Updates

Breathing with the good news yesterday and the MRI being NED (NO Evidence of Disease) which some call stable or clear. His Doc emailed me while waiting to get on the plane that his CSF (Cranial Spinal Fluid) was clear. She let us off the hook from anymore infusions ... so relieved!!!! Thanking God today and everyday .... I wanted to share this pic with you after NickyBears MRI and we reviewed the scans he decided to grab Dr. Wrights hand and just drag her around, everyone that knows him knows that you can't say HI without him screaming because of stranger anxiety so this moment was priceless and I am so glad my camera was there! This moment was too cute not to share!

So this was our quickest trip to date at Jude arriving at 8:30am and going straight to the Grizzle House. Upon finishing our first day I saw a man entering the elevator and he had big rubbermaid tubs and so I said to him,"Looks like your moving in..." His reply was, "yeah for the next 4 months..." immediately I knew this child was more than likely on my protocol. So I ask, "under 3? " and he said, "yes 1" ..... His daughter was diagnosed with the same type of cancer as Baby Nicholas and the next day was their first day there. I always seem to find a *new family* and it always gives me great comfort to give comfort to those that are just entering this journey. Lord knows I wish and pray no one had to enter this world of pain ... but if I can just help ease someone's stress a little .... share our journey - than all the typing I do here on this blog is so extremely worth the effort.

I ask you to pray for a few new friends, her name is Willa Rose and we also met Lanie Watkins and Kade Watson ..... all need extra prayers right now.

grbearBaby Nicholas' health is that of a healthy 23 month old little boy and has his temper because we spoil him so much ... but he is a picture of health and to us that is a blessing. Every time we enter Jude we are quickly reminded of how much worse our lives COULD have been and we pray be NEVER have to go down that path EVER again. But going there humbles you all over again, it makes you greatful for so many things even in three months you start to take for granted again. Hearing a child's raspy voice ... I remember not hearing my son for months and praying to God to please heal his vocal cords. Or seeing the endless bald babies and children .... its tough that WAS us!

We were able to go and hang out with Arianna's family and I got to really spend some time with Leticia, Arianna's Mommy ..... I ask you all to pray so hard for Arianna she scans Monday and Lord ..... this little girl needs you NOW please please touch her whole body with your healing hands! Another request for David P. and Aaron B. .... I can't keep up with so many Kids! We also got to met sweet precious Ivee and he Momma Hope ... so glad I got to hug them! Please also pray for Bray and Ivee....

We didn't get to do everything we wanted to do this summer, but over all we had a great summer and we look forward to fall. We did get one trip in to Bay Harbor and we are going to try to sneak that in next weekend before Christian starts 5th grade  .... (wow time flies) He was able to go to an indoor waterpark with his best buddies while we were at Jude.

 

First  things first … MRI was at 7:30am and table time 8:15am …. He just woke up from reecovery and our AMAZING Doctor, Dr. Wright did his LP so she was able to take time to look at his scans –  NED means no evidence of disease … CLEAR …. We feel so blessed to be able to fly home tonight …. So another 3 months of life …. Living and Praying that each scan continues to remain cancer free.

I will give a full update later about the whole trip – but in the meantime please pray for a new little one Willa Rose – its her first day here and the same diagnoses as our Nickybear.  Please also pray for our friends scan little David. P. and Aaron Bell …. GOD BLESS YOU ALL --- we are so grateful for the army of prayer warriors out there loving our boy!

Dear Lord,

 

Humbled by you in so many ways …. Thank you for this GIFT …. Thank you for today!


NICKYBEAR'S 2ND BIRTHDAY WISH .... please join us ...... also please please pray for his scan on August 25 at St Jude ....


If you never had to ....

If you never had to hear the words "your child has cancer" ...
If you never had to live in hospital rooms for days that turned into weeks....
If you never had to see your child wake to a world of deficits from surgery, never the same ....
If you never had to watch your child have lines or ports hang from their tiny chests ...

If you never had to watch massive amounts of poison being pumped into your child's body ....
If you never had to hold your child while they vomit from the same thing that's suppose to help them ...
If you never had to watch your child in pain and feel so completely helpless ...

If you never had to hook up a feeding bag that pumped food into your child's body....
If you never had to hold your child while they sedate them for more tests...
If you never had to watch your child be fitted for a radiation mask...

If you never had to cry in fear of the reality that cancer has no rules...
If you never had to watch your childs hair, eyelashes and eye brows fall out  ..
If you never had to watch your childs body become fragile and small...

If you never had to watch for side effects of treatment ...
If you never had to sit in front of a doctor listing off the deficits your child will have from treatments...
If you never had to live in a watch and wait lifestyle praying cancer is gone....
If you never had to wait for results that could change EVERYTHING all over again...
If you never had to hear that your child relapsed and more medical options may be an option....

If you never had to watch your child fighting to breath because the disease has spread ....
If you never had to hear the words, no more can be done ...
If you never had to watch your childs life being ravaged by cancer ....

If you never had to make arrangements anticipating your childs death ....
If you never had to wonder if today will be your childs last..
If you never had to watch your child take their last breath while you grip them tightly...

If you never had to kiss your child's casket and say goodbye ...
If you never had to mourn the lost of a child DAILY .....
If you never had to write a journal entry about how painful life is without your child....


written by, NickyBears Momma, simply me the author of this world I was tossed into and learned of more than I have experienced through loving the ones around me and loving my son so very much.


If you never had to do any of thee above whether cancer or not, then you are so very blessed!  But for the ones that any of these apply to, I ask you to please consider taking off work, or not sleeping in --- to get up and WALK on September 24th for our celebration of LIFE for NickyBear and show support to the families that have had to tread into a completely different way of life that NO FAMILY should ever endure .... Ask yourself, if this was your child in any of the above, wouldn't you want your family and friends support WALKING with you in this fight? There is something healing to the soul when someone stands next to you during this fight .... will you stand with me? Will you hug me when I cry ... boy I cry ... If your inspired - please I ask you to forward my son's journey to anyone with a heart and compassion. www.nickybear.com

I would do it for you, are you willing to do it for me? If you can not walk, please consider a donation to fund CURES no amount is too small, give up a box of cigarettes, don't go to starbucks, do not buy us a 3 dollar card and stamp or any toys please and WASTE research funding  ..... I beg you to help us fight ..... these children all deserve CURES and no family should have to bury their child, so many of my friends this year have ..... We walk in honor of so many families, we walk with the HOPE that one day the CURES will be found and we will have made a difference .... please join us and register or donate at:

http://www.curesearchwalk.org/​southeastmi/nickybear

This is how we are celebrating our son's 2nd Birthday and praying to God he will have many more ..... currently there are no cures for any childhood cancers - don't be misled! American Cancer Society only gives 4 cents to every dollar for breast cancer ... these are babies that deserve at chance .... 46 children a day are diagnosed with some form of cancer and 7 die each day ...

http://www.jacobsfight.com/images/shoes.jpgMy Great Grandmother and Nickys Grandma had breast cancer - someone asked why I never walked for them, but for this I would .....there is something extremely wrong with a baby, a child having a life threatening illness. It is simply indescribable. It seems like an injustice that out weighs any adult because they simply have not had a chance. People say bald head is a badge of honor, it is not for a baby or a child that had no choice and didn't choose to be a hero and deserved a normal life ... it is simply wrong!

Am I the only one that thinks its crazy that we can land a ship on the moon and clone a human but we have no cure for ANY cancers ..... something is very wrong with our world that we spend 30 Billion for space travel and less that a few million for childhood cancer research ...

As you can see to the right - 7 pairs of empty shoes for today with the number 46 written on them ..... this MUST STOP! 7 families mourn their child taking their last breath today, while 46 families lives are forever changed in just moments, nothing for them no matter the outcome is EVER the same, the overcast of the word cancer will loom over them always .... the devastation is immeasurable. 46/7

http://www.curesearchwalk.org/​southeastmi/nickybear


Event Info:
The CureSearch Walk celebrates and honors children whose lives have been affected by childhood cancer, while raising funds for lifesaving research. You can help us by encouraging your friends, family, co-workers and community to champion our cause.
Event Location:
Rivard Plaza on the Detroit Riverfront

Need directions? Click here for a map

 

Event Schedule:

Registration / Check - In 9/24/2011 8:00 am - 9:00 am
Opening Ceremony / Walk Begins 9/24/2011 9:00 am - 12:00 pm
Fees:

Adult Walker - Age 16 and up: $10.00
The $10 fee jump starts your fundraising efforts for the CureSearch Walk. This amount is tax deductible and part of your overall fundraising total.
Virtual Walker: $10.00
Not able to attend the Walk in person? You can still help raise funds for CureSearch and children’s cancer research! Register as a Virtual Walker in the CureSearch Walk, and you will have access to the same online fundraising tools as a walker attending the event. The $10 fee jump starts your fundraising efforts for the CureSearch Walk. This amount is tax deductible and part of your overall fundraising total.
Child Walker - Age 15 and under: No Fees
Children who wish to have their own fundraising page should register using this participation Type. *Please note, age is calculated based on participant's age on the date of the event, not age at time of registration.

