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.

A Quick Update

I don't really have time to write so here just a quick update.
Ida had some pain in her stomach, a x-ray showed she is constipated. She's being treated for that.
She also had fever since yesterday, It went up a lot a couple of hours ago (from around 38 to 39.6) and indications of infection were shown in her blood test this morning. We're not sure where this infection is but it's not unusual. Her immune system is very suppressed.
She got paracetamol for the fever and is getting antibiotic.
Hopefully she'll get some sleep tonight.
I'll be back later with more details.

Good Day

Ida is keeping on getting better, which is nice to see. This morning we took out the feeding tube from her nose, because we thought it was not placed very well in the stomach. Ida seemed to react to the smallest amount of liquid she was getting and it shouldn't be like that. Indeed, there was some blood on the tube when it came out, nothing too unusual apparently. Ida felt much better immediately and drank some milk by herself. She even ate a little bit today. Beside, she was happy most of the time, she sat by herself and spent some time outside. It's great to have her like that, even if we know it's going to get worse again sometime. But we think the feeding tube was one of the reasons she felt so bad this weekend.
It's not over with this tube though... Even if she started eating, it's not nearly enough and she still gets infusion. In addition, she has to be able to take her medicine orally in order to be at home. It went OK today with some of the medicine, but we didn't even dare to try the cortisone pill, which as I mentioned before - tastes horrible. The doctors argue in favor of a new feeding tube (they actually attempted to insert a new one this morning but Ida just threw up). We hope that we can skip it if she starts eating like she should. Today she got cortisone intravenously. Cortisone is an important part of Ida's treatment at the moment (it suppresses the immune system) but she needs to take it for only a couple more weeks (it will come back later in the treatment regimen).
Ida had the second round of chemotherapy yesterday, getting vincristine and a spinal shot. She is going to get the same treatment next Monday, then a bone marrow sample is taken, too. So next week we'll get the first indication of how the treatment effects Ida, and if some adjustments in term of medications is necessary.
I'm going to get a little deeper into chemotherapy some other time, the term itself gives most people the creeps, even if they don't really knows what it means. But not today, why spoiling the good day we had?

A Rough Weekend

It's not easy to sit and write when Ida is so sick.
The weekend was tough. Today, Monday, the little monkey feels somewhat better and shows glimpses of her old self.
She still doesn't eat and gets food and medicine through an assort of tubes connected to her body. Intravenous she gets glucose water (infusion) and another, high energy nutritions as well as the casual medicine or blood (right now - paracetamol, earlier - vincristine). She also has the feeding tube.
Since Friday Ida's condition deteriorated to the point we actually went home... No, seriously, she didn't really ate since Wednesday and didn't relieve herself since Monday. Still, on Saturday afternoon we went home for a trail. It lasted a few hours, which Ida spent sleeping...
By the evening it became impossible to feed her using the nose feeding tube because she just threw up as soon as we tried. She was, in addition, very sick and very weak. I'm going to spare you the description, let me just assure you that seeing one's child like this is simply heartbreaking.
When we came back to the hospital Ida vomited whatever was left in her stomach and got yet worse. For the very least she was getting some food in her through infusion.
The next day, which was yesterday, it became apparent that her digestive system is on a break and nothing is happening down there. The diagnostic involved a couple of doctors, x-ray, ultra sound tests and the likes. Not so pleasant for a healthy child, and so much worse for a sick one.
A plan was made, and once again, I'm going to save you all the details, but hopefully we managed to clean up her system. Today we started slowly to use the feeding tube again. But yesterday was bad. Having the reflex of vomiting on en empty stomach is not very pleasant as some of you surly know. But having to throw up for 24 hours straight when you are a very ill one and a half years old... Don't ask.
Today is better.
It's not good, but there is some light.
We're lucky to go through this with Ida, who's the funniest, brightest, most beautiful girl in the world.
Today is also two weeks since the first night in the hospital. It's soon time to give you the backdrop of all of this, and write a bit about the place we're in.

A Thank You note

Writing this blog I'm trying to avoid trivial statements and clichés.
However, I must thank all of you who commented here on the blog, on facebook or by e-mail.
We got mail from as south as South Africa and as north as Norrland, way out west in New York to the middle east and China.
I hear a lot "be strong" which means little to me.
Your comments and mail (and phones and SMS) make me and Camilla stronger.
Thank You!

No good news, sorry

Ida is not well, I'm sorry to say.
The last couple of day she was weak, pale and tried. She is not talking, she would not eat or drink, and for the most part only wants to lay down or sit in her stroller. She probably suffers from the side effects of the medicine, some may even cause mood changes and depression.
It doesn't come as a surprise - she is sick, and it's not exactly the flu... But seeing your child like this gets old pretty quickly.

To get some food and medicine in her we use the feeding tube I wrote about in the previous post. I do it and it works fine, as the picture on the left shows. Today we started giving some special food mix made for force feeding, if everything works we should be out of the hospital tomorrow. We are going to come back for a second round of treatments on Monday.

