#neuroblastoma

MOST RECENT

Evelyn update:

We have decided to join the study through OHSU and continue to just monitor Evelyn’s tumor. We are scheduled to do MRIs every 6-8weeks depending on the results, if the tumor changes in any negative way we will start a more aggressive treatment plan#prayforpositiveresults#neuroblastoma#neuroblastomawarrior#princesswarrior#evelynstrong

This is our charity partner for #NightOfTheLivingDL. Let's get them a bunch of money!
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@Regran_ed from @wadesarmy - A message from Wade's dad, Scott:
I've written in the past about how bittersweet this time of year is. Particularly as Halloween approaches and I am haunted by the fading memories of my last night outside of the hospital with my son.
I'd give anything to feel him clinging to me as I carried him home early because he was in too much pain to trick or treat. That's the thing with ghosts though. They haunt you as faint projections of someone who once was; no longer there in the flesh; fading with the years but never quite going away.

I've gotten pretty good at blocking these memories out of my daily routine for about 51 weeks a year. Then inevitably they come flooding back this week and I can think of nothing else. I came across the below picture taken almost 6 years ago to the day. A trip to the pumpkin patch just before that fateful Halloween. Damn I miss my son's laughter.

I'm sharing this with all of you, because it serves as a reminder that I can't ignore this hurt and loss forever. Wade's Army was started to do something good from this tragic loss. Our hurt and pain has fueled us for the past 6 years to fight for the kids who battle neuroblastoma today. For the families who are stuck in a hospital room and unable to go out trick or treating tomorrow.

For the hope that one day there will be no more cancer. I say that knowing that I have ignored this mission this year. I've gotten all caught up in my new job, moving to Ireland and all the craziness that fills our lives. That's not an excuse -- there is no excuse.
Our fundraising numbers are down this year. I've been distracted. It is what it is, but I am not going to sit quietly and accept it. This hurt is too much to sit idly by while hundreds of new dads join this unfortunate fraternity.

Thank you all. Happy Halloween! -Scott DeBruin

give.classy.org/wade

LINK IN BIO

#WadesArmy #LeadTheCharge #WadeWednesday #BattleNeuroblastoma #NervesofSteel #UseYourPowerForGood #neuroblastoma #pediatriccancer #cancerresearch #gogold🎗️#morethan4 #halloween #kidsgetcancertoo #pediatriccancerawareness

Everyday for the next 10 days Izzy will get a shot to help boost her white count production. This week I let her pick out blind bags (each with a surprise cat inside) to open after each one. She actually handles the shots great, it's just a little reward for doing so amazing. Opening the bag and naming today's cat was pretty much the highlight of our day. Moments before she fell asleep she even told me about the one she hopes to get tomorrow and what she'll name her. // For most of the day she was just tired and emotional but around 5:30 she began having problems with pain and everything kind of fell apart from there. Her vitals are a mess and her temperature hit 103. We'll start IV antibiotics and culture her blood soon. We increased her pain medicine considerably so she's sleeping soundly now. I'm hoping she'll stay comfortable through the night and that she'll find the cat she's waiting for in her blind bag tomorrow.
Blessings on you today and LIFE for Izzy.
#fcancer #cancersucks #neuroblastoma #pediatriccancer #morethan4 #izpossible

Join the fight with me. Click on the link in my bio to donate!

#Repost @wadesarmy with @get_repost
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A message from Wade's dad, Scott:
I've written in the past about how bittersweet this time of year is. Particularly as Halloween approaches and I am haunted by the fading memories of my last night outside of the hospital with my son.
I'd give anything to feel him clinging to me as I carried him home early because he was in too much pain to trick or treat. That's the thing with ghosts though. They haunt you as faint projections of someone who once was; no longer there in the flesh; fading with the years but never quite going away.
.
I've gotten pretty good at blocking these memories out of my daily routine for about 51 weeks a year. Then inevitably they come flooding back this week and I can think of nothing else. I came across the below picture taken almost 6 years ago to the day. A trip to the pumpkin patch just before that fateful Halloween. Damn I miss my son's laughter.
.
I'm sharing this with all of you, because it serves as a reminder that I can't ignore this hurt and loss forever. Wade's Army was started to do something good from this tragic loss. Our hurt and pain has fueled us for the past 6 years to fight for the kids who battle neuroblastoma today. For the families who are stuck in a hospital room and unable to go out trick or treating tomorrow.
.
For the hope that one day there will be no more cancer. I say that knowing that I have ignored this mission this year. I've gotten all caught up in my new job, moving to Ireland and all the craziness that fills our lives. That's not an excuse -- there is no excuse.
Our fundraising numbers are down this year. I've been distracted. It is what it is, but I am not going to sit quietly and accept it. This hurt is too much to sit idly by while hundreds of new dads join this unfortunate fraternity.
.
Thank you all. Happy Halloween! -Scott DeBruin
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give.classy.org/wade
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LINK IN BIO
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#WadesArmy #LeadTheCharge #WadeWednesday #BattleNeuroblastoma #NervesofSteel #UseYourPowerForGood #neuroblastoma #pediatriccancer #cancerresearch #gogold🎗️#morethan4 #halloween #kidsgetcancertoo #pediatriccancerawareness

