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...

Feeling Good

It was a good week for Ida - she was in good spirits and generally happy. We just hope it's going to continue like that.
Tomorrow she'll get some chemo (vincristine) and go on cortisone again (she had a week break with that). Apparently this vincristine does not effect her blood values but she may have bone pain or constipation from it. Nothing serious this week though. Her blood values (levels of hemoglobin, white blood cells etc.) are good, so hopefully Ida is going to keep on feeling like she did.
She is incredibally cute. Here she is checking some tunes on the iPod...

What's else? My mother is here for a visit, and Ida likes playing with her. Thanks for all the people back home who sent gifts and regards for Ida.

Her favorite movie lately is Kung Fu Panda (recommended!) and today she got a little panda toy and was very exited.

In the coming week Ida would eat cortisone again, and in the weeks after that - some new drugs she did not take before. The cortisone has some side effects; Ida got very hungry at times, had some problems sleeping but nothing too bad.

I don't want to sound too optimistic as there is still a long way to go. We do feel the worse is behind us but you never know... This treatment is far from being risk-free... In the hospital we meet other parents and it's always strange when they ask 'how is Ida'. We don't want to sound as if it's all good because their child might be much worse. On the other hand we don't want to bring up the bad stuff so they won't feel sorry for us.

For real - I don't think anyone should feel sorry for me, I have the most beautiful little girl in the world, she is sick now but that does not change a thing. Here we are together.

No Excuses

Ida had treatments for more than 3 months now, and it's becoming a part of life.
She eats. Not much, beside when having cortisone on the menu... (in the last few days she's eating like crazy). She tries to be happy, even though it's obvious it's hard on her and she misses a lot of a healthy child life.
Beside the physical stuff, she is kind of bored doing the same things every day and not seeing other people. Today she was in the hospital the whole day, got to play with a friend (Melea, 6 months older than Ida, ALL) and had a great time. She cried when she had to go home. Hopefully she'll be well enough to visit the daycare with Camilla for a few hours later this week.

We spoil her. As we should (I'm actually very happy to see her eating chocolate).
Ida is a very clever girl and she knows exactly what's going on. So she makes most of the decision around the house right now... She wants to do everything by herself. She loves water and animals, she talks a little bit, and understands everything (Swedish + Hebrew) and as you see is very cute.

The only thing that still worries is the (lack of) walking. Ida recognize the existence of walking but does not really go there... In the hospital we're being told that a drug Ida is getting (vincristine) may cause bone pains. She is getting this drug every Monday this month.

(It's actually a pretty brutal part of the treatment)

Mentally Ida is way pass walking and beside crawling (forward and backwards) she is getting around in a variety of ways. She tries to walk on her knees (slow), gliding on an object she wants to transport, crawling on 3 with one hand holding something (uncomfortable). Preferably mama or papa carries her.

But she has to take her medicine. The feeding tube went out a couple of weeks ago and Ida needs to eat her medicine. We dissolve the pills in water inside a syringe and Ida drinks it. She does not appreciate it very much and often resist, but she knows she has to. In the hospital she is a star and tries to assist the nurses as much as she can...

It's not easy but it could be worse. In the first weeks in the hospital we saw all the playing kids in the corridors while Ida could not leave the bed, speak or eat. It's the opposite now with children who just start the treatment.

I promise to update the blog more often. It's nice to know people out there care about Ida and missed reading about her. Those of you who speaks Swedish (or wants to look at the pics) should check out Camilla's blog.

Another Week

It was kind of a typical week, until today at least, which was a little dramatic. I'll get to that later.
Ida gets her medicine in the beginning of the week, when it's vincristine, like last week, she is effected a couple of days later - she lose her appetite and have pain in her bones. Because it's a cytotoxic (or chemo, if you prefer) her blood values may be reduced. That's usually means low hemoglobin level which makes her pale and tired (hemoglobin transfers oxygen to and from the organs). So what do you know - her blood tests this weekend showed hemoglobin level under what is considered acceptable. She was supposed to get a blood transfusion on Sunday, but since we were going in for treatment on Monday anyway we decided to wait with the blood.

On Monday (yesterday) she got Oncaspar, which is a modified enzyme (L-asparaginase), it is administrated intramuscular (into the thigh muscle). It is not a chemotherapeutic drug, as it is not suppose to kill body cells. It has, however, a list of side effects that can fill a couple of posts, so I'll spare you. Ida gets it every two weeks, yesterday was the forth time, I believe. Sure enough she reacts on it, mildly the last time, a little worse yesterday. She gets rash like symptoms - red around the eyes and ears, red dots and the like. It is treated with some anti-allergy drug.
That was yesterday, so we (and the doctors) decided to wait with the blood transfusion one more day.

