Merry Christmas?

So this isn't exactly how I envisioned spending Alyssa's first Christmas. She should be covered in wrapping paper, not tubes. It doesn't really seem like there's much to be "merry" about -- that may just be the self-pity talking, but it's how we feel right now.

In any event, the family has come to visit and spend time with us in the hospital, as we couldn't possibly bear to leave our little girl's side. Honestly, they're a welcome distraction -- well, as distracted as you can be from all the beeps, buzzes and other sounds we're so keenly attuned to now.

We've planned a "second" Christmas, to be celebrated at a later date once we're out of the hospital. Alyssa's presents are all wrapped and ready for her little hands to work over. The hospital has left a (very) large bag labeled "To: Alyssa, From: Santa" containing what appears to be a bunch of toys. This is quite possibly the most simultaneously heart-warming and heart-breaking event of the past week -- I don't know whether to cry tears of happiness or sadness.

I'd trade it all to just hold her in my arms and have her coo at me lovingly.

Please, Santa?

That's My Girl

So, as one might imagine, being awoken in the dead of night in PICU by a screeching alarm can be rather rattling.. which is what happend to us this morning. Once awoken, we were shocked to see the respiratory therapist standing over our now flailing child yelling for help out into the nurse's area. At the time, we weren't aware of what was going on or how severe it may be, so we stood clear of the medical staff off to a corner before we were escorted out to a "waiting area".

Was she breathing?
Did her lungs collapse?
My God. Is she still alive?

All of these questions and more, running through our minds. We didn't say much to each other, my wife and I. We just sat in the waiting area staring at the walls with empty eyes and minds full of possibilities.. waiting. Just, waiting, for someone to come in and deliver us news -- good, bad. Something.

After about half an hour, the doctor on-call came in and explained what had happened. As it turns out, Alyssa decided that she had had enough of the ventilator and decided to self-extubate (she pulled out her breathing tube) -- all while sedated. All in all, the incident wasn't very severe -- in fact, she surprised everyone by actually breathing on her own for a few breaths before they re-intubated her (all without issue, thankfully!)

So, as a father, this just makes me proud. My daughter, with enough sedation in her veins to bring down a rhino, was able to reach up and yank out her breathing tube -- and breathe on her own

This just reaffirms in my mind that she's strong, a fighter, and she's going to be just fine...

Well, It's Better Than 2%.. Right?

So the results of the bone marrow aspiration came back.. 1% of total nucleated cells identified as malignant. Not exactly the results we were hoping for, but it (obviously) could be much worse.

According to our oncologist, this doesn't change our current course of treatment. The current COG protocol we're following should address the cancer in the bone marrow as well. We'll perform a follow-up aspiration once we've completed a couple cycles of chemo, to see where we stand.

For what it's worth, no one (except my wife and I) seemed surprised as to the results. It appears to almost have been expected. So, there's that.

Aside from all of that, Alyssa is still sedated and we're still in PICU. A preliminary X-ray shows that due to (post-surgical?) swelling, her liver is encroaching upon her diaphragm, which in turn, is slightly compressing her left lung. It's not collapsed, but if she was to be taken off the ventilator now there would be significant discomfort for her. So, until the swelling goes down, she'll remain on the ventilator.

Sometimes the Treatment is Worse Than the Disease

Let's say I saw a fly land on your face, and I casually brushed it off with my finger. You'd think nothing of it, right?

Now imagine, that instead of using my finger, I pulled out a baseball bat and beat every inch of your body.

That's chemotherapy.

.. and Alyssa is going through it right now. Her first cycle is 3 days long, and consists of:

If there's any "silver lining" to any of this, it's that she's completely sedated through all of this and won't feel a thing (in the event of any adverse reactions). However, this does little to comfort my wife and I who are pretty shaken up right now -- things are moving so quick. We just signed consent forms allowing something that could potentially kill our child -- so, I think we're entitled a little leeway. 

The nurses administering the drugs have been wonderful; happily answering any and all of our questions and helping alleviate concerns. Although, I must admit, the more I learn about the drugs being used the worse I actually feel. The possible side-effects to the multiple drugs are quite extensive, and range from mild to fatal -- and you may not experience them immediately. Many of them are "long-term", meaning that one day, 20 years from now, she could suddenly develop secondary Leukemia. Great, huh?

