Kure for Katelyn

06/08/2021

Happy, Healthy and Doing Well!

Before I get into this update I just wanted to say sorry for taking so long to give you one! I have been meaning to do one for months and all I can say is that I let life get in the way.

So much has happened since the last update that it’s hard to know where to begin. Let me start by saying Katelyn is doing amazingly well; if you met her today you would never know how sick she once was! When I look at photos of her during her treatment I cannot believe how far she has come and how truly blessed we are.

As with the entire world, Covid has had a huge impact on our lives. We have, once again, been blessed in that none of us or anyone in our family have contracted it, so I’m definitely not going to complain. However, it did impact us in that we hardly left our house in well over a year. Katelyn did her kindergarten (Gr R) year of school from home, via Zoom. This was incredibly challenging as she is a very social child and when everything is done via a computer screen it’s not possible to interact and socialize properly. Nathan completed 3rd grade the same way but he can read and write and he handled it much better and did extremely well.

As we completed the school year and entered their summer holidays (2 months), the Covid numbers dropped low enough that we were able to take a little road trip to Seattle. It was so lovely to be out and about, see some of this country we are now living in and experience some of its culture. Katelyn particularly loved the Oregon Zoo (she absolutely loves animals and begs for a dog on a regular basis).

We got home in time to get ready for Katelyn to start gr 1 and Nathan gr 4. Much to everyone’s delight the schools have decided to go back to in-person learning! We are now in our second week of school and while Katelyn absolutely hates waking up early (she would sleep past 9am if I let her) she is loving school and every day I hear about new friends and games they play. She is not so keen to share what she has learned; according to her that is the boring part of school.

We have been taking Katelyn for regular MRI scans and I am ecstatic to say the doctors are happy with the results and there are no signs of the cancer coming back. That being said, the chemo has not left her completely without health issues. The doctors at UCSF have identified some areas where her brain has been affected by the chemo which has resulted in a few processing issues. Basically, the chemo she received has broken down some of the neural pathways in her brain. As you can imagine this has caused a number of issues; such as difficulties with short term memory, trouble following verbal instructions, and so on. However, the brain is an amazing organ and has the ability to build new pathways which will hopefully happen over time for Katelyn. In the meantime, we are working with fantastic specialists who are helping with long term healing as well as strategies for short term issues. Over all, we are happy, grateful and blessed to be where we are and have our beautiful, bubbly little girl moving forward in her life.

While writing this I have been thinking of Katelyn and all the things she gets up to, so I thought I would share a few things.

She has not let her medical history slow her down, in fact, I believe it has given her a drive to live every day to it’s fullest. She is currently learning to ride her bike (she has balance issues post chemo), as well as her scooter and roller skates. When she falls I generally get an “ I’m ok” and she’s is up and trying again. She has also informed me that she wants to do guitar lessons, as she wants to be a rock star; ballet lessons as she wants to be a ballerina; gymnastics because she needs to do the splits (which is something she works on every day and will show anyone whether they are interested or not); swimming lessons because swimming is fun and horse riding lessons because horses are beautiful! As time goes by, and she discovers more activities, I’m sure she will want to do them as well.

I am not sure where she gets it from, but she doesn’t have a shy bone in her body. She will talk to anyone and everyone she sees. She generally starts the conversation with: “Hi, my name is Katelyn and I am 6 years old and this is my brother Nathan, and he is 9 years old. My mommy’s name is Shannon and this is my daddy. We live in Rose Garden. We lived in South Africa when I had brain cancer but now we live here.” If the person has a dog we absolutely have to say hello to them. The only difference in how she starts that conversation is with: “Can I pet your dog?” The other day we were at the shops and she kept asking if we could go over to two women who were moving in the same general direction as us and eventually I asked her why she wanted to go over to them, to which she replied: “Because it looks like they are having fun and maybe they will want to have fun with us. Wouldn’t that be nice?”

Until next time I am off to have some fun because yes it would be nice.

23/07/2020

I have started and restarted this update so many times I have lost count. I’m not sure why it’s been such a difficult post for me to write as the news is good, really good!

The staff at the Benioff Children’s Hospital in San Francisco have been absolutely wonderful. They are so passionate about their vocation and making sure the children in their care feel safe and comfortable. Parents are informed every step of the way in each and every procedure, which we found very reassuring. The process during Covid-19 lockdown was a bit of a challenge but the hospital staff handled everything so professionally that we felt quite safe.