The picture at the end of this paragraph shows Ida's breakfast, which consists of: cortisone (a steroid used for treating leukemia), lactulose (against constipation), a drug against kidney stones, a drug against urinary tract infection, alvadon (paracetamol), morphine and... Oh yeah - some liquid food mixture. I hope I didn't forget anybody...
Considering the fact I was getting dizzy just being near the hospital a week ago, I think I'm coping well...
Today is Friday so I bought a bottle of wine and some Japanese Take Away, Ida got to open one of the fortune cookies, it said: "things will turn towards the bright side".
Lets hope they do!

Up and Down

Today is another day of ups and downs.
It started down. Ida could not eat, presumably as a result of blisters in her mouth caused by her treatment. She was hungry and wanted to eat but as soon as she had some food in her mouth she started crying and could not swallow. Another problem is one of the medicine she is taking. It's cortisone in form of a pill called prednisolone, which is extremely bitter and disgusting. Ida has to take it 3 times a day, but she usually just vomits as soon as we try to give it to her. We tried to mix it with jam and some other foods without any success.
Around noon she got some paracetamol and morphine. She gets these intravenous and at the same time she can get the cortisone and other medicine. The effect was pretty much immediate... She was happier, started talking and gladly ate some yogurt, pancake and a portion of lasagna.
She actually had one of her better periods since we got here - it was good to see her singing, playing and charming the nurses...
In the morning, when she was not able to eat, we had a discussion with her doctor about inserting a NG tube (zonda) for force feeding and for medicine. Even though she was eating after she got some pain killers, we decided to go through with it anyway. It's going to be so much easier to administrate medicine, and if needed also food. It's only a very thin plastic tube inserted to the nose and going down directly to the stomach. No big deal. As a teenager I used to insert those tubes to the cows in the kibbutz all the time...
She did get some thrombocytes transfusion before hand because her levels were a bit low (now days you can get one component of the blood so the transfusion consisted of yellow, rather than red, liquid). Then the tube was inserted to her nose. The first time it was blocked as soon as the nurse tried to give some medicine in it, so a second try was needed. But Ida took it bravely and all went OK.
So now Ida is having her afternoon nap, she was pretty mad before she fell asleep and tried to tear this tube out of her nose, but she'll get used to it.
In other (good) news: Ida's blood tests are good, white blood cells count continue to drop steadily, which means she reacts to the drugs.
As for me and Camilla - our mood directly correlate to Ida's condition. As soon as she feels a little better we feel better. And vice versa. That also means the swings are as fast as hers, sometimes it's a matter of minutes...
We are tired of being in the hospital, however, but now that we can give her food and medicine regardless of her condition, we should be out of here soon.

FAQ

To make this post a little interesting I'll write it in a question/answer format. Enjoy...

How does Ida feel today?
She was pretty good in the morning, so we got to go home for a few hours. But when she woke up in the afternoon she did not want to eat, or do anything else for that matter. Now were back in the hospital and Ida gets liquid infusion because she would not eat. She seems a little better.

Does that mean you'll be going home soon?
We hope so. The thought was to sleep at home tomorrow and if everything is fine to check out of here the next day. It all depends on how Ida feels, but hopefully we'll be out of here by the weekend.

And then what?
Then we are going to come for treatment and tests once a week, given Ida is not sick.

So what exactly is wrong with her?
She has cancer that effects her blood. Cancer is a disease that cause cells in the body to over-multiply. These cancer cells do nothing but take place and resources from healthy body cells or organs. Blood cells are produced in the bone marrow, there are red blood cells (called erythrocytes, they carry oxygen to and from organs), white blood cells (or leukocytes, they protect the body against infections) and platelets (thrombocytes, which make sure the blood clogs if we cut ourselves). Normally mature blood cells are released to the body when necessary. In Ida's case, immature white blood cells are released to the blood and continue to be produced out of control. They do not protect against infections and only take place in the blood stream for healthy cells.

And is that leukemia?
That's a type of leukemia called Acute (as oppose to chronic) Lymthoblastic Leukemia or ALL.

What causes leukemia?
The exact reason is unknown, it's probably a combination of genetic, exposure to toxin or radiation and a dash of bad luck.

I have a syringe here, should I suck out some of my bone marrow and send it to Ida?
It's probably not a good idea. Bone marrow transplant is an extreme measure and is practically none existing when treating ALL, plus this kind of prosedure is better done under medical supervision.

So what can be done?
Ida has started a treatment regimen consisted on chemotherapy and steroids. The goal of this treatment is to kill as many cancer cells in her blood as possible. Cancer cells multiply much faster than normal cells, so these drugs target fast-multiplying cells and kill them once they try to divide themselves.

