Updates

Christian ( our oldest ) loves holidays - so every holiday is big! We always do decorative holiday cupcakes and his valentines box for school.  I was able to attend his schools party and it was honestly refreshing to be in a normal enviroment with Christian. It's the first time I have been able to go to his school this year. I met his teacher and most the Moms that know me asked the same question, "How is everything?"  It's hard to sum up everything to anyone that hasn't been with us throughout this journey. It's hard for me to convey in words how different everything is now.

We had an extra set of labs drawn on Thursday this week and thankfully we did since Nicholas has been fighting off a viral cold on top of getting chemo.  His ANC was 810 a huge drop since Monday and a slight drop in platelets at 111. So no change in plans and he stays on course with the rest of this chemo. We were hoping his counts would be higher to travel, but they just aren't. He is also still congested, so please pray that is gone asap because they will delay his scan if he is too congested.  He is a natural drummer for sure. He loves beating them on everything! Its great because we know that he is not weak on either side by the way he does it in perfect rhythm. His hair is growing in fast now and even in the spots where he was radiated it is growing in thicker and fast now. All the signs of what he has gone through are slowly being hidden - one less reminder to stare at once his hair completely covers his scar.

Over the weekend Bayside hosted their annual Ice Fishing Derby. The proceeds went to St Jude in honor of baby Nicholas' goal we are trying to meet. I am very grateful to everyone who donated and worked on this event.  Thank you, Shannon told me that they rasied $1,056.00.  I saw a few people I grew up with, Norm G. and Matt B. among other faces .... it was good to get hugs from people that really care about our little guy and some people that did not realize that Nicholas was my son that was going through this. I can't thank everyone enough for coming out for this event. It was hard to get through talking on stage. Thank you Shan for all your hard work.

 

Also this week we got another donation from one of my husbands friends whom has been so supportive through this whole journey and always checking in on us, Kim Calabrese. Thank you for the card .. and check for St Jude your support that is truly from your heart and for the donation.  This will also be hand delievered to the hospital when we get there.

We leave tomorrow for St. Jude - I ask you all to please pray extra hard for our boy this week.  His MRI is Thursday and as you all know that is the only test that really matters. We know that with certainty that this is in God's Hands and in His control.  As parent, it's still very scary to sit and await results so please pray that God gives us peace while we await the results. We ask God to give us NED, clean and stable results. most of you ask how long will these tests keep happening .... for Nicholas every 3 months for 5 years and then every 6 months for another 5 and then 1 a year after 10 years .... I say that because this is far from over and we need you to keep lifting our boy up and praying please.

Last week Jill the moderator for the largest group of parents that had a child diagnosed with the same cancer Nicholas "HAD" asked me to take over the group. She is ready to move on with her life after 13 years of running it and her son is now turning 21 and she knows I am always here for other families and willing to help. The group is called ependyparents. It was there where I was given my son's protocol. I will always have such gratitude for this group because it was there when I needed support and guidances from other families to help us find the right treatment for Nicholas. I kept this fortune cookie paper with me since St Jude .... I loved what it said .... not everything has to be big .... sometimes small efforts go a long way... helping the families and the children is so important ... I hope my son changes just a little part of your heart ... I hope he inspires you ... he inspires me every day.

Dear Lord..... I pray with my whole heart that you keep Nicholas cancer free and that you never allow cancer to ever harm him again. Please God watch over us this week and always ...

HAPPY VALENTINES DAY!  I will start by saying that Baby Nicholas has been is a great mood and playful - AMEN. So it was a complete bummer when last weeks lab (on Thursday) showed that he dropped across the board. His ANC went from 1800 to 700 just in 5 short days of cycle 3 of oral chemo. His platelets went from 185- 104 and his Hgb (red blood) from 11.4 - 10.8.  We knew to expect him to drop but not this much.  WIth Nick ( my husband) being sick all week - he seemed to have passed that along to Baby Nicholas. It's always scary when their counts are low because he has no immune system to attack any infection or viruses. So on Friday being the crazy Mother I am, I called St Jude and requested that they allow a repeat blood check on Monday (Today). They allowed it so we awaited those results for 3 hours today. When our nurse Sue called, she told me his platelets were 135  and he ANC was 1900. What a total shock! WOW cycle 3's chemos are suppose to drop him - so what a blessing these labs were. He sounded horrible last night, congested, coughing and sneezing.  Please pray he kicks this cold without fever, because fever could land us in the hospital for a minimum stay of 3 days.  (We dread having to stay at the hospital again for any reason) St Jude called and told us is potassium was low and we neeeded to start a supplement right now. Recheck is labs Thursday ... ahhh one week away till be at back in Memphis at St Jude for scans.

To the left is a photo of a very special gift I got this week from one of my husbands friends he has known from childhood. She created this heart with hints of gray (Gray is the Brain Tumor Awareness Color) when this piece is placed against skin, it looks gold and gray. (Gold is the Childhood Cancer Awareness Color) Allison - thank you so very much this is precious to me and you are extremely talented.

This weekend a friend I grew up with, Shannon Schmalzried asked us if they could raise money for St Jude in Honor of Baby Nicholas and to try to reach our goal.  We are honored that Bayside chose our Boy, and we are so sad that we physically can not be there because he is too sick and his counts are too low. If you can't make it, please just go to the right of the page and donate to jude from our Honor Page. For those of you whom have donated - I can not ever thank you enough -honestly. To everyone that has contributed by donating your time to the event   - we thank you sincerely. If you can't contribute - pray, pray and pray some more .. pray for a CURE - pray for our little boy please.

We have had a few problems with Our St. Jude page updating on our site, we think that is it fixed. I wanted to share with you what one of my dearest friends wrote on Baby Nicholas' St Jude Tribute page.... The ring to the left she sent me in December and she didn't even realize that this exact verse from the bible is on our website. The front says Faith, inside the ring it says we walk by faith, not by sight.I love this bible verse. Thank you Dana ... I know your always thinking of me and praying for my son.... I love you.
Noah and Luke
Tue, Feb 01, 2011
Today, I wanted my mommy to buy me another Lego set. She said "No, our money can be better spent." I wanted another Webkinz, my 21st, but Mommy said "No, our money can be better spent." Mommy wants a new kitchen - our countertops are yellow and the microwave won't pop popcorn without burning it but mommy said "No, our money can be better spent."