Katelyn has gone for regular MRI scans and check-ups and is officially cancer free and in remission! Her oncologist even gave the go-ahead to have Katelyn’s port removed. We have been able to stop all medication and start living a normal life again (as normal as it can be with Covid-19). She has picked up weight and her hair is growing back nicely. When you look at her, it’s hard to believe that not so long ago she was so desperately ill.

One of the biggest highlights for Katelyn was being able to go to school for the first time. It was also a time of adjustment, as she didn’t realise that school has rules which need to be followed. But, that was soon overcome and she quickly made her way into her teacher’s heart and made lots of little friends. Sadly, that came to an abrupt end with lockdown, but she still enjoys online chats with her teacher.

As always she is a bundle of joy, full of life and often gives me the giggles. According to her there are humungous viruses outside (apparently she can smell them 🤣) because someone ate sand frogs which is a really silly thing to do as you are not supposed to eat sand frogs because that’s super, super, super gross! Which is usually followed by a: “Do you understand?”

We bought the kids a small, above ground, pool as it’s very hot here in summer and we are stuck at home. Yesterday Katelyn put on her mermaid swimming costume and on her way to the pool she caught her reflection in the sliding door. While staring at herself she asked: “Mommy do I look super cute?” To which I replied: “Yes, you look lovely!” At which point she started laughing and said: “No I don’t, I look ridiculous!” I asked her why and she replied, “Because mermaids have long hair and my hair is too short so I’m a ridiculous mermaid, but that’s ok!” giggling, she then ran off to the pool.

It never ceases to amaze me how she has taken everything in her stride and is just happy to carry on enjoying life to the fullest no matter what is thrown her way.

Nathan on the other hand takes life a lot more seriously and after a lot of discussion and a million questions he is satisfied that Katelyn is well and is now convinced that her health is no longer something he needs to worry about. Being in lockdown has been good for their relationships as they have reconnected and are playing the way they used to before Katelyn got sick. I just love watching them play together, hearing them laugh and giggle over things only they understand and helping them to learn and grow together.

Nick is doing well; we are blessed that he is able to work from home. I’m not going lie: as difficult as lockdown has been, I am so grateful to have him home with us. Prior to Covid-19 we only saw him about 50% of the time. So, having time together as a family, without hospitals and all the stress that comes with having a sick child, has been a much needed positive.

As for myself, let’s just say it’s complicated! I am unbelievably grateful for all we have been blessed with and I truly do feel each and every one of those blessings. At the same time, I am incredibly homesick. To get to where we are today I had to leave my family and friends who stood by me during the darkest of hours. I know that without them, I would not have made it through these past few years. It breaks my heart that they cannot be here to celebrate with us and witness how well Katelyn is doing, with their own eyes. I think this is a big part of why this update has been so hard to write; with each line I am reminded of what each and everyone of these amazing people have done for me and my family (from picking me up when I needed it, to helping with fundraising and so much more). Yet, knowing that they are all so far away is devastating to me. I often wish I could bundle everyone up and move them here. We would have such fun! I try not to dwell on this too long, as I cannot change it. I am and will always be blessed to have all of you in my life and no amount of time or distance could ever diminish the love and gratitude I have for all of you. I have no doubt that I would not be where I am today without you and neither would Katelyn. You all played a part in saving her life and, in doing so, saving mine as well.

“Thank you” seems so small an expression to convey the gratitude I feel for all of you; from something as small as a comment or “a like” in one of my posts, to helping us fundraise, your donations, supporting every event to get Katelyn the care she needed and being there to keeping me going when I was terrified that Katelyn would not make it through the night. Each one of you have made more of a difference than you could ever know. My family and I are truly blessed to have you in our lives.

I am not one to let things keep me down, particularly when I have so much to be grateful for so, between all the mommy, housewife and day-to-day things that keep me busy, I have started doing arts and some crafts. As most of you know, I have always been a creative person, but have not been able to nurture that side of myself for a long time. It is honestly helping me process the multitude of emotions I have been dealing with. Creating art helps to combat the isolation and gives me a great sense of accomplishment. All in all, it’s been very therapeutic; even if Nick’s wallet doesn’t always agree 🤣

I have decided to include A LOT of pictures with this post, since it is long overdue and it feels like so much has happened since the last one.

