Happy New Year

As many people enter 2007 vowing to eat better, I thought I would share our top 10 nutritional learnings from the last few months:

1. If one person in the house is on a high-fat diet, everyone in the house is on a high fat diet.
2. The hospital meal rejected by the pediatric patient should not be used as a supplemental snack for an adult.
3. Homemade brownies will add pounds to everyone who eats them, except to the person trying to gain weight.
4. Just because a menu is designed by the Food and Nutrition Department of a hospital doesn't mean it's healthy.
5. Weight is balanced across a family. As one family member loses a pound, the others must gain it. It is also acceptable for the other family members to gain some multiple of said pound.
6. Something akin to the Bermuda Triangle is formed between a person, a meal/snack and the tv. Food just disappears.
7. Half and Half is exactly what it says...half a pound in half a glass.
8. You cannot push a stroller up and down a hospital hallway long enough to burn the equivalent calories found in a Starbucks peppermint hot chocolate and cinnamon roll.
9. If a carrot makes you feel better in a stressful situation then a carrot cake will make you feel a lot better.
10. If you only wear sweat pants, eventually you will only fit into sweat pants.

As I prepare to enter the aforementioned Bermuda Triangle, I want to wish you all a happy and healthy 2007. We are confident that with God's help, great things are ahead for us in this new year.

Drama-filled Days

Everybody sing it with me (to the tune of Hi Ho the Derry-O):

The MRI was clear
The MRI was clear
The chemo is working
The MRI was clear

It was a long, grueling day but worth it to hear that there are no signs of the tumor on the scan. We arrived at 7:30am but were kept waiting and trying to entertain a cranky, hungry 2 year old until 8:30am. She was fussing in Jeff's arms when they finally administered the sedation and with a single breath, she fell limp. Even though we've experienced this bizarre change several times, it never ceases to disarm me. After a 3 hour MRI, she awoke a very unhappy child. We had tried to dictate the sedation medication from our prior experiences but she had what they call a "rough wake-up" nonetheless.

We carried our crying child to the clinic and tried to calm her in the waiting room. The receptionist who was either sympathetic or exhausted from hearing Lillian scream finally arranged for a room. After turning out the lights and hugging her quietly, Lillian finally relaxed. As expected, she needed both blood and platelet transfusions which take about 6 hours combined. Needless to say we had the clinic all to ourselves for several hours late into the evening. We left the hospital at 8pm after a twelve hour day exhausted and not all together ready to return the next morning for her kidney test.

This was by far the most smooth of her 3 kidney tests to date. The poke was quick and relatively painless thanks to the numbing cream we'd applied in advance. Lillian played happily over the 3 1/2 hour wait