Skip to main content

Three Months Cancer Free


Three Months Cancer Free, www.bellybuttonpanda.co.uk


Cancer Free

On 5th August 2017 we hit a new milestone. Three months post-chemo and cancer-free. I can't believe the progress Ryan has made, it has astounded even me. The doctors are impressed and I'm impressed. His hair is growing back beautifully.

It just looks like a really short crew cut now. He has put on a wonderful amount of weight that puts him now absolutely on the typical average scale for his height and age. He also no longer has Adrenal Insufficiency either which surprised even the doctors that he recovered so quickly.
We now need to go and buy him new clothes because he's grown so well and improved so much and I’ll need to buy a new school uniform ready for September.

Ryan’s sleep patterns are still a mess though, to the point he is almost nocturnal and that's not for want of trying to form some sort of routine by waking him in the mornings and letting the dogs into his room, but he does seem to tire still quite easily and he did manage to pick up a cold a couple of weeks ago because he went to school for the last day of term.

Post Chemo

Ryan spent the final day in school with his friends because they were not doing any work particularly and it was just nice to him to touch base before going back in September. He seemed to enjoy the experience when he came home and he was quite good, considering.

He was less tired than I expected him to be, but as the night went on and in the early hours of the Friday morning he developed a stinking cold and quite a temperature so I rang his oncology nurse on Friday morning just to check things because I knew he was going to get ill at some point, I just did not expect him to get ill after just one day in school.

I just wanted to check the protocol now that he is post-chemo. I was unsure if it was just to treat as a normal cold with rest fluids and meds, which it was, but because he had such a high temperature the nurse did want the consultant to see Ryan at Clinic but Ryan steadfastly refused as he says he's had enough of hospitals to last him a lifetime and he did not want to go because every time we have been they have kept him in.

The nurse wasn't particularly happy with me but I did promise that I would monitor him closely and if I was at all concerned I would take him back. I am happy he has just a genuine cold and nothing more serious which unfortunately all 4 of us ended up getting, but although three of us have now recovered Ryan is still got it lingering on, so it shows his immune system is still quite weak.

Going Away

We've been asked several times if we're going away for the summer what our plans are and as I've tried to explain to everyone that asked our home is Ryan’s safe place.

He does not like going away anyway and as we've spent so much of the last year in the hospital in Cardiff away from home to have a staycation is more appealing to us than the additional stress of organising and going away somewhere different outside of his comfort zone.  Ryan would not cope with a change of scenery anyway because of his autism not to mention the three dogs.

We have been offered the use of a caravan by one of the Kids Cancer Charity but the unknown and upheaval that it would have meant for Ryan put him into distress so it was decided that it would be better not to go away at this stage, Instead to let him recuperate at home where he feels the most relaxed.

Three Months cancer Free. Ryan and Dogs bellybuttonpanda.co.uk
Ryan is happiest at home with our dogs. 


Comments

  1. Solid (and amazing) progress. It was good to have an update as we hesitate to fuss you - but we did want to know how everything was going xxxxxx

    ReplyDelete
    Replies
    1. Hi, thanks for the comment. We have enjoyed some well earned R&R, but I will be doing periodic updates on progress. Our next challenge is going back to school part time in September. Sarah x

      Delete

Post a Comment

Thanks for your comment. We appreciate having you along for the ride.

Popular Posts

Missing Education due to Illness

The Importance of Attendance If you read any news articles on education, correspondence from your child’s school, or are simply clued up on parenting then you will know the importance of school attendance. Schools place a great deal of focus on targets and will often offer incentives and competitions to encourage and increase attendance figures, but what if your child has a serious illness. What happens if they really are not well enough to attend school. What happens then? Attendance targets at Ryan's school are currently set at 95% attendance for the school year. Therefore realistically your child can only miss 10 school days due to illness. Medical appointments such as GP or Dentist do not count, but you are encouraged to make these appointments outside of the school day where feasibly possible. If your child consistently misses school, even if it is only one day a week, that equates to 39 days over the school year. Even missing one day in a week results in pressure on the

Chemotherapy Cycle 5

What is Normal? With this being our penultimate cycle of chemotherapy I have had several family and friends comment to me “oh I bet you can't wait to get back to normal”. This has really thrown and upset me because it seems to come across that they have failed to comprehend the fact that we have 2-3 years of maintenance ahead and at least two more general anaesthetic surgeries. Not to mention physiotherapy as it is expected Ryan will take 12+ months to heal from the effects of being poisoned from the inside out. Normal is long way off yet. While everyone else appears to all be getting excited that Ryan is coming to an end of his chemotherapy protocol treatment, Ryan himself is becoming more and more tired with the cumulative effect of the onslaught of the chemotherapy drugs and is spending long periods of time in hospital after each cycle with infections due to his impaired immune system now as a result. Ryan is far from excited. Ryan is exhausted. We still have one more cycle t

Questions to ask after Cancer diagnosis

Cancer Sucks I have shared with you Ryan's lymphoma journey where we have talked about the ups, the downs, the protocols for drugs, the side effects, but I realised recently I have never shared the questions. This post is all about what to ask when you receive a diagnosis of cancer. Receiving a cancer diagnosis is never ever going to be seen as good news. It can never be dressed up or made pretty. It is devastating, it is gut-wrenching, it is life-changing. There is so much information to process you will not think of the questions you need to ask or you will have hundreds of questions you want to ask all at once. These are just some of the questions you can ask once you have processed the news, in order to gain a better understanding of your fight ahead. General Information What type of cancer do I have? Where is it located? What are the risk factors for this disease? Is this type of cancer caused by genetic factors? Are other members of my family at risk? What lifestyle c

Worrying About the Future

  Worrying About the Future. Ryan said to me recently. "Childhood gave me Autism. My teens gave me cancer. What will adulthood bring?" Big worries for someone so young. So much pressure and conditioning are placed upon us about the importance of education and the set path that the majority of us will take through the system to university and/or the job market. What happens if you do not follow that path or miss so much education that the path is no longer open to you. How do you plan for the future? What options are there available to you? Ryan was excluded from his primary school in year 2 and I home schooled him for a year while we worked with the Educational Psychologist to find a placement that would suit his complex needs at the time. Due to his speech, language and communication difficulties the decision was made to withdraw him from Welsh-medium education and focus on English only which meant our choices were limited in the area of Wales that we call home. We

Peritonitis

Emergency Surgery On the morning of 25 October 2016 Ryan was complaining that his PEG feeding tube was unbearably painful. He was due for a review anyway that day at Velindre Cancer Centre and a PEG specialist nurse came for to look at Ryan. She said the site was a bit weepy and raw, she thinks he possibly caught or pulled it in the night. She is confident that it is fine and she also gave it another good clean.  A week on and we are back to square one. The district nurse came out on Monday 31 October 2016 to advance (turn) 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 the Teenage Cancer Trust ward in Cardiff, where two gastro nurses met us and spent the best part of an hour, torturing Ryan while they 'forced' the PEG to move, which they eventually did. Or so they thought.  The following week, 7 November 2016, the district Nurse came again to the h