I have $5.00 in my pocket and I love looking through the clearance aisle at Walmart but I am the mommy and I know, our money can be better spent.

This is for baby Mason and every other child who has lost their fight. Cancer doesn't have a cure. But something good will come out of this. One life will be saved because we chose to use our money "better spent." I pray today that each of us consciously makes a decision to think before we serve our own wants and instead looks outside ourselves and considers the needs around us.

The act of giving is an act of life. Selfish living is really an indication of the poverty of our souls. More people refuse to give because of inadequate spiritual resources than because of inadequate material resources. Your money has life in it!! If you use it for God, it spreads and grows and brings dead souls to life.

I want to start off with telling you that the week of Feb 1-7 is National Leukemia week. Out of repsect for the Garrett family - Mason was our focus this week and will continue to be right now. I just want people to be aware of Leukemia week and how vicious this diesease can be ... For our Kendal we will proudly sport "Orange" in the years to come on these dates - but this week was different - we lost another child and so our hearts are with Mason's family right now.

With week while going through the motions of monthly checkups and heading to the Rose Cancer Center I was on the phone and when I pulled in - everything changed ... I saw this sign .... I immediately felt numb. I think I was in such a rush the first visit I never noticed this sign .... what a raw reminder only days after losing Baby Mason ... living at home I am not oblivious to the fact that my son is still fighting cancer - but I don't see it like I did today. I looked at that sign and just paused as the gate pulled back ... I am not sure if I felt denial - I don't know exactly what it was but I just felt sad. I was humbled, nothing brings you to your knees and rips your heart out more than knowing that sign isn't for you - but your child ... It was reality - I assume much like anyone that is disabled and wasn't at one point ... it's a terrible reminder of the truth to see signs designated for you. So in my sadness I pulled it together to get him in and check in ...

Upon checking in, being tagged, bracelet and signing in ... we were called back ... I reminded them to draw labs and that he needed zofran ( to keep him from getting sick) and then they went to access him ... in those 3 minutes it took to access him ... God knew I was weak and needed something to lift me up ... boy did He do just that ... in those 3 minutes my son belted out sounds that would make most parents embarassed - he was screaming and not his normally raspy scream from his left vocal cord being paralyzed from surgery - but a scream I have not heard for 8 months ... a high pitch, beautiful sound ... it brought me to tears ... I honestly stopped praying for his right vocal cord  because I have been so focused on praying for the cancer to never to return that I was in shock hearing him scream.... I cried during his infusion that lasted an hour thanking God ... I just really wasn't sure if I would ever hear him that loud ever again....what a blessing in the midst of so much bad news lately ...

Yesteray also ended cycle 2 of oral chemo and while I felt so much satisfaction throwing this bottle away ... a shipment of tomorrows chemos arrived that day. So buckle up-  into cycle 3 .... his ANC is 1800 and hgb (red Blood) is 11.3 platelets are 185.  This cycle will drop him and in 2 weeks we will be at St Jude for our tests. Please pray for clean scans NED, STABLE all those are perfectly fine to me ... I just want him to beat this and be able to be a normal boy ... he deserves it!

We have children that will be scanned soon .. Luca, Ashlan, Christian S.  and please pray for Ivees, and Errhens surgeries for their reoccurances in the next 2 weeks  ....also please pray for Anna Rose as their parents still sit in PICU making decisions on treatment.

Today I met with parents of a 21 year old that was diagnosed (with what Nicholas had) at age 3, tough road but they have prevailed and push on ... I am so thankful I was able to meet them - hug them and talk openly with them .... as we parted the father looked at me and said, "Keep faith" .... and I turned back at told him ... "Faith is God's blanket ... I keep it close ... "

Another parent of a cancer child whom was lost on thanksgiving day posted this on facebook, though it is a bit brash - it is true and so I thought it was worth posting the ugly truth: 

Congratulations! Your child has been entered in today's drawing. You do not need to enter, your child has already been qualified. 46 will be chosen at random and the prize will be chemo, radiation and surgery, Another 7 will have a choice between a wooden box or a plastic bag for qualifying. Didn't get picked??? See you tomorrow for another chance.

Mind you his point was that every day 46 children under the age of 20 are diagnosed with some form of cancer ... that's every single day and today I read an article that said overall cancer in children has gone up 1% in the last year .... how many more are chosen everyday? Its painful to read things like this ....

Below is a photo while he was getting his infusion, you can see his line in his chest ....

THANK YOU LORD FOR WHAT EVER  IMPROVEMENT YOU HAVE VOCALLY GIVEN NICHOLAS .... WE FEEL SO VERY BLESSED!!!

What a week! First I will say it has been personally challenging with an MRI a few weeks away. I haven't posted because I have just been overwhlemed by so many other children's battles. Today I woke up and got a text at 10am from Charise (Baby Masons Momma)  that told me that Baby Mason went to be with Jesus at 9:30am this morning, Feb 1, 2011. My phone immediately was flooded with texts from other moms that all knew Mason to let me know.  Charise, Baby Mason's Momma is such a spirit filled woman with such grace and yet in the last few days through our texts, she was weak and watching her child's little body be taken over by cancer became intolerable. That was clear when she said pray for mercy and that she just wanted him to be at peace, and I did just that yesterday. He was 8 months old and diagnosed a birth, this is Charise and Michaels only child and I ask you to pray for them and in the days to come.

