all that matters to me.  Thank you all for all the numerous Birthday wishes of FaceBook ... like I will always say ... you already know what this Momma wishes for every single day of my life and always will.

The following night Nick and I got to grab dinner alone and it was again quick but we got a little bit of time alone. Thank you Auntie Kimmy!!! What would we do without you!

On a different note because I always try to update you on the kids I ask you to pray for, Megan P. scan was NED (no evidence of disease), Seth B. and Ian M. too both NED as well as KK with a big fat NED thank you Lord  .... Luca P. may need another surgery - so please keep him in your prayers and Arianna's scan came back and the tumor had shrunk - nothing short of a TRUE MIRACLE.  Colin needed to reschedule so no news there. I ask you to continue to pray for Luca  and Arianna .... all the kids even with NED scans that they remain so. Another new Momma found her way to me and she is a 22 month old named Hallie A. please keep her in your prayers as their journey on SJYC07 protocol just begins. Ryan D. scanned today I believe and Christian S. is a week after us .... all these kids need to be lifted up with our Nicky in prayer PLEASE.

smile2

I can't tell you enough what your prayers mean to us and they continue to strengthen us. We can't imagine this journey without your love, prayers and support ... the Lord took us down this path for a reason and as we continue to find comfort in the Lord, I will always do all I can to help another family .... this is no doubt part of my mission and ministry in life, and as painful as it may be at times to love these children I am reminded that God so loved the world .... that he gave his ONLY son .... for us .... I am reminded this Holiday season what a true blessing each day is, I hope you all see that too.

park

pimSo while you shop and rush to put up trees and decorate and spent time wrapping presents and standing in lines to purchase gifts .... think of just one way you can do something to help someone else.  Whether it be a donation, a walk  or doing something for your church .... find someone that needs help and help them ..... it is the GREATEST gift you will ever give yourself.

Dear Lord,

This new year approaching I ask relentlessly request that you gift talented Christ loving researcher with CURES, I beg you to bring healing to not only the children suffering life threatening illnesses but all people of all ages .... I ask you to renew the hearts of anyone reading our posts and that they will be inspired by doing good deeds for others. I have faith in you Lord, my provider, my great physician and strength ... Please hear my prayers and keep Nicky CANCER FREE .... !!!

PS .... Meet Owen and Oliver they are sold this year at J.B. Robinson Jewelers, Gymboree and Kay Jewelers.  Each Bear sells for $12.99 and the profits go to St. Jude Children's Research hospital. So Give the gift of a CURE!!!! God Bless and please please pray for NickyBear's scan Nov 30!!!!

owen

First and most importantly, our next MRI date is Wednesday, November 30, 2011. As you all know I HATE Wednesday scans because getting results right after is really close to impossible because our doctor is in meetings all day. She said she is really going to try to see us in between but that she will at the least give us a call no matter what. Ughhhh .....Please pray for NED ( no evidence of disease)

Seems as posting lately isn't as easy taking a whole month and trying to verbalize and cram it all in a short enough time span that you will still want to read about it. I think I will go back to updating biweekly so that I don't miss important things and email you once a month a notification.

As you all know that follow and read My Nickybear updates - I find ways to advocate, because if I personally can't fight cancer, then I find ways to do it for Nicky and all the children. I want to thank so many of you for signing the petition. On October 21, 2011 not only did the petition meet its goal it surpassed it and people are still signing it! God Bless each of you for signing, re-posting and emailing it out, it truly took an army of people to help and the numbers surpasses the goal! THANK YOU LORD!

On October 20, 2011 my dear friend / sister, Nicole welcomed Baby Jackson Carter B. into the world and I can't be happier for her and her family. I pray for nothing but love, laughter and health to you sweet Jackson! She will always remain a mother of three, two whom will walk and one that soars. We miss you Baby Wade!

Nicky is growing and is being an active 2 yr old and is into everything! He eats like a little piggy and it reminds me of how blessed we are that he can actually eat! a year ago we had switched to baby foods and bolus tube feedings. No more machined feeds and hours of tubes attached to him - finally a little freedom! I think about Jacksonville a lot lately. It was my 2 months alone with Nicky and we watched Toy Story 2 a million times. We cuddled and always slept together, those days will always be precious to me and walking the dock on the St. John's River. Now I get to experience fall here home and I love this time of year. Nicky loves the park and to take him away from a playground is torture!