You still have time to register for the 1st Annual Just Imagine® Golf Tournament benefit for Book for Hope at Drake Creek in Ledbetter, KY on Saturday, October 20, 2018. Maybe you have not been able to get four people on a team, however, you want to play golf. We have several people just like you. Please contact:
Gaylon Hayden at 270.519.6536 to get placed on a four-person team
Keep in mind the golf tournament has been rainproof. If it rains you will be given a pass to play golf another day along with the use of a golf cart. We will have a silent auction along with lunch, too!
#ChildhoodCancerAwareness
#Golf #PlayGolf #Golfers #GolfBenefits2018

A message from Wade's dad, Scott:
I've written in the past about how bittersweet this time of year is. Particularly as Halloween approaches and I am haunted by the fading memories of my last night outside of the hospital with my son.
I'd give anything to feel him clinging to me as I carried him home early because he was in too much pain to trick or treat. That's the thing with ghosts though. They haunt you as faint projections of someone who once was; no longer there in the flesh; fading with the years but never quite going away.

I've gotten pretty good at blocking these memories out of my daily routine for about 51 weeks a year. Then inevitably they come flooding back this week and I can think of nothing else. I came across the below picture taken almost 6 years ago to the day. A trip to the pumpkin patch just before that fateful Halloween. Damn I miss my son's laughter.

I'm sharing this with all of you, because it serves as a reminder that I can't ignore this hurt and loss forever. Wade's Army was started to do something good from this tragic loss. Our hurt and pain has fueled us for the past 6 years to fight for the kids who battle neuroblastoma today. For the families who are stuck in a hospital room and unable to go out trick or treating tomorrow.

For the hope that one day there will be no more cancer. I say that knowing that I have ignored this mission this year. I've gotten all caught up in my new job, moving to Ireland and all the craziness that fills our lives. That's not an excuse -- there is no excuse.
Our fundraising numbers are down this year. I've been distracted. It is what it is, but I am not going to sit quietly and accept it. This hurt is too much to sit idly by while hundreds of new dads join this unfortunate fraternity.

Thank you all. Happy Halloween! -Scott DeBruin

give.classy.org/wade

LINK IN BIO

#WadesArmy #LeadTheCharge #WadeWednesday #BattleNeuroblastoma #NervesofSteel #UseYourPowerForGood #neuroblastoma #pediatriccancer #cancerresearch #gogold🎗️#morethan4 #halloween #kidsgetcancertoo #pediatriccancerawareness

This gem is being donated to @handbagsforhopeabbotsford happening November 2nd at the @highstreetfv Community Room. Handbags for hope raises money for Childhood Cancer, specifically Neuroblastoma research. Mark your calendars to check out hundreds of new and used handbags and silent auction items! 100% of the proceeds go to BC Children’s Hospital 🙌 #handbagsforhope #bcchildrenshospital #childhoodcancerawareness #neuroblastoma #fraservalley #highstreet #storywoodsignco

This is without doubt, my most treasured possession - my Mum's silver locket with 2 photos of my beautiful Sister 💖💖
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Fiona would have celebrated her 41st birthday last Sunday, though she never saw her 3rd
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Maybe it's because I've lost so many people that were close to me, that I'm grateful for every day. I've never been happier and this locket lets me carry round a little piece of my Mum & Sister with me every day 💖
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#memories #treasuredpossessions #keepsakes #love #family #mum #sister #rememberwhatsimportant #happytimes #neverforgotten #liveyourlife #bekind #positivity #positivethinking #behappy #alwaysremember #loveforever #forever #mysister #cancerloss #neuroblastoma #loveisall #mylife #myfamily #specialmemories #sharethelove #positivevibes

Peach fuzz and pumpkins in clinic today! He has been having a hard time the last few days and lost 2 lbs over the weekend, so back and forth between hospitals this week. Tomorrow no radiation because his weight loss makes them need to recalibrate the machine, but hopefully that will make a very nice lazy day. Very welcomed anyway. #fightemmettfight #🍑fuzzandpumpkin #chemohair #neuroblastoma

Who says you can’t wear your most fashionable outfit to hospital 🤷🏽‍♀️💕
Nothing gets in the way of our little fashionista🧚🏼‍♀️✨

Hey Fairies! 🧚🏻‍♀️
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A lot has been going on recently, we’ve been in a hospital everyday since last Tuesday. We are all exhausted. 😴
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So, there’s a fair bit to catch you all up on...
Good news - Edens MRI shows a change in the tumour, I has shrunk again 🤗 We’re over the moon.
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Eden still has a line infection which so far hasn’t cleared on the antibiotics which were first given... so our consultant decided to admit Eden to GOSH to clear the infection.
Coming back in has been okay, although emotionally I have found it very hard 😪
Being split up as a family hurts, hurts more when it’s sprung on us. We all miss each other.
So we will now stay at gosh until the line infection has cleared. How long we are in is anyone’s guess.
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We have also been given the news that surgery may be possible. There’s a National Meeting for children who are inoperable on the 9th November, our consultant has put Eden forward for this meeting. There will be a number of specialists involved in the decision.
If Eden is able to have the surgery it will likely delay us getting to MSKCC, so another discussion with the hospital to decide the best date for us to arrive.
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Things are certainly on the way up, with a few hurdles to over come.
We’re getting there 💖
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Tomorrow is Edens MIBG and CT scan.
Will update tonight with our adventures 😊
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Lots of love x

