#findacure

Hey,

Hope that you are all well.

I can’t believe that we are coming to the end of 2024 – and what a year it has been.  

This year has shown me more than ever how important family & friends are and who will be there for you when times get tough. I understand that life is busy for us all and we all have our own problems and struggles I've always believed in being a supportive friend -a listening ear / telephone call or text message check in whenever possible.

This year has seen friendships deepen, while others have naturally fallen away, and I've learned to appreciate both with gratitude.

Abigail has officially started 6th form after leaving secondary school. We continue to have weekly home visits from her teacher, and we've been creating some amazing projects together – clay leaf bowls, a wooden Rudolph, and some charming pine cone decorations. Hugh has entered Year 9 and is thriving as always. My babies are growing up so quickly.

As I saw others sharing posts about their children taking GCSEs and attending prom, I felt that familiar pang of sadness. Every missed milestone feels like another emotional blow. Yet, Abigail has made remarkable improvements in so many ways this year, even as she navigates some lost skills.

As always, she keeps us on our toes and brings laughter to our days every single day.

In 2025 I will …….

Get back running

Blog more frequently

Smile more, cry less

Get out, even if it is only a walk around the block

This year I have not lived but purely survived – I need to pull myself out of this deep , dark place that I have been sat in and try to start seeing the light again

I can't finish without saying a HUGE thank you to Gavin, Hugh & Abigail who have hugged me when I have cried and loved me unconditionally -

Sending all my love & best wishes to everyone – I know that this time of year is difficult for many people

Take care and be kind to yourselves Catch up with you all soon

1st Oct 2023

Hey.

Hope that you are all well and have been able to enjoy the better weather that we have been having.

I don’t even know where to start, the last few months have been tough even by Team Mallon standards.

We had a bit of a dramatic end to July with Abigail having 3 large seizures in the space of 8 hours, 3 ambulances, 2 advanced paramedics, Team leader and the air ambulance all  required and then a code blue called in HDU ending up with Abigail needing to be placed on a ventilator – so if I am sporting more grey hairs you now know why 😂

PICU is a very lonely place at 3am with only coffee and your own thoughts.

I feel like we spend more time at QE than anywhere else at the moment, Abigail is still having seizures every 3 / 4 days and most of the time we are now having to go to hospital as the medicines we have at home and the paramedics are currently allowed to administer are not stopping the seizure.

Abigail's seizures are becoming longer, and the severity seems to have increased.  

Abigail recently had dental surgery, we had to be at Evelina for 7.30am 😜,

Abigail sailed through the procedure and GA, eating a doughnut and hot chocolate not long after waking up.

Unfortunately, Abigail developed a temperature the day after and has not been well since – we are currently on our second round of IV antibiotics, these were started after 8 days of oral antibiotics didn’t work. Gavin & I have never seen Abigail this poorly and hope that this round will kick whatever it is once and for all.

Along side all of the above we have also weaned Abigail off one anti-convulsant and introduced a new one. Abigail is going to be having a central-line soon as her veins are so small and difficult to cannulate which should help lots during seizures and be less traumatic for Abigail.

Just when life seems tough enough another challenge is thrown your way and you need to hike those big girl knickers a little higher !!

I have mentioned many times how I come from and was raised in a family of strong women. My Mum is truly showing us the meaning of strength, determination, and courage now, Mum was diagnosed with aggressive Cancer just over a month ago and has started Chemotherapy. This is not going to be an easy ride but I know that Mum will face it head on and Lauren, Ann & I will walk every step with her.

Take care and be kind to yourselves Catch up with you all soon

Hey,

Just wanted to say “Hi” and give you a quick Team Mallon update. Hope that you are all well and enjoying the lovely weather

The last month as it often is for Team Mallon has been roller-coaster, from our car going into have the cam belt replaced and then breaking down the following morning to the sheer amount of seizures Abigail has been having, it has let’s say a little stressful at times.

I totally struck gold 29 years ago in Math class when I met Gavin and feel blessed to have such a wonderful soul mate riding this roller-coaster with me.

We had a recent appointment to discuss Abigail’s increase in seizures and the consultants think that it is time to add another daily anti-convulsant which we are slowly introducing and will have to see what the coming weeks & months bring.

