Go Gold this September for Artie!

As you all know I am writing my blog posts some months behind using the notes and feelings I wrote along the way. Although I have chosen to add this post in now to help with the Childhood Cancer Awareness Month. The idea is to get everyone to GO GOLD, make people aware of the symptoms to raise awareness and also raise funds for various charities or causes. I decided this would be the perfect time to share some details about Artie’s diagnosis and the symptoms we experienced and help another Mum or Dad get their child diagnosed sooner. Share posts about childhood cancer, add a go gold frame to your profile picture on facebook, hold a charity event, make a donation to a cancer charity like Gold Geese (local) CLIC Sargent, Children with Cancer or CCLG or donate to a local Childs fund, but mostly just make people aware of the symptoms. In a way that breast cancer awareness is pink, the idea is to make everything gold for September and raise as much awareness as you can.

It’s a fairly long post so if you don’t want to read the whole lot or have time. These were the most significant symptoms I noticed with Artie before diagnosis.

Petechia spots (small purple/red spots) on his groin and back of his neck (6 weeks before diagnosis – these vanished within 24 hours)

Different breathing while asleep at night and slight cough (2 weeks before) – I told my husband to come in and see and asked his opinion and he didn’t think was any different but as a Mum, I knew it was different, the breathing out was quicker. Now I know it was due to the fluid under the lungs stopping him from breathing properly.

Wet pillow from head sweating (2 weeks before) – this is a big red flag, its a classic lymphoma symptom (there can be other causes like medication side effects, etc too) and one I wish I’d acted on sooner. It wasn’t just a sweaty head, his pillow was so soaked I had to change it. This happened a few times.

Reduced or no eating (2-4 weeks before mostly) This started about 2 months before but became noticeable in the 4 weeks before diagnosis and gradually got worse.

Tiredness – Too tired to ride his bike, wanting to be carried a lot, not wanting to go to the park or soft play or days out, sleeping a lot.

A swollen gland behind the ear (1-2 weeks before) – Popped up behind ear a couple of weeks before but was put down to a virus.

Raised temperature (2 weeks before) – This was only for about a week on and off then it went away.

Feint Veins in middle of chest appeared on and off – I falsely reassured myself with google and as they vanished I didn’t think it was a problem. I will attach a photo at the bottom how the veins reappeared the morning after we found the lump. Terrifyingly prominent. This was because the tumour was pressing on the veins.

You can read more about the full general symptoms for childhood cancer here https://www.cclg.org.uk/i-am-worried-my-child-has-cancer

If you haven’t read my previous blog posts, my beautiful son Artie, 3, was diagnosed with cancer 3 months ago. I had a healthy pregnancy which I absolutely loved, I ate well, looked after myself, didn’t dye my hair, didn’t drink or smoke, took the right vitamins, didn’t eat runny eggs/soft cheese, etc, I did EVERYTHING to the book! Artie was the healthy kid, the strong one, I made everything from scratch, as a baby I gave him all the good foods, he ate well, lots of fruit, used organic for lots of his food, used organic baby products. I did everything I could for him, all the right things as much as I could. But I learned that cancer isn’t choosy. It doesn’t matter if you eat organic, or you breastfeed or bottle feed, it doesn’t care if you don’t dye your hair in pregnancy and it certainly doesn’t care if you cook from scratch. All the Mum’s I met in the hospital were all from different backgrounds, and yet here we were all in this same horrible journey with our precious children. I’ve seen the Go Gold posts but didn’t often share things as I didn’t really understand it, but people should. People should understand the dangers, the symptoms, and not to delay. Use that Mum instinct, if you think something is wrong them push the GPs to refer. Artie was stage 3 when he was diagnosed but we could have been less than that if I had picked it up sooner. So here’s our story. Please share with your friends, make everyone aware of the symptoms, don’t ever think it won’t be you, because I didn’t ever think it would be me. It can be anyone.

Artie’s diagnosis was Burkitts Lymphoma. It is a type of high-grade Non-Hodgkins Lymphoma which grows so so fast, it is one of the fastest-growing cancers. It is a cancer of the lymphatic system and it develops from the B Lymphocytes, which are the white blood cells that fight infection. They say that it grows quickly, doubling in size in 24.48 hours, Artie’s lump itself presented very suddenly however he had symptoms presenting some months before. There isn’t enough knowledge to know exactly what causes this disease but it’s due to a genetic change that happens when Artie was created, it’s not an inherited condition but a gene basically makes a genetic change and sits there. Then something can make it turn into Burkitt’s. We don’t know what the trigger was but I suspect it is something to do with the immune system.

Artie was diagnosed on 1st June. In February, one of Artie’s nurseries made some observations on how tired he was during the day. Our health visitor asked us to keep a record of his eating diary and sleep patterns to see if we could identify a cause as nursery explained to the HV that he was an excellent eater (Artie was the kid who scraped the crumble off of dessert to eat the fruit, whilst everyone else ate the crumble and left the fruit) so they were surprised to hear he was a really good sleeper. They said he was so tired in the day they wondered if he didn’t sleep well at night. Around this time Artie used to complain sometimes of tummy pain although having allergies this isn’t uncommon so I wasn’t too concerned but wondered if he had eaten something that had caused a tummy ache.

On 3rd March (3 months before diagnosis) we went to a birthday party and he just wasn’t himself. He didn’t want to join in, just sat on my lap, very quiet, and kept asking to go home it was really unlike him. March was very much the same on and off, he would be fine one week, and the next just seem tired and grouchy. Obviously, kids do get tired and grouchy, it was nothing so consistent that I was worried about it, I just thought maybe he was getting a bit tired as appeared to be trying to drop his nap. Some days he would be full of energy and the others he would be falling asleep on my lap. He had recently changed nurseries and spending more time outside so I wondered if he was just a bit more tired than normal due to that. Artie had always slept a lot so I wouldn’t say it concerned me enough to do anything about it, he just had phases were he slept more than others so I figured was like that.