Hi everyone, I hope you all are enjoying a wonderful summer. It's been a while since my last update, either I haven't had time - or when I have, its been hard to consider what I write about. Do I tell you all that I have seen at least 8 children of families I have come to know all lose their battle with these dreaded diseases ..... or do I fail to give any recognition to these precious children that all were taken far too soon.... ignore the pain associated with another email stating ....their child went home to be with Jesus.  Even when I have tried to distance myself and guard myself from the emotional world of cancer, my phone will ring and one of my friends will notify me of another child passing. I sit here and think do I tell everyone about this every time I log on to write an entry? Or do I ignore it and just tell you about how uneventfully great our summer has been? I have a hard time balancing these two very different worlds ..... yet I am trying so hard to focus on my family and be so very grateful to God for each day we are given. Another child we met at Jude Arianna was told no more can be done to cure her, but to buy time. Many of you know that I dive into action when the opportunity presents itself to help - I do all I humanly can ..... some of you probably wonder why I do so much and begging so many times for awarness online .... I do it because its the only way I know how to cope, how to feel like I am doing "SOMETHING" to help anyone else in this mess ....

So I need to name off the children to honor them individually: Sofie M., Anderson B., Frederick T., Julian B., Jed S., Euji P.,George W., Dorian T. and there are so many more but these are some of the children we followed and our hearts and prayers go out to each of families. A second prayer goes out to friends that battle a second time, Luca P., Belle M., and just recently we learned of Brody S. and of course Arianna R., please pray that God keeps his hands on these little ones and CURES them.

Our summer was filled with emotions ... seeing Nicholas swim for the first time was a blessing and he has fallening in love with water now. His laugh is such a JOY to us and he loves torturing our dog Haley by chasing her everywhere.  Can't say the dog likes it, but he sure does! He is spoiled and loved and eats pretty much anything you give him now. He is becoming a true 2 yr old and we are so grateful to God that He allows him to thrive and be healthy. He loves the bubble machine Daddy bought and will chase it everywhere. He still loves Toy Story and its a crack up that he organizes his toys in groups accordingly. One day he threw his pacifer at Nick and that was that, he never wanted it again. Odd,yes ... but great too that he no longer wants it. Christian has had a fun summer and got to see his friends a lot and spent time on the boat and lake with Nick. Skateboarding is his thing right now. The top pic was a trip we took to Bay Harbor and it was our first trip since his diagnoses. It was a good break from the world.

waterboy

His scan is quickly approaching, we fly into Memphis on Wednesday, August 24th and the scan is the 25th. We will post as soon as we know! I ask you to truly pray that he remains cancer free that God continues to heal his body from the year of chemo, radiation and then more chemo ... a parent in treatment asked me what it was like to not be in treatment anymore and its really a great thing to not have to pump my childs little body with poisons anymore, but its scary to not be doing anything to fight anymore. With his 2nd birthday approaching we are reminded that we spent his 1st birthday inpatient with nurses singing to him and giving him balloons and a tiny cake. NO CHILD should ever have to celebrate a birthday inpatient fighting cancer, and so with that being said this year we carefully picked an event CURE SEARCH  that donates 90% of their proceeds to pediatric cancer research .... the rest for marketing the events. We are asking our family and friends to join our team and walk on Saturday, September 24th so that we can help fund this fight - so that my son, and others can have MANY Birthdays .... in lieu of gifts, please donate to this Walk - I will post soon the link for our team. If you can not walk, donate please! We would love to see our family and friends support us in this battle .... we will walk in memory of so many children we hold dear to our hearts.

nickybI will leave you with this haunting thought today .... while I debated what I was willing to share in this entry .... I spoke to a Mother today that lost her son just weeks ago..... her words will remain in my heart to remind me every day that this fight matters and that it MUST be won. She said, "You want to go back and somehow FIX this, but its PERMANENT and NOTHING can be changed, there is just this HUGE void that nothing can fill, the fight is over.... the HOPE ... is gone .... the BATTLE is over." These words are true and HORRIBLE .... I just listened with tears rolling down my eyes .... the only difference WE can make is by funding research, creating awareness ..... and PRAYING OUR HEARTS OUT FOR CURES ....I hope and pray that you do all you can to help fund childhood cancer research and create awarness.

So it's been a true month since I emailed an update though there is one below this that I wanted to announce but not bother everyone. What a month ... 2 months away from another Jude visit, stay and wait .... I have learned so much this month. While today I celebrate my son's 21 months old .... we lost another baby on our protocol. I know I asked for prayers for Ana Sofia .... she is in God's arms today.....I am thankful I got to see her a month ago in Memphis .... I was able to touch her leg and say property of you Lord.....I hugged her Momma and I walked away just defeated from her room .... I just can't comprehend it .... I remember being in that very same room for an inpatient stay .... it was so hard to walk away and I came back the next day to say goodbye.

I learned this month from a very close cancer Momma, that no matter how bad I might have it, and all the stress and worry sounds like a broken record of someone NOT thankful ... I was told by someone I hold dear that lost her child this year, "Remember what life was like before cancer .... it's kind of like that" .... when you lose a child she meant ..... unaware .... I have thought over those words carefully for the last week. I have been so very close with so many families and felt pain over each child, but they were not my children. Did I lose sensitivity to life and this horrible world I was tossed into? - or maybe she was right, as horrible as it all is, the stress, waiting and fear were simply nothing compared to the shoes she has walked in .... that many parents I care about and love have walked in.  I have seen both sides of this coin but still, not mine. I have cried so many tears over the ones that have earned wings, but still they were not mine. No matter how close I was to watching so many parents walk this path ... was I still blind .... "YES" ... it was and is not mine .... and I sounded like I complained over what they would give anything for , one more moment , one more hug , one more breath.... this lesson almost cost me a friendship I treasure .... thankfully ... it did not, but thankful I learned it nonetheless, so time surely not wasted but learned through trying to identify the pain ....

Different levels of pain with the word "cancer" I am not going to throw some peom at you right now ... I HATE CANCER .... I HATE WHAT IT STEALS .... the word alone is crippling in so many ways .... I write here hoping that I might reach out further than the empty screen I write and pour my heart into and I pray that people see the devastation of these diseases .... no child should suffer.

While my son exhibits a look and profile of perfect health I praise the Lord for ... !!!

Doesn't he look filled out from the child that was bald in Decemeber's photos .... we take absolutely NOTHING for granted and we learn daily to accept that we can't change anything .... its all in God's control.

We had an interesting week after removing his Mickey button, she last post. It seems fine until I stared using a little cream to help it ... made it worse and reversed it. So back to nothing and bandaids and its going much better.

So this was the day before Fathers day and we went to eat at the club...he looks chubby right? but really he;s only 26lbs. and only in the 50% for his weight so it isn't crazy its just him without chemo ....

Our lives without chemo .... its hard to grasp but glad its over! Long year .... I ask you al to pray this was his curative and that he never has to go through any of this again .... he's been through it all ... and today .... I just want him to enjoy being a normal 21 month old child.

This was yesterday ...... hes just a ham .... we adore him and while we have moments that scare us still .... we are trying to let them pass without rushing to phone a doctor .... I text with another cancer Momma tonight that lost her boy a month ago ... I told her what my dear friend said and her reply was, "its like you know when you imagine going through it, but then it a million times worse .....its nothing I can describe ..... " So I leave you all with this profound lesson I hope I never have to cross that bridge in my life .... The reality is that I have seen it so much that fear fills my JOY more than I would like to admit and I am trying so hard to give it to God .... it's just harder when you have in fact seen it all over and over and over again ... she said to me he's got to be the one that makes it ...someone has to beat the odds .... she then followed by saying ... the future is not certian for anyone .... even the "cancer free" the healthy ..... try to enjoy it all ....

So today .... 62 days away from Judes cold halls .... I an going to be HAPPY .... I will thank God ..... A special prayer for all the families that lost children year to date .... and a special prayer for the new ones that will arrive and enter this world soon that will be healthy and well .... Today was a BLUE ribbon celebration for my friend .... I love you my sister ....

Thank you Lord ... for lessons ... can you make them easier to learn? Please bring CURES ... watch over our boy and heal him from treatment .... never allow cancer to touch him again.

Thank you for praying and loving us and our son ... following his journey because you follow more than our boy ... I have dragged you into a war that we fight by praying and sitting through results for so many children .... let us all grow from this .... In Jesus' name ...

AMEN!