We are enjoying him and all his spunky attitude. He has become a bit of a Daddies boy lately - Nick can't leave a room without Nicky throwing a fit. I guess he's bored with me since I am with him 24/7 and when he catches Daddy running to another room he runs screaming for him. One of the most stressful things we are dealing with since Nick mainly works from his home office.

It was a rough month in our circle of friends, Lyssie R. gained her wings and within days Drake K. earned his. We were in treatment in Jacksonville shortly with Drake and he would come walking in with his cowboy boots.... both these children and their families need prayers. On a different note, Little Anna Rose whom I have followed since the PICU in Buffalo, NY had a bad scan and there was progression .. some children just capture a part of me and Little Anna has done that, so please pray for her and her family. And since cancer does not discriminate in any way, I ask that you send prayers to Heaven for Flo whom is battling ovarian cancer and Aline also. Please pray for Megan P. in scans, Colin T. and Luca P. both scanning next week.

Nick and I had a chance to go out with friends to ECC and it was fun to be part of the "normal" world, though out of the corner of our eyes at the table next to us was a child, maybe 9 or 10 and he was there with his family - the hallmark signatures of a child that has been treated or in treatment for cancer. Faintly I could see a light scar on his head as I approached them, and he was bald sitting between two siblings and his parents. No stopping me when I see a child, I sprinted over with a Nickybear card in hand and said I have to ask, since my son is local and we just finished a year of treatment at St Jude ... enough said .... he was a boy diagnosed at age 3 PNET tumor and it was removed, they were treated at U of M and he is now 9 years old and cancer free. His hair just never grew back from radiation - but it didn't matter - he pulled off bald beautifully. It shocks me, was I blind before - walking around oblivious to the hallmark signs of pediatric cancer? The normal world goggles that most people wear ... mine were ripped off my face scarring me permanently on May 22, 2010.

I hope that whomever reads this takes those goggles off and sees life and all its beauty and pain and understands what is truly important.

I took this photo while Nicky was sleeping on Oct. 22, 2011 this date marks that he is 25 months old and while I starred at him sleeping and thank God for every minute with him ... I couldn't help but cry looking at the I love St Jude t-shirt he wears. Boy I wish it was a t-shirt we bought in support, but because my little man was a patient. It made me realize that life changes in an instant and nothing is ever the same and that I am suppose to tell all my readers to be grateful for what you have because it can change in a blink of an eye. Pray for CURES! Thank you for always supporting us, loving us, praying for us and reading NickyBears journey ..... God Bless you all .... xoxox

Its simple, please sign this petition - ask your spouse, boyfriend, girlfriend, Mom, Dad, Grand parents, Aunts, Uncles, Cousins, Kids ... FAMILY and so so many Friends .... cut and paste this - email it, forward it, take the link and facebook it, tweet it - text it please we need 1794 more signature before October 26, 2011.  We need everyone to help - no funds required and no event to be at ... just 5 confusing minutes registering and signing this petition.

PLEASE - For Nicky ... and all the faces I love and have lost .... GOD BLESS!

 

we petition the obama administration to:
KEEP KIDS ALIVE. Allocate more funds towards CHILDHOOD CANCER RESEARCH.

Children's cancer is the #1 cause of death in children, yet the funding approved by Congress for Childhood Cancer is supremely low when compared to Breast Cancer Research which is the 6th leading cause of death in women. It is not okay that our children are dying because government funding is lacking. Cancer is the leading cause of death in children over all other childhood diseases combined! Children's Cancer Research needs to be at the forefront of funding. These children are our future and need to be taken care, stood up for, and protected, and this includes making them a priority in government funding for cancer prevention research. CHILDREN ARE DYING EVERY SINGLE DAY DUE TO CANCER. IT IS TIME FOR THE GOVERNMENT TO STEP UP AND PROVIDE SUBSTANTIAL FUNDING FOR CHILDREN'S CANCER.


https://wwws.whitehouse.gov/petitions#!/petition/keep-kids-alive-allocate-more-funds-towards-childhood-cancer-research/8ZnnxNgw

wwws.whitehouse.gov
WhiteHouse.gov is the official web site for the White House and President Barack Obama, the 44th President of the United States. This site is a source for information about the President, White House news and policies, White House history, and the federal government.