As Katelyn would say: “Love you so MANY!”

Shannon

19/12/2019

Update from USA

It’s been little more than a month since we left sunny South Africa and were greeted by a chilly Californian Autumn/Winter. So much has happened in this short space of time that I don’t even know where to begin. Nick and I hit the ground running but with a lot of help and support from our amazing family here we managed to sort our paper work, get our medical up and running, as well as planning doctors’ visits for Katelyn to plan the way forward for her. We put both children in school (yip that’s right - Katelyn has started school for the first time in 2 years), conquered a few personal fears (like driving on the wrong side of the road), buy a car (now I have no choice - had to start driving 🤣) just to mention a few.

Our lives in the USA are very different from living in South Africa; so far everything has been very fast paced, like JHB on steroids! I am currently doing 4 school runs per day as Nathan and Katelyn have different starting and ending times which is very good for building up driving confidence. Nick’s work calendar is fully booked till next year with travelling to clients, so we will only be seeing him weekends and holidays which is quite an adjustment for all of us. I’m hoping that once we are a bit more settled and no longer squatting (like true South Africans) with family, we will find a rhythm that suits us.

I am sure all of you would like to know how Katelyn is doing! She is doing extremely well. In true Katelyn style she has adjusted to the changes in her life quite well. Although she tells me she every day school is too long (only 4 hours a day), and she misses me “so many”, she is loving school. When I ask her how her day was, she excitedly tells me of all the fun thing she did and all the new things she learnt. Her teacher says, although she is clearly not used to a school environment (staying seated on the mat or walking in line 🤣), she has learnt fast and it’s a great pleasure to have in her class. She has a bunch of cousins in her age group nearby who she has fallen in love with and asks to see them every day. We have found a fantastic pediatrician who is a 5 min drive away; she is working closely with Katelyn’s doctors in San Francisco (almost 2 hours’ drive away) to ensure Katelyn is on the right track. We will be taking her to UCSF Benioff Children’s Hospital for tests and to meet her oncologist and neurologist in January. Until then we are enjoying every moment with her and all the new adventures life brings.

A few weeks ago, we had our first Thanksgiving which consists of time with family and loved ones and lots and lots of yummy food! It was a day fill with fun and laughter, however, I found myself very emotional and rather tearful (which is not like me). Everyone kept asking each other what they were grateful for this year and the more I thought about it the more my list grew! Our family has been so blessed and the gratitude I feel is impossible to put into words but here is my list of things I am grateful for:

1. That my children are alive and well, and they have been given the opportunity to live, to grow, and to be happy and healthy.

2. For all the love and support we have received over the past few years from old friends and new, family and strangers whose hearts were touched by Katelyn’ story! Without all of you we would not be here, and Katelyn would not have the medical expertise she is now receiving which is giving her the best possible chance of a full recovery.

3. For everyone who helped and supported our fundraising no matter how big or small the contribution - it changed our lives and saved Katelyn’s!

4. For my close friends and family in South Africa who for years stood by us ready to jump in wherever or whenever we needed them too. We would not have survived without you! Being so far away from you after all we have been through together is one of the hardest things I have ever done, I miss you like I’m missing a piece of me.

5. For our amazing family in the USA who took us in, no questions asked! They opened their homes, hearts and lives to us, giving us a soft place to land and find our feet. Helping us in more ways than we could ever have hoped for! Your generosity and kindness are over-whelming and we are so very grateful for everything you have done!

6. To Microsoft for giving Nick a job here and being such an amazing and supportive company!

7. To my husband for being who he is, picking me up when I need it, patiently loving me through my crazy, panicked and stressed moments (nervously screaming at him while learning to drive here), holding my hand and telling me everything will be alright.

8. To Nathan for being who he is; loving me unconditionally and most of all reminding me to smile.

9. To Katelyn for showing me that life is for living, for never letting an opportunity to have fun pass you by and for being the strong, stubborn little fighter that she is!

We are truly blessed!

Love,
Shannon

31/10/2019

Its you Thursday and we have a lot to be grateful for today, The Brand Family have arrived safely in the USA and they just catching up on some rest and just getting settled with Family over there.
Once the Family is settled, I’m sure Shannon will send us an update.