Sound easy enough, what's the catch?
Well, the main problem is to get to all defected cells, otherwise the disease reoccurs. Different drugs are used over different periods, their effect is different too - some kill rapid multiplying cells while other alter DNA, for example.
Besides, cancer cells are not the only fast multiplying cells in the body. Cells that create hair multiply fast. The drugs cannot target specific cells but kill all fast multiplying cells, that's why Ida is going to lose her beautiful hair soon enough. Other side effects like nausea, blisters in the mouth (where cells also multiply rapidly) and tiredness are going to effect little Ida.
And like always in medicine, it's all depend on how Ida reacts to the various drugs.

Now that sounds pretty shitty, how long does the treatment regimen lasts?
About 2.5 years.

Is she going to be OK?
8 out of 10 children who have ALL are disease free by the end of the treatment.

Is there anything I can do?
Stay updated, stay in touch and have Ida in your prayers and thoughts. Those of you who are able - support cancer research, particularly cancer among children. The Swedish Children Cancer Fond would help Ida the most...

Live update - Moday, Auagust 11

Ida was not well today, she had fever and was generally unhappy.
She was treated with antibiotics, paracetamol and the doctors took some blood tests to check for infections. She was much better this evening - the fever went down and she got to eat something. She's now sleeping.

Yesterday, Sunday, Ida got the first doses of chemotherapeutic drugs (that's not entirely true, she got some on Friday directly to her spine, yesterday she got the first intravenous). It could be that she reacted on one of these. At this stage of her treatment regimen she gets Vincristin once a week and Doxorubicin every forth week. Both administrated intravenous.

I promise to get into more details regarding Ida's condition and the treatment she is getting as soon as I'll have some time. I find comfort in learning and understanding exactly what's going on and I intend to share this information in this blog.

To make it short - Ida is in the beginning of a treatment regimen which lasts about two and a half years. Unfortunately, days like today, when she is sick without an apparent reason are going to be common place. We need to hold on and stay positive.

The First Week

I'm going to jump ahead of time now and try to sum up our first week in the hospital. In later posts I'm going to go back and write more about Ida's diagnose and treatment. For now I'll try to catch up a little bit so I be better able to update on her condition.

As I wrote, her symptoms came and went without a diagnose for a while, yet they worsened considerably last Sunday. She became stiff, just wanted to lie down, was pale and without apatite. She seemed almost apatic. We went into the hospital with her and after a couple of basic tests were sent home, and were being told it was probably just a virus infection.

The next day Ida got even worse. To the above mentioned symptoms pain in the bones and spine was added. She laid on her back, pulling her legs to her chest in obvious agony.

This time the medical team in the hospital realised there was something seriously wrong with the little thing. Blood tests were taken and analysed under a microscope. These test reviled abnormality in her white blood cells.

That was last Monday (August 4th). On Tuesday afternoon we were told that a bone marrow sample was necessary, to test for leukemia.

To take a sample of the bone marrow a needle is inserted into the spinal cord. It is called a spinal tap.

Ida had her first spinal tap on Wednesday. She had her second on Friday, during a different procedure. Spinal taps for small children are preformed under anesthesia.

On Wednesday it became clear that Ida suffers from leukemia. There are some different kinds of leukemia, Ida suffers from Acute Lymphoblastic Leukemia (ALL) you can read about it here.

On Thursday we moved to children oncology unit, where Ida is going to get her treatment.

On Friday Ida went a second surgery in which a PAC was inserted under her collarbone (shown in the picture: the silver thing is inserted under the skin, the thin tube on the left is inserted in the main vain. In the center of the PAC there is silicon in which a needle can be inserted in order to take blood or give medicine, the see-through plastic tube attached to the needle remains outside the body), bone marrow was taken from her spine and Metotrexat was injected to her bone marrow (some chemotherapeutic drugs are ineffective when given in the blood and have to be injected direct to the bone marrow, more on that on later posts).

During the weekend her condition improved considerably. The colour was back in her face (partly thanks to a blood transfusion she received on Friday), she ate a little bit, started talking and bubbling again and even played and crawled a little. In the picture Ida is taking care of her dolls...

We hope for the best.

A Little Background

Ida was one and a half years old when she was diagnosed with leukemia.
Here she is:


Ida was sick for a while. The first symptoms appeared in the beginning of May. Camilla called me one afternoon and said that Ida wouldn't stand up... Back then she was learning to go, she wasn't walking by herself but with a little help she was a pretty good little walker.
When I came home it was obvious she had pain when trying to stand up - as soon as we tried to make her use her legs she started crying.

The next day we visit the hospital for the first time regarding her condition.
The following weeks were one illness after the other: cold, ear infection, vomiting and so on. Ida did not go or crawled in the beginning but after a while she got better.
But she wasn't walking. She also was weak and was having trouble lifting herself up.

I'll make a (three months) long story short. We were in and out of hospitals a few times, taking tests (blood, ultrasound, x-ray, DNA) and getting no answers. The theories ranged from a simple virus to en irreversible genetic condition. None of them were right.
And we knew that something was wrong.

But a week ago she got real sick.