Still feel like you NEED to do SOMETHING ... donate to the right it goes to St Jude .... GOD BLESS

It seems hard to believe we had a scan just 3 weeks ago. You all know me and every word in those reports replays in my head from the priminary reports to the final scan reports. I try to not over read their vague answers to certian things they deem notable. So upon leaving St Jude, Nick and I agreed if Nicholas did not lose weight and we stopped his bolus feeds through his Mickey Button (g-tube) that we would remove it. So Friday morning, June 10 at 1am we removed it. It took less than 5 minutes for me to remove it. He isn't too sure about having the bandage on him as you can see in the photo, but its been a year exactly since the tube was placed. Brings tears to my face these small victories .... a whole year exactly .... when I pulled it I didn't even realize the date was the same date we were inpatient over night at St Jude from having his line and g-tube placed. I can't tell you how nice it is to see him without having to wear a onesie to cover it from his grip! That he will be able to go swimming for the first time in his whole life this summer .... any cancer mom that has had to walk the path of their child losing their swallow can relate to the fact of how incredible it is to watch him eat! I cried throwing away the rest of the feed bags and packed up the food pumps to ship back to Jude .... so many times I never knew if we would reach this goal ... but we have by the grace of God ..... I have so much more to share with you about being back home without chemo schedules ruling our lives .... I will share more when I have time .... but for now I needed to share this blessing with you all ....

I also am asking you to keep praying for Baby Sofia (she is in the video I created below) .... shes back inpatient again at St Jude and shes in so much pain, please keep praying for CURES ....there is NOTHING more crippling to me than the word cancer .... a word that is vicious and unforgiving .... a word that destroys HOPE and futures ... a word I pray will have a CURE ......

Dear Lord,

I am so grateful that you have allowed our boy to be able to completely eat on his own without needing anything anymore.  HIs Port is the only thing that remains and we know that it must stay until he is done with that also... in your perfect timing ..... this year has been a struggle Father .... I have seen so many babies I love die ..... please surround those families and give them great strength .... Odies Momma just lost her son ... please be with her and please allow our boy to remain cancer free..... touch all the children at St Jude .... you are the great healer Lord.... please watch over them all ...

What a week! I have to go backwards because as you probably already know I wanted to tell everyone about NickyBears scans and that they are stable. So let's start with Sunday - We missed our first flight going to New York for Celebrity Apprentice's season finale'. I was in tears and so stressed because it was becoming increasingly apparent that Baby Nicholas' stranger anxiety was times ten in public. I called the St Jude rep and they got us on the next flight into New York. what a complete mess trying to juggle a really traumatized child and strollers and bags times 2 because we had to have toys, diapers and food for an entire week at Jude. We finally arrived and he did not sleep so I was hoping to get ready while he napped but I had asked Kim (Christian S.'s Momma and her Momma ((Momma T)) to come see us.  While it was great to see them, he slept and showed me just the tip of how fussy he was going to be with new people. It really stressed me out because we lived in Jacksonville with them and we visited together the whole time we were there and Nicholas was fine with them, but did not remember them: ( .  This goes to show what 6 months of isolation on oral chemo can do.  I do not regret being so protective and cautious with him though because we did remain without going inpatient the entire time! We also got a visit from Mei Lai (Minty's Momma) she played a specific role into getting into the group (ependyparents) of parents that dealt with the same diagnoses as Baby Nicholas and that led me to Tamiko, Colin's T.'s Momma that gave me our protocol. So It was worth the rush and fuss to get to hug one of the most amazing women that helped me while she herself had a daughter battling this disease and treatment was not working. Some of you remember me mentioning her and when she lost Minty the day after her 1st birthday..

As you all know, Mr. John Rich invited Nicky and I out there and in my heart I thought there must be a reason why so I felt like I needed to do everything humanly possible to help aid him using the video to honor the babies of the brain tumor protocol, even if I had to fly to New York on my son's diagnoses date. I was mostly sad that we couldn't go inside because the loud crowd was upsetting Nicholas. We sat in the hall to watch it. A short story while I stood outside of the theater moments before John Rich won .... 3 NBC workers were sitting outside with me and my son and saw Marlee's footage - I must say it was moving .... one man said  wow - how can she not win right? - then shouts to me with my back to him and says what do you think? I said, " Well I am a bit bias since I am a St Jude Mother .... I said I would love to be dealing with a hearing deficit where all i needed to do was teach my son to sign, (most people don't know, I speak sign language because I am hard of hearing in my left ear and was told I would probably lose my hearing completely, I NEVER DID and hear just fine) but instead my son is fighting a disease that has NO CURE and I have no peace with what the future may bring ..... I said tonight a year ago today, May 22, 2010 my son was diagnosed and my whole life changed ... and now I am sitting outside a theater with so much hope in my heart for the 41 families that I have releases signed for that the video would honor their babies. I struggled with coming and then never got a chance to even thank him personally for writing the song. I told the man - St Jude gives away hearing aids to any child fighting cancer from anywhere in the world that is deaf or has hearing loss regardless of insurance - most children receiving chemo or radiation for a brain tumor have hearing deficits so while  both charities are simply amazing .... we need cures more than anything!

I was sad NBC did allow the footage from the video to play - but mostly I was sad the words of the song were modified from a song written for St Jude and even more so I was so sad that while a whole choir was on stage signing not one of the 5 St Jude families were shown  ( I for obvious reasons could not be), but I felt guilty that charity dollars were wasted to bring 5 families there  and not one of the children were shown on stage and John Rich WON! Even little doll Colin stuck it out with his cowboy hat on and he was so so tired, bless his heart.

One of our founding fathers (Abraham Lincoln) once said "No man stands so tall as when he stoops to help a child", John Rich, you are a giant! Congratulations! We wanted to thank him in person, but that never happened.  So off to Memphis we went. The flight was stressful, we got into Jude mid day and so I strolled Nicky over ... it was quiet and the halls echoed memories of the people I love and little faces I have lost during the last year. It was an emotional walk filled with sadness and tears and pain. I could vividly see moments replay in different areas of the hospital. Then I went to see Sofia C. her Momma inpatient and she said they were being sent home on hospice.... I was just so broken leaving her room.

The next morning Tuesday, we went to the Kay Cafe and I fed Nicky his normal eggs, toast and milk .... while sitting there I heard a blazing reminder ..... I heard the sound of a feeding pump - the same pump Nicky had.... I put my head down thanking God that I can feed my son, because there were so many times filling bags with formula I never knew if he would ever be able to eat again. That sound brought back so many memories of waking up to those beeping sounds for 4 months. We tried to get through appointments but everything was stressful because he would just scream when he saw new faces and would not comply. We realize this is our biggest obstacle to overcome! Have I mentioned how amazing God is? This day marked a year since the cancer was removed from my precious boy!

So Wednesday  .... you already know the details of the run around of the MRI day we had from below (LOOK I ADDED THE PHOTOS) .... it was a crazy emotional day, if not see below last post. Then Thursday came and he had his ABR (hearing test) I knew that nothing had changed because I can't sneak out of a room without him hearing me.  The results came back and they were stable and actually some improvement with the tubes we had placed in March. So then off to eclinic to see our Doctor. She had us escorted back to the review room for MRI's this made my heart stop.... but she said I need to show you this because this report would scare you because you understand words most parents don't. I was grateful she showed us because she was right - I do understand this so much more than most do. That report would have given me heart failure! So, she placed his scans back to back .... then she placed the one with the tumor and the one we just had next to each other .... she said this makes you appreciate the last year of everything you went through doesn't it! YES INDEED.... it was overwhelming to see the difference ....

We went to Med room for our monthly infusion of pentamidine and when we finished the room was filled with balloons, our doctor and our nurses singing "Our patients have the cutest S.M.I.L.E  Our patents have the sweetest H.E.A.R.T.   O, we love to see you everyday, But now it's time we get to say, PACK YOUR BAGS GET OUT THE DOOR, YOU DONT NEED CHEMO ANYMORE"..... we were officially done!  We come home as a family, to celebrate are small victories in this world of cancer and we are so grateful for the family and friends that really allowed your hearts to understand this journey ... a year ago this weekend was after his surgery and our son was coding (which means code blue - possibly dying)  and having upper respiratory failure, he couldn't breathe on his own  - I remember throwing my body against the wall and falling to the ground crying while all the PICU staff rushed to his aid. We didn't know if he would make it after surgery watching monitors beep ....I remember a phone call to my little brother and my heart stopped when I heard him at a party on a boat with loud music while my world just totally stopped.... it was then in that moment that I realized - some people get it and some people don't .... some people followed every journal entry and some people read none. Some left messages even if I couldn't return them, I knew you were with me. Days when I could barely get through, some of you prayed with me or for me.  I would get random texts from friends and I would tell them to read this site and they never did ... some whom were distant friends, some not really friends at all .... but they loved us and prayed so hard when we needed it most ... you know who you are - we communicated through it all -YOU WERE THERE - TRULY THERE and we love you all so much for your support .... in this year real friends stepped up, people we thought would be there weren't .... we learned a lot ... we learned what was the most important and what truly does not matter .... please never stop praying - as I have said before there is no cure for what my son and many many babies and children endure and our doctor said the pharmaceutical companies can not make enough off of childhood cancers so no one funds new drugs and some that work are taken off the market because no profit is made from them. Do not be confused that American Cancer Society DOES NOT help pediatric cancer truly .... they just don't give enough ... please please when you have it donate to St Judes. It on this site to your right ....