Another family was scanned yesterday, they do not have a page but the little boy's name is John B. and his Momma Ari and I met right before we left for radiation.  2 weeks ago they got bad news there were 2 new tumors right before they were suppose to leave to go to radiation. They were heartbroken, and I was for them also, it brought back flashbacks of Baby Wade. They went home for 2 weeks and came back to get scanned again and decide their course of action. The new scan showed not 2, but 5 tumors in such a short period that the doctors told them they could do surgery, but that we will progress and won't make it through treatment. They have decided to do nothing, take their 2 year old home and leave it in God's Hands. Please pray for the Barone family ...

Nicholas woke up from his nap and I rocked him and just held him in my arms for about 40 minutes while he slept today... I cried for all the mothers I know who can't rock their babies - I cried for all the children I know including my son whom is still in the fight of their life against cancer. I spoke to my dad and he told me I need to pull back from all of this, my reply was, "How when these are people I love?" The one thing I learned is that the bond we share is like another family, how could I possibly distance myself from my family .... as much pain as it brings me to love these families and these children, they have all brought so much into my life personally and I am so grateful for each of them. So many special moments that are in my heart, I remember the week Nicole (Baby Wade's Momma) took Baby Wade home after they were told there was nothing more they could do.  I remember the following day Charise recieving news that Baby Masonis tumors had progressed and he was rushed to the hospital across the street.  I remember for a week I couldn't think straight and I text Charise crying... I was hurting so much over everyone else I couldn't focus on my son finishing his final round of chemo.  Charise, despite her situation, while they told her that they basically could do no more for her then 4 month old son .... she stopped and called me and prayed with me the most powerful prayer I witnessed during my whole stay at St. Jude with another parent, she prayed for me, my son and our children. I learned so much from her in those days that followed, she dropped off a book to me and she encouraged me to stay faithful to God even after all she was going through she still took the time to comfort me. In my heart, in those St Jude days ... you have no idea how many times we as parents would comfort each other. I remember crying on the porch with my cell in my hands and Jennifer (Ryan's Momma) looking at me and said, "you need a hug?" I just shook my head and she grabbed me .... she didn't realize how bad I needed that hug ... I could tell you so many stories of every family I met there and love ... but this is why I can not turn my back, not even for a moment. 

As for Nicholas, his ANC this week was 1650, hgb (red blood) 12.3 and platelets 185 so everything looks great. He's eating better and is just a joy to be around. He seems to like drinking milk from a straw now which is great but we have to hold the cup to him and he won't drink it out of sippy cups with straws, only cups that spill.  He loves any playtime his big brother will have with him and he is into everything.  We have our monthly doctors appointment this week as well as the hospital for his pentadamine infusion and bloodwork. 

We ask you to pray for a few other children whom have all relasped this week , Ehhren, Ivee, and Austin, they are all children diagnosed with the same type of brain tumor Nicholas had. We also met a new family sitting in the PICU in Buffalo New York .... their pathology is not confirmed but please pray for Anna Rose .... she's 11 months old and their parents only child.... please pray right now ...

I want you all to know that we ourselves are a PARTNER IN HOPE  for St Jude, we would never ask of others, what we are not willing to do overselves..... that means we donate monthly to St. Jude .... we ask with our hearts exposed to join the fight so that children are afforded the chance at life. To the right of this page is Nicholas' donation page - but feel free to become a monthly partner to fight this cause - not out of guilt, but because you truly know you CAN make a difference, this research will one day assure that no child will suffer like this ... HELP US CHANGE THIS.

Tonight when I rocked my son these words came to mind ...I love him so so much ..... he's changed everything about me ... and that I am so grateful for ....

Aerosmith ....

I could stay awake just to hear you breathing
Watch you smile while you are sleeping
Far away and dreaming
I could spend my life in this sweet surrender
I could stay lost in this moment forever
Well, every moment spent with you
Is a moment I treasure

I don't wanna close my eyes
I don't wanna fall asleep
'Cause I'd miss you, babe
And I don't wanna miss a thing
'Cause even when I dream of you
The sweetest dream will never do
I'd still miss you, babe
And I don't wanna miss a thing

Lying close to you
Feeling your heart beating
And I'm wondering what you're dreaming
Wondering if it's me you're seeing
Then I kiss your eyes and thank God we're together
And I just wanna stay with you
In this moment forever, forever and ever

I don't wanna close my eyes
I don't wanna fall asleep
'Cause I'd miss you, babe
And I don't wanna miss a thing
'Cause even when I dream of you
The sweetest dream will never do
I'd still miss you, babe
And I don't wanna miss a thing

I don't wanna miss one smile
I don't wanna miss one kiss
Well, I just wanna be with you
Right here with you, just like this
I just wanna hold you close
Feel your heart so close to mine
And stay here in this moment
For all the rest of time

Don't wanna close my eyes
Don't wanna fall asleep
'Cause I'd miss you, babe
And I don't wanna miss a thing
'Cause even when I dream of you
The sweetest dream will never do
'Cause I'd still miss you, babe
And I don't wanna miss a thing

I don't wanna close my eyes
I don't wanna fall asleep
'Cause I'd miss you, babe
And I don't wanna miss a thing
'Cause even when I dream of you
The sweetest dream will never do
I'd still miss you, babe
And I don't wanna miss a thing

Don't wanna close my eyes
Don't wanna fall asleep, yeah
I don't wanna miss a thing

Dear Lord,

I ask you from my heart to watch over all the families that have lost their children, give them strength to keep going and not allow cancer to steal anymore of their lives. I ask that you guide all of us fighting these diseases with strength and faith. Please God .... give us CURES ... please ....

Today started with a phone call with Nicole, we talk everyday. She said to me, will there ever be a day that the significance of a date will not bring back so much pain.  That question was confirmed today when I looked at the calendar and realized it was the 22nd, Februrary 22 is My Mom, Nicks Father, and My Aunt Nan all share a Birthday, April 22, 2010 I lost my grandmother whom I miss so very very much.... 16 months ago, Sept 22 2010 I gave birth to my precious boy, and 7 months ago, May 22,2010  I received the worst news of my life .... I remember every date of every milestone since then ... I remember the dates of each child that has been taken away from their family this past year from cancer. I read a post this morning from a sister of a little girl named Mary who passed away at the age of 4,  4 years ago today. That letter can be found here, if you would like to read it.I just don't think those dates go away.... they are reminders of God's grace, mercy and to remind us that He is in control no matter what.

