OPSITE +APEEL= no tears!!

OPSITE dressing + APEEL adhesive remover = no more tears when the nurse comes!!

Both available via prescription! We only just discovered this when Adi developed an allergy to her flexigrip dressings and had to change to opsite to cover her hickman line. With the apeel, it comes off like a dream!! YAY!!! 

The greatest gift a father can get

This time last year we did not know what was wrong Adi, the year has be challenging, yet the greatest gift I received this fathers day was gentle kiss  from my daughter (I asked for a cuddle but she said 'you're spiky').

Men, illness, not speaking about things and feeling in control

I have not written anything for while, this is not because I did not want too but because I have been focused.

I am saddened that my daughter is ill, I feel powerless to help. Or should I say the only power I have is to try to make her happy, I hope that is enough. I have create situations to distract or focus me. I need to feel in control, to feel empowered. We have an allotment, we are growing peas, beans, spuds, and the like. I feel that I am growing fresh food that I know my daughter will love. I am setting up my own business, it will work, it is working. Why because I have a goal, there will be a positive outcome.

I choose not to speak about things much more, but I am worried, hurt, angry, frustrated and focused. I am focused on doing my best to grow the best veg and have the most successful business in the world, for my daughter. If I did not have these things, create these things, be able to manage these things then I would be no good to my family. I would recommend to all those in our situation to create something, draw, paint, write, make a beautiful garden it will allow you to be or at least  feel in control or something, it is therapy.

Up, up and away!

The support we get from the charities around us is phenomenal.

Rainbow Trust has been great. Our family contact is Alison, the practical help she gives us just makes things that little bit easier. In the last few weeks, she has taken us to GOSH, stayed with us while Adi was having tests and brought us home again. She also took me out for a bit of retail therapy, playing chase with Adi round the shop, while I picked out some new outfits (I haven't bought any new clothes for over a year and can't fit into my old stuff as sitting around in hospitals isn't really conducive to keeping a trim figure). Having her around for moral support as well as bag carrying and child distraction duties is invaluable. Family and friends will offer to help but sometimes it is easier having someone around who isn't emotionally involved.

We have also just come back from an amazing weekend with Camp Simcha. Their Retreat is designed to give the kids a good time and the parents a much needed rest. As soon as you arrive, each child is assigned a big brother or sister, who looks after them for the 3 days. For most parents this means you don't see your child from breakfast to bedtime! We didn't know where Asher was most of the time, Adi was a little more difficult to lose but my husband and I did get to enjoy a candlelit dinner for two! Activities were non-stop, we enjoyed pony rides, face painting, music, crafts and even went up in a helicopter. The kids had an amazing time and it was also a chance to meet other families going through the same thing but in a fun, relaxed atmosphere, very different from chatting in hospital corridors and parents' rooms. For a couple of days we were normal, almost.

Helicopter ride!
Adi wanted to go again as soon as she got  down!

Asher was more chilled
but it was his favourite activity!

My most precious possession..

 Friday was another rollercoaster day.

Adi went to the local hospital for her dose of Vincristine - the drug that is affecting the feeling in her feet and can give her constipation. She was as good as gold and all went without a hitch, except that I asked the consultant a question that I wish I hadn't. I asked him if he knew why they  had used the cisplatin, that damaged her ears, in the first place. He said 'well to be honest, it is all guesswork really.' He explained that all the original research was done with cisplatin but that all the 'platins' were pretty interchangeable..carboplatin is more likely to damage the liver, cisplatin affects the ears. The bit that is ringing in MY ears though is the ;it's all guesswork really'. It is my and my husband's job to stay positive and happy through all of this. Comments like that can make it very hard.

What makes it easy though is Adi - who is racing around being a perfectly normal, if thoroughly spoilt, 3 year old and the kindness of people around us. The picture is of the kids sitting in their new playhouse. Our good friends gave it to us - actually took a day off work, hired a van and delivered it! Kids are absolutely thrilled. We are bowled over.

