Wednesday, 22 February 2017

Cycle 2

After cycle 1 had finished we treated ourselves to a very quiet Christmas at home. It was lovely to have 3 whole weeks without a hospital stay. I barely knew what to do with myself. Pre cycle 2 hydration was planned for Tuesday 3rd Jan, where Ryan and I met with Dr C for a progress update, which was very positive and encouraging. Cycle 2 then began as planned on Wednesday 4th January 2017 with the same SMILE protocol as detailed on our separate page. 

Day 1 went like this: Ryan started Methotrexate at 9:30am. He then fell asleep at 11am and slept till 7pm. Resulting in a very boring day for me. I helped the youth worker to take down all the Christmas decorations from the ward. I went for a walk around the pond on the hospital grounds. I met with the Gastro nurse and then the dietitian but neither of those meetings took very long. Overall a thumb twiddling day, but hey no sickness. To be fair I could perhaps have done more sorting his feeds out, but it was rather nice to have a week off my 'nursing' duties and instead I get to just be mum. 

This second round however didn't go quite as smoothly as the first. Ryan had a mild, grade 1 reaction to the Ifosfamide drug on the Thursday (day 2) which was picked up amazingly quickly by the wonderful nurse looking after him and promptly treated with Methylene Blue. This will now have to be give as a prophylaxis on all future cycles. 

His bloods dropped to low levels, much more quickly, but started GCSF injections as before, and fortunately did not become febrile neutropenic, as we had feared. He did however suffer much more with the sickness and struggled with his PEG feeding. Although on day 16 he did eat 2 dairylea dunker tubes. For those that know Ryan hasn't eaten any solid food since October 2016, with was a huge milestone in his treatment progress.

How Methylene Blue gets its name...

Tuesday, 21 February 2017

Cashing in on Cancer

Those of you that follow our blog regularly may remember a similar titled post that I wrote way back in September 2014 where I talked about Cashing in on Autism. Hey I know, I can't usually remember what I did yesterday, but I do remember all of our posts.

In this post I discussed not wanting to put ads into my blog as I didn't want to make money from Ryan's autism. Cancer however is a whole other story. Times have changed. I have had to temporarily stop work in order to care for Ry as he needs 24hr a day monitoring and meds. Cancer is expensive, so expensive. My pay has already dropped by half, yet our heating, electricity, food bills and travelling expenses have all increased. 

According to the cancer charity CLIC Sargent cancer costs on average £600 extra a month. I would agree with this figure yet my wages have halved. This is why I have made the decision to allow adverts onto my blog. 

As was commented on my previous post on this subject. Just because something is advertised on your Blog does not mean that money jumps out of MY pocket. 

I thought this to be very sound advice and hope that you can accept the addition to our journey. 

Monday, 20 February 2017

Cycle 1

We were originally given a tentative date of Monday 21 November to begin his first of six SMILE chemotherapy cycles, but the delay to Radiotherapy due to the peritonitis episode pushed that date back once again. One thing you have to accept with cancer, is nothing going to plan, or to date. Not easy if you a control freak like me.

Each Chemo cycle will last 28 days. Day 1-4 will be in the Teenage Cancer Trust Unit (TCT), Cardiff. Days 5-28 will be either at home recovering or in Glangwili Hospital, Carmarthen for bloods and chemo injections. I will put a full breakdown of the 5 drugs that SMILE stands for, how they are given and on which days onto a separate post here for anyone who is interested in that much detail. 

Before chemotherapy could commence Ryan needed to have a Hickman Line fitted which meant operation number 7 on 1st December 2016. Most teenage and adult patients have a PICC line, but due to Ryan's malnutrition the veins in his arms are approx 25% of their normal size meaning a PICC was not a viable option. 

Cycle 1 commenced on Sunday 4 December 2016, when Ryan was admitted to TCT for pre-chemo hydration to prepare his liver and kidneys for the onslaught of poisoning.  

As it goes Ryan breezed through the 4 days of chemo and made it look all relatively easy considering what we have been through with the sepsis and peritonitis. He cleared the methotrexate level to the required number by day 4 and although he was extremely fatigued this was to be expected.