That being said, what can you do? We've slowly been learning to readjust our outlook to the present, rather than the future. We can't control the future anymore than we can change the past -- we can only focus on the today. The now. We have to be there for our little princess when she needs us most.  

A Sigh of Relief

After what seemed like days of waiting.. she's out of surgery. 

We met with the surgeon, who gleefully (and quite boastfully) informed us that he was able to remove the primary tumor along with the left adrenal gland (hey, she has 2 after all..). With her liver being the size that it is, the procedure was a bit tricky, but he didn't want to leave empty handed and pushed through to get the tumor. For good measure, he also took a liver biopsy (overachiever). 

The Broviac was installed without issue, and the bone marrow aspiration was completed as well.

She needed a small transfusion, about 2oz of blood. So far, she's taken it like a champ -- no adverse reactions. All in all, the surgery was a resounding success. 

She's still heavily sedated, and is now on a ventilator. They anticipate the additional swelling from the surgery will cause compression on her lungs, causing discomfort. They've assured us that she's not in respiratory distress; that the ventilator is strictly for her comfort and will be removed in due time. 

I'll admit, I was (and still sort of am) a nervous wreck during this 2 hour period. My mind running rampant with the many possible outcomes. My wife handled it a bit better than me, keeping busy with some work on her laptop to try and stay focused on something, hell anything, other than the passing time.

Looks like we're going to be spending some time in PICU. I can't wait to see my little trooper. I'm so proud of her.

Waiting is the Hardest Part

It's time.

We've given our sweet princess over to the surgical staff who will begin immediately. The surgery is scheduled to take about 2 hours, all of which Alyssa will be under general anesthesia.

The goals, in order:

  1. Biopsy the primary tumor if possible, if not, biopsy the liver and hope we get enough cells to send for pathology.
  2. Remove the primary tumor from the left adrenal gland
  3. Install Broviac
  4. ???
  5. Profit!

Ok, so I made up 4 and 5. But that's pretty much the gist of it. We have the utmost faith in the surgical team here at APH, so it's in their hands now.

They keep reminding us that this is an open-biopsy; that the incision will be basically from hip-to-hip. Oddly, this doesn't really bother me -- provided they can get out what they need. This will just provide the context for the future talk we'll have to have with Alyssa -- one day she'll be curious as to why she has this faint scar on her abdomen.. I look forward to that day.

You and What Army?

I have no Life but this,
To lead it here;
Nor any Death, but lest
Dispelled from there;

Nor tie to Earths to come,
Nor Action new,
Except through this extent,
The Realm of you.
-- Dickinson, Emily. "I have no Life but this"

Surgery in a few hours. I wonder how they plan to pry her from my arms?


I'm beginning to realize that the medical industry really likes their acronyms.

After talking with the oncologist, it appears the next step is to biopsy the tumor. Due to her size, and the current size of her liver, it will need to be an open biopsy. While inside, they'll also install a Broviac catheter to prepare for chemotherapy.

The tissue removed during the biopsy will then be sent off to pathology. The things we are most concerned with are:

Surgery is scheduled for the 19th.

No Bones About It

Maybe it was all just a bad dream..

A new day. Fairly sure we're still in shock, but we're beginning to realize that no amount of wishing it not to be true is going to help -- it's time to focus and be there for our little girl.

Today was the bone scan, where they check to see if there has been any metastasis to the bone. Despite the circumstances, the scan is actually very cool. They let us both stay in the room and watch, while Aly was under very light sedation (given orally). 

Thankfully, the results came back favorable: no evidence of cancer in the bones.

A Dark Place

It appears that the initial shock is beginning to wear off, and the gravity of the situation is setting in. I find myself trying to cope in various ways, some healthy and others not-so-healthy. I want to be positive, but after reading up on this disease it seems that it's never really "over" -- just an ongoing battle.

It's just not fair.

I need to suck it up, and push it down so I can be clear headed and strong for my little girl. She needs us more than ever right now, and crying in the shower isn't helping anyone..

Wait. What?

No, there must be some mistake. That only happens to other people.. not us. Right?

Today our daughter, Alyssa, was diagnosed with Neuroblastoma. We had brought her to the pediatrician due to her belly being a bit larger than normal, which we attributed to gas. After checking her, we were referred to the ER for further imaging.

The preliminary ultrasound revealed that the liver was significantly larger than that of a normal liver (about 3x), as well as a "mass" on the left adrenal gland. The subsequent CT scan confirmed the findings.