April, things seemed to change a bit further, He seemed ok but seemed to be crashing out at nursery late in the day for a long nap. He also stopped eating his tea there, he wasn’t eating his dinners at home either, every single day was a struggle with food. I would plead, beg, use reward systems, bribery, threats anything to get him to eat but he just refused. He was eating a big lunch and breakfast plus snacks at nursery so I thought maybe he just wasn’t hungry. He literally used to just go to bed without any dinner. Mid-April, I started to notice he was tired again during the day. On 18th April he just fell asleep on the carpet in the hallway which was really unlike him. The part which I think shaded my concern was that there had been 4 incidents of dairy poisoning at nursery across March and April which made him very sick, so any complaints of tummy pain, sickness, diarrhoea or tiredness (it would often cause him to be up during the night a lot being sick or having screaming tummy pain) were often chalked up to being because of this. He started to wake up in the night which was really unlike him and was shuffling around a lot at night, he couldn’t seem to get comfortable. He was calling out in the night a lot all of a sudden and I wondered if it was nightmares or something. I also noticed when we went to the park was slow on his bike. I don’t know why I didn’t think to go to the GP at this point but kids do get tired, it doesn’t always mean cancer. On 21st April I found some tiny purple spots in his groin area and back of his neck. I got really upset when I found them and my husband told me I was being over the top and there is nothing wrong with him, but I think probably in the back of my mind I thought he hadn’t been quite right. I got really upset because I was so worried and messaged a few of my mum groups for advice, it was bank holiday Sunday and by the time the GP opened, it had gone so I falsely reassured myself it was a bruising from soft play.

On 29th April, we went on holiday to Butlins. Artie loves Butlins, he loves the arcades, the characters, shows, and he loves the silly trays at breakfast. He went to nursery on that morning, we used the time to pack the bags and car up and pick him up on the way so he can nap during the journey. We noticed he had some large insect bites that he got at nursery on his hand and arm. We travelled to Butlins. Whilst there, it became quite clear that it wasn’t just dinner he was refusing. Artie has always been a good eater but whilst there he stopped eating. At breakfast, he just sat there refusing to eat, which is so unusual for him. Lunchtime wasn’t much better and dinner was still off the menu. He wasn’t himself while we were out too, grumpy, tired, not wanting to play as much. By Wednesday night, he was being sick and in pain. Thursday morning he was exhausted, we decided to travel home early. When we got home, the bites on Artie’s arm were very swollen with a red ring around so we visited the GP. We are very lucky that our GP is efficient and he gave him a full exam on his tummy, lymph nodes and there was nothing to worry about there, he then said they could be a bit infected but to give it a week and if they didn’t go down to return. A week later I took him back and was given a cream and an antibiotic to give him a few days later if the cream didn’t help.

He had another dairy poisoning at nursery on 13th May and became unwell with sickness again and later this week I noticed the glands behind his ear pop up where the bites were and a fever appeared so I gave the antibiotics later that week as advised by the GP. He became very quickly unwell with an upset tummy and I took him back to the GP on 23rd May. He had missed days off of nursery where I just felt he wasn’t well or collected early, and they said he just hadn’t been himself. Artie was an outdoorsy, energetic boy and he just wanted to sit on his teacher’s lap or sleep. I just felt everything had been going on too long and he just wasn’t right. You know how as a Mum, you just know when they aren’t right. His glands were still up. He had also had a very wet pillow one night I noticed, I thought maybe we hadn’t dried his hair properly, the pillow was soaked but I have since discovered this was a big red flag for lymphoma. It wasn’t just a bit of sweaty head, the pillow was soaked with sweat. At the GP, The Dr. I saw wasn’t our usual GP and he didn’t check a thing. He said it’s a virus. I said about his glands and he felt behind his ear briefly and said it was normal, I didn’t think it was but figured I could come back and see our usual Dr if they didn’t go down. I certainly wasn’t worried about it being cancer, I just thought he had an infection or something, or we needed more help with his allergies.

After almost of month of reduced eating, 2 weeks with barely any eating, and less than a week later after taking him to the GP, I found the huge lump in his tummy and our journey began. You and read about when we were diagnosed in our earlier posts. If you aren’t a Facebook friend of mine, you can follow our journey (I’m writing the posts months behind) by following our website http://www.mamaloves.uk, on Facebook https://www.facebook.com/mamalovesuk/ , on twitter, https://twitter.com/mamalovesuk or @mamalovesuk on Instagram.

We found out that the night sweats were a big red flag for lymphoma, the reduced eating was because of the huge lump in his tummy, the petechia spots were due to the platelets in the blood dropping (you can get petechia for other reasons too), and the tiredness was because of his blood levels. Looking back in photos just before he was diagnosed he was very pale too, I just didn’t notice at the time. The swollen glands and temperature could be down to anything but they were there around 2 weeks before diagnosis and with the other symptoms I wish I’d been pushier in getting further tests, a blood test would have shown anomalies. I hope that by sharing this post, it will help another parent to get their child diagnosed faster. If you feel that something isn’t right, keep pushing. I regret not pushing harder when my gut told me something wasn’t right but you just don’t ever think it will be you that ends up with a child with cancer.

Veins on my sons distended stomach just before his Burkitts Lymphoma cancer diagnosis.

If you would like to donate to Artie’s fundraising page, the money is going towards the haematology and blood cancer ward at Great Ormond Street to buy new equipment. https://www.justgiving.com/fundraising/artie We are still also looking for raffle prizes for our events next month.