Speaking of dates, we have our next MRI date, February 24, 2011.... the anticipation of scans and the anxiety is frustrating and overwhelming ... please pray that his scan is N.E.D. ( no evidence of disease) and that no damage was created from the radiation.  We know God's Hands are All Over It!!!

This week started off with Baby Nicholas being fussy and having no appetite, but that lasted 2 days and he is back to running around and eating again. He has 2 more weeks of this 2nd cycle of oral chemo to complete. His weekly nurse visit was Thurday and his ANC is 1250 and hgb (red blood) 11.3 and his platelets are 180. Everything is going up which is awesome!!! However, since strep throat is going around we still are stuck indoors everyday. We also took him to a local ENT specialist and well, it was funny because there equipment is so out of date and I guess we are so spoiled at St Jude where they have state-of-the-art equipment.  They placed us in some 1970's sound box to see if he could hear, and at St. Jude they do ABR hearing tests where he is sedated and electrodes are places across his head and in his ear canals to measure pressure and sound response to the brain. Needless to say we will be waiting till we go to Jude for tests after that unless he seems like he really needs an ENT here. Below is Baby Nicholas Drumming away on Guitar Hero. LOL

We got great news from friends at St. Jude this week ... Megan P. and Colin T. scans were both great ... AMEN to that! Though we have friend we have never met on this protocol, please pray for Belle M. that her scan this week is great and there's another little one that I have been following for a while now, her name is Mauve and she's a little doll.  She had a bad scan and has relapsed.  We ask that you please pray for her that they will find the right treatment for her.  We also ask that you pray for Baby Mason ... he's not able to swallow now and he needs extra prayers, especially his family for strength.  I ask that you please continue to keep the Lividini family and the Bailey Family in your prayers.

I will leave you with this today, Maggie Cupit (she's in our friends we follow/ st jude links)  posted this :::

In my girl scout troop, we used to stand in a circle at every meeting. Our hands clasped and our faces lit up with smiles and friendship, we would sing the words, "Make new friends, but keep the old. Some are silver and the others gold." I can't say that at that point I fully knew the meaning in those words, but I can say that I'm getting closer to understanding it every day I am here.

There were words she spoke personally in between about someone she found during this journey of fighting cancer herself ... and ended like this,

Leslie is a new friend, a golden friend, a gift from the universe. But making new friends doesn't undermine the ones I already have, the ones that have been with me through this whole experience, the ones I have known my whole life. It only makes them more meaningful.

We have met many Leslie's during our journey .... and thank you God for each and every family we have known and have had the opportunity to love ... but that doesn't mean that the people that have backed us from the moment we met aren't in our hearts always.... it just means that these new friendships are a blessing in the midst of terror, we truly understand each others pain and fear.

Dear Lord,

Each day you give us is a blessing ... I watch my boy running around the house ripping open every cuboard and I thank you for it! It is a joy to have to put everything away every single time.... because he's here ... he's doing so well and we are just so grateful.  Please give us peace with this upcoming scan and keep him cancer free always...

 

P.S. below is a link that you can now post a comment to us on any update... or please feel free to sign out guest book and let us know you were here!

This has been a long rough week on us all. It started with Kendal's funeral all week and on Thursday, January 13th... Ryken passed away... The photo to the left is of Ryken, he was so very precious to me and the moment I met his Momma, she was so stressed holding him and all I wanted to do was be there for them. It's crazy how yet we fight our own battles, yet God gives us the strength to allow others to lean on us. I kept telling Nicole about this little boy who just couldn't catch a break through his whole stay at Jude. I always felt like this family was under my wings. I kept close watch on him while we were at St. Jude and spent time talking with Christy his mother a lot. Ryken will always have a special place in my heart and in Nicholas' journey.

Kendal's services was incredible, there had to have been 800 plus people filling the church halls and walkways because there were no seats left. What an impact this child had in the 17 years of her life. How loved and how her strength has changed so very many people. Kendal, if I could have spoke to you before you left this world ... I would have thanked you for how hard you prayed for my son ... for showing us all to NEVER give up, not for a second, and mostly to trust that there is a reason for all of this suffering. I questioned that last week .... but it's like your mother said that you told her, "My battled had to be this hard for people to pay attention so it's going to be really tough one." I would have hugged you and told you how your faith inspired me and that I love you even though we didn't know each other ... I loved you still.

So he is all over the place walking everywhere, he's lost his appetite from this new chemo drug that's for sure. His counts ANC is 800 this week and hgb 11.0 and platelets 186. So all is well but we sure would like his ANC to be higher. Upon leaving Kendal's luncheon after the service Nick noticed Nicholas' shirt was wet .... AHhhhhhh immediate panic and stress - that meant something was wrong with his Mickey button. Even though he eats - we still use it for all his meds and extra fluid. So we got home and for about 2 hours I was pretty upset that I have to swap this out of his stomach and never have I once seen it done nor have I done it. I asked Jude to do it when I was there but they promised me it would last till we got back. Leneatha .... if your reading this ... I wanted to choke you for about 5 hours and then I calmed down ... we got him to sleep and I swapped it out. Add that to my new doctoring degree and nursing degree list!

Kendra (Nurse at Proton) , this outfit is for you girl! You said we couldn't leave Jacksonville without one and we didn't. I wanted everyone to see how great his lashes came in and his hair! He actually gets bed head now!  He's looking like a healthy boy again thank you Jesus.

On top of that we have now narrowed it down to the "one" sippy cup he will carry around and drink from ... thank you Lord again. He is teething like crazy has like 4 new teeth coming in all at once and 2 upper molars in the back, ouch!