Evening Fairies 🧚🏻‍♀️ We made it home last night! 🏡 So nice to be under the same roof again ❤️
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Sorry for the long post!
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It was a difficult stay, we’d already celebrated our last sleep over (we won’t this time 🙈) it threw up a lot of emotions for me, I found it tough, luckily their were some amazing people on the ward who all made it easier!
A lovely young girl named Jessie spent most of her time playing with Eden, she had the best time, our visit and trip the the park with Siobhan and Sarah, we always love every minute with them, other mums who listen and understand your pain, and finally our amazing, one of a kind, caring nurses. They really are the life of our NHS, they work tirelessly and from the heart. You can see they love our children and want only the best for them. We trust them. Our children trust them.
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Edens scan took a little over 3hrs, the wait is horrific. It feels like I’m waiting all day, the clocks stop. I physically can’t stop myself staring at them. Time honestly stops still and noises change. My thoughts go ballistic and I fidget the entire time... shame it’s not as quick as a cheeky selfie!
Our nurses gets a call, Edens up. Everything is fine. Results soon!
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Eden still has an infection in her line but thankfully she is well. 🎉 She is having something called a Teicoplanin Lock. This means a strong antibiotic is locked in her line 24hrs a day. Cultures to be taken Friday and Sunday and we visit Hillingdon daily.
Next week she is having a BMA, ECHO and GFR. They have pushed things through while Eden is still well and remove the line when needed or if the cultures continue to come back positive.
The risk of the infection spreading is Sepsis, we are keeping an eye on her but all is well! 🤞🏻🤞🏻🤞🏻
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Back to nursery tomorrow which she has really missed!
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Thank you for always being behind us, for thinking of us and your continued support and love. We are so grateful ❤️❤️❤️

So excited to announce, Eden and Willow will be brand repping for the amazing @bowtifulinsideandout Here’s Eden wearing her beautiful mermaid bow 💖🎀 Check out the exciting range! Use the code EDEN10 for a cheeky 10% off! Can wait for the new bows to arrive 😊🎀

Exactly six months ago today we were admitted to Kings College Hospital and there our Neuroblastoma journey began. Six months on and today we were hoping for better news. The PET scan last week showed that the small spot of soft tissue in his chest (less than 1cm) hasn’t responded to the high dose chemotherapy enough and is still there albeit a little smaller. Whilst the rest of his body including bone marrow and the main tumour bed are all clear, which is fantastic, we were hopeful that this final small bit of disease would have been obliterated by the incredibly strong dose of chemo he’s just had. But unfortunately that’s not the case and it’s a huge blow. Tomorrow our consultant will discuss Teddy’s case with a multidisciplinary team to decide on the best course of action, although she thinks we’ll probably carry on with his scheduled treatment with the hope that the immunotherapy antibody will get rid of it. Radiotherapy would have been a good option as it’s so small but it’s in a very tricky place between his heart and lungs which probably won’t be able to be reached without causing too much damage. The problem with PET scans is that they can be ambiguous, and are not as reliable for Neuroblastoma as MIBG scans but Teddy is part of the 10% of children who are MIBG non-avid which means this won’t work for him. So there is a very small chance this spot isn’t disease at all, but seeing as it’s been showing up for a while that scenario is probably unlikely. We have to collect a urine sample which will tell us if he still has Neuroblastoma in his body but we won’t get the results for weeks. So once again we’re in an agonising period of uncertainty. The only thing that is certain is that we will explore every option and will make sure that T is getting the very best treatment possible to help him beat this cruel and unpredictable disease. Thanks for all the lovely messages checking how we are and in advance for all the ones I know are to come after this post. You all help us to feel less alone 😘 #superted #childhoodcancer #neuroblastoma #childhoodcancer

1 year ago we received the worst news "your daughter has cancer" Sophia had no idea she was about to fight for her life. She has been a true inspiration!! She has put a smile on her face every step of the way!! Now she is cancer free and set to end treatment February 2019. What a difference a year can make!! Today also is Kenny's (her dad) Birthday!! As much as he hates this day now because he associates it with Sophia being diagnosed, we should celebrate it because if Sophia can choose to be happy every day than we should be able to also!! So happy birthday kenny!!! And Thank you to all of you!!! All the support we have received this past year has been amazing and reminds us daily that we are blessed. #fightlikesophia #cancersucks #prayforsophia #neuroblastoma #neuroblastomawarrior #brave #strong #immunotherapy

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