Go Gold For Childhood Cancer

Update :

Due to unforeseen circumstances we will have to postpone the fundraiser till January 13th! Please update on your calendars and I will keep everyone posted❤️. Aden and Alec O'Connor's Cancer Journey

I brought a friend from home to keep Carly company. 🫶🏾🎗️

🌟 Heartbroken Update 🌟

What a journey that was! On Jasmines last trip over the team advised that if Jasmines high blood pressure continued, she would be unable to continue with the trial. During her time back in the UK we were advised to double her dosage as her BP was still high and shortly before we left the liquid meditation she had ran out and she had to start taking it in tablet form which she did not like taking.
When Jasmine and I arrived at the airport, and she took her tablet she threw up within 60 seconds and my head started racing. Was she going to be able to take the tablets and would they have any effect before our appointment.

It was an early start for us on Tuesday and the little warrior was unimpressed at the early start. We arrived and began with the usual tests of height, weight, O2 & BP. Her first one was 125/93!! I hadn’t even thought of the MRI to follow.

We grabbed a quick bite to eat and then headed for the MRI. She laid calmly on the machine and watched a film for around 45 min and came out. They retook her BP and thankfully it had dropped to a “normal” rate.
I could not have prepared for the next part.
We had our appointment with the Neurologist and our Dr who was happy with the motoring skills and Jasmine was then taken by one of the nurses for her ECG. Once she’d left the room the Drs face changed, and my heart sank. “ I’m afraid I have bad news” I called Jakki so she could listen to the conversation as the Dr pulled her MRI scans on the computer. Her tumour was so visible on the screen and the whole world slowed down.

The Dr then began to say that Jasmine’s tumour had grown over the 25% threshold allowed for her to stay on the trial, and the medication was not working and she’d have to stop the medication. I felt like my heart had been ripped from my chest and I could hear Jakki crying down the phone. We spoke about further treatment back in the UK and what limited options we had. I then asked the question every parent in this situation dreads “how long?” The reply, “a couple of months”

I couldn’t believe what I’d heard, and I broke down. The Dr left the room to allow Jakki and I to talk but neither of us could say anything and I needed time to process what had been said so it was agreed that I’d call her back. I sat in that room and tried to comprehend what I’d been told.
The next 20 min or so seemed like forever, the Dr came back and told me that Jasmine was back from her ECG and there was no problems. She came back into the room and straight away she could tell I’d been crying.

The Dr then very carefully explained what had happened but did not go into full details. Jasmine began to cry, she couldn’t understand. “But I’ve taken all my tablets like I was supposed to!” She sat on my lap and sobbed, and I tried so hard not to cry but it was pointless. All I could do was tell her that she’d done well and that me and her Mum and everybody was so proud of her.
I felt like the whole world stopped as I sat there with her, wiping the tears from her eyes and holding her tight. Deep down I was dying as I began to try to answer the questions that followed and tried my hardest to explain that it was a trial and that sometimes these things don’t work but we would all work together to find something else.

We left the room after a while and in true warrior spirit Jasmine walked out and said, “ oh well let’s try something else” and went off to do some colouring. I sat with her and coloured, but she knew I was hurting and she started to write a letter to Santa asking for her Daddy not be sad anymore.

We left the hospital after the goodbyes with the team, and I took her into the local city to do some shopping to take her mind off things. All I could do was be present in the moment and enjoy watching her laugh and walk around the shops trying clothes on.

We got back to the hotel later that afternoon and my phone rang. It was our Dr. She told me she’d had a long meeting with the tumour board and although they all agreed that Jasmine’s tumour has grown, they can’t call it “progressive “as she hasn’t deteriorated neurologically. A small glimpse of hope returned but she warned me that if she starts to deteriorate then that’s the end of the trial and we would return to the care of the NHS full time.

She appreciated that after the news in the morning that this would be something that Jakki and I would need to discuss.

We both spoke about it and agreed for her to continue the trial. So now we’ll return in Jan for a check-up and February there’ll be another MRI and testing.

In the meantime we have to enjoy every moment we have and make sure that we have give our Warrior the best possible Christmas!

Please continue to donate, no matter how big or small. It all makes a difference 💖

https://www.gofundme.com/f/jasmine-the-warrior-princess

Just relaxing waiting for our procedures to start. Labs looked good during check-up. Here's to praying that everything else does too!

