Regine's Book (2 page)

The children's unit was much better—renovated and a lot larger. The rooms were big and had flatscreen TVs. There was even space for my family. My mood got way better, even though I still felt really sick.

On Friday, August 29, Regine's mother, Julianne, wrote in her diary:

We're now at Day 5 in the Trondheim hospital, and it's been exactly one week since we found out that Regine had acute leukemia. Who could have possibly seen this coming? In the blink of an eye we went
from being blissfully unaware to being devastated by desperation, pain, and a sense of injustice. Why would this happen to our dearest possession—our lovely, intelligent daughter, who's never hurt anyone? Everything I've ever seen from her shows that she's a good person through and through. Still, it's happening; it seems unreal. Can this actually be happening? It's unbearable.

Our life was turned upside down in the course of a few minutes. Life isn't a given anymore (and that thought makes my head spin). It seems like I'm losing my grip on reality, like the world is slipping away from me, and it's driving me crazy.

The day before we traveled to St. Olav's Hospital, Regine and I went to the movies to see
Mamma Mia,
just to do something nice together, and so that we would be able to focus on something else for a bit. It wasn't easy to concentrate, and I cried during the wedding
scene. The bride was wearing such a beautiful wedding dress, and I imagined what Regine would look like in a dress like that. I want more than anything to see Regine in a dress like that one day.

There were so many tears and it was so hard to sleep during the weekend before we traveled to St. Olav's. I was frightened of what lay in store for us, and worried about what Regine would have to go through—not to mention the emotional toll that this was taking on her.

When we arrived at the hospital on Monday, August 25, they took a bone marrow biopsy from Regine. It was brutal and painful, but she clenched her teeth and didn't make a sound. The doctors told us that there was no doubt that Regine had AML. After telling us what to expect and what could potentially go wrong, she was admitted to Children-4 (the children's unit for cancer and blood diseases) at 11:30 pm. They took great care of us there. The next step is to have another conversation with the new doctors.

Yesterday they took another biopsy, and then inserted a Hickman line. A Hickman line is a long intravenous tube inserted under the skin on your chest, and it's what they use to administer chemo and take blood tests. Here at the children's hospital, the procedure is always done under general anesthesia, and everything went well. When Regine woke up, she was still under the influence of the anesthesia, and we got to hear quite a few interesting bits of information. Among other things, she admitted that she and Silje had raided our liquor cabinet and tried a bit of everything, and that they almost broke a cognac bottle. The way she said it, in a slurred whisper, was so funny that Lasse and I had to laugh. She also said that Elise should move here and take dance classes at Trondheim…so that she could try out for
So You Think You Can Dance.
But eventually the laughter had to stop. After a while, Regine said she wanted an assisted suicide.

Regine has highs and lows emotionally. Sometimes she feels like she wants to die right away to avoid all the pain. But other times (most of the time), she's optimistic, and says she's going to get through this, and that she feels comforted at the thought of all the people who love her. As she put it recently, “You won't get rid of me so easily.”

I'm so impressed by Regine. She's so calm and strong and sensible—and talks very openly with doctors, nurses, and the other patients and their families. I'm proud of you, Regine: You're unique, and you're special, and I love you so much!

After a day of chemo, she's in pretty good shape and has a good appetite. Eli Ann and Anne Marthe visited this evening, and the three of them sat in her room and had a little pizza party together. The girls brought pictures and decorated the room with them, and Anne Marthe's parents gave Regine a basket of goodies too. Regine's good mood (partly the result of all the drugs) has been rubbing off on us, too.

On Sunday, September 7, Regine writes in her mother's diary:

I can't sleep, so I thought I would write something here. This is my first night alone at the hospital. I guess things are going pretty well so far, but I'm still really scared, and afraid I might even have a panic attack. But they're taking good care of me here. I'm crying right now, but there are a few different reasons why. I read what Mom wrote and I was totally overwhelmed. And I'm thinking of all the great people who are supporting me through this tough time—both friends and family. Martin sent flowers twice. He really cares. Not many guys would do that.

Everyone tells me I'll get better, but I'm having a hard time believing them. I'm just so afraid of dying. What if I don't make it? What if
I die… ? I'm scared of death. I have so much planned for the future. No one should die when they're seventeen.

I've been sick for the last two days. Fever. Have started taking antibiotics and am getting better, but visually, things seem to shift around a lot. I'm told the entire family is really upset and feeling pretty down about all of this. It's unsettling. They wouldn't be so scared if they knew I'd survive. And if I die, what then? It will destroy them.

Why did I take things for granted before? Why did this have to happen before I had a chance to realize how valuable life is? I'm only seventeen. It's so unfair.

Wednesday, November 5, 2008

A
s a lot of people probably know, chemo can have some complications. I had to have the strongest chemo cycle that they can give—at least as far as I know. The cycle lasted six days. It actually went okay, all things considered. You have to be prepared for blood poisoning (which I got), and E. coli in the blood is a pretty big deal, but they gave me antibiotics, and things eventually got better. With a temperature of 105.8 (and chills), there still wasn't anything to do but just wait for my blood count to recover. Unfortunately, my platelet count was so low that my spleen started to bleed. It hurt so much I couldn't get out of bed.