 

Approaching this moment where time completely stopped a year ago - I know I would not sleep tonight - I will surely stay up and mourn, for this night was the night that my phone tucked under my pillow for a week would ring.

We had just settled into Jacksonville for Proton radiation and everything felt wrong because my dearest friend, my sister through cancer boot camp was not there before me as planned. I remember for two weeks leading up to this night the I tucked to phone under my pillow in fear I would not be reached if she called me. So I kept my phone charged answering any text or call, in my heart just wishing I could be there with her, but you see she knew my heart and knows I was there as much as I could be.

I had planned to come in to see her that weekend regardless .... But God had different plans and I am learning daily - that's how it all works, God's will no matter what the circumstances.

At somewhere around 3:40am the text came - I knew it was coming, but it didn't help the pain ... My sister Nicole lost her son and Baby Wade took his last breath at 3:33am. Around 3:55am we spoke ... it was simply numbing, her pain was filled temporarily with relief because his suffering was great.

She created a video to commemorate Baby Wades 13 months of life. She carefully chose photos she loved and lyrics to songs she loved along with live footage - this is a huge deal for someone that isn't online savvy ( it's beautiful) and  I share this with you along with post she shared a month ago.  I see this post differently ... I held this paper in my hands and sat on her steps to read it. It is so profound .... I miss you baby Wade .... I sat next to your Amazing Momma at your service and gripped her arm .... You see my dear friend tries to hold it in, but I know her heart and the love she held for you was beyond immeasurable, so tonight I will sit up and look outside for a falling star - the same one I saw when I went outside to my condo baloney in Jacksonville and saw while I prayed moments after I knew you were gone... This happened almost every time I talked to your Momma late night during my Florida stay.

Arguably, this blog or website is about my view ... Nickys Momma .. so sometimes maybe I share too much --- but this letter no parent should have to get .... but I was grateful for it - it can show what we should all aspire to achieve with compassion.

From Baby Wade's Momma

I have been thinking about the night he left us a lot lately, one of the many perks of a grieving parent, you never know what thoughts will return to rule your mind at any given time. And of all the horrible images and sounds that last 15 hours left me with, there is one incredible act of kindness that still brings me comfort. Anytime I think of it it makes me cry with a mixture of happiness and sadness. Sad that it was when I told my son goodbye but happy to know that people like the ones I will tell you about are out there, they walk the same earth and breath the same air, and it restores my faith in humans. I feel sure it is the single most kindest act I will ever witness in my lifetime, and from people who didn't know us at all. I had asked our hospice nurse Brandy what would happen when the time came, who would come to take my son's body. An image of a coroner and a stretcher wheeling through my house was just unacceptable. She called the funeral home and it had already been planned, a couple who lived not to far down the road would come and get him, the husband would drive while his wife held Wade on the way to the funeral home, they had even bought a special blanket for him. This made me happy. So when the time did come, at 3:33am on October 2, 2010, Brandy made the call, they would be there in a half hour or so. As I held my son for the last time, rocking him, kissing him, trying to keep him warm, they arrived, They were an older couple, and at 4 something in the morning they were dressed in their Sunday best. The husband came inside as his wife stayed in the car. As I walked out of the room he told me his wife was waiting for me in the car, so I walked outside and saw her sitting there with the door open. I kissed Wade for the last time and handed my baby to her, she didn't say a word, she didn't have to, she had the kindest face and eyes, they spoke for her. She kept him all wrapped up in his blanket and held him tight and I shut the door and watched them drive away. I could see her love for him even though they were complete strangers, I was in awe at their kindness, I felt God had given me this last big gift after the total hell we had just experienced. Early the next morning the husband came and dropped off a card and a gift. His wife had written the card after she returned home, as the time she wrote on it was 5:30 am. Her handwriting and stationary are equally beautiful. Baby blue paper with three little angels at the top. I want to share the letter, even though it is such a private treasure and I would never reveal their names, it was just so life changing for me, you never know how it may impact others as well. Here is her letter.