GOD BLESS YOU ALL .... please pray for Baby Nicholas ... pray for all the kids ... pray for Sofia C. and Thanking God .for Luca P.'s clean scans and please pray for Kylie O. and Ashlan B.  upcoming scans.  PRAY FOR CURES .... thank you to everyone that changed their profile pics for this month - it mattered to us and it meant you helped create awareness .... thank you... from here on out - I will be posting probably bi-monthly or monthly .... or if there is a reason .... but not weekly as treatment has finished !!!!!

Dear Lord .... THANK YOU FOR ALLOWING US TO FINISH TREATMENT ... as Nickys Momma all I wanted was to know I did ALL I could and the rest I put in your PERFECT Hands .... Your will Lord .... and I pray and pray and pray your will is to let my son live a long life .... please Father .... bring CURES ... gift researchers ... PLEASE .... thank you for healing our son and continuing to heal him ....

Wow where do I start.... first the important news .... he had his MRI scheduled at 8:30am ... prep at 7:15am - we were told yesterday that our time changed to late noon and it of course was upsetting trying to figure out how to keep him happy without eating all day. The scheduler asked me to stop by to pick up a new schedule. I headed over and saw another family and a child in a wheel chair that clearly was pumped with massive steriods, so swollen it was heartbreaking. I asked the mother if she was there to get a new MRI schedule, she said yes. I asked what time, she said 7:15am. I responded you took my time slot, but thats totally ok. I felt so humbled looking at this little boy in such a poor condition. She said she was so sorry, I know its hard not to eat that long for a baby. I responded, please don't apologize it ok, he can wait. I then asked her sons diagnoses. When she said DIPG my heart sank and I realized then that at Jude when a schedule changes, there is a very good reason for it. I will never again question a schedule change. The severity of his condition was heartbreaking. So a few hours later I got a call from the schedulers that told me that we had our initial time back and that the emergency scan was canceled because the child was too sick to scan. While I as glad to take that spot back, I didnt want it knowing another child was so very ill.

So scan for the first time was on time! Yet never have we ever waited longer for results. He was in recovery by 10:30am and we got him at 11am. Our primary doctor was so busy we could not hunt her down for results. Everyone knows that Wednesdays are a bad day to scan because its tough to get results, docs are in meetings all day. So we met with Dr. Merchant that said he looked at the scan and didn't see anything, but we would have an official report by tonight. He said now everything gets easier since your treatment is done. (I dont understand that, these scans are enough to kill a horse the anxiety) So we left with still no answers. We waited till 3pm still nothing. We went back and when I'm stressed, I sleep. I woke up at 5 and went back to the hospital to pick up pedialyte for tomorrows hearing test. E Clinic was still open and so I asked if they saw Dr. Wright - they said not all day. 2 minutes later the scheduler popped her head out and said Dr. Wright was back there and to wait .... I was numb because Nick my Rock was not there! I called and said get your butt back here! She never came out which would scare anyone, so another nurse practitioner walked out and Nick asked is Dr. Wright back there? She said no. We were told to stay here so she called Dr. Wright and we were told she would call us.

A few minutes later my phone rang and I had Nick answer it since I was maxed out! She said it was a terrible day and that everything was NED (NO EVIDENCE OF DISEASE) That means clear !!!! CSF (Cranial Spinal Fluid) Clear of cancer cells. Long breath .......she also had no clue the schedulers were telling us to wait, she felt bad about it but she didn't know. As we walk into the Grizzle House a tornado watch sent us all into the stair wells! This is becoming a new habit while we visit Memphis. I will report back with the rest of the details later .... but I just wanted to tell you the 8 hour wait really stunk and I know people wait days ... we are just so spoiled at Jude and our Doctor. Thank you all for your prayers .... you have no idea how grateful we are that we FINALLY get to come home no more chemo or meds and just enjoy our family for the first time in a year!!!!! We can't wait to be somewhat normal -though our normal is very different we are embracing and new normal and praying for scans to remain cancer free always. To the ones that read our updates and truly have been with us through this whole journey - THANK YOU SO MUCH you have touched our hearts and we know who you are .... We love you ...

So I want to leave you with this .... below is an image of the tornado that came in this trip ... this bridge is outside of the hospital. To the right you can see a paramid shaped building - our building is just behind that building where we were while I typed this message to you .... CRAZY RIGHT???

Its been a crazy few weeks, lots of emotions .... Last Thursday the 12th his labs actually went down ANC 1240, hgb (red blood) 11.1 and platelets 162. It was a decent week, but it came with emotional pain as we lost another child on our protocol. I woke up to a text that said, J.W. got his little wings and is now in a better place. As you can imagine, this is not the news you want to get to start your day .... though he was on hospice and the reality was there, the thought of that Momma not able to kiss her babies sweet head heart my heart into pieces.  I cried most of the day as we had lost another St Jude child the night before named Claire.  John and Claire both fought the same type of brain tumor and later that day I was then hit with more bad news that I was unaware of, Sofia C. in the video below from my protocol was inpatient and relapsed. The disease had spread to her little tummy, lungs and kidneys. I kindly ask you to pray for Claire's family, for John's family and for Sofia's family..... what a rollercoaster the land of cancer is.

Some of you know that Baby Nicholas and I were invited out to New York for the finale of Celebrity Apprentice by Mr. John Rich whom is in the final two. I was a bit hesitant to say yes since the date of the show's live taping is May 22, 2011 exactly a year ago from the night we sat in ER and were told he had a brain tumor. But God has a plan .... and I can't let the date cripple me, or my efforts to advocate for the littlest soldiers fighting diseases and enrolled into a fight that they never deserved. I have begged you all everyday to change a simply profile photo on facebook to help create awareness. Thank God we have such AMAZING friends that love us and our super trooper. I may sound like a broken record, but every persons profile changed helped reach people that don't know what that grey ribbon means.

We had our weekly labs, it on Thursday May 19, 2011 ANC still isn't moving so ANC 1200 hgb (red blood) 11.1 and platelets 187 so everything except his ANC is moving up. After a moody 2 days from this chemo I called Nicholas' primary Dr. Wright and so last night she told us that missing the last few days in the grand scheme of things and a year of treatment to just stop chemo, So NO MO CHEMO as they say at Jude. It was an overwhelming feeling throwing away the rest of it and getting rid of the toxic materials to use with it. It was such a mixed day of emotions since Nick went golfing and called me and said, a year ago on this Friday was when I was playing golf and we ended up in ER .... my heart sunk .... I hate giving any power to these dates or moments ... but it makes you replay them and the numbing reality of the year replays.

We are headed down to the Westin and Metro Detroit airport to crash for the night since Nicky and I fly out at 7am we thought it would be fun and easier to just stay there.  So Nicky and I have a long day and night with NBC --- Please watch and let's pray that john Rich wins more $$$ for St Jude. Nickybear and I will fly into Jude the following morning so our visits start Tuesday .... Please pray for safe travels, and stable, clear scans that are Wednesday the 25th, his hearing test remains stable no change and that we can fly home in peace on Thursday night and breathe a little lighter ... GOD IS GOOD NO MATTER WHAT !!! Pray he gives Nick and I peace while we wait for the results ....

Please Jesus keep our boy cancer free.

Thank you all for following our journey, your support is so greatly felt!

Below is a pic from Nicholas' official St. Jude Photo Shoot .... it was 3 months ago so he is littler ... lol my sweet little man!

Our week off from chemo was great, and with that came our weekly labs ANC 1200 hgb (red blood) 10.8 and platelets 155. We had our monthly hospital infusions a Rose Cancer Center at Beaumont Hospital. We also had our monthly pediatric appointment. Nothing to report thank God! Thursday our fedex package came holding in this box our last round, cycle 6 of oral chemo that was started Saturday May 28, 2011. Mixed emotions starring at that box .... we are 28 days away from NO MO CHEMO!!! That's slang used at St Jude with the kids. Its exciting to be done, but its scary to feel like we are doing nothing soon.