About the same time, I got some unexpected and shocking news. The whole time that all this was going on, the doctors had been trying to determine what subclass of AML I had. Apparently it was really hard to figure out, and they thought it had to be something pretty unusual. The answer came three weeks after I had my first bone
marrow biopsy. I had something called myelodysplastic syndrome (“MDS”).
³

MDS causes cells to function incorrectly; it makes the cells defective. I also have a defect in chromosome 7,
⁴
which just developed randomly. No one knows why it happened. Technically speaking, it's not leukemia, but it's just as serious, and it creates the same symptoms and often gets treated the same way. Without treatment, the disease will eventually evolve into AML. MDS is a very rare disease, especially among younger people.

The doctors didn't think I needed more chemo because the disease wasn't progressing that quickly, but then one day, a doctor came in with a serious look on his face. The white blood cell count had gone up in a short period, so a new chemo cycle was urgent.

I was totally shocked.

To function, the body needs physical activity, and that was pretty much impossible considering how much pain I was in. I was lying down for so long that fluid collected in my lungs. The doctors thought antibiotics would help, but after a while, it just got worse. My lungs filled up with even more fluid and I had a lot of intense pain, and it became really hard to breathe. Things just got worse and worse, and pretty soon I had to be moved to the main intensive care unit. The
nurses there were competent and easygoing, but I had such severe pain that I had to take morphine and a type of sleep medicine. A drain was put through my chest wall to remove the fluid. But finally it became so difficult to breathe that I was put on a respirator. I lay there for four days. It was horrible when I finally had to wake up, since it felt like I was suffocating. The first thing I did was try to remove the tube from my throat. I couldn't speak. So frustrating. I tried writing but it didn't go well because of all the medication.

Because I had intestinal inflammation, they had to feed me intravenously. But then my stomach kept getting bigger and bigger, so they had to stop the intravenous food. I couldn't eat or drink anything.

Eventually I was put into the children's intensive care unit. I don't know quite what to say about that, but it was really bad. I couldn't move for about two to three weeks, and I couldn't eat any food at first either. Eventually I was able to start on some real foods, but I didn't really want anything, and only ate about two pretzels a day. My stomach couldn't handle any more. I was also shown to have E. coli in my blood
again
. I was so cold that I shook. Thankfully, the antibiotics helped a lot. Someone gave me ten times more sleeping medicine than I should have had—just by mistake—which is pretty shocking, and makes me worried. Luckily they figured it out in time. A lot of what happened in the unit could have been avoided—but I won't go into that too much.

When I was well enough, I was moved back to the children's unit for cancer and blood diseases. Finally, I thought, a better environment. I stayed there for a week before I could go home. It came as a shock that it was even a possibility. I hadn't been home for ten weeks. My doctor and nurse were really happy for me. So was I (to say the least!). It wasn't that easy to get home though, because my body was dependent on morphine. I had some serious withdrawal symptoms but managed to travel home anyway without too many problems.

Tomorrow I'm traveling to Oslo for an informational meeting in advance of the upcoming bone marrow transplant. A donor hasn't been found yet, but they're saying it won't be a problem to find one; it just takes a while. Meanwhile, I'll probably need to stay in Trondheim for chemo.

Saturday, November 8, 2008

M
y first impression was good. We sat in the waiting room and were greeted by a woman with a big friendly smile on her face. She was to accompany us throughout the program. The schedule they gave us was packed: Among other things, I was going to have my heart checked, get X-rays taken, have my teeth checked, talk to a doctor and a nurse, have my lungs tested, talk to a previous transplant patient, and then do some other stuff too. This would all take place over just two days.

My first impression of the doctor was pretty good too—at least at first. But then, during the discussion about the transplant, he was really negative. He named all the possible infections and complications, and listed off everything you could die from. He also said it wasn't certain my hair would ever grow back, but I know it will. Most patients survive, but there are tons of obstacles along the way. Anyway, my first impression didn't last long—I can't wait to get out of here now.

In the afternoon I was scheduled for a bone marrow biopsy. I thought that I'd be drugged, and wouldn't actually feel anything. My doctor in Trondheim had even written a letter about that point exactly. Well, that's not how it turned out. I only got one shot of pain medication, and it didn't calm me down at all. I was still trembling and crying on the table when he inserted the huge needle into my pelvic bone to remove the bone marrow fluid. It was so painful.
It always hurts, but right now I'm even more aware of the pain because of everything I've already gone through. I'm so fed up with insensitive doctors.

At the meeting the next day, they told me that there were leukemia cells in my bone marrow. So now I'm confused. Which disease do I actually have? MDS or AML? The doctor said they still don't have control over my disease, and that I need another round of chemo. Damn it. In any case, the plan is for me to have another treatment, and they don't think I'll get as sick this time. I don't think I could take that. So that means maybe I'll get to be home for Christmas if I'm well enough, and then have the transplant right after New Year's. They've actually found a potential bone marrow donor, and several blood donors are available, too. Finally.

The next few months will be scary and really nerve-wracking, but I'm focused on only one thing: just getting through this.

The doctors and nurses say that I should not set my goals too high for the period right after the transplant. But I'm sticking with my plans, no matter what they say. On my eighteenth birthday, Martin and I are going out to dinner, and I plan to start school again in August. And when my hair grows back, I know exactly what I want to do with it.

Fortunately, I was allowed to go home again after the trip to Oslo—but I'm already due to start traveling back to Trondheim on Sunday evening. Every day I get to spend at home is as precious as gold.

Sunday, November 9, 2008

I
t's Sunday. I've been dreading it, but it's here. I have another hospital stay coming up. I'll be there tonight. How long will I stay this
time, and more importantly, how sick will I be? I wonder if I'm ready for another tough treatment.