Finally worth a smile.

The 24th of August Willy, the kids and I took the early train to Paris, 6:15am. Direction Necker Hospital for Zoe. Every time we have been to see the specialist we have walked out with worse news than we walked in with and I suppose I wasn't expecting any different. I can honestly say that I didn't sleep more than a few hours. The previous days and nights were the same. Anxious about the possibility of adding another treatment (Chemo shots) to what is already a very powerful drug (Actemra). 

We arrived and the wait was not very long. We spoke about the side effects that Zoe has been having to Actemra (Spots and loose bowls), which didn't seem too worrying to her specialist so we moved right along to the examination.

She has gained movement in all of her joints that were effected, her inflammation levels have dropped and her Liver and Lungs are doing better. So all in all Actemra is doing what it is meant to do. We were basically told that the pain that she suffers is "her" normal.... We can not eliminate all of her pain all of the time which is why she is on Advil 3 times a day.

I have a big problem giving her so many powerful drugs because she is only 2 years old and so small. So we asked if on good days we can start to eliminate 1 dose of Advil and the answer was 'Yes, we can see how that goes'. First reason to smile.. I felt like that was a small step forward in gaining some control over this horrible disease.

The Dr said she wont be giving her the Chemo shots but will organize an X-ray of her hips when she has her next IV treatment in Troyes (which she has every 2 weeks). So for now No Chemo and there was no talk of infiltrations either. Second reason to smile!!!

I started to get a little excited and asked if she continues down this road will it mean she will be in remission and they said we are far from Remission and they prefer not to talk about it now. Oh well I figured what the hell I just wanted to ask and even though I expected that response I was still a little disappointed. I know we have only been in this fight for a year now and there are other family's who have been fighting this disease for many many years and are still fighting today, so why should we be any different?? It doesn't hurt to hope though.

Zoe will be starting pre-school in September. 4 mornings a week. I know this may come as a shock to some of my Australian friends but here in France the kids start pre-school normally around 3 years of age. However if the town you live in is offering a younger program then the 2 year olds can also attend. It isn't possible for Zoe to continue at day-care due to Actemra which is an immuno-suppressant drug. She is susceptible to all illnesses and it can become dangerous for her if she continues getting sick because they have to stop her infusions of Actemra and therefore put her at risk of flare ups with her SJIA.  So if there is someone sick in her pre-school class we will just keep her home. Due to a contract with a day-care centre we 'Can' keep her home but we still have to 'Pay'!!! From February to May we kept Zoe home but still had to Pay the entire 4 months that she missed. So financially Pre-school was the better option for us.

I feel like my face cracked and I have been able to smile for the first time in a year!!!! I am so relieved! It may be a very small step forward but I can and Will rejoice in that!!!!!!! I guess that is what it is all about and what will eventually see us through; It isn't about having the perfect healthy child that every parent wants and in away expects but it is more about remembering that we are so very lucky that we have 2 healthy children and days when our not so healthy child can "Look" healthy :°) I have always believed that an invisible disease is a horrible thing to have because no one understands but now I think maybe it is better for her that way. That will be another post.

We are now on holidays in the west of France and soon we will be taking the kids to their surprise stay at Disney Land Paris!!!! Can't wait.