The first week on this wasn't too bad, and I apologize for not updating sooner. This is a stressful time of year for me, a year ago is when Nicholas starting showing symptoms and I seem to find myself replaying everything leading up to May 22, his diagnoses date. It's emotional.  To top it off, out of all the holidays of the year ... Mother's Day and the idea of so many AMAZING Mothers I have met, loved and call my friends lost their children this year to cancer. Not only did some lose a child, some lost their only child. I can't help but mourn for them, I wish I could just focus on me... but God just created me to wear my heart on my sleeve and I can't help but hurt for them.

Christian picked out some beautiful flowers for me from him and his brother.... he made homemade cards for me from him and his brother lol - too cute.

Baby Nicholas has finally gained some solid weight and hes eating great. He loves it outside so much and chasing the bubble maker machine daddy totes around the lawn.

He's active and loves to play hard and cuddle! His new favorite movie - TANGLED lol when they show the glowing lanterns for some reason he goes nuts. Though nothing will replace his all time favorite Toy Story 2.

I just want to take the time to thank each and everyone of you that for the month of May have changed your profile pictures on facebook to promote brain tumor awareness. It means so much to us and that small gesture makes these diseases known and they are so desparately under funded. As great as American Cancer Society is, they only donate .03cents to every dollar they donate to breast cancer.  So while each adult cancer is all funded more money that ALL CHILDREN CANCERS COMBINED .... please if you are donating for the children make it St Jude.

Please cut and paste this link and add it to your facebook page as a comment.  

http://www.youtube.com/watch?v=HAujS_MRnWQ

Or  http://www.project467.org/

If you don't watch Celebrity Apprentice, please watch the next 2 episodes, John Rich is playing for St. Jude and who knows maybe my video of all the babies might pop in there.... I gave him the rights to use it to promote the song he wrote and all 42 parents did also.

So Last Thursdays labs were ANC 1410 hgb (red blood) 11.0 platelets 156 .... Please pray for our upcoming scan May 25, 2011. We need all the prayers we can get for a clean scan ....

Dear Lord,

Please watch over our boy ..... keep him healthy, safe and happy .... please Father never allow cancer to ever harm him again. Please watch over all the children fighting these diseases and heal their bodies. Please be with the families that have lost children this Mother's Day and comfort them like only YOU can. You are the creator of ALL things ... Lord please give researchers CURES .... and Father thank you for Little Davids scan last week being NED. (NO EVIDENCE OF DISEASE)

I will leave you with a funny pic of my boys ...

Baby Nicholas has been much better in the last few days.  His counts on Thursday ANC 910, platelets 150 and Hgb (red blood) 10.4 so tonight is his last dose of cycle 5 chemo.  I have such a sense of relief when I get to throw away bio hazard bags that once held chemo. He will have a week off of chemo for counts to recover and then we enter into our last cycle of chemo. I can't believe how quickly the last 5 months have gone by ..... this time of year gives me anxiety ..... I lost my most wonderful grandmother 2 years ago today and I miss her so very much. She and I shared a beautiful relationship and I will cherish my memories of her always.

It been an interesting week. Some of you may have seen the video I created below. Mr. John Rich contacted ALSAC, which is St Judes fund raising department and asked if he could legally use my video. How crazy is that, but what a blessing !!!! So he had to remove it from his site until all the parents give approval for him and St Jude to use it. Crazy I can see I was just a vehicle in Gods plan for it to get into the hands of someone that will reach far more people than I ever could.

So we were blessed today "AGAIN" by someone who has really followed us through our journey .... who has gone so out of her way so many times .... thank you so much Kim for sending these adorable baskets for the boys. Christian used his for the egg hunt at church and God willing, next year Nicholas will use his too!  They  were thoughtful and precious.... thank you for your friendship and for caring so very much. Even your kindness has changed me ... I just wanted to thank you again.... it has meant so much.  It puts so many things in perspective. Thank you.

This was Baby Nicholas Easter Sunday outside, for a moment my heart was happy taking him outside and then I realized it was so bright he needed a hat. I went in and grabbed a hat, the hate made me stop and fall to the ground .... it was a gift given to us from the Bailey Family (Rykens Family) I couldn't stopt thinking about all my friends that lost their children.  Another holiday for families I love  to "GET THROUGH", its wrong .. and we need cures... it was hard to be happy when I realized this.

My week got worse, the following day a precious 2 yrs old in Miami that was on my protocol is on hospice and I found myself begging God to help ..... not even 24 hours later .... a mother from my group emailed me on Easter and I told her to call me ... she's ready to give up and today her meeting with Neuro - Oncology left her posting only that they are too going on hospice .... this is a child under 5 ....my mind is spinning and God is protecting me from getting upset over Nicholas .... but I am in prayer and I ask you to be in prayer for John and Euji ..... I don't understand how many babies I have watched fallinto the grips of cancer and MOST do not win .... the statistics are just not accurate ... too many children are dying and so many people will read this and say I will help ... leave the page open and do NOTHING .... maybe the next time I post we lost anyone precious baby you might, just maybe donate. This is not intended for the ones that do, but people I love haven't taken two minutes to undestand this .... Its upsetting .... I just want these chidlren to have a chance and I will advocate for the rest of my life .... please people the word HOSPICE and babies it so wrong ....

God,

Grant my friends the wisdom to make choices no parent should make .... please father have mercy and if you will provide miracles .... we know you are ABLE.... please Father .... please watch over these families.

Ok so I wanted to clarify the post on facebook last night. I was drained and really upset. Baby Nicholas has been a little fussier in the last 3 days and he's been chewing on his hands, which makes me think he made have a few new teeth coming in though most are in. However his appetite hasn't been great probably due to chemo catching up with him. Last night he was super tired and we gave him his chemo ( he is normal asleep when he gets it) about 5 to 10 minutes after that he was screaming and inconsolable arching his back.  It's frustrating because he can't tell us whats wrong and so it put me in tears and Nick and I were both stressed out from it. He finally fell asleep and slept fine and woke up feeling fine ... so .... please pray that was a fluke ... and that it does not happen again.

God Bless you all .... thank you for being such great friends and caring so much .... please also post this link on your facebook accounts ....

http://www.youtube.com/watch?v=v3MVieTrzxo

May is coming up and its Brain Tumor Awareness Moth and we need people to see this video to understand the impact of the families that Brain Cancer affects ... Please cut, paste, post!

We want to let you know that Megan P., Luca P. , Ashlan B. (all SJYC07 protocol kids) Maggie C and Mia R..from our St Jude friends all had great scans this week! Praise be all the GLORY to GOD. Please take a moment to watch the video above and John Rich will be performing this song at St Jude in Memphis on Celebrity Apprentice. You can download this song for $1.29 at ITUNES and all proceeds go to St. Jude so please purchase it. You can purchase the song by clicking PURCHASE NOW. I will also be leaving a link on the right side of our site for you to purchase it.  Also Baby Nicholas is in it and so is Nick wearing the hat covering his face.  This video is also now on Http://www.JohnRich.com God Bless you John Rich for putting my video up of our babies!

 

This week Baby Nicholas wanted to go outside and boy he LOVES it.  It was nice enough and so his Daddy took him out. He loved the wind blowing in his face and it was like someone was stabbing him trying to get him to come in.  He is soooo spoiled but we wouldn't have it any other way. Yesterdays labs his ANC is 1112 and his platelets 175 and hgb (red Blood) 10.4 all dropped but not terribly. He has one more full week on this chemo and then a full week off.  I was really bummed when I bought him an outfit for Easter not realizing it was his last week of this chemo that drops his counts and not realizing that it may not be safe to take him to Easter Sunday at church.  This past month our church now offers LIVESTREAMING video online and on IPhones ... its amazing --- I don't have to miss church ... was a blessing. So let me invite you to church this week .... here in the link -BRIGHTMOOR LIVE- the services are at 9:30am and 11:15am. 

Overall, I am so greatful for all the great scans at Jude.  In the ependyparents group I run we've had a bad month. at least 6-8 children have all relapsed.  I won't name them all because some families are not Christians, but that doesn't mean we can't pray for the kids right? So please pray with me for the families facing some hard choices with limited treatment options. 

It was my husbands birthday yesterday and we celebrated it at home quitely. Happy Birthday to the Greatest Husband in the world .... (and he's the best cook too lol) We love  you Baby!!! Please continue to pray for our scans they are now 6 weeks away .... we what to thank everyone who takes the time to know how we are, the follows our updates and that really truly cares ... we know who you are ...

GOD BLESS YOU ALL ....

I need to take a moment to update you on children and families that I have asked you to pray about. I woke this morning to a message from the Thayer Family.

::::FROM THE THAYERS Jalen Thayer, our first born son, has met his sister in heaven. They embraced in a hug which is still going on right now and forever at 7:22pm.

