Saturday, January 24, 2009

Pretty Big Day Coming Up

Isabella finished up her second cycle of chemo on Friday with the last vincristine dose. Isabella has been doing very well over the last few days. She's felt great, been engaging, eating and drinking well (we just found out she loves a mint chocolate chip milkshake). She has been using "Mr. Righty" for practically everything and building up strength in her hand. She is also walking much better than before. She's still neutropenic (low white cells), so we are still very careful around her - for example, Nathaniel has a runny nose, so he will not be able to visit her tomorrow. We are planning on going back to Rusk on Monday to continue her physical therapy.

On Saturday, she is scheduled to get an MRI where we will see the effects of the chemo on the remaining cancer cells. We are hoping to see a great reduction in cancer cells and at worst, see no growth in those cells. We should know the results on Monday. Part of me wants to just get it over with and see the results, and part of me does not want to see the results. Part of me wants to hope for the best, while part of me wants to prepare for the worst and perhaps be pleasantly surprised. This constant emotional tug-of-war, as well as just the not knowing is mentally and emotionally exhausting. This is not an uncommon state that people experience. I just read an article where millions of people don't get routine physicals or go to the doctor just because they are scared to find something and would rather not know. It's not logical, but it is human nature.

So as soon we know, we'll let you know. Thanks for reading.

Thursday, January 22, 2009

Reality Starts to Set In

Disclaimer - if you're not in a mood for a tear-jerker, skip this entry. . .

The reality of Isabella's cancer is starting to sink in.

A short time after her surgery, I had gone to one of the school assemblies to see Annalise's class sing. I saw Mrs. Stelly's kindergarten class and actually scanned the group to see if I could find Isabella even though I knew she could not possibly be there. A couple of weeks ago I was waiting to get Annalise at the bus stop, and while watching about a dozen kids unload, I envisioned Isabella climbing out, too. Then suddenly there were no more kids and the doors shut and the bus drove off and I had to admit that she really was in the hospital.

I have finally stopped trying to find Isabella in her bed when I wake up in the morning so that I can tell myself everything's OK, it was just a really, really bad dream.

I am a member of this on-line support group for parents of kids with brain cancer. People offer some really good advice on everything from sibling care to meds to new protocols that they've found. Normal, non-medical people discuss medication side effects, dosages of radiation, and the latest research studies they've come across in their desperate search to find something else to try. I'm getting used to the "lingo" - people often sign their names with "mother of (name), ___ years old, diagnosed (date) w/ (cancer type), chemo (dates), radiation (dates), recurrence (dates), now on (meds/ protocol)." Or if they have lost their child they say, "mother to Angel (name), forever 11." Or forever 3, or forever 17. Then I suppose most move on to the bereavement support group.

Every once in a while there's a post that someone's child just lost their battle. One that really upset me happened a few days ago. Her boy was in 5th grade and I didn't know them personally, but just found out he was treated at NYU also. She wrote, "As difficult as the last two years have been for Jacob, the end was peaceful. Lying between us as we recounted stories and sang to him, Jacob just went to sleep. Pain free. At home." I still cry every time I read this. I told Roneil I wouldn't have any stories to tell. I wouldn't be able to sing if I knew he was dying. I COULD NOT GET THROUGH THIS. My mind starts to wander, and I think, what did she do with her 6 year old son during all of this? When does she call someone to take the body? And then my mind screams, "Stop thinking about this! This will not happen. This CANNOT happen!"

One of the moms created a "Wall of Courage" that she displayed at a local "Relay for Life" event. She just created a virtual version of it to circulate around:

Watch the video - you should see these beautiful children. The author included that, "Unfortunately, there are a number of children that have since become angels as this wall was created in May of '08. Please feel free to circulate and share this link."

When I do literature or internet searches on Isabella's type of tumor (I can't seem to stop myself from doing this), the information is so dismal. I try to cling to the one sentence that talks about the occasional exception - there are a few reports of children surviving.

Why did this have to happen to my precious Isabella? She never did anything wrong. She is a good and kind and smart and funny and friendly and lovable girl. No one could ever deserve anything like this. No one should ever have to go through this.

I cannot lose her. I would not be able to go on.

I am having a very difficult time.

Wednesday, January 21, 2009

In Case You Missed It

One of Isabella's classmates, Henry, left a note in the Update to MLK update thread. Isabella read it and typed out the reply herself!

Anonymous said...
I miss you Isabella very much have a nice day
Love Henry

January 20, 2009 6:30 PM
Anonymous said...
Thanks for the note Henry. I miss you and everybody in K-2.


January 20, 2009 10:41 PM

Update for Wednesday, Jan 21

The nausea effects from the chemo seem to have all gone, and Isabella's appetite is definitely picking up (she just ate a big bag of sour cream and onion chips and some chocolate milk). She also has recovered from the most recent infection and has not spiked a fever since she's been up here on the pediatric floor.

As expected, her blood counts have continued to drop. She's had a bunch of nosebleeds and she's gotten a couple of platelet transfusions. She's also neutropenic again (low white cells) and she is receiving neupogen shots, which help stimulate the growth of the white cells. She's got one last dose of vincristine this Friday to finish up this second chemo cycle, then she will get her MRI on Saturday.

Unfortunately, her rehab is again disrupted with her being here. We just can't seem to make any traction and get momentum going for the rehab. Since Isabella is neutropenic and she's due to get another chemo shot this Friday, we will probably keep her here in the pediatric unit through the weekend, then hopefully go back down to Rusk early next week. At least we got our old room back, which is a big double room with no roommates, so we have the whole room to ourselves!

Monday, January 19, 2009

Update to MLK update

Well, she spiked a fever again to 104. She also had 2 pretty impressive nosebleeds - enough to need a transfusion, so she just bought herself an admission back to the inpatient floor tonight.

Considering what's been going on today, she's been in pretty good spirits tonight. So I'm going to stop writing and get back to our favorite card game Super Duper Schmooper 8's.

MLK Day Update

Isabella was finally starting to lose the effects of the chemo over the weekend when she suddenly spiked another fever this morning. As you read before, Isabella has been nauseous and not able to eat, but finally on Saturday and Sunday, she was able to eat little bits and pieces and kept it down. Last night, she started feeling more sluggish and finally this morning when they took her temperature, she was up to 102.

They gave her some Tylenol and some antibiotics and her fever is back down and she is feeling a little better. All of her blood counts are still normal, but dropping pretty quickly, so it's not helping that she hasn't been eating. They have been running IV fluids to keep her hydrated.

We were possibly hoping to get her home on a day pass after her morning therapy was done, but obviously, we won't be able to do that.