Noah's Rainbow Journey

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Hi everyone! Thank you for my well wishes yesterday 🥰
As you can see I've woken this morning still smiling as ever 🥰🥰

Our brave boy is out ❤️❤️❤️

Thank you to Taffs Well Rugby Club and Teri-rhian Knight and gang for there hard to work to raise funds for Noah x

Well Noah you are the bravest boy we know ❤️

He has just gone to theatre ❤️

We are so sorry we have been quiet however we have been very busy with appointments!

Noah is doing well and his platelets were on the rise for a little while but we can see they are starting to come down even with the jab 🙈😞 at the moment they are still at a safe level thankfully.

Myself and Leah are now both trained to give Noah his weekly injection...he is a real warrior ❤️

Lastly please keep Noah in your thoughts today while he has an operation to have line removal so it's safer for him he keeps pulling it!.

Lastly thanks for your ongoing support.

Photos from the past few weeks

Today's the day!!

All money raised will be split between Velindre Cancer Centre & Noah's Rainbow Journey

Plus, an amazing singer from 6pm! Get down and support your local club! ❤️🖤

https://www.facebook.com/photo.php?fbid=707045808119397&set=a.620678783422767&type=3&sfnsn=scwspmo

This little boy is only alive because of members of the public. Giving blood saved Noah's life. His parents want you to look at his face and then go give yours: https://bit.ly/3KR50UY

Had the hospital Monday and all is good ❤️ he had his treatment which thankfully hasn't made him so sicky this time. His platelets are up to 390! He is likely to go slightly too high now after having another full dose on Monday but this allows us time to adjust his dosage and find the right weekly level.
Yesterday he had a lovely day out down Barry Island and his first time on the beach 😊
Just over 5months old, still smiling after everything he has been through.
❤️Thank you all❤️

Hospital tomorrow 🌈

Well Noah shocked everyone around him today! Had his levels checked today after having his treatment last Thursday and finally his platelet count is within normal range and sitting at 234.🩸 Hopefully this medication will keep working to this effect and he won't relapse 🤞🤞 He will miss having his treatment this Thursday and instead will have it next Monday so we now only have to attend the hospital once per week.
Myself and Chris will then be trained on giving Noah the injection every week so that hopefully we can drop to only having bloods done every two weeks and then drop to once a month. Noah will now be put on the waiting list to have his Hickman line removed as now it's not needed and hopefully won't be needed again. Once that is removed he can finally have proper baths and go swimming with his big sister. His white cell counts have dropped a little again but that is a completely separate issue that hopefully will correct itself in time. 😊
For now Noah is out of danger, we never expected his counts to be within normal range as even with treatment it seemed unlikely that we would see normal figures.
Right now Noah has fixed his Ark and hopefully can start sailing soon 🥰

Thank you to trecco bay market stall holder raising a fab £202.50!!

❤️

Thank you to Tondu Cricket Club for there fantastic bonkers bingo with me last night and raising a whopping £560.00!!!

Special thank you to Rhiannon and Dai (who shaved the lot) 🤣

Thank you so much

Another day at the hospital today.

Story by the story teller 🥰

Await blood results unfortunately they had dipped a little Monday but better let's hope they back up!!

🥰🥰🥰

Thank you to Becky Dando for selling her raffle prize and giving the Donation to Noah's Rainbow Journey x

Sorry we have been quiet but been a little busy!

Firstly noah is doing better and since starting the new drug things are improving massively! But unfortunately it's affecting his white count. So need to have a new plan going forward but at last some results

Lots of thank you's to do :-

Teri-rhian Knight for putting on a Funday poster on the page.

Sharon and Dan for holding an event on the 18th August.
Ten degrees for raising £145.00
Loughour RFC for raising £100.00
Tondu Cricket Club for organising a waxing night and raffle

🥰🥰🥰🥰🥰😍🥰🥰

Thank you everyone 🙏

Morning from Noah's ark hospital 🩵

More treatment today again! 🩵

Please come along to taffs well for there chairty days.. as we now have funding the money will go to rainbow ward 🌈🌈.

After such a bad week let's hope this week is better. Unfortunately he hasn't been great this weekend but a bit better today ❤️

Back to hospital tomorrow 🌈

This is a face of a little boy excited to see his mammy and sister.

We going home back Monday! We have enough Meds to carry us through the weekend to see how we go!

As always we will update you all Monday!

Update ⚠️

Sorry for late update but been a wild day.

🌈Thankfully the test come back not life limiting but same course of action for treatment is needed.

😔Noah has been very sicky today and we remain in hospital. We had a brilliant visit of bluey thanks to Noah's Ark Children's Hospital Charity

🩵We were given a blanket today of Noah's ark so it's fitted well going to noah.

🥲Beads of courage in the picture you will see the crazy amount of beads noah already.So everytime they take blood, immunotherapy, transfusion,new medication, been strong etc they are a bead and special beads for different things...Just shows how much our boy have had done...

🙏Lastly he has the jab today and we are hoping this will make him slightly better.🙏

Big sister Nia has loved her few hours visiting her brother here

Again your support is appreciated xx

EDIT :- FIRST TWO PICS TODAY ... REST ARE OVER THE WEEK 🩵

🌈🌈 Update 😞😞

Unfortunately Noah had to be admitted today after being very sick.

Hopefully things will improve over the next few days he is currently having anti sickness through IV

They done bloods again today and platlets have dropped 😞😞.

After meeting with consultant they want to do some further tests for something more sinister.

This journey is a rollercoaster but he is such a brave boy.

We had some good news that we actually got funding for Noah's treatment ❤️❤️❤️❤️

All money raised on go fund me page will be given to Noah's ark once Noah's needs have been met fully.

🌈Thanks for all your support as always at this horrible time🌈

Update on the little man! 🍼

Today has been a long one. Unfortunately he has been really sicky and not himself last few days but a change of medication again will hopefully sort him.

Blood count today had only dropped by 2 ( this is the longest ever held at some range) and white blood cells not great but not the worst either!!
But nowhere we need to be but still a positive!

Consultant said genetic testing come back with nothing else and that's a relief!!

More blood Thursday, dietician and OT to sort out his helmet to protect him

As you can see a long day 😂😂

🌈The important part:-

Once again no news on funding and hopefully we will know more next week.

So if you can help we will appreciate it 😊

https://gofund.me/7f056543

🌈 UPDATE 🌈

Bit of a mixed week here :- platlets dropped then rose a little but white blood count dropped suddenly. So hopefully Monday's count is better.🙏🙏

He has been very sicky after his treatment of immunotherapy so Today they started a drug called ondansetron ( an anti sickness designed for people who are on chemotherapy and immunotherapy)

As always his smiles say it all.

If you're able to donate ,share the link or do an event we would be greatful.

🌈 https://gofund.me/f0e38005

As always your support means the world to us as a family ❤️🩵

🌈Lots of smiles today as always!🌈

Such a happy baby!

We are so proud of you Noah. If you can donate and want to please do! Link here 🌈
https://gofund.me/7f056543

Last day before back at Noah's Ark Children's Hospital Charity tomorrow 🩵

Much happier boy today!

Thanks to everyone has donated so far we have a long way to go!

🌈 https://gofund.me/d8fee349 🌈

🌈🩵 GO FUND ME PAGE 🌈🩵

As you know we raised £3000 plus for the ward but unfortunately the drug noah needs isn't available on NHS without funding but
We just want to make it clear if we are successful with the funding then all money raised will go to be Noah's ark🌈🩵

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