I can't help but close my eyes, cry and envision this embrace between the two children, though with pain of knowing that cancer has taken a second child from this family just is disgusting to me. Please pray for this family, they will need it in the days to come.Here is his site Jalen Thayer

I know I repeatedly sound like a broken record filled with sad news, but its so extremely important to help when you can - do whatever you can ... make an effort to change the face of cancer for children, PLEASE!

"Each of you should give what you have decided in your heart to give, not reluctantly or under compulsion, for God loves a cheerful giver."--2 Corinthians 9:7  -click here to donate-

I am thankful to God to report that Kelly C. (aka KK) , Colin T. , Avery C. , Seth B. , Angel M.,  Isaiah P. , Tyler B. (all on our protocol friends we follow)  all had clear scans - thank you Jesus for these blessings. Our friend Megan P. that is scanning next week and our friend Mia R. scanning today please pray for great results.

We left off with Friday labs and infusion at Rose Cancer Center. His ANC 2100 Hgb (red Blood) 11.2 and platelets 192 and the infusion went smoothly. We started cycle 5 on Saturday, April 2, 2011 and what a difference between the two chemos. This is his finally cycle of these two drugs.  His personality is crazy, he's happier and sillier and more playful and just overall is doing great. His hair is completely in and if you were to see him you could not tell at all what he has endured and still must endure.He runs like a crazy child through the house and babbles in foreign language lol. He's amazing! I thank God everyday for him and I pray over him daily begging God to keep him cancer free.He had labs today, and he is already dropping ANC 1300, Hgb (red blood) 10.8 and platelets 179.

As you know we have big dates approaching and we ask for you to please pray with us for clean, clear, NED (no evidence of disease) on this upcoming scan. We pray this with our whole hearts and ask you kindly to do so as well. Pray for Cures, this is the prayer that matters so very much. Our Scan is May 25, 2011.

I will leave you with this, it was from a service this past week at church ... my Pastor, Pastor Jaime Kjos said that in an interview Lance Armstrong was asked why he advocates so hard in raising money for cancer research. His answer was, "It is the obligation of the CURED." I cried when I heard those words .... I pray that my son will CURED so that our lives mission is the obligation to help the children affected by these catastrophic diseases. 

Dear Lord,

I pray that you allow Baby Nicholas to remain CURED! We know that all things are in your hands .... We pray for all the children's families mourning the losses of their children, but we mindfully pray you will exceed our expectations and gift talented researchers with CURES.... every day is a gift - EVERY SINGLE DAY - I get to cuddle and wake up to play with this little boy .... thank you God for our son Christian and his health, please protect our family Lord and NEVER allow cancer to hurt us again. This is my daily prayer .....Thank you Lord for the endless people who care and read our updates that tirelessly pray for all the children, the ones whom have donated ( some repeatedly) Thank you for new friendships to share this heavy journey .... thank you God for today.



Our NickyBear! How we love you so very very much our little man. Even your big Brother just loves to play and hang with you. We are so blessed for how well he has been doing through this cycle of chemo, We finish our cycle 4 tomorrow morning and start cycle 5 Saturday night. I can't believe how quickly this part of treatment has gone.  He has been in such a great mood and he is such a great baby! His ANC is 2200 and his hbg (red Blood) 11.8 and platelets 175. Our biggest problem is how much we spoil him. We just can't help it! So he sure throws a fit when he isn't getting exactly what he wants.

Since his counts were up this week, we were able to attend church at Brightmoor.  It was about the power of an invite and our pastor asked if he could use our story in his service.  Our son Christian went to school with 2 amazing little boys and they became best friends. Through them I met their mother Cheryl Helm. Cheryl had Christian for a sleepover and asked if she could take him to church, I ended up coming with her that day. Little did I know that that invite would eventually lead to me inviting my brother and Nick.  We all were getting our priorities straight and letting God heal us. Then my Dad started attending Brightmoor also. Soon others came and my little brother met his now wife there also .... all from one invite. Sadly, Cherly had became very sick in 2007 with cancer and she was one of the best moms I have ever known. She was hands on and her sons were her whole world. When she became sick I promised to pick her boys up for swim lessons or soccer.  I knew she was really ill when she bought me car seats, if you knew her you knew she never wanted anyone to drive her children but her. My heart broke, I remember I started video taping everything the boys did so that when they went home I would leave a dvd for Cheryl for her to watch them and see them since she was too weak to come. I knew how much that hurt her missing out on those moments so I tried to bring them to her. For as long as I live, I will never forget bringing the boys home one day from a play date to her.  She was weak and so very fragile and she walked out to her garage to let me bring the boys in. Bryce was asleep in my arms when I carried him into her house and she stopped me and said, "I don't know what I am going to do if something happens to me.... My mom is too weak, she's older now and my sister is just getting married and couldn't handle it .... I wouldn't let her she said. She looked at me as if I should have an answer to her so deseperate question that her heart planted in mine. A phone rang and stopped us from talking but I vividly remember this day and can replay it as if she was asking me to help her. 

She flew to New York where they successfully removed the cancer from her liver, however during healing she caught a blood virus that took her life within 24 hours. I remember attending her funeral - devastated, wondering why God took her when these 2 precious little boys needed their Momma. I don't know why, but her work here was complete.  After she passed, I wrote her mother and told her about this conversation and unaware of Gods plans for my life .... I did not know the future held having a baby that would soon be diagnosed with cancer, I told Cheryls Mom in a letter, I just was there to help or be extra hands or take them as much as she needed, I told her I didn't know what the future held but my heart loved the boys and I would be there if she would let me be. She never took my offer and a year later I was pregnant with Baby Nicholas.Crazy enough Tuesday we had a knock at the door ----- it was our (other) boys ..... Cheryls boys .... it was timing by Gods hands .... boy how they have grown ... they all look like brothers .... when I took them anywhere people always thought they were brothers ... 8,9,10 all a year apart.

This is a pic of yesterday .... and the one below is from 2007 at soccer when the boys were my buddies, boy I love them  .... how we all miss them and Cheryl so much....she made me a better mother and I will always be grateful for my friendship with her.

 

We never fully grasp who we touch in our lives and how that effect can snowball out into peoples lives you will never even meet. I am reminded daily how people I have never met effect me, how they grip my heart and I close my eyes and pray for them or for their family ... most of those people are little tiny faces, with soft voices and precious spirits, multiple website updates that I wait to hear good news from........

We have his monthly infusion at Rose Cancer Center tomorrow and labs. He is our Tough Guy, but mostly he's just my precious lilttle boy that I adore and would do ANYTHING for. How I wish I could take the bullet for every needle poke, MRI, surgery,test and every drug that he must take. I would do it all for you if I could my precious boy.

This update was paused from this morning and today I now have to go back to the same hospital and cancer center attached to what housed in the last 3 days a story that weighs heavy on my heart tonight ...... those of you that read updates know there is a family from Detroit that is at St Jude (Luca P. under our protocol friends) , we met while we were there last check-up  ..... today this is what they posted on their update ... mind you I met both the writer whom gave birth to a new baby last week and her sister and brother-in-law ready for their new child ....please pray for this family.

WRITTEN BY EVA (LUCA'S MOMMA) ::::::

It is with a heavy, bleeding heart that I post that Baby Andrea Luca Loria has passed away. He is an Angel for his parents, my sister Rosalee and brother-in-law Angelo. He will also be looking after his Big Cousin Luca.

He was loved from inception. Rosalee and Angelo were able to love and hold him, even if it was for a short time. He will never be forgotten. Andrea will be the “Little Engine That Could” for his parents. Even in difficult times, he will remind them to “never give up”.

May God be merciful on Rosalee and Angelo and grant them many healthy children that their Big Brother Andrea will look after. Please pray that they feel they are not alone in this. Let them feel they are loved and may their hearts heal.

Andrea is Paul and my special Godchild that will bring countless blessings for our whole family.