Hi everyone just a quick update delarize is doing good the last 2 days we take it day by day we will keep praying for a miracle
Thanks for all the support we really appreciate it 🙏🙏🙏🙏🙏🙏

Neurofibromatosis (NF) refers to three different genetic medical conditions, Neurofibromatosis type -1 (NF1), Schwannomatosis (SWN), NF 2 – related Schwannomatosis (NF2-SWN) involving the development of tumors that may affect the brain, spinal cord, and the nerves that send signals between the brain and spinal cord and all other parts of the body. Most tumors are non-cancerous (benign), although some may become cancerous (malignant).

Want to stay current with information and events from the NF Network? Go https://www.nfnetwork.org/stay-informed-signup to stay iNFormed.

-SWN

Remembering the beautiful Ceci on her 6th angelversary💔💔💔🦋💜
Cecilia Amelia Gonzalez was only 2 years old when in May of 2015, she was diagnosed with High Risk Pre B-Cell Acute Lymphoblastic Leukemia. She underwent treatment and had just reached two years past her diagnosis when in July of 2017, she went in respiratory distress. Having been on active chemotherapy, her little body cold not fight off the virus, and it began to attack her heart. Ceci was fighting against pneumonia as well as other forms of respiratory distress. Ceci gained her wings at the of 4, 6 years ago today💔 What really angers me about Ceci’s case is that she was in remission. But the treatment was just so toxic her small body could not take it. Please remember her when you think of the lack of funding for childhood cancer. Kids shouldn’t have to die from the supposed cure! Always remembered baby girl💜💜💜💜💜 I have your chapstick and bracelet still with me💜💜💜
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**kcancer 🎗🎗

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From DIPG research:

Admin Note: ‘Kid-first’ startup BrainChild wants to shift the paradigm on pediatric cancer drugs

This is a Children's First Initiative that focuses on children first then having the technology move towards an Adult Cohort...

From Al Musella

I love these concepts. First, they are going to target 4 markers instead of the current CAR-T cell therapies which have one target. Second, they are going to try it in the most difficult tumors first - DIPG in kids. We will quickly find out if it works or not, since the usual life expectancy is under a year. If it works in kids, they will bring it to adults quickly. The Musella Foundation has given them a small grant to work on the CAR-T cells a few years ago!

‘Kid-first’ startup BrainChild wants to shift the paradigm on pediatric cancer drugs The lab of Michael Jensen, M.D. | BrainChild Bio, a newly-launched spinout of Seattle Children’s Hospital, is focused on childhood central nervous system cancers. Rather than starting with regulatory approval for its drugs in adults, the company will aim for a greenlight for peds patients first.

Tomorrow Averyana's having a MRI, LP and bone marrow biopsy. No matter how many times she's had anesthesia I'm still worried until she wakes up. Pray that everything goes smoothly and for negative results on her LP and biopsy, also that the MRI shows no new growth of her tumor.

Pic from Sunday night when we went to the zoo to see the lights and took a train ride. She was happy to ride with big brother if you can't tell, lol

The original Kids First Research Program was passed as a 10-year program designed to concentrate on children's cancer and rare disease. For the past 9 years it has concentrated on, and made great progress on Childhood Cancers, birth defects, and shared (free to the public) genomic data collection. Sadly, next year is the last year unless... we pass Kids First 2.0. Give Kids Your Voice! Check it out here: https://4sqclobberscancer.com/on-capital-hill/

When I hear the phrase chemo is poison my first thought immediately is Nicole and Ceci ( )
Today marks 5 years since the beautiful Nicole gained her wings. Her story is beyond tragic and absolutely NOT RARE!!! Nicole fought against Acute Lymphoblastic Leukemia after being diagnosed in May of 2018. Only a few months later in September, Nicole fell into a coma and never woke up. Tragically, Nicole’s body had shutdown as a result of chemotherapy causing internal damage that was irreversible. She was in acoma until December 4th, 2018, when she gained her wings, as a result of the toxic chemotherapy. She fought bravely for 6 months despite not being given a fair chance.
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Delarize jy is n WARIOR
That smile shows how strong you are

She never stops smiling no matter how tuff things get
While our hearts are broken you just keep giving us so much hope to keep on fighting with you

It will never get easier watching her having a seizure. You got this sweet girl. I love you to the moon, stars, and car seats.

Thank you Jill Christine Photography for the amazing photos 😍

*edit* she’s doing okay, just has a headache and tired.

Home DIPG OneLink empowers parents with up-to-date DIPG DMG care insights and provides pathways for data donation, helping researchers drive the discovery of new and innovative treatments.

She is❤️💔💔💔💔💔🩵🩵💔💔🦋

Alec had this shirt made today !! Aden gets to go back to school tomorrow ❤️.