Over the weekend we had Katelyn’s Farewell and it was one of those events that will be remember.
I would like to thank a few people in the short time we had to put the farewell together we had some amazing people onboard helping us.

To our Raffle sponsors thank you for your kindness on the day.

Rozanne Liebenberg Photography
Everessence
Skin Jazz
Gecko Printing
Crafty Things and Gifts
News cafe
Gracefully Printed
Mimmos Centurion
Yiamas
Lullubelle Beauty Salon
Flip Out Trampoline Arena
Lymphatica

To a few more Angels on the day just a special mention

Pinnacle College thank you for Katelyn's Farewell Gift.

Christa from Christa Cuppies and cakes for baking all the cupcakes.

Janine Clarke from Janine Clarke photography for capturing the moments on the day

Angela from Honeymelon kids party planner for the jumping castle

Dale from Jetline Centurion for the assistance with the printing and artwork for this event .

Karin & Robert From Mimmos, thank you for being so kind and supportive, the breakfast and service on the day was excellent.

To our KFK Team you know who you are thank you so much for the support on the day.

28/10/2019

The day has arrived to wave the Brand Family off to the USA.

Today a new journey awaits them! A journey complete with excitement, fear, new memories and hearts that will miss this KFK community dearly.

We wish The Brands all the best! We know this is and always was the end goal to get Katelyn the medical help she needs.

So, to The Beautiful Brand Family :

Travel safely
Always stay the close, amazing family that you are.
Always Keep SMILING.
Make new memories.
AND
SHARE EVERY MOMENT WITH US!

Let's see them off with some words that will make the day easier not only for the Brands but for the family and close friends that they say goodbye to today .

25/10/2019

Only 3 more sleeps
😳❤️🥺😭🤣🤯😘

22/10/2019

Its official Nick starts his new job on the 4th of November! Therefore it is not long now and we will be getting on that plane 😊

We do however need some help with a few things that we have not been able to do in this very short timeframe, one of them being finding a loving home for our cats.

We would really appreciate any and all assistance in this regard.

16/10/2019

We are extremely excited to announce that not only has Nick been transferred to Microsoft USA but our working visas have been approved. Well done to our super star Daddy!

As you all are aware, due to the complications with Katelyn’s treatment, being in a country like the USA will give our little Angel the best chance of a full recovery. She is doing incredibly well since we stopped all treatment 4 months ago. However, she still has a long road ahead of her and being able to give her access to more advanced medical treatment, technology and specialists is an answer to prayer!

Daddy’s new job starts early next month so we are working overtime to get everything ready for the BIG move. While it is incredibly difficult to say goodbye to so many amazing people who have selflessly supported us as a family for so long, we are immeasurably grateful for this opportunity.

A farewell is being planned at very short notice. Details to follow soon. We hope you will be able to join us as we would like to thank each and everyone who has supported us and showered us with love and kindness during this most difficult time. We will never be able to put into word how much you have meant to us as a family and how grateful we are and will always be.

Thanks to social media we plan to keep everyone updated as we start this part of our journey and ultimately Katelyn’s journey. Thank you for your continued love and caring support.

11/10/2019

The last few week have been jam packed with amazing thing...

WATCH THIS SPACE for all information, from catching up with Katelyn, Thank you Thursday’s and very soon we will be able to share the most exciting news of all! 😁😁😁😁😁😁😁😁😁

28/09/2019

🧁🧁🧁Cupcakes 4 Kids with Cancer is having their annual cupcake day today! 🧁🧁🧁

So head to your nearest cupcake stall (see their website for details) and show your support!

Also for every post on Facebook that includes Defy will be making a donation as well so please share, post and give your support to this amazing charity that has done so much for our precious Katelyn and countless other other children with cancer. ❤️❤️❤️

09/09/2019

What a wonderful initiative to raise funds for children with cancer ❤️ And who know you may just win an awesome holiday in Phuket 😁

Help a Child in need to WIN 7 Nights in Phuket Worth R15000! Fundraising for children with cancer and special needs. Charity Raffle: Only R100 per entry!

08/09/2019

Please support this wonderful charity, they have done so much to help Katelyn and our family ❤️

20 Day's to National Cupcake Day 🧁!!!!!