LITTLE YELLOW PILLS

Day 6 steroid free and Oscar's skin is getting itchier by the hour! Last night his eyelids became puffy and his body had a wee sprinkling of eczema all over. We decided to give him his first dose of Methotrexate, this will help suppress Oscar's Immune system in the hope that he won't flare as much. We have been told he will need to be on this at least for a year. This will give his Immune system time to 'reset' itself hopefully.
As you can see by the photo these pills are so tiny. How can something so tiny be so strong! The pharmacist told Andrew to make sure no one pregnant even touches the pills...I'm sure Andrew was very quick to inform her this wouldn't be an issue!
Oscar didn't want to take his new medicine, he screamed and cried which is very unusual for him. I watched him swallow the pills and burst out crying! I didn't let Oscar see this though. Such a horrible feeling watching your child put toxic, chemotherapy drugs into his wee system. I know it's low dose and I know it's common practice for severe patients but when it's your child it's not a nice feeling. All the what if's etc..I can't think like that though, I have to be positive for Oscar and I have to believe we are making the right decision for him as we have run out of options. This was Option 'Z'.
Lastnight was an unsettled one. Oscar woke numerous times but only briefly each time. He was tired this morning and asked when the new medicine will make him feel better. His poor wee face is red and his wee eyes are all puffy and swollen. The drug takes 6-8 weeks to take complete effect but some people start to see results after a couple of weeks. So next Thursday Oscar will take another two pills, then will need a blood test on Saturday to check his liver and kidney function. If this is fine then he will start the following week on three pills weekly. He also takes half a folic acid pill half way through the week, this can help counteract potential side effects. We are also buying some oregano oil drops as this will hopefully do the same.
So lots going on right now in Oscars wee body. Fingers and toes crossed that the next couple of months brings less itch for our brave boy.

A SMALL GLIMMER

Last week was a crazy week with Oscar having a high temperature bug for 5 days. He ended up having the whole week off school! We were supposed to be starting the immune suppressants but the pharmacist said we need to wait until Oscar is over the bug. Then something quite strange happened. Over the weekend we noticed Oscars skin getting clearer by the day. We have been staring at him..and touching him in disbelief!! We used steroid creams three times last week...this isn't usually enough to help him at all. We are wondering if all the sleep he has had has helped his skin to heal..how could it not! The amount of sleep he had last night equates to his usual amount of three nights worth! Yesterday he told me he didn't feel itchy and wants to now wear clothes to bed. Honestly- his skin had completely cleared all over! The last time he looked this clear was eight months ago for a few days.
Usually after day three of no steroids his skin starts to change..we have made it to day five. However this morning I can see his skin changing for the worst. His back is starting to get rashy and spotty and his face is looking slightly red tinged. He also said this morning "I feel itchy again". I wasn't naive in thinking Oscar was magically cured but I can't begin to describe how lovely, and emotional it was to see him have a brief moment of being healthy..and happy! There were no troubles getting him ready for school yesterday and when he got home from school he wanted to go for a bike ride, do his homework, play on the trampoline..then go for another bike ride after dinner with his Dad! Oscar even wore clothes all afternoon! Usually he gets home from school, takes his clothes off and sits on the couch in a daze watching t.v. This has been a glimmer of what life will be like for Oscar when he is no longer itchy, bring it on!!
We also have a new addition to our family. Woof the dog! Little Woof has certainly put a smile on all our faces. Oscar was scared we would send him away if he reacted to Woof but we are happy to report this hasn't happened.
Now we need to make a decision as to what day to start methotrexate. I'm in two minds..Keep waiting to see what the next week brings, although I'm not sure what I'm really waiting for as Oscar's skin
will deteriorate from here on in. Perhaps we start the drugs tonight? ..... So undecided right now.

OUR HOSPITAL APPOINTMENT

We had Oscar's specialist appointment two days ago. It went much as I expected. We discussed immunosuppressants like we had previously talked about last Xmas then the specialist took a five second look at Oscar's back and tummy and commented his skin is a "Right wee mess". I replied that today is a good day for him. As he was assessing Oscar's skin Andrew asked if he had heard of Red Skin Syndrome. "Yes I have and Oscar does not have that, in fact many people don't believe in it and there are lots of horrible things about it on the Internet". End of conversation!!
This leaves me with many questions. How does he know Oscar doesn't have it? Does he believe in it or not? If not then what does he make of all the blogs and information about it on the Internet? We dropped this discussion promptly, partially because I felt we had been put in our place in that we know nothing about it and that it was pointless to continue challenging him as it would have ended up in a very heated discussion. Honestly, we don't know enough about it ourselves to be able to challenge a dermatologist on it. What we do know is that Oscar has every single symptom of Red Skin Syndrome. Oscar's skin presented with splotchy and spotty patches at the hospital and 24 hours later he is beginning to look red and inflamed and very, very dry after five days of not using topical steroids. It truely is a vicious cycle. I left the hospital with self doubt about everything, wondering if we are making the right decision going ahead with the immunosuppressants and cessation of topical steroids.

