Friday, 24 February 2017

Fish Tank Therapy

While Ryan was going through his radiotherapy treatment he asked about having some fish again. When I say again we used to have a fish tank back in 2010, but when House met Van the fish unfortunately did not survive the ordeal.

Ry sold the idea to me as therapy to help him relax while recovering at home and the tank light would act as a night light for him also.


Corydora catfish

His birthday is in November, so the timing of his suggestion made perfect sense and solved the annual ‘what to get’ dilema.

Once his radio therapy finished the week after his 15th birthday we took Ryan shopping to purchase a new tank to set up and cycle before adding any fish as we chose to go for a basic tropical fish set up with the plan to house some tetra and corydora catfish.

Neon tetra

Ryan’s tank is now three months old and we are doing really well. The fish seem happy enough and more importantly, we haven’t lost any yet, so we must be doing something right. Ry feeds them every day, but I do all the cleaning and maintenance so as not to put him at any risk while he is neutropenic.


SpongeBob theme
We are hoping to add a few more small fish soon, but not sure what to go for. More tetra? Guppies? Ideas welcomed. Comment below with your suggestions.

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 are 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 approximately 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.