We were discharged on day 5 and had to travel to our local hospital on day 6 to be shown how to self administer the GCSF injections to assist with neutrophil recovery. Unfortunately we had to travel all the way back to Cardiff on day 8 for this PEG asparaginase injection, but they did agree if he didn't suffer any adverse reaction then would be allowed to have the future injections in our local hospital. Fortunately all went well.

On Day 16 Ryan woke to a bed full of hair, intense muscle and bone pain and was unfortunately sick for the next 6 days. It was quite a shock to see him lose all his hair in one go. We hadn't necessarily expected it to all go at once, or even so soon into cycle 1.

The stats for his allowed discharge and next cycle commencing are as follows.

Next cycle if:
Neutrophils >1
Platelets >75
Urinary ph >8
Discharge allowed if:
Methotrexate level <0.05 micromol/L
Neutrophils >0.5

Saturday, 11 February 2017

Epstein-Barr Virus

The Epstein-Barr Virus (which causes Glandular Fever) is still proliferating in Ryan's immune system and is what is driving the T-cell cancer. Immunology are looking at Ryan's DNA to try and work out why his body has not been able to kill off the EBV from 2 years ago. They wonder if he has an underlying immune problem. 90% of the population have been exposed to EBV, like chicken pox it is in our memory cells, but for Ryan it is still a live virus so they are tracking it through his plasma to know that they have killed it off (with the RT and chemo). If even 1 cell remains in his plasma then the cancer could re-grow. He has a 69% chance of Chemo being successful at killing off the EBV and cancerous T-cells and a 40% chance of relapse, which I thought was quite good at less than half, although I would like the 69 to be a bit higher personally.

Dr Connor (DC) follow up clinic 2nd November 2016. Medically Ry is making positive progress. The tumor in his throat is almost gone and the tissue is looking almost visibly normal now. Big yay. With regard to lymphoma cell proliferation in his immune system the EBV DNA in his plasma is currently at 1000. DC has said this is the marker they will use from here on as his tumor load. Ryan will be given the all clear when this figure reaches 0 (zero) and will be given cured status when his has been at 0 for more than 6 months after chemo.

We have a psychologist involved too who has helped us create a 'communication passport' which has gone into his medical notes. He has a playlist on his phone that he either listens to on headphones or they can play on speakers during treatments and tests. They have been wonderful at accommodating him. Appointments can take twice as long as most other peoples but everyone is so laid back. He swears at the nurses sometimes but they say they are all thick skinned. 

I don't think there is even a word for how tired I am. I am a worried and lost mum who battled for 2 years to get doctors to see if there was something more serious going on with my darling son's chronic illness. Medical professionals were convinced his sustained illness was the lingering effects of Glandular Fever, but something kept nagging me that it was something more. There is a saying, a worried mum does better research than the FBI. 

I don't want it to be this but here we are and we will battle to the bitter end and kick cancer's butt. Ryan and I live away from home during the week for treatment while my hubby works, looks after the house, dogs and our eldest son. Being a split family is so hard it hurts, but we will make it work. We have to make it work. We have to win. 

Wednesday, 25 January 2017


On the morning of 25th October Ryan was complaining that his PEG was really painful. He was due for a review anyway that day at Velindre Cancer Centre and a PEG specialist nurse came for a look, she said it was a bit weepy and raw, she thinks he possibly caught or pulled it in the night. She is confident it is fine and has given it another good clean. 
A week on and we are back to square one. District nurse came out on Monday 31st October to advance the PEG tube as is needed each week after the first month. The nurse was unable to move the disc and caused Ryan an incredible amount of pain. We ended up having to go to TCT where two gastro nurse met us and spent the best part of an hour, torturing Ryan while the 'forced' the PEG to move, which they eventually did. Or so they thought. 

