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...

Home At Last

I just realized it's been almost a week since my last post, and that's after I wrote I'm going to update more often... Shame on me.
Anyway, the best news so far are here: we're out of the hospital and had our first night at home in almost a month! Ida is doing well, although she is going through so much, and having a hard time right now. Both physically and mentally.
The last week was an effort to get her back in the game, after her fever went down and signs of infections were gone. She had stomach pain, constipation and was not really eating or drinking. Ida already lost some weight and has to eat. She eats better now, and also has a new feeding tube in her nose. It seems to work better than last time. Ida still gets bothered by it as soon as we use it. We have a small pump that is used to feed (a high energy special liquid food) very slowly.
We start to experience more and more the side effects of high doses of steroids over a few weeks... Ida have some anger management problems... She is very happy to be at home, though. So happy that she had some poo this morning!!! (That's the first in over 10 days).

Yesterday we were written out of the hospital. The IV needle was taken out. We got some special food and this pump for her and were on the way home.
The first stop was the nearest pharmacy. Here is Ida's cocktail of choice (not her choice but still):
Prednisolone - cortisone, a kind of steroid hormone, Ida gets 10 mg pill 3 times a day.
Diflucan - against fungi in the mouth, 10 mg a day.
Movicol - a powder to mix with liquid, against constipation, 3 doses a day.
Lanzo - protection against stomach ulcer, one pill a day.
Minifom- helps to reduce gas in the stomach, 10 drops 3 times a day.
Alvadon - liquid paracetamol, against pain and fever, when needed.
Once a week Ida gets her chemotherapy, this Monday it's Vincristine and Doxorubicine. Nothing to the spine this time. Last Monday she got some drugs directly to the bone marrow and a biopsy from the marrow was taken. It was an important test, which showed good response to the medication. Ida's bone marrow is almost cancer free. It is, however, nearly free of everything else, too. Ida's white blood cells count is so low, it's safe to say she does not have an immune system right now. The reason is the poisons mentioned above, Ida gets Vincristine once a week, 1 mg (one thousandth of a gram) only! This is enough to posion her body so it barely functions. The maximum amount you can give is 2.5 mg (that's what an adult would get, Ida hardly weights 10 kg...). To cure leukemia a lot of cells, cancer and healthy ones, need die.

All in all - many positive development. Ida's leukemia is under control, the side effects of the treatment are being medicated (they get worse the days directly after treatments) and we're at home!
So let's all have a good weekend...
Shabbat Shalom! (and a picture of Ida from last night)

Good Times

For the first time since going into the hospital Ida had an almost normal, good day. It started without fever, and a lower CRP level (106 down from 183). Around noon we went home for a while. We actually been out most of the time, Ida played in the sand box and in the swing, we had some hummus at an Israeli friend's cafe' and also spent half an hour at home. Ida was happy and charming like she always have been which was so so nice.
Here she is in her new haircut, enjoy it while it lasts...

All of the side effects from the previous post were better today and she could eat more than she did before. I don't know if it was all the distractions and the good times, or the fact that it is the end of the week. She gets her treatments on Mondays so I guess it would get worse again next week. But that doesn't matter. A day like today gives us the power to go on.
Ida does get rage attacks (when she kinda goes crazy), presumably because of the steroids (cortisone) she's getting. She also not a fan of taking her medications.
When she is happy she is so cute and fantastic, it doesn't matter how much hell we're going to be through to get her healthy. It's worth it.

Take A Deep Breath

When we first found out that Ida has leukemia, just over 2 weeks ago, I felt some sense of relief. Sure, no one is happy to hear his child have cancer but for the very least we knew what was wrong with Ida and that there is treatment.
As the days pass reality starts to sink in. It's a dreadful disease, and its treatment is even worse. We are into and ahead of a tough period, especially little Ida.
But let me start with the good news. Ida, though far from being well, is better than we would expect. She isn't happy, but she does express herself, she cries when in pain and protest when angry. She asks for stuff and talks sometimes. It's far better than she was last weekend, even though she is probably sicker now...
Another good thing, thinking a bit ahead, is that soon (sometimes in the end of September) we are moving to a new apartment. We bought it some months ago and as a positive coincidence it's located a walking distance from the hospital. In a couple of months we are surly going to appreciate that. We could be at home even at times when Ida needs to get daily treatments in the hospital.

Here is a picture of me and Ida from this morning. She is playing with her new princess book (which has over 600 stickers, to everyone's excitement). Ida had fever for a couple of days. In addition, one value in her blood tests went up significantly. It's called CRP (stands for C-reactive protein). It is a protein produced by the body as the first line of defense against inflammation. High count can indicate infection in the body. A healthy person has a count of about 3 mg/L. Ida's count went from 19 to over 120 within a day. It was 183 this morning, and presumably going to be yet higher tomorrow. For a healthy person those number are unreasonable but this is a typical condition in leukemia children as their immune system is practically on hold. The main defense in the body against infections are white blood cells, Ida has only few of those, hence this protein count continue to raise. An alarming high fever last night resulted with the immediate prescription of antibiotics. Antibiotics essentially do the job of the white blood cells. When the antibiotics are done with the infection the CRP level should sink. Her fever is already lower.

Ida's condition right now is almost exactly like the list of side effects of the chemotherapeutic drugs she is getting...
She started losing her hair, so say goodbye to this pretty curls, they'll be gone within days. It's the most visible side effect and the most identifiable with cancer but at least it doesn't hurt... The hair will also grow back. Right now it's a mess with all the hair so we're going to shave Ida's head soon.
She is constipated. She did not poo by herself in more than a week, and not expected to do so since her intestines are kinda on a break right now. She's being treated for that, but it's more of a grandma medicine. The treatment involves warm milk mixed with syrup, a flexible plastic tube and some Vaseline (and open a window when you're done...). Constipation may even be the cause for her infection, as some content from the intestines can leak and infect the blood.
Her nerves are effected too. She keeps touching her fingers like they feel weird. She also rubs her face, around the eyes and nose. It's likely a reaction to the chemo (vincristine).
She has some blisters in her mouth, but they don't look infected and it doesn't seems to bother her.
Her hemoglobin (the chemical in red blood cells that carries oxygen around the body) level was low, again as a result for the cell killing medicines she's getting. So she received a blood transfusion earlier. Normal level of hemoglobin is 150 g/L, when it drops below 80 blood is given (Ida had about 70 this morning). Yesterday she got some thrombocytes (the ingredient of the blood that makes it clogs).
Ida still doesn't eat as she should. She didn't lose any more weight in the last few days, but her body needs energy, especially now. We still wait with inserting a new feeding tube, but we might have to do it eventually.

Nothing of this is unusual. This is how it is and how it's going to be in the near future. And as I said - Ida takes it all pretty well. She's not a happy camper, but she's OK. Me and Camilla are fine, too.

I'm going to try and update more often in the coming days.