Dear Lord, I ask you to surround the Lividini Family and Bailey's as they have a permanent reminder of an empty bedroom, a voice and laugh they miss and the smell of their child's hair they can no longer smell that they will long for ... please give them strength and help them Lord to remember that our time here is limited, but our eternal life we will be able to be with them all again. Lord, I beg you to keep Nicholas cancer free .... let him remain this way Father ... As Nicole said in a post there are no magic words when a child passes, nothing with comfort what will be missed in the months to come. I pray Father that you keep our boy healthy and well ... and to comfort the families I love with your grace as they are forced to find a new "normal" without their children.

In loving memory, a gift has been made to St. Jude Children's Research Hospital

A gift has been made in loving memory.

St. Jude will continue its mission to find cures and save children because of this generous gift.

For Nicky, with love from Minty, xxxooo

This message was sent to me tonight from Minty ... (Minty's Momma) ... she lost her fight to the same disease Baby Nicholas is fighting a day after her first birthday ... I came home to this donation tonight and one other from Kelly Hale ... thank you so much ... tonight was horribly difficult .... we went to Kendal's viewing ....I couldn't stay .. in fact it is the first time I have been honestly pissed off ... why are these children suffering ... while I know 2 others on hospice I am just flat out upset tonight .... why the suffering - God if you want them, they are yours to take - but why the months of suffering I have witnessed with so many ... I am sad, mad and confused tonight .... I just wish God would direct me to make a mark ...make a difference .... He skilled me to ... help me to Lord...

I planned on updating yesterday, but yesterday was just too difficult for me. At 11:25am my husbands best friends daughter Kendal went to be with Jesus. She fought AML Leukemia a very aggressive cancer for the last 8 months.  She just turned 17 on the 30th of December. I can barely think straight right now. So many people think that cancer is rare in children when its the number 1 killer for children under the age of 20. I am devastated to watch yet another child die to these disgusting diseases. We need CURES people ... please get involved somehow - donate, contribute something even if its time raising awareness. Kendal was a beautiful girl so full of life and love. Her family adored her.  She truly touched so many people and the love she has passed on will forever be remembered by everyone she touched. Kendal, we mourn you and miss you, may you live forever in a place that cancer can never hurt you again. (This photo to the right is of Kendal)

I place this video I pray you watch with an open heart and mind ..... it is special because Baby Wade is in this twice and I sadly say I know more and more of these faces personally now - each one has changed my life.

It's been a long week. We had our first full exam at our Pediatricians office Monday. We went to Beaumonts, Rose Cancer Center Tuesday for Baby Nicholas' pentamidine infusion and the order was screwed up so we were there from 9:30am till 2:30pm. He had the worst reaction to it because his Zofran (anti-nausea meds) were wearing off. He was uncontrollably miserable and I felt helpless. We stayed an extra hour to observe him since he's never been like that before. The rest of the week he has been playing, laughing and just walking everywhere and trying to get into everything. He's eating well, his newest foods include pizza, his Daddy's amazing spaghetti, baked Mac & Cheese, and munchos chips. lol it's funny how he now wants to try everything we eat. His ANC was 900 on Tuesday Hgb 10.3 and his platelets were 165 so everything looks great giving him 2 more days before he started his new chemo.  Friday, (yesterday) we started Erlotinib, cycle 2 of his oral chemo. We had to go to the Pediatricians office to be observed doing this in case he had a reaction. No reaction and so we are now into our 2nd cycle.

I am asking you to please say extra prayers for Kendal's family today (The Lividini Family) and I ask that you please pray for Ryken and Mason. With asking that, I mean please don't just say you will. Stop right now, close your eyes for just a simple moment and pray for them.  I ask that you continue to pray for Baby Nicholas, that God never allows cancer to ever harm him again. I ask that you please pray that researchers find cures, because my heart is so tired of watching so many children dying around me.

This sweater Nick is wearing, my Mom made and it says "God's Has His Hands All Over This!" God may you continue to keep your hands our Baby Nicholas.

Well to start, I hope you all had a wonderful Christmas. It was precious watching Nicholas get so excited over new toys. We are just blessed everyday that we can be together.  Our nurse came yesterday for blood work (Thursday)  and Today we got his weekly ANC count which is 520 - that's as close to neutropenia (low white blood cells to fight infection) and a window we are not uncomfortable in this crazy Detroit weather to take him out in. Tonight he finishes his last dose of oral chemo for his first round to be complete. He will have a week off without chemo and we are so looking forward to that!

Tonight is New Years Eve... and over the last week I have seen or heard of 5 families losing their children and 4 others doing extremely poor.  My heart breaks for those families and yet I keep filling my facebook giving people ways to donate and it's actually disappointing that people read it and pass it up without giving even $5.00 - I guess this is the world we live in.  What I find beautiful is the people that have donated in honor of my son, more than half are complete strangers - how our story falls on their doorstep and heart - I don't know - but I am so thankful for their contribution to St. Jude. I can to a certain degree understand survivor guilt for the first time .... Why God is allowing our son to keep healing and others struggle losing this fight.  I realize in this new world of cancer that we were tossed into - things can change over night.... so I am so grateful for each and every day God gives me with my little bear.

So as we say goodbye to 2010, I need to say a few things .... I never in my wildest dreams would have thought I would be writing on a website I made for my baby boy - never for a moment did I think 2010 would hold the fate that God allowed to be brought to our door.... however Nick and I talked tonight it's been one crazy ride .... one we pray so hard we never have to ride again ever! Along this horrific path God brought so many people into our lives that will always be part of our lives now. Every walk, race and religion... our common bond is a child diagnosed with cancer .... this year allowed us to truly stand on faith .... not to just say it, but TRY with effort daily with our whole hearts to believe God is in control and His hands are on this. It's been a challenging year watching so many people we know not only struggle, but lose this most horrific fight and trying so hard to not question why?  We see children abused on the news and yet I have met families that would do absolutely everything and anything to save their child .... love --- what a powerful thing that has so many facets. Yet it's so unbearable to watch so many children suffer through this process.