Dearest Nicole and Wade, When we received the call this morning, I knew I had to go with him to hold your precious "Little Boy Blue". As you placed your son in my arms, I knew how your heart was breaking. Before you came out of your home, I glanced into the Heavens and saw the moon - a crescent moon, and it reminded me of a cradle - God's cradle, and He is now cradling your precious little boy in His Loving Arms - free from all pain. And I rejoiced in knowing that he was now a healthy, happy little boy. No more tears nor pain. I wanted to say something to you - give you a hug, but my heart, too, was to full to speak. So on the way to the funeral home, I held your son close to my heart and told him what a sweet little boy he was and that he had put up such a courageous fight. Oh, he was soo precious in his little tiger shirt and dungarees. I lovingly caressed his tiny hands and squeezed his little feet and kissed his forehead - once for his mom, once for his dad, and once for his sister Lauren, and then I cried - thinking of the little boy he could have become one day. But God had other plans for "our Little Boy Blue" far greater than we can ever imagine. But someday you'll know the answer. Just know that you and your family will be in our thoughts and prayers and forever in our hearts 'cause...We Love you

So I will update next week for the month, because this month there was only one thing that mattered ... well two really. NickyBears 2nd Birthday and raising awarness for Pediatric Cancer Month, September.

So we celebrated his real birthday September 22nd with just the 4 of us, hording our special day away with just ourselves - we wanted it this way because we wanted everyone to focus on the WALK on Saturday.

We got him a few things he loved to rip apart the packages with his big brother showing him how. We bought the new guitar Mickey Mouse - not such a fan of that one shockingly. While a race track kept his attention and a Thomas the Train set because he LOVED the one at E-clinic so much last trip to St. Jude. Oddly the train set when you walk into St. Jude is bitter sweet - Nicky was a baby in a stroller, a very sick baby that could never play at 8 months old. Lines and tubes running from his little body kept him in a strapped in seat our entire 4 1/2 months at St Jude. So last visit when he couldn't wait to rip toys out of the other kids hands ( no sharing manners lol ) we were in shock ... we watched numerous children play with that train set but never imagined that he would one day .... and yes that day came and was a blessing and a stressful sigh while awaiting his clear results. THANK YOU GOD!

So the following day Daddy, like always trumped Mommies efforts of gifts and ran out to get him the REAL DEAL table set .... so spoiled but boy he deserves it! So we played for hours with his new and improved version of a train set. Can you see that face? Thank you Lord - such a Happy Child!

Since we had so many photos from the CURE SEARCH WALK 2011 we wanted to share them all with you .... we had such AMAZING People with us that created such love for this WALK, some we didn't even know ... while I kept an eye out hoping for a few close to us that didn't show .... it didn't matter we were grateful for the ones that were there! They were all blessings to us! I was reminded by my Beaumont at Home Nurse of the story of the "STARFISH", I want to remind you that for everyone that donated, walked, virtual walked, reposted, rallied family and friends to donate and even made lemonade stands .... NICKY is your STARFISH ..... GOD BLESS YOU ALL!

The Starfish Story
Original Story by: Loren Eisley

One day a man was walking along the beach when he noticed
a boy picking something up and gently throwing it into the ocean.

Approaching the boy, he asked, What are you doing?

The youth replied, Throwing starfish back into the ocean.
The surf is up and the tide is going out.  If I don't throw them back, they'll die.

Son, the man said, don't you realize there are miles and miles of beach and hundreds of starfish?
You can't make a difference!

After listening politely, the boy bent down, picked up another starfish,
and threw it back into the surf.  Then, smiling at the man, he said
I made a difference for that one.

If you can not see the video above please click the blue link below.