If you’d like to send a note to Rosalee and Angelo, their address is:
54697 Four Seasons Drive
Shelby Township, MI 48316

God Bless,

Eva

With a heavy heart I post today ... another child from our St Jude family got her angle wings back way too early, Saturday Mar 19. For those of you whom know how St Jude operates, it segregates the hospital clinics and wings into categories.  A clinic is Luekemia, D clinic solid tumor and E clinic is Neuro Clinic. The 2nd floor where we all go inpatient, one wing hosts all A clinic and the 2nd wing hosts all D and E clinic children. We met Kya went we first arrived to St Jude.  Regardless of the way we somehow all segregate through diagnoses, we will all lived in the same community and would pass each other a few times a week, sometimes on the 2nd floor you would pass each other with hands filled with extra clothes and carryout from anything you could grap fast in downtown Memphis.  We know each others stories, we catch each other crying and we whispered prayers when we walk away from each other knowing the possibilities that come with cancer. We are indescribably part of a family that no one wishes they ever had to be part of, but a family nonetheless, of parents that have had to watch on the side lines holding their children tightly ... watch them fight cancer.  There is a bond among us that only we can relate to.  There are no words that will adequately describe this common bond, but no words are necessary to describe it among us. Whether you are close to each family or not, you mourn for them and the prayer in your heart that you wished so much for them to be healed and go home free of the grip of cancer. Kya was precious, petite and always smiling. She will be missed. We also shared in the news of yet another child named Belle from our protocol that just relapsed and is scheduled for surgery next week. Please pray for her, pray for Haley and Ehrren too whom all relapsed on the SJYC07 protocol in the last month. (you can find their stories under protocol friends, in the friends we follow button above)

Our weeks have been routine lately and Baby Nicholas' counts ANC 1330 and hgb (red blood) 11.8 and platelets 175 so all is rising before they will fall one last time with the next round of oral chemo. He is 18 months old today! We feel so blessed to watch him grow and pray so very hard that we will be given a lifetime with him remaining cancer free. This was a tough week for me, I dissected his pathology report and lately I wish I hadn't because all it did was put so much fear in my heart and that is NOT what God wants me to feel. I need to give it to God, it is so much easier said than done at times. Some days are easier than others, but when another child dies that we know .... it puts our hearts in such a vulnerable place - its makes staying strong so extremely hard. I got a care package from my dear Dana .... she sent me ribbons for my car, one for mine and one for Nick, bracelets, notes, t-shirt and more ... just so extremely thoughtful and this package came just when I needed to smile most this week. Thank you Dana .... you have always been a true friend and your kindness and effort to understand the impact this has made on our lives, I am so grateful for.

If our son's journey has impacted you, our taught you anything - I ask you kindly to take time to forward the newsletter to your friends and family.  We need so deperately to get the word out there about pediatric cancer. Forward our son's story to your parents, your children, your co-workers - your neighbors ... anyone that will pray and follow our boy with and open heart.

We had an ENT follow up today for his ears, everything looks great.  He doesn't seem to be tugging at his ears as much ... but some is out of habit when he has his pacifier we've noticed. He's been silly lately and playful and even jealous if Christian gets a little attention from us.  It's actually been pretty funny to see him get fired up.  His new words is "UP" and its clear as anything. He's eating so much lately, I really hope next weigh in he has gained a little weight. We got our schedule from St Jude in the mail last week, my heart jumped a beat when I saw that we will be flying out on May 22, 2011.  Exactly a year ago from sitting in ER and finding out he had a "mass" in his brain, not grasping our lives were forever changed. The anxiety of that date and being at St Jude it all seems like a bad dream.  However, I know that God is in Control of ALL things .... His willing no matter what WILL be done. Please pray for our boy as that date will quickly approaches.  I connected with another local mother that is currently at St Jude for radiation... she said to me that a friend told her in the beginning ... "prepare your heart", but NEVER stop fighting and NEVER stop believing ... make NO plans on losing. Pray for Julian. Also Pray for Ryan D. shes our little buddy scanning this Thursday at Jude.

 

Dear Lord,

This week was a tough one emotionally ... and I am placing all my trust in you once again and renewing that commitment.  I can not do this without you and I can not do this alone. Lord thank you for all the friends new and old that have been there to pick me up when I have needed it.  Thank you for being a God that loves us so.  Thank you for every single day you give Nick and I to live and watch our boys grow. Please Father, keep my son cancer free ... let him remain heatlhy and well. Lord, I will make NO plans on losing this fight because I am believing that ALL things will be done to glorify you according to Your plan. 

In Christ alone my hope is found,
He is my light, my strength, my song;
this Cornerstone, this solid Ground,
firm through the fiercest drought and storm.
What heights of love, what depths of peace,
when fears are stilled, when strivings cease!
My Comforter, my All in All,
here in the love of Christ I stand.

Huron Valley HospitalSorry for the delay, I know some of you were waiting to hear about Friday's procedure.  Everything went just fine.  For those of you whom don't know what I am talking about Baby Nicholas had tubes placed in his ears at Huron Valley Hospital Friday Morning, (The 11th) due to chronic negative pressure in his ears for months now. We were about 2 hours delayed due to labs the day before not being processed properly. He woke up fine, just a little loopy. This was his 8th surgical procedure and he's just 17 months old. Pretty crazy ... it's his 52nd time being sedatedin less than 9 months - Can you imagine that?

Sleepy GasWe had our weekly labs re-drawn at the hospital on Friday. His ANC 910 and his platelets at 146 and hgb 10.8 everything is going up as it should. This chemo he is on (erlotnib) is just not fun. It upsets his tummy, though he's eating great and he is fussy on this and restless when sleeping, overall we just do not like this drug! 

We are so greatful for all the progress he is making! We feel truly blessed to watch him running around with drums sticks smacking everything in sight. A typical day now, you will find him in the pantry pulling everything off the shelf and handing it to you even though he doesn't want it - he doesn't want baby food anymore and wants whatever his brothers got lol.  He is more willing to try anything and if he doesn't like it expect it back out in less than  1 second.

St Jude Kick-a-thon

St Jude 1000 kicksThe St Jude Kick-a-Thon was yesterday (the 12th) and Christian and Nick both finished the 1000 kicks for Jude. I am so proud of our 9 year old that he not only finished, but also raised the most money. (Thanks to our amazing friends, whom have repeatedly stepped up when we have asked, we are so very grateful) We raised $850.00 of the $2500.00 plus that was made from this event! Go Christian!

During the week St Jude had a radiothon in the U.P. of Michigan and asked me to speak about why a hospital in Memphis Tenneesee needs donations. It's pretty simple, without St Jude, children under the age of 3 that are diagnosed with rare cancer can not in the state of Michigan recieve life saving treatment plans. It is illegal in our state to radiate a child under three because they do not have the technology to do Proton radiation here.  So for us, St Jude offered a curvative and more Hope in their treatment plan for our boy than ANYONE else in the country could. Yesterday I looked at video from November seeing my son bald and trying to stand up and today .... He's got a head full of hair and is running..... this would not be possible if God did not lead the way to St Jude for us. During on time at St Jude, your eyes are exposed to the sickest children in the country and some in the world that seek help, NO ONE IS EVER TURNED AWAY ... imagine that! They know taking on each case knowing the outcome for some and STILL they try everything to save them.  What an amazing place and I hope through our eyes you understand that cancer strikes anyone at any point - no one is safe from it and places like St Jude are there doing all they can. 

My Boys Please pray for Japan, I have been glued to the TV watching a country be ravaged and it's so painful to see the video of the waves sweeping everything up in sight .... remember we are not safe from anything and no one but God knows what tomorrow will bring ... pray for the people, for all the souls lost, for the children, that aid will come in time with water, food and shelter.

Please always pray for our boy ... and all the other children .... pray for CURES. Also Thanking God For Little Matilda's (under ependy friends) STABLE SCAN,.... please pray for Belle M. scan that she get great results today and also Angel C. Both on our protocol.

God Bless you all.....

Ok .... so we had a great week off from chemo! Baby Nicholas' appetite comes back and he eats great without chemo.  We look forward to the next 3 cycles being done so he can keep that appetite. So we had our trip to Beaumont - The Rose Cancer Center for his monthly pentamidine and labs. We are bummed to report of his week off when his counts should have recovered somewhat, his remained at ANC 600.  His platelets 175 so they came up and his Hgb (red blood) 10.3 that also came up. We think he is still fighting that cold he caught to a certain degree and on top of that our home is quarantined because Nick got strep throat so he has been living in the lower level and not able to come up stairs at all for 3 days. This sounds crazy but Baby Nicholas barely has any white blood cells to attack anything viral and if he was to get this - we would be sitting in a hospital again until his counts recover and so we took extra precaution with his counts being so low. 

He slept through his infusion and everything went smoothly. We started cycle 4 today of chemo, this is erlotnib and the only good thing about this drug is that it does not drop his counts and in fact he recovers somewhat on this drug. Last time it destroyed his appetite so we are hoping and praying this was just the combo of radiation and the drug at that point and that it will not happen again.


Also our 9 year old son Christian is doing a Kick-A-Thon for St. Jude next week.  It's called 1000 Kicks for Jude. Bless his heart that he wants to do something to help in honor of his brother and for all the kids at St. Jude. We want to thank our amazing friends that have donated and sponsored him, and if anyone else is willing to here is the link to do so. CLICK HERE FOR JUDES KICK-A-THON  (you can see our sponsors to the left of this page - once completed we will add this to Nicholas' St Jude Honor Goal to the right of the page)

We got this message on facebook a few days ago and I just had to share this with you because in the 9 months of our journey this post was just beyond precious to me, you might have to read it twice to get it, it read  :::


I got a link to nickybear.com. It just broke my heart to hear what was going on with him. If you need help with raising money, like if he ever needs future surgerys for this problem, i earn a lot of money from dog walking and babysitting, and i would donate some.

