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.

Back At The Home

Ida is done with her treatment, sooner than expected, and we all went home tonight. She feels fine, most of the time. She had some fever during the day, not too high, maybe because of the medication. It was not enough to keep us in the hospital, however.
We'll be back there on Sunday for a blood test and then on Monday for treatment.
Every time we check in for treatment a needle is inserted in Ida's chest (in her port-a-cath). Most of the chemo is administrated intravenously. On Sundays before treatments blood can be taken from the finger.
It turns out that as long as Ida is relatively healthy, going in and out of the hospital so often is the hardest part of this whole story. After this Monday we have, for the first time, two weeks until the next treatment. Still, they need to check her blood 2-3 times a week...
In the picture you can see Ida fighting boredom...

A Weekly Update...

That's what became of this blog - one update a week... What a shame... But I'm not going to apologize this time, it's not because I'm lazy, I was very busy since coming back home and even better - there was not much to report. We were home the whole time, beside a couple of hospital visits to take a blood test, Ida was happy for the most part and all was almost normal. Sure, she still gets some medication and at time she is less than great but nothing too bad.
Her latest biopsy (last Monday) showed no sign of leukemia (less than 0.1%). This is called remission, it means there are no visible cancer in her blood right now. It absolutely does not mean that she is cured. It still good news, and the treatment goes as planed.

Let's go back in time for a second. Until about 35 years ago there was no treatment to leukemia. All children who had it did not survive. The introduction of chemotherapy, in the late 60s changed that. Those of you who are interested can read this good Wikipedia article about the history of chemotherapy.
Today leukemia is treated according to a protocol in which different drugs are given over different periods in combination. Experience showed that combination is the key for long lasting remissions and eventually curing the disease. In Sweden the Nordic Protocol is used, there are other protocols which are pretty similar. The medication is given according to a strict scheme, tests (blood and bone marrow) are taken to determine if any adjustments are necessary.
The first period (or block) is called induction, that's the most aggressive treatment, aimed to kill as many cancer cells as possible and achieve remission. Ida is done with that. She started today the second block called consolidation therapy. The goal here is to further reduce cancer cells (even those undetected by tests) and achieve complete remission. The final stage in called maintenance therapy.
So Ida is in the hospital right now, with Camilla, I just got home. She gets different drugs than the ones she got before. Right now, for example, she is getting Methotrexate. It's the same drug she gets directly in her spine (and had it this morning, under anesthesia). Ida gets it also intravenously, in drops, over a period of 24 hours. She then gets glucose infusion (or water with some sugar) until the drug is completely washed from her body, after additional 3-4 days. So she would be hospitalized until the end of the week. But as for one hour ago she feels pretty good.

Ida is going to be a part of a new study for cancer treatment. It's an experiment in which one medicine (called puri-nethol) is given in higher doses than the ones stated in the protocol. The initial dose is 25 mg, that's what all children get, if all go well Ida would get 50 mg and than 75 mg. I'm not sure exactly what does mean, beside the fact that as a part of the study many extra tests are taken and Ida's state is monitored much closer than normal. What I do understand is that research shows that children who respond well to this specific drug have a lower chance for relapse (return of the cancer following remission). They don't know why that happens but by giving a higher dose they (and by they I mean doctors) hope to reduce relapses.

In other news - we got the key to our new apartment, so i'll be busy fixing in there before we move, in a couple of weeks.

And back to the good news from the begining of the post. During the time Ida was sick we almost forgot how cute and charming she was before. Really, those of you who met her would back me up here, she have always been so social, bright and happy baby. Now it's starting to come back - doctors, nurses and actually everyone who meets her in the hospital can't get enough of her... :-)
It doesn't get much easier yet, but we have Ida.

A Quick One From Denver

I'm in Denver, Colorado for 5 days now in a conference and "custom installation" exhibition (special audio and video solutions like all house control or home theater). That's what I do at work - design and install this kind of stuff. I'm so busy I barely had time to check my e-mail this week. From 8 o'clock in the morning I'm in courses, meetings with system designers and sell representatives, checking out new products on the exhibition floor. In the evenings it's events and dinners. It's a lot of fun but a lot of work also. I talk with Camilla a couple of minutes every morning but that's about it. I once tried to talk with Ida using Skype (I have also a web camera in my computer) but she got upset when she saw me... From Camilla I know that everything is fine in the home front. Ida is not especially happy but she is doing good and glad to be with her grandma.
I really miss my girls a lot and happy to fly back home tomorrow night.
I'll have some updates once I'm back in Sweden.

The Little Eating Machine

Yesterday Ida ate the most she ever have eaten in one day. It's safe to say she ate yesterday more than during 3 weeks in the hospital... She was eating stuff she would never touch before, everything from pasta to spicy taco sauce... It's the cortisone, we were told about this hunger rage and it's nice to finally see it. We also put butter and cream in just about anything to pump her with fat and calories. She needs them.
The weekend was great for us, Ida was cute and happy, we've been at home and had a good, normal time. Her blood tests also show improvement. So it did not feel great to go back to the hospital again this morning. Ida got her forth treatment today, which meant putting the IV needle back in her chest and spending the entire day in the hospital. It all went fine, even though Ida was not happy to be back there, understandably.
In between all that, don't forget we're talking about a one and a half years old, so there is much that happens anyway. Any parent knows how funny and fantastic a child is in that age, and Ida is no different, despite her illness. She talks more (and tries singing sometimes), she likes Winnie the Pooh, still likes to dig in the sand box, to paint and most of all - to put stickers (or plasters) on anything or anyone around.
I doubt everything would be that bright in the next couple of days, as Ida did get chemo today, and is going to have some side effects. I hope she would feel OK, as she is stronger and is at home.
As for me - I'm going to Denver tomorrow morning with work. I'll be away for 6 days, which doesn't feel all that great, but this trip has been booked ages ago and I don't want to miss it. Camilla's mother is coming to be with the girls and I'm sure it will be fine.
I'll try to keep you posted on Ida, as well as on the latest in audio and video equipment...