Abigail is still having lots of seizures and in the last week we have had 4, all requiring ambulances, iv meds and on one occasion Abigail decided that breathing for herself was too much hassle so we had to bag her until the paramedic arrived – Our Princess is definitely adding to the growing number of grey hairs 😂

My 46th Birthday got off to a very early start, Abigail unfortunately had a seizure at 3.35am, after the ambulance had left and we had got Abigail settled back in bed, I just couldn’t settle so I started the day with Izzy & Bobbi drinking coffee and watching Candy on Disney until my 3 favourite people got up.

Gavin, Hugh & Abigail spoiled me as always and we even manage to get to the local pub for a roast and a G&T, and Jurassic Park birthday cake when we got home 😍

As last weekend didn’t go completely to plan my birthday plans were continued this weekend with brunch in the garden

A gorgeous dinner from Six by Nico last night cooked by Gavin – Totally recommend if you are looking for ideas.

Bank Holiday has been a little up and down, but the weather has been lovely which means lots of relaxing in the garden – play-doh, painting and music.

We went into Greenwich for a walk and pub lunch. Abigail seems to get more tired recently, even if she has done no walking and just sat in her chair, and Abigail usually has a nice nap when we get home. We are hoping that this is just due to the number of seizures and introduction of the new medicine and that once things are more settled Abigail will bounce back to her usual energy levels.

Hugh is on half term this week so hopefully the weather will stay dry, and we will be able to get out.

I want to leave you with something to think about …….

You never know what someone is going through BE KIND BE THERE DON’T JUDGE

 Take care and be kind to yourselves

Catch up with you all soon

Reading books written by “Lymies” made me realize that other people feel just as lonely as me. I was recently diagnosed with Lyme Disease. I already have some familiarity because my mom is currently in remission after fighting Lyme & Babesia for 5 years. My Mom was diagnosed with Lyme in 2016. Just hearing the word disease convinced me she was dying. The people around us treated this diagnosis in a completely different way. My mom finally had an answer after diving head first into a giant wall. Her "support system" acted like this was just something to bounce back from. People acted like this new diagnosis was because she had new symptoms. The TRUTH of it all is my mom was diagnosed with Lyme after years of being told she was depressed, had fibromyalgia, wasn’t exercising enough or stressed. The fact that she couldn’t get out of bed, felt “bruising from the inside” & had a daily combination of headaches & nausea was somehow her fault. She took medication to meditation & for every person who claimed that this would heal her another 10 said she was wasting her time/ money. Her friends assumed she would take pills daily & “back to her old self.” Old self? By the time she was diagnosed with Lyme it was chronic; her old self (pre-diagnosis and treatment) could have been 48 or even 8 years old. She hasn’t felt like “her old self” in God knows how long; while the rest of us saw nothing. This wall my mom saw as something to get over. Getting over this wall will make her healthy; mind, body and Spirit, right? For the first few months I prayed nightly “Please God my mom is so young, please let her live a long rest of her life pain free. Please let her get to enjoy the life she worked so hard for. Please don’t let me lose my Mom.” I didn’t look up anything online that wasn’t on WebMD. I didn’t bother to ask her Dr. questions. I didn’t bother to read the few books written by celebrities I was all too excited to hand over to her. I heard what she said “I can’t focus, I’m over stimulated, I’m tired, I’m hurting” But I didn’t listen. I said I would help her over this wall but the invisibility of this disease made it extremely easy to forget about. As frustrated as I was with the other people in her life “not believing her”, over time I found myself worried only when the disease showed rashes . Somewhere during year 2 or 3 I stopped praying. I felt pissed for a while, embarrassed I was praying to no one. To no surprise the passing of time slowly alleviated the pain into non-existence. It wasn’t until she got pneumonia that I started praying again. “Please God don’t let me lose my mother, take away her pain so she can enjoy her life & I’ll do anything I swear.” “God please take it away from my Mom and give it to me.” I wasn’t at all prepared to take on Lyme disease in my own body but I would do ANYTHING to save my mother’s life. At least that’s what I said. I was pissed that no one was listening last time so I guess a big part of me thought I was praying upon deaf ears. It’s actually really funny to me when I think hard about it.Now here I am. Officially a Lymie. And FUCK I didn’t realize how hard my mom was and still is fighting. I didn’t (& couldn’t) understand the extent of her suffering. She was physically disabled, she was emotionally drained, she was so tired and she was alone. Now I know the heart break and complete slap in the face my Mom experienced and because of her I am now determined to not let anyone face this alone.