The following week, 7th November, the district Nurse came again to the house to do the 2nd advance. This time Ryan screamed a blood curdling scream and said "it has burst". I manged to get him into the car, to take him to TCT, Cardiff again, but had to stop on the hard shoulder and ring the ward as he was in so much pain. They were reluctant for me to call an ambulance as we had no idea how long we would have to wait and we would have been taken to Carmarthen, not Cardiff as it was closest. 

I eventually (driving at a snails pace) got him to Cardiff hospital where the Gastro surgeon met us and scans were done. It took a long time to get through the scans as Ry was in so much pain. Gas and air all the way. Which he did enjoy (small positive). Scans showed the PEG tube was no longer in his stomach, hence the pain and sickness, which is what we had guessed. Surgeons were frantically organising for him to go in to surgery in the next couple of hours. , we were just waiting for Anaesthetists to come do their checks and give ok that he is well enough. 

Ryan was eventually taken into emergency surgery at 9:15pm. They had discussed several options with me before I signed consent, depending what they found when they get the camera down. Hoping they would be able to perform keyhole through bellybutton. Maybe laparotomy, but hopefully not obviously. Surgeon said it would be a least a couple of hours.  

At 1:35am Tuesday 8th November, the Surgeon came to see me. They had to do a full laparotomy. The disc that holds the PEG in place had eaten away his stomach lining and had migrated out of his stomach, causing a lot of internal infection, which ultimately was peritonitis. They cleaned away the infection and inserted a different type of feeding tube a temporary one called a Malacott tube, but it can not be used for 5 days as Ryan's stomach needs time to heal and recover. The surgeon was brutally honest with me in those early hours, I had only had 1.5 hours sleep and had to process the news Mr D was giving me that he had never operated on a child with such low muscle mass and he was very doubtful that the sutures would hold. The next 48 hours where critical. Either Ryan would make it or he wouldn't.

It was confirmed Ryan needed 2 days complete rest and sedation. Those 2 days, Tuesday and Wednesday worked and Ryan defied the odds once again. On the Wednesday at ward rounds we had:

Gastro Surgeon: Happy with Ryan's progress. Blood numbers and obs are as they should be. 
Dietitian: They may start with a little water on Friday to see how well his stomach tolerates, they may leave him till Saturday.
Physiotherapist: To help with moving about after Laparotomy, bed rest and sedation. This was to begin on the Friday with target of sitting on the edge of the bed. 
Gastro nurse: To explain in more detail the new feeding tube and care. 

The morning of Thursday 10th November was Ryan's 15th birthday and he decided to celebrate by having a small lung aspiration which meant a frantic hour while medics got mobile xray and started him on antibiotics. Once again their quick thinking and actions prevented any lung infection taking hold and although Ry had a really rough day. He was saved from a whole lot worse.   

Finally after another 10 day spell in Children's Hospital for Wales Ryan was finally well enough to be ambulanced across Cardiff town to Velindre to finish RT and back to Cardiff Heath and we were ultimately discharged on Thursday 18th November for 2 weeks well deserved R&R before commencing chemo which originally should have started on 21st November. 
So not content with his ultra rare lymphoma diagnosis Ryan decides to go all out and add Sepsis and Peritonitis to his collection of troubles. 
It has also been confirmed that he needs to have a Hickman Line fitted as his veins are not big enough for a PICC line? That will be operation number 7.

Sunday, 1 January 2017

Dreams and Wishes

For some idiotic reason I thought it would be a good idea to sign up to Sober October. Macmillan have already given us such huge support since Ryan's diagnosis and I thought there is no way I can get through this without wine, but then Ryan has to battle this without, so surly I can support him without and wanted to give something back. 

£375 was raised for Macmillan in two weeks which was just fantastic. I found it hard, I won't lie, but seeing this figure was all the motivation I needed.  💜💚💜

As it transpires October was to prove to be extraordinarily challenging, as Ryan battled sepsisI am pleased to be able to say, as I type this, that Ryan has fully recovered from his Sepsis. After 10 days in the TCT unit, Cardiff of rest, fluids, antibiotics, enteral feeding, steroids and radiotherapy I can actually report that Ryan is no longer malnourished to the point that his able to eat solid food for the first time in three months and he said to me today that he doesn't need to contort his neck now to ease the pain when eating.