Before we get to the drama you need to realize that every such treatment is a whole day saga. When Ida gets Oncaspar, which is just a shot in the leg, she has to stay under observation for 4 hours. When She gets blood it takes 3 hours. Before or after it's always blood tests, and usually we have to wait for the results a couple of hours (and when I say we, I mean Camilla...) On the other hand next Monday Ida gets high dose metroxtate (chemo), so she'll stay in the hospital until Thursday...

So today she was getting the long awaited blood transfusion. I was at work and my mobile was breaking down on me. I got a massage from Camilla around noon to call her immediately. When I did she only said to get to the hospital as fast as possible. That was a fun ride as you can imagine. Lucky there are bus lanes in Stockholm... As it turned out Ida had some reaction while getting the blood. She first throw up and later started shaking and got red and puffy all over. I'm sure it was not pretty and very scary for Camilla. Yet when I came there, some half hour later, she was better. She received cortisone and anti-allergy medication. Her fever went up afterward and she had to get something for that.
The doctors could not really say what caused that. It could be a reaction for this specific blood or maybe an infection in the port-a-cath which was pushed in by the blood. They took some tests...
Camilla was upset because she said twice to the nurse that she suspect something was wrong and was practically ignored. It was almost an hour until they stopped the transfusion, even though Ida throw up as soon as it started. She received about 40 ml blood only, so the plan was to try again later.
The kicker to this whole story is that her afternoon blood tests showed a much higher level of hemoglobin (94 g/L up from 78 yesterday, 82 is the minimum before blood is given). So Ida does not need any other transfusion after all...
She was fine this evening when we came home. We had some homemade pizza and Ida was happy to eat the unbaked dough like most healthy children do...

As you might already figured out it's Camilla that goes through most of the hardships, as I'm working full time. She is the one that goes to the hospital 3-4 times a week (now she can actually walk there from our new apartment), she gets puked on way more often than I do... She is the one making friends with other parents in the oncology unit and most important- she has to keep an eye on Ida and everything that goes on with her.
I'm just lucky to have those two brave girls.

It was a long post, and a longer week. Ida is sleeping now, and so should I. Good night.

Sunday Morning

It's Sunday, the girls are out so I have some time to write.
Ida was very well for a week or so but in the last couple of days she is not that well... She is effected by her treatment, had a little fever last night (that means a trip to the hospital for tests) and is not eating (which means force feeding in her tube).

Beside that I'm very busy at work and at home - still a lot left to fix in the apartment.
Oren, my brother, was her last week from New York. It was nice, and more so - helpful, to have him here. He helped with the move and filled up the fridge with good food... Ida felt really good all week which was nice, as she had a week break in her treatment. Her grandfather was also here last weekend from Denmark and Ida was very happy to spend some time with him.
Here they are together:
Ida's immediate family is spread in four different countries, no one is closer than 600 Km from Stockholm, so we are obviously delighted to get some visits.

No more breaks in Ida's treatment at least until the end of the year. In fact, her treatment is about to intensify in a couple of weeks. So it's probably going to get worse before it gets better...
We kinda get used to go in and out of the hospital so often, but I still got sad yesterday, coming home at 7 in the evening just to hear we have to go in.
That's how it is.
On a positive note - it's been two months of treatment now, as hard as it's been Ida is reacting well to the medicine and according to her doctors everything is going like it should.
I can't even imagine what she is going through, but she is tough and coping bravely. I know she is strong enough to fight through this.

Shanah Tova

Or happy new year, to the less Jewish of you. Today is the Jewish New Year and we "celebrate" by unpacking our new apartment. My brother is here from New York so it's kinda a family feeling.
Ida is doing well since moving here, she is in a good mood. This week she does not get treatment in the hospital, only blood tests and medication at home (1 cytotoxic, 2 antibiotics).
Last week she was sick, apparently something in the stomach, she didn't eat and had a lot of pain when she moved. We've been in the hospital for a few days and left without really knowing what it was. The problem is that if we go in the hospital because of a suspected infection, we don't get to be in the oncology unit (Q84). We get to Q80, the intensive care unit. Compare to Q84, with the playing area, two kitchens (full with food for the children), TV and DVD in every room (and DVD library), stuff and other parents we know, intensive care is like prison. Ida can't leave the room, not even to the corridor, only one parent can sleep there and we know more the doctors about Ida's treatment... At some point we just asked to go home, even if Ida was not well. Being there "for observation" was not helping.
So for a couple of days last week I worked until 4, then worked in the apartment (fixing, painting), then went to the hospital to stay with Ida so Camilla have time to pack...
On Saturday we moved, with help of The A Team and Camilla's mom.
The new apartment has a bath tub to Ida's delight, there is a back yard with a sand box, big bedroom for her, and you can walk to the hospital in like 20 minutes...
So once we settle down expect more details (and pictures).
In the meantime - Shanah Tova - we wish you a calm, happy, fulfilling year. And health.