NickyBears 2nd Birthday - CURE SEARCH WALK 2011 

We will never be able to thank everyone that helped us make our goal for CURE SEARCH WALK for Nickys 2nd birthday - Detroit walk raised $125,879 and the numbers keep rising with donations STILL coming in! .... Our team came in 7th for overall funds $6,265.00 and NICKYS DONATIONS alone came in 5th for individual donations at $3,200.00 what can I say but such massive gratitude to all who WALKED, SHOWED UP, VIRTUAL WALKED, DONATED and PRAYED!!!! ♥ I will post more tomorrow - but I wanted to share this video of our WALK with you. GOD BLESS YOU ALL ...

 

Dear Lord,

GRATEFUL .... simply so very grateful for giving us a birthday to celebrate - for keeping Nicky HEALED ..... praying for many, many birthdays and a health boy to read this one day and see the GRACE of Our Lord, Our Healer .... Our Father. Humbled by the people you have embraced around us when we asked ..... Thank you Jesus!

 

cure

We are only $230 away from our goal if you can any donation will help!

I walk for the ones that will NEVER be able to take these steps for themselves - have you done anything to help find a CURE for childhood cancer? If not I highly recommend being a Virtual Walker - Cure Search this Saturday - I desperately want cures  .... How can you turn this offer down? :)

If you can't make it to the walk - please consider being a VIRTUAL WALKER, its only 10 bucks to FIND CURES .... here is the direct link --- GOD BLESS ! ♥ https://www.kintera.org/faf/reg_new/register.asp?ievent=463211&lis=1&kntae463211=46627FEC317F48C98C1A09C0F4812D3D&jt=4293569&teamsName=Unite+to+Fight

Or if you just want to donate in honor of our boy! Heres the link --- if you can't give anything - prayers are the best gift of all! God Bless!

http://www.curesearchwalk.org/faf/donorReg/donorPledge.asp?ievent=463211&supid=333852343

If anything, right click this photo, save it and use it as your default for the rest of September!!!

Below is our boy a year ago before he started radiation, beautiful and bald.....but no child should have to endure this .... find a way to help find cures.....

Today I woke up, remembering where I was 10 years ago ..... remembering that my 10 year old was just 5 months old .....watching is dismay glued to a television and watching the 2nd tower hit .... crying and walking Christian and looking to the sky empty ... no sound in the air ... no streams of smoke from endless airline flights .... the world changed .... I ran across a teen girl fighting cancer and her blog and I needed to share with you what she wrote today ..it encompasses my personal thoughts and she is fighting cancer herself, what a beautiful brave child to write such a profound entry ....

(This photo to the right is the writer in 2008)

On any day our lives can change.

At any moment, our lives can change.

On this day of remembrance, ten years after 9/11, I feel sorrow.  As television stations show news clips of the destruction of the World Trade Center again and again, all I can think of are the lives. I think of the lives lost and the lives that have been drastically changed by the catastrophe.

In the senseless violence of these acts of terror, I find myself asking, “What can I learn from this?” The answers spin around in my head, making me dizzy. There is so much to learn from this. What I am learning from this is not complex, but plain, simple truths…

—We are mortal.

—Our time here is short.

—Since our time here is short, we have no time for hatred.

—Our purpose here is not to gather and “get”, but to seek out and give.

—What The Media World tells us is important means zippo in the Great Scope of Life.

—We need to love deeply, fully, holding nothing back at all.

(This photo to the right is the writer a year after diagnoses 2009) My heart is with the suffering—those who are grieving a loss– those who are fighting for their lives– those who are helping loved ones fight for their lives. With everything in me, I want to be a building block for change that will relieve suffering.  I want to notice when people suffer and not turn away.  I want to be grateful for all of the people who give me love. I want to be especially grateful for those who are close to me; the people who will always and forever love me unconditionally.

I feel that sharing in the suffering makes us more Heart Aware.  There is a love I have inside me that comes straight from the pain of caring. I would not trade this love for anything.

Please don’t be afraid of the pain of caring; it is great nourishment and terrific exercise for our hearts.

… never forgetting…

--- Melinda Marchiano


I look at this precious girls life and it puts life into persceptive even more than I already thought it did seeing who she was and now even more - how beautiful she is today - now more than ever ....

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