Conflicting emotions

We asked Elena where she learned to stand like that and she said, "From the doctors!".

(Her nurses and doctors in clinic do stand like that a lot, now that I think about it.)

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Today was a clinic day. Believe it or not, we actually kind of enjoy our weekly clinic visits. (Even though we are dead tired when we get home from them. Why that is, I'm not sure.) Elena is much better with her port accesses, usually feeling good, and is more comfortable with the routine, so it's not a bad place to be. She loves the nurses and doctors, looks forward to playing doctor with "Miss Rachelle" (the child-life specialist), and enjoys all the treats. The clinic is one of the few places all four of us can go out as a family - Eric and I joke that it's kind of like a date, even with the kids. And the clinic is a place where we are surrounded by lots of people like us. It's a safe place. There are lots of bald kids all around and people there understand why your kid is crying and irrational and puffy during steroid courses or why they glow in the dark when they're anemic.

One of these weeks, I'm going to take the camera and document a clinic visit, so you can catch a glimpse of this big part of our life and meet all Elena's nurse friends.

Today's visit was a little more exciting than normal because Elena's glucose level crashed. She was really off all morning (pale, tired, not talking, cranky, not moving much, etc.), which we attributed to the fact that she was fasting for a lumbar puncture (LP). Although, she's done pretty well with fasting since she went off steroids. Her doctors and nurses also commented about how she was not acting like herself. We knew she wasn't anemic, but weren't sure what else could be up. Robert, the really good at lumbar puncturing-physician's assistant-who is Elena's buddy, told us that if she didn't perk up after she got some food, that we would need to do some investigating. Right before the LP, they took some blood for a standard metabolic panel (watches lots of things, but especially liver functioning because chemo can damage the liver as your body tries to flush it out). While Elena was lying in the procedure room after the LP, recovering from the anesthesia, Robert came rushing in the door and said,

"Is she awake enough that she can drink something?"

I was a little bewildered by his urgency, but said that I thought she probably was. He said he was going to get some apple juice for her because her glucose level was at 43 (normal fasting glucose level in children in between 60-80).

"If your glucose level was that low, you wouldn't even be able to get out of bed in the morning," he told us as he rushed away.

Two and a half apple juices later, Elena had perked up quite a bit. The rest of the day, she did well- extra tired from chemo (I had to go wake her up from her nap 3:00 nap at 7:30 this evening) - but pretty well otherwise. The glucose crash is a new thing - we'll have to take a few precautions in the future, but hopefully it'll be alright. Some kids can develop diabetes and other blood sugar problems as a side effect from chemo, but... we'll see. Hopefully it was a one time thing.

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Today was the second to last round of chemo for the current course (Interim Maintenance). In ten days (pending good counts), we'll have the last dose of chemo for I.M. and then a two-week break and then on to Delayed Intensification - the last course before Maintenance. (!)

It's so crazy.

Today, one of the nurses was looking at Elena and then asked me if she had a lot of hair before it fell out. This got me thinking about her hair and when I got home, I looked up the post I wrote about when she lost her hair. In that post, I mentioned how her hair would probably start to grow back "in 6-8 months when we enter the Maintenance phase". Compare that "6-8 months" with today when the doctor was talking to us about our clinic schedule coming up and said, "Come back in ten days, then a two week break, then Delayed Intensification, and then you're in Maintenance! You're almost there!"

I can't believe that. When Elena was diagnosed, Maintenance felt like a mirage out in the desert that we would never really reach. And now it's just around the corner.

I can't wait for it to come and I'm nervous all at the same time. Because getting to Maintenance means that we have to make one last push through Delayed Intensification. And I'm really worried about that. What the doctor also said when he was telling us our schedule was, "...then Delayed Intensification (which is going to be really hard - especially day 29), and then you're in Maintenance...".

When we were in the hospital when Elena was diagnosed, I remember a doctor coming into our room one morning and talking us through the different courses of chemo. I can remember that she told us about Induction (the first phase) and that it was really awful and I can also remember her telling us that right before Maintenance, there was a phase called Delayed Intensification and it was also really, really hard. At the time though, Induction was upon us and D.I. felt like it was a million years away, so I just focused on Induction and pushed D.I. into some far away corner of my mind. And now it's just about here. I'm really dreading it.

Elena will be on a slew of medicines - each with really nasty side effects. Some of the biggies (common and fairly common) are: nausea, vomiting, mouth sores, loss of appetite, possible infertility, damage to the heart muscle which can range anywhere from no effect on function to heart failure, flu-like symptoms, hair loss, extreme tiredness, allergic reaction, decreased ability of the body to fight infection, and the list goes on and on. And then there are the steroids she will be on. The dreaded, hated, loathed steroids. (Except that they are actually one of the best cancer fighters she is on, so I guess I shouldn't hate them too much...) She'll be on them/affected by them for about a month (thankfully only one of the two months of D.I. - there's a blessing!). Those will produce extreme increase in appetite, water retention and puffiness, bone damage and susceptibility to fractures, weight gain, mouth sores, decreased ability to fight infections, high blood pressure, blood sugar issues, personality changes with mood swings (read: cranky, irritable, irrational, totally crazy, depressed, despondent, lethargic, etc.), and so on. Yuck, yuck, yuck. Can you see why I'm scared out of mind? We've been there before and like I recently told a new-found ALL friend whose little girl just finished Induction- it was hell. It's so awful seeing your child suffer and morph into a practically unrecognizable shell of her former self. It was also very trying on our parental resources - I was starting to fall apart the last week and a half or so of Induction. I'm really worried about finding the strength to do it all again. With Induction, I was going into it blind - I had no idea what to really expect. But now..... I kind of wish I could just sleep through the next few months and someone could wake me up when Maintenance starts. (Merry Christmas to us! Hopefully...)

But, what choice do we have? Just forward. Onward and upward is the only option there is. So we'll do it for Elena. She's a fighter. How is one little three year old stronger than a couple of adults?

And we'll do it because anything is worth it to put all of this behind us. One last push and then we are into Maintenance, which after the first few months of adjusting the doses, is supposed to be comparative bliss. And really, it could be worse -if she wasn't a Rapid Early Responder, we would have to do two courses of D.I. (along with other things), instead of just one. Just promise to keep praying for us.