Dear Lord,

Thank you for the gift of today, for allowing us to come so very far.  I ask you to please gift incredibly talented researchers with CURES this year. I pray you guide them to the answers that will stop so many children from suffering at the hands of these diseases. I pray that no one will ever have to endure journeys like this. Please be with all the children that we have met along the way and also the ones we have never met ... We are so very grateful to have our Nickybear with us Lord, please please continue to heal him and never allow cancer to every harm his body again. Through your precious son Jesus Christ I ask this of you.

 

Merry Christmas, and Happy Birthday to our Lord, Jesus Christ! I will skip around in the week on this post. This week Nicholas has done really well on his oral chemo and his ANC is 900 so it has dropped since we left St. Jude when it was 1300 to start chemo. Next weeks labs are a good indicator if we will be stuck not able to leave at all or not. We are praying they do not drop too low. We are now set up with Beaumont (the hospital) with Beaumont Home Care. Since he is on chemo and it is so crucial to keep him from getting sick during the next 5 1/2 months, nurses come out weekly to do labs on him and vitals and they fax them to St Jude. Then monthly we go to our pediatric office for a full work up, we also go to the hospital for his monthly Pentamidine IV infusion.

On a different note, boy is he so happy to be home and he just loves his big brothers attention! For there being such a big age difference between the two of them, Christian being 9 and Baby Nicholas being 15 months now - Christian is an amazing big brother and is so careful with him and makes him laugh so much. It is just a joy. This week I have been so grateful to be home with my family. I think of all the families I know at St. Jude and across the country in treatment centers battling this horrible fight so far away ... my heart is with you all.

On Christmas Eve I got a call from a family I love and they told me that they were scanned and that the doctors say that their son doesn't have much time .... Lord, you know who I am talking about .... surround that family please and give them direction with their choices. A new child I had just started following, when I woke up Christmas morning, I woke up to a letter that broke my heart. A 6 year old after a year of fighting a brain tumor had died in the early hours of the morning.

I am attaching her letter because I want people to understand that this fight doesn't stop after treatment, its years of praying for clear scans that are stable..... I ask that you please say a special prayer for a few friends, first our Nickybear, Kendal, Mason, Ryken, Lyssie, Jake, Avery, Megan, Jonathan's family and most of all The Ballew Family, which is why my boys are in plaid.  The shirt Nicholas is wearing was Baby Wades and boy how he is missed ....he's changed me forever, the ornament to the left was sent by his Momma to me - it's Nicholas' 2nd one since I save one every year for my boys ...

 

From Jonathan's Momma::::

Saturday, December 25, 2010 9:33 AM, CST

At about 12:10 am this morning John went to be with Jesus.

I was so sad to see all the presents under the tree this morning.

When my other two woke up, they looked at there stockings and said there's John's can we take it to him?

How horrible to have to tell your children on Christmas morning that their brother is gone.

We told them that the Christmas Angels came in the middle of the night and took John's spirit to Heaven to be with Jesus. They went to his room and his bed was empty. How terrible for them.

They came out and opened their presents, they had fun with their things. I imagine that they would have more fun if they hadn't had the bad news from us before hand.

Even though John was not healed, he is with Jesus, he has a new body and is able to do all the things that he has not been to do over the past year or so.

I held him in my arms when he was taking his last breaths, I loved him so much. My husband and mother were here also and talked to him, gave him hugs and said their good byes.

The last couple hours of his life were spent hearing the Christmas story and watching "The Search for Santa Paws" John loves the Buddies movies so much and this was the new one.

He struggled to breath much of the day yesterday but thank God he never looked like he was in pain. He was and is such a precious child and we will miss him so much.

John truly was our joy. His story is so full of pain and misunderstanding. He is with someone now though, who has always loved him and understood him. Jesus please hold my baby today and care for him, because there is no one in the universe that cares for my son the way you do!

 

Let me start by saying how grateful we are to our Lord and Savior - Jesus Christ! Our first week home! Looking back at the last 7 months, I remember nights being inpatient praying, hoping that one day we would return back to Michigan with our family together. God answered that prayer just as we are about to celebrate the most precious birthday ever, His son Jesus Christ. Brings so much into perspective truly. This week has been emotional.

We finished his first week of oral chemo which will last 6 months. He got sick once, but we seem to think that was due to him eating with chemo.  We are now adjusting that to no food an hour before chemo which is at 9pm every night. So in week one being home Baby Nicholas is completely walking! Stumbles a little bit, but everyday he's growing leaps and bounds. He calls our dog Haley, Hay-yee which just melts your heart how cute it is.  He is communicating so much more! He points to the kitchen and then his mouth, like HELLO .. feed me! It's pretty funny. We are just enjoying him so so much. He adores his older brother Christian and loves playing with him. He's just overall doing great.

We were able to go to church on Sunday and our Pastor called us up to just show the 2000 plus people in there what the power of prayer is and what it continues to do for not only our son, but for us as a family traveling this path God chose us all for.

Everyday I am speaking with the Mom's I know from St. Jude and across the country - we are our own support group of uniquely different women that all have the most painful experience in common, a child fighting cancer. They all know my phone is on and always available should they need me, and I know I can call them if I ever need to.  Today I spoke to Nicole, she said that Baby Wade was contracted by God for a certain amount of days and that she needs to stop researching and looking for answers because his journey and outcome would not have changed no matter what she did. It was all to serve a purpose. God's purpose.