Also on Friday, Adi had a visit from her friend from Camp Simcha who comes each week to do art with her. They were huddled in a corner, whispering away..Adi presented me with a jewelry box she had made. When I opened it there was a lovely necklace inside that she had also made for me. 'It's beautiful, like you Mummy', Adi said. And it was, and it is the most precious thing that I own.

Little Sis to the rescue.

Asher had an appointment with a paediatrician this morning. Nothing serious, at least we didn't think so, but he was having a lot of stomach aches earlier in the year and we weren't prepared to risk making the same mistake as we did with Adi and letting it carry on unchecked. So we got a referral and saw a very nice doctor who examined him properly and didn't make me feel like a hysterical, over anxious parent, even though there was nothing obviously wrong with him.

Despite the amount of times he has been in hospital and at home and watched Adi being checked over, Asher was nervous. Or maybe it was because of what he'd seen or maybe he just wants the extra attention, I'm not sure but he was reluctant to even be measured and weighed. Adi, though, was an old hand at this. She took off her shoes and showed him what to do and where to stand. She held his hand when he was having his blood pressure taken and pressed the (correct) button on the machine. She reassured him that he was OK and doing a good job when they took blood.  She was genuinely a real help and I am so proud of her.

The hospital staff were excellent. Kind and understanding of our situation. The nurse who took Asher's blood was great. when she'd finished she said, "my daughter had the same as yours when she was 18 months old". I asked "how old is she now?". "23", she said. I wanted to hug her and not let go.

The hardest decisions.....

Yesterday we got to GOSH at 10am and were admitted on to Elephant ward, as we were expecting to stay for a couple of days as they administered the 36 hours of hydration needed to accompany the cisplatin drug.

We knew the doctors would be discussing Adi's hearing and the effect the cisplatin was having on it. I was braced for a difficult discussion with the doctors - Dave and I had decided that we would go with the most effective drug to beat the cancer, whatever the long term consequences but it wasn't an easy decision for me to make. I was surprised, however, to find that the decision was taken out of my hands completely.

Around 1.30pm, they came in to tell me that they were changing from cisplatin to carboplatin, which she has had before. I had to wait a few more hours before I could speak to the consultant to understand completely what the implications of this change were, but even before I did I felt a huge weight lifting and realised how distressed I had been that Adi might lose her hearing. I wasn't sorry that I hadn't been involved in the decision but did need to understand their thinking.

The consultant was one I hadn't met before but was excellent, making things clear for me. Had we continued with the cisplatin, it was very likely that Adi would lose her hearing significantly. At the moment, she has just lost the top frequencies but previous experience indicated that one more dose would result in her losing the speech frequencies too. Whilst there have been no studies comparing the effectiveness of carboplatin versus cisplatin, they have been used interchangeably in this chemotherapy protocol for decades with no discernible impacts on the outcome of the treatment. This is particularly due to the fact that this is what is called 'consolidation treatment'. The real treatment was the surgery and the radiotherapy, this is just to try to capture any lingering cancerous cells....The way I understand it is that this is the mouthwash you use to make sure your breath is fresh after you've done the real work scrubbing away all the bits of food with the toothbrush. It makes little difference whether you go for cool mint or spearmint flavour.

The downside is that the carboplatin will have a more significant effect on Adi's immunity, making her very susceptible to infection, so we are back to glaring at anyone daring to sneeze within a 10mile radius of where we are standing and staying away from nurseries and soft play areas. The plus side, carboplatin only takes an hour to administer, so we were home by 9pm and slept in our own beds! With luck, we will only be day patients from now on! We have one more dose of carboplatin to go now, which will be in 6 weeks time......

It was a very long day yesterday. Made so much easier by the help and support of volunteers from Camp Simcha, who played for hours with Adi; stickers and chocolate brought by my cousin, Judith; and finished off with a pizza and bottle of wine that was very much needed at the end of the day! Thank you for that Amanda!