After our appointment Oscar had to have another blood test much to his disgust. He did tell me later in the day that it didn't actually hurt him! Once the blood test results come back the script will be sent to us so we can begin the next step of this crazy journey.

Oscar only had a few hours sleep last night(and me!) so he had a home day. I told him he would need to still do some reading, writing and maths. Well before 9 a.m he was sitting up at the table ready to
write...I was ready to go back to bed! However this is not an option having to care for our three crazy boys so the next best option was to make a coffee.
We are back on another stint of steroid creams and will continue to do this until the drugs kick in. Yes we are delaying the inevitable but we are hoping by doing it this way he won't be suffering earlier than needed. To be honest we have no idea what we are in for and what to expect. I wish I did know so I could mentally prepare myself. Whatever happens, we will get through it as a family and we will remain brave and positive for our wee man.

THE SMALL THINGS IN LIFE

We have started explaining to Oscar about the new medicine he will be on and that he will also need to have regular blood tests to monitor blood count, liver and kidney function. It turns out Oscar has a very good memory- last year when he got his blood tests taken for allergies the doctor was reluctant to test for everything so decided to only test for peanut as this had not been tested previously. I pushed for him to add in cats and dogs and a full blood count. The doctor believed that Oscar's allergies would not have changed from the previous year. So when we got to the lab they did the initial allergy test and I asked about the full blood count. The doctor hadn't added this in. Thankfully they were happy to do it but this required another test for Oscar. When the test results all came back positive I went back to the doctor demanding to be tested for everything, like I had initially asked. Away we go again for a third blood test. Everything was positive again..except for dust mites because they hadn't tested for that because the dam doctor hadn't requested it. So off we go again for Oscar's fourth blood test! After that I promised Oscar he wouldn't have to have a blood test for a very long time. Little did I know that I would be wrong. When I explained to him he would need some blood tests he reminded me of the promise I had made, I felt terrible breaking my promise.
Good old bribery has already come into play and the specialist appointment isn't for another week! Oscar choose some new lego yesterday that he has been having a great time building. This is his incentive to keep being a brave wee boy. ..or maybe we just can't help spoiling him!
A couple of months ago when Oscar was having a really bad weekend we decided as a family we needed something exciting to look forward to, a focus for some of our rough days. Initially Andrew and I had talked about going away for a weekend together as a family when Oscar is well again to spoil the boys and reward ourselves for surviving the last few years. I thought somewhere not too far away but  that changed to thinking how cool it would be to go on an aeroplane somewhere- as Oscar is aviation mad! Auckland was on my list as the boys would love the Zoo but as Andrew pointed out the cost of flying us all to Auckland versus The Gold Coast is probably near the same price!! So when Oscar was having an itchy couch day we told the boys our plan, that when Oscar is feeling much better..(and when we have saved enough money!) we are all going to Australia to go to "The place that lights up at night time." This is what Oscar calls DreamWorld, I think he might be getting mixed up with Disney Land as I'm pretty sure Dream World isn't open at night?! The boys are so excited about this and are all already saving money in their wee money boxes. On rough days Oscar will ask if we can watch Dream World on You Tube. So the focus is well and truly working and if it can give him a few moments here and there of having something to look forward to and forgetting about being itchy then it will all be worth it. Actually I think it is something for us all to look forward to. A family holiday away to celebrate moving forward and being happy and healthy .

Last night  I went to our local dairy to buy some bread and also rice crackers for Oscar. They didn't have any but I did find something very exciting. Little teddy bear biscuits that are completely safe for him to eat! Not the healthiest of foods I know but Oscar doesn't really have any 'treat foods' so when I showed him the box his wee face just lit up. So lovely for us to see, and surprisingly the little biscuits didn't taste too bad.

Oscar's skin is being held at bay by steroid cream still. We feel we can't put him through the pain and agony that comes with steroid withdrawal until he starts the Immunosuppressants. In saying that his skin is still red and itchy but he seems to be mostly tolerating this. I refuse to put on the super strong steroid creams...actually they are in the rubbish so I can't!
We are still changing sheets daily as they are usually blood stained and have so much shedded skin on them. It is yet another thing to do in my busy day but I have to admit it is rather lovely climbing into a freshly made bed with clean sheets every night!
Well one week to go until the specialist appointment in Dunedin!

•