I thought about that, again it brought me back to the first night in ER when God made it painfully clear that we have no control over anything at all really. Once again her statement made me realize that no matter what I do, no matter how much I never want cancer to come back ... this solely is in God's hands as I have said from the beginning. It is however up to me and my family to TRUST God's plan with whatever comes our way. In the last few months I have seen children die, and I have seen miracles that baffle Doctors and they are unexplained medically, we who believe know a miracle when we see it .... yet so many brokenhearted families fight this disease and we don't know why our children go through this. Again I was reminded by Nicole that Baby Wade's life no matter the length touched so many people. With the Internet, sites like my son's - who knows who is reading this and I will never fully know the magnitude of what one little soul's fight going through this means to the people that know us, even if it is from a great distance. I realize that by sharing my journey, I share my son with the world - he doesn't just matter to me .... he matters to so many people. I can't tell you how many strangers have tapped me on my shoulder and whispered,"I am praying so hard for you and your family." I am immediately humbled and I cry with a gratitude I can not verbalize. I have had complete strangers hug me, what a powerful thing a hug is. What I know is that this suffering impacts so many people...I have had distant acquaintances send cards and gifts, I've had complete strangers offer prayer, I watch people in parking lots pass my car sticker that has a St Jude logo on it and says Pray for Nicholas actually close their eyes when they walk by me ... praying? I believe so ....

I hope this Holiday season that you donate to St. Jude the dollar amount doesn't matter - its the gift of life and helping children. I added to our site to the right a Donation for St Jude, it goes directly to them in honor of Baby Nicholas.

Also please pray for Baby Mason ....below are ornaments Nicole made for my tree, one gold ribbon to always remember our Lil Wade and one gold ribbon for Baby Nicholas, thank you for my ribbons!

 

When this journey first started at the PICU - my Pastor (Pastor Jaime) said to me, "save his bracelets and placed them in a jar, so that one day you can show him what he went through and overcame." Since that day I saved all the bracelets I could, this picture does no justice to the profoundness that this image shows. It is the first year of my son's life, each one represents, type and holds for transfusions, chemo drugs, inpatient, clinic checks, surgery dates, radiation and of course the day he was born. I didn't count them because I am sure that a few were taken off by nurses when we would switch locations and so I held on to as many as I could - I can't say they will fit in a jar this table is 5 feet long, but an extra large vase will be placed in his room as a reminder of how strong he has had to be.  Not by choice, but because this path way chosen for him and with each bracelet how many tears I cried for him having to endure this journey.

I am going to start posting once a week now that we are home and doing oral chemo and of course I will post if anything important happens, but now I want to just try to get into a "new" normal life.  The teddy bear to the left is a gift from Trudy and Bob and it means so much because the proceeds go to St Jude. You can find these precious bears at JB Robinson's Jewelers at 12 Oaks Mall - Or if this holiday season you want to donate to St. Jude on behalf of our boy PLEASE CLICK HERE it goes directly to St. Jude in honor of Baby Nicholas. It costs 700.00 a day for one day of treatment for each child to receive chemo ... please people this year - donate and give up starbucks just once $5 or $10 it doesn't matter - please consider donating.

Aside from all that it's amazing to be home with my boys, Christian is just getting so big and I am so thankful to be home with him ... man I missed him so much and my hubby too - though I was lucky enough to see Nick a little more during radiation.

Please say a prayer for our boy, that this cancer never returns and that the next 6 months of oral chemo aren't too difficult for him. Thank you all for supporting us and following us ... like I said we are moving to weekly updates now!!!

To our God, without you we couldn't have gotten through and to our family and friends and all those praying .... thank you and please continue to. We love you all.

Home Bound - at the airport and tired and just ready to get home. We arrived at 12:30pm and it was as if time stood still for me. Things I left undone for 7 months were reminders everywhere.

The new way of life is vividly clear when your refrigerator now holds toxic drugs and your shelves house a place for meds and a endless medical supplies. Please do not think that I am complaining at all, because I am just wanting people to be aware that coming home isn't like living in the Polly-Anna world I use to live in, where almost everyone I know still lives in. It's simply different and I will accept different because I am so grateful I can still fight this disease and cling to God when I am weak.

 

So today is the day --- MRI was scheduled at 9:30am and LP (Lumbar Puncture) to follow. We picked up our boy from recovery and then the anxiety set in .... It's just so hard to sit through these tests knowing that our whole world could change in a single moment again and I pray diligently over our boy that God shield's him DAILY never allowing cancer of any kind to harm him - NEVER letting one single cell go wrong.  I saw Dr. Wright pass me while waiting for Nicholas and she said everything looks fine we are awaiting the final preliminary results. 

So back to E-clinic to wait and Dr. Boop came in to meet with us to just check Nicholas' fiducial (screw) site from last week that was removed in Jacksonville. All is fine with it.

Then what we were praying and waiting for - our amazing Doctor ... Dr. Wright came in and said everythings fine and for a moment we could breath again .. for a moment you see light and hope from this 7 month journey. I can pack my bag and know I will be in my own bed tomorrow. You learn to appreciate things that are so simple, yet we all take for granted.  Part of me felt guilty seeing families I know that are going to be there through the holidays and how tough that will be - but for those families - please know you are always in my thought and only a call away!

We did ore first dose of oral chemo and Baby Nicholas did just fine with it. We needed to wait 30 minutes in E-clinic to make sure he has no reaction to it. So for the next 6 months he will be taking at home oral chemo. Please keep praying for him!

Dear Lord,

Thank you .... thank you will all my heart that I can take my son home and he is healthy .... thank you for the people you bring into my life and let me always be a messenger in this dark path for your glory to serve you and help them any way I can.

We started with Speech Therapy today and everything was fine except that he has an ABR and had to fast for it next and wasn't able to eat or show off the fact that he can swallow amazingly to our Speech Therapist Angie. She said he looked great and told us that we would see her in 3 months.

We stopped into E-clinic for Dr. Wright to give us her blessing before his MRI tomorrow and then off to the ABR (hearing test) - his results were STABLE.... nothing has changed and that is amazing news because the chemo drugs could have still effected his hearing and or the radiation could already have effected him. AMEN ...

Dear Lord,

Tomorrow is our biggest test here ... please God keep our boy safe and cancer free. We met a new family here just starting out this week - keep little Ashlyn in your prayers please. We also saw Eric B. and his Momma Christine needs prayers because the chemo they have been trying haven't worked. Please God give that family the treatment plan they need for their boy.

