Time at home

Happy holidays everyone!

We are having a relax Christmas at home, only the three of us, which is nice. Ida got a lot of presents, naturally and is very busy taking care of all her dolls. She calls basically everything which is smaller than her "baby" (pronounced "bibi"). She has quite the entourage of dolls; most of them have no hair, of course. She has a couple of mini-strollers to drive them around, a doll-bed etc. Ida takes care the dolls are getting food, sleep and the occasion medical procedure (like putting in a needle - Ida cleans the area, punch it with a pen and then put on a bandage...).

She seems very well - full of energy and mostly happy. She sleeps less but unfortunately also eats much less. In fact it's been almost 2 weeks that she eats very little. She does have some kind of infection in her stomach and maybe also in her ear. It breaks down like this: the cortisone she was taking may cause ulcer, so Ida was taking a medicine for that. This medicine may cause this stomach sickness so now she is taking some antibiotics against that (which, in its turn may cause bad taste in the mouth so she doesn't eat...). It doesn't really ends.

Anyway, on Monday we'll go in the hospital for a 5 days treatment. Beside the treatments in the hospital (every fortnight, and later once a month) Ida is taking 2 chemo drugs in a pill form. Those medicines may affect her blood value; especially her white blood cells (make her sensitive for infections).

Despite this apparently grim post, we are all doing well. I was working a lot before the holiday so it's great to be off for a while and spend time with Ida. She talks more and more and is very bright.

I, Ida and Camilla are wishing everyone following this blog (and those who doesn't, too) a happy Christmas or Chanukah and a fantastic New Year.

 

Day by day

There is not much to write about, so I wasn't writing lately.
Considering everything Ida is going through she is doing pretty good. She had a couple of tough weeks, was tired and cranky. She was getting cortisone again that might cause mood swings, it also gives apatite and indeed Ida went up close to 2 kg in weight!
Now she is better again, and very cute. Her blood test are good and the last biopsy (10 days ago) still shows no leukemia.
We had visits from my mother and then Camilla's mother was here this weekend. It's great for Ida to be with them. Here is a picture from en extreme baking session last Saturday.

Ida's treatments are still quite intensive, this week she is in the hospital every day to get some medicine. She also has a couple of pills she takes at home (she got much better in taking her medicine).
As I wrote before, Ida is treated according to a protocol (regimen), we're just about to start the next phase called 'maintenance therapy'. Ida is still going to get more or less the same drugs as before, only less often. So soon treatments would be take place every 2 weeks, and then up to 4 weeks in between treatments.
Until now Ida never missed a scheduled treatment, which is very good. But it also means she'll go in for a 5 days long treatment on 30/12. At least we don't have to make plans for New Years Eve...
A great part of Ida's relative well-being (she is actually fine most of the time, but we know she has cancer, hence - relative) is Camilla. Ida started her treatment about 130 days ago. On about 70 of those days she was in the hospital... Camilla was with her every minute (we all were there together on the first month). And beside taking care of Ida, Camilla would often send a piece of cake or the like to parents of a sicker child... "Normal" parents would find it hard to put themselves in our shoes, but once you comforted with a situation like this you just have to do the best you can, be positive and try to make the best out this. Camilla is doing above and beyond.
So we hope to be a little less in the hospital in the near future. Another mission, once Ida doesn't have pain any more - is to get her on her feet (literally). Here is a short video to demonstrate Ida's method of walking.



(She was showing some dance moves, too)
There is no rush, and we do have contact with a physiotherapist. It's going to be easier to get her to walk than to get her sleep by herself, that's for sure...