-Caitlyn

When I wrote this CHILD back, I said my hope is that I raise my boys to be like you ... when I asked how she found us it was through Pastor Steve's facebook because I just posted on his page something about him being with us the whole 6 hours of the surgery and how grateful we were he was there.

It struck me as so profound  because a CHILD was willing to help   ... it amazes me how much we have been humbled and learned in the shoes we now wear .... a child will walk dogs and babysit to help. How humbling a child of all people would take her earnings and help a baby .... I told her that her parents should be proud of her but that prayers are all we ask for. She asked me if he would ever get better.

Here is my response:::

We pray that he does but that's where faith is created because only God knows if he is healed. His diagnosis has no cure, but his treatment can be a curative. We pray it has cured him!  We go back to St Jude every 12 weeks for scans to make sure he's ok. Pray and tell others to is our only request ... Thank you so much for caring

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble with the comfort with which we ourselves are comforted by God.
2 Corinthians 1:3-4

Lastly, I must ask you to please continue to pray for our boy and that he remains cancer free. I also need to ask you to pray for a family whom I will never meet but to sum their story up the Thayer Family was struck with their 4 yr old daughter being diagnosed with Medulloblastoma (brain tumor) and she passed away after battling it for 6 months. She left behind 3 older brothers.  A year ago, their 14 yr old son Jalen was diagnosed with Glioblastoma Malforme (brain tumor) and his diagnoses trumps his little sisters. This family has faced this road not once, but twice and is faithful to God.  Here is Jalens story for you to read if you choose to, if not just take a moment and pray for the entire family while they are sitting in ER right now. Jalens Caringbridge.

God Bless you all ....

We want to once again thank all our friends and family for your unflinching support.  You have stood with us in the darkness. For this we are forever thankful.

The dust is settling from the MRI ... what a week ... Nick and I talked about it as we do often ... its like walking into a land mind and not knowing the outcome but seeing it all around us at St Jude. It's a tough place to enter knowing that everything can change in a moment... we want to take a moment to thank so many of you that personally have allowed our son to become part of your life ... part of your heart ... part of who you are today ... he has changed everything about how we see the world now, our hope is that he changes how you see it too.  I often hear non-believers angry with God ... that He did this .. but we have always felt differently about it.  He didn't do this ... however He did allow it. For His purpose ... His will ... and so it isn't easy to accept that but it is neccessary to through faith. This whole process has been humbling ... I can't imagine not going through it, but I know that everything has a reason. This photo below is from recovery from his MRI ....

Our Doctor, Dr. Wright is just amazing ... but she is the easiest person to read. See I have seen her face in the moments before someone is delivered the worst news possible and she is such a great woman that she can't hide those markers I have seen in a certian walk and expression and its almost hard to look at her because I know without a doubt we could read her - no words would need to be spoken.  She isn't the type of doctor that sees our children as a case but as a spirit that the family can not bare to hear anything negative about. She is compassionate and kind and soft spoken, but she is also direct and honest. She carries all the character you would hope a doctor would under these intense circumstances. We truly respect her and feel so blessed she is our primary at St Jude. We started with Dr. Gaijar and are thankful he gave us to her.... she is no doubt one of the best parts of St Jude for us.

So let me explain that when you see the sign MRI Suite and you walk away ... and see Dr. Wright rushing down a hall with crossed arms she is on a mission ... she was going to do Nicholas' LP (lumbar puncture) and while they were setting up a puppet play in the MRI waiting area for kids the anxiety was at its max waiting for her to come out because we know her well enough that she was coming out with answers. She immediately said everything looks great. A long breathe .... wow .... ok .... regroup .... (remember evey 12 weeks we fly back and sit through this intense wait that could change our lives) she showed us the scans and she explained it all. She said that everything looked great ... what a relief .... !!! She called later that night. of course when you see that number light up on your phone, your heart sinks again ... Hi it's Dr. Wright ... just letting you know Nicholas' LP  was negative for cancer cells .... have a safe trip home .... could this trip be any better ... she's so great ... never making us wait.

I want to share with you a few things that happened in my 2 short days at Jude .... before I got there I had contacted 2 families, one was Kylie's family and I followed this little girl through her surgery to coming to St Jude. and the other was a little girl named Reese. While sitting and waiting to be called back for our ABR (hearing test) we sat in eclinic and from a distance I heard a Momma say hey Re ... are you ok .... I turned around and thought... WOW ... REESE COFFIN ... I have been praying for her ... shes in front of me ... then 2 seconds later I heard her Mom say, Im eating your chicken ... hey Ky tell your Momma... I thought could it be Kylie Overton .... YES ... then in that very moment they called Nicholas for his ABR ..... by the time he was sedated I was so sad coming back to an emtpy waiting room. Later that night Nick asked me to go get water from the vending machine ... I went down and there was Reese's Momma .... I walked up to her and said I emailed you a few days ago ... I have been praying for your daughter... I am shocked I was here in front of you ... we exchanged info and I told her I wanted to meet Kylie ... so our MRI was over and Kylie was suppose to go inpatient and there were no rooms ... I missed her leaving Jude and kept thinking man that was the only person Lord I really wanted to meet this trip.  About 3 hours later alarms and sirens were going off and there was a massive tornado warning in effect - they took all the patience in even ICU in the halls and took us all to the basement... and there in the midst of it all was little Miss Sassy - Miss Kylie ... I told her Momma God has a sense of humor it took a tornado for us to meet ... but I didn't leave without getting a chance to meet your daughter.

As we left Memphis I saw a sign in front of a beat up ice cream shop, it said ... RELAX .... GOD'S IN CONTROL .... I laughed because its so true --- but in those moments of waiting fear grips you .... its overwhelming .... I had to share this because we weren't suppose to stay at Target House - we were suppose to be at Grizzle and they had no room and so we were sent there ... God is surely in control....

I need an extra special prayer tonight for Euji and his family that God directs them with Strength and Wisdom with the choices ahead..... God heal him.

Ok cutting straight to the most important stuff first ..... MRI CLEAR !!!! Not only clear, no radial changes which means no dead brain tissue or  no highlighted spots of concern to watch - you have no idea what a blessing this is because it normally starts to show signs at this point. We are just so very blessed.  Now to go backwards a little bit. We landed safely into Memphis and the Grizzle House was packed, so they shipped uis back to Target House. It was a weird feeling to stay where we lived for the summer once again. On our way from the airport to St Jude a family was coming back for 10 year scans. WOW !!! It amazes me how God lines you up in the right place at a time when your trying so hard to not let fear take you down. I asked her Momma about  her diagnoses, she said ependymoma.  This is the exact same thing Baby Nicholas "HAD" .... she told us she was diagnosed at the age of 2 and that she had vocal cord paralyzes and hearing issues but overall, if I had not asked the Momma - I would never have guessed this was a child that ever had a brain tumor!  It was a blessing to meet them .... it gives the future so much hope ... which is why I know God placed us in the same shuttle ... HOPE.... God Bless you Emily! The pic below was right beforew the MRI ....

So Wednesday we started in triage with labs and check up. His ANC 600 and platelets 104 and Hgb (red Blood) 9.3 so all is fine and only 3 days left on this chemo before he has a week off. We had clearance visits and then off to the ABR (hearing test) Everything is stable ... another great sign.... PT eval was cancelled because he was sedated. I couldn't sleep at all knowing the scan was hours away.  So Thursday (today) was MRI day .. LP day ... and well ... as you know --- I started with those results first. (smile) We met more families and some that really need prayers,  Reese Coffin .... please pray for her ... Carrisa ( we met her living here but please pray for her) ...little Miss Bree ... Luca, Ashlan, Kylie, Nathan and Haley. Also for Ivey and Ehrren both at Le Bonhuer Hospital healing from surgery. Please keep praying for all the children here at St Jude and for Christian S. Scans next week.

Dear Lord... How humbled and grateful are we with this weeks results... please continue to heal our boy ... and get us home safely .... we ask that you watch over our new friends, old friends and friends we have never met at Jude ... Lord .. please please please this year --- please gift researchers with CURES.... We have been so blessed .... and now we can go home and be as normal as we can for another 12 weeks before we are back here doing this all over again.

A special blessing and thank you to all whom have donated and continue to in honor of our boy .... My husband and I both were so sad seeing so many new babies in the building ... so many new children to treat ,... it takes people like you to just give a little to help fund this research the end these diseases. We will be home hopefully tomorrow .... Thank you to everyone who has honestly prayed - and not saying they will but actaully closed their eyes and asked God to heal our son ... thank you ....

Support

Ependymoma - Ependyparents

Go to Facebook Ependyparents and Join