Our day started with registration and triage, labs and vitals and then off to a follow-up visit with Dr. Merchant. This meeting normally doesn't happen, however since we had issues in Jacksonville - he wanted to meet with us. I didn't hold back when he said I just wanted to touch base after everything. I told him I truly believe that after getting his letter that if the tumor bed was not an issue, then why the change and if it was not compromised then good tissue was. I told him I will never be comfortable with what happened and that I find it disgusting that Dr. Marcus met with me without seeing my son's scans etc. Dr. Merchant said the plans were in-measurable.  I didn't want to start a fight or a debate, but everything in a 12 month old's brain is measurable in my opinion. 

So we went to E-clinic and saw Dr. Dewire and Dr. Wright ....so weird to be sitting in E-clinic again. Baby Nicholas and I were rockin our Baby Wade Gear for the day representing our boy! We love and miss you so very much Lil W!

Next stop was the Rehab Center with all the normal re-evaluations for his Speech, Physical Therapy and Occupational Therapy. He hadn't napped so he was a little fussy but we managed to get threw the day.

So Occupational Therapy with Ashley went perfect and he is doing everything a normal 14 month old should be doing. She said he looked great and is on target. Thank you Lord. We were pretty confident in all his skills that they would tell us this in all his Therapies.

Our next appointment was with Physical Therapy and he once again got the same report - right on track! Praising God! Our Speech was moved to tomorrow.

Baby Nicholas had 2 hours of psychologically testing done - he is completely on track for his age - THANK YOU GOD... I was a little shocked this man kept his attention that long lol. It was boring and he still interacted with him and did everything he was suppose to do. Some of the testing I was shocked they were doing on a 14 month old. Things I didn't know he could do, he did. God is amazing ....

Packing and moving - boxes shipping back to Detroit and packing for St. Jude. so much stuff collected over the last 7 months away from home .... wow 7 months ... we made it though - this journey has truly defined me as a mother, wife, daughter, sister, friend and more. I just am so grateful to see my son's face everyday smiling and happy.

My Dad left with a packed car on Saturday and Nick and I finished up packing the lose ends to get to Jude - We arrived on time on Sunday and the shuttle from Jude picked us up. Wow back the to Jude, back at the Grizzle House on campus at St. Jude where we started the first week of June ... what a bizarre ride this has been ... Lord please watch over Nicholas and keep him safe - let everything be perfect so we can go home....

 

Wow waking up with no treatment - I feel a little lost today but thankful to be done. Nick and my Dad are flying in tomorrow - my Dad is leaving Saturday to drive my car home and Nick and I will fly out Sunday to go back to St. Jude for our week of testings. Focusing on God - my heart is filled with anxiety.

We went to lunch with Auntie Nicole (Baby Wade's Momma) and Lauren (her Daughter and my adopted niece)- it was so good to see them before heading back to St. Jude.

The day started at 5:30am going to Wolfson's Children's Hospital to remove his left back fiducial.  It was suppose to be a 15 minute procedure that lasted longer.  Dr. Heger told me that he placed 2 stitches and that some clear fluid leaked. I was too worried about the time so I forget to ask if I should be worried. They told me that someone would call tomorrow to check on him but he didn't seemed concerned.

Day 30 of Proton ...complete, which means MISSION COMPLETE....and so many mixed emotions to this chapter of treatment..... Annie thank you for doing as much as you could for us .... to our nurse Gina .... you truly were meant to be a nurse and you are kind and gentle with all the children always .. thank you for the care you provided my son, words can not ever express my gratitude honestly.... to Kendra thank you too .... we didn't see you much since we were so early with Gina, but the both of you as a team are exceptional in my opinion and they are lucky to have you both ... (The photo at the bottom is Gina and Kendra)

We got a special visit today, of all days - Auntie Nicole (Baby Wade's Momma) and Lauren (her Daughter and my adopted niece now) came to celebrate Nicholas finishing treatment. I don't know what I would do without my Nicole... words with never be enough to verbalize our relationship and I call her my sister because of the bond family shares, but even then - words fail me to the extent of the bond we have because of this journey. Nothing else will ever compare to this kind of friendship and I have no doubt she will always be silently cheerleader when Nicholas does well - that's the love we have had for each other during this horror. I wish I could fully express what she is to me - but I just simply can not find the capacity to explain it. She is my sister for life and the one person I know understands me the most. They are staying tonight which will be fun to go out with them tomorrow before they head home. For end of treatment the kids get a cake, of course we had to have TOY STORY since my little guy just loves it.

We also got great news from Brandi (Mommy of Megan P.) that scans were stable and in fact an improvement also. We also found out that the chemo is WORKING for little Avery C. and we are so extremely thankful to God for the miracles this week ... keep them coming God please!

Lastly, I leave you with a photo of Baby Nicholas sedated in the gantry.  It's taken me a while to actually post this because it is hard for me to look at. The mask bolts his head into place so that he does not move during his treatments. I am so thankful this part of the process is over because it was so tough for me as his mother to know that every time I walked him back and watched him be sedated in my arms that this process followed me walking out praying. Thank you Lord for keeping him safe!

Day 29 of Proton ...complete! waiting for results from friends and Christian S. got clear scans and test yesterday! Thank you Lord ... holding out for my other 2 friends ...tomorrow Nicholas has surgery to remove one for his fiducials (screws) and I just hope is all goes smoothly ... we also FINISH treatment here ... my heart has mixed feelings on this since we had so many issues down here with our plan changing and our doctor that initial was assigned to us just was never straight with us. Glad to put this chapter to bed but still scared it was not done properly. A lingering comment comes from that conference call where I asked Dr. Merchant if the tumor bed was compromised.... he told me it was never compromised ..... which I have fixated on for the last 4 weeks if it wasn't compromised what was .... in my opinion .... good tissue was .. for 25%  of his treatment and that's just terrifying because he's so young. I wish I was at ease with this - but I am not. What happened it just unacceptable and I wouldn't wish this kind of medical treatment on anyone let alone a baby fighting cancer.

 

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