Unfortunately this is only a short term respite as radiotherapy side effects began to show towards the end of his third week, but we were able to arrange for Dreams and Wishes to deliver his first ever new phone to Velindre Cancer Centre which was a small positive. 

In total during Sober October, I was able to raise a staggering £415 for Macmillan which was just wonderful. 💚💜💚 and I discovered also that his radiotherapy dot is in fact a real life actual tattoo. He is 14 I tell you. Can E4TattooFixers customise it do you think?

Tuesday, 6 December 2016


A very surreal day was had Thursday 22 Sept 2016, when Ryan spent a day at Velindre Cancer Centre, Cardiff in their Mould Room where he had his personal mask made for his impending 5 week course of radiotherapy (RT).

He then had to endure yet another CT scan to mark the mask up for the lasers to do their thing. He will be having 50gy in 25 fractions. 1 session every day for 5 weeks on lymph tissue in his tonsil and throat areas. 
Side affects will be his ability to swallow. Loss of taste buds. Salivary glands dry up, sickness and extreme fatigue, all of which will begin around 2 weeks into the treatment and last for 3-6 weeks after treatment has finished. 
He is also having RT first and then Chemo which I understand is usually the other way round so not clear on why. I believe it is because he isn't well enough to begin IV chemo and has been on Steroid chemo up to now in an attempt to build him up a bit, but I don't see that it has worked. If anything he has continued to deteriorate.
We went back into hospital on Monday 3 October to have his NG tube removed and a PEG tube fitted instead ready for RT.
So much has happened in such a short space I can't see the woods for the trees. I find I just don't have the confidence to distinguish between what is disease and what is general teenage grumpiness or what is something as serious as Sepsis and I didn't realise he was 'that bad' so feeling a bit useless right now, but trying to accept it is all a steep learning curve.
We finally got to start RT which has been a breeze. The sessions he missed last week due to the Sepsis have been 'added' on to the other end so his last session will unfortunately be on his 15 birthday. We have however arranged for Dreams and Wishes to deliver his first ever new phone that day as a small positive.

The Anti-sickness tablets are working well, but the mouth ulcers are awful bless him. We have 3 different mouth washes to uses each one twice a day. He now has 3 different mouthwashes, 2 pain meds, gastic tablets, anti sickness tabs, dioralyte and 2 different laxatives. 🙈

To help with the side effects to his mouth, it was suggested Ryan try a soft electronic tooth brush to help with his oral hygiene. I took him shopping where he chose a spider man one. I thought it was funny at 14, but if it helps him to brush than who is to judge and he has been using it well ever since.  One of the mouth washes however did not go down so well. Caphosol I admit doesn't taste particularly nice (I tried a bit), but to him he said it is like the fires of Mordor. That was the first wash they gave us. So then we went to chlorhexidine, but that dried his mouth more. Next was a home made salt water wash and now we have benzydamine and gelclair to try. Gelcair didn't even get off the starting block, but the benzydamine (Difflam) has been a trusty faithful throughout his treatment to date. 
Radiotherapy is the easy bit. He just lays on a bed for 10 mins and the beam does its thing. There is no pain, he can't feel it.  It is the side effects hours after, where we sit at night as I gently rub his back while he vomits huge amounts of mucus as the tumor breaks down. 

Before any of this, he already had serious issues with sensory processing due to his autism, resulting in sensitivity to tastes and textures, in addition to hypersensitivity to noise, light and touch.  He is 15yo and he had only ever once hugged me in his life and I have never had a kiss, so you can imagine how difficult it is for him to have medics fussing round him, noisy machines, bright hospital lights. It is dreadful to go through cancer treatment and made worse for him when these 'ordinary background sounds/lights/touch that we take for granted are physically painful for him. For the majority of his treatments so far they have had to sedate him where possible. He is doing amazingly well considering. He has had a couple of minor meltdowns but who wouldn't. We will get there. It is just 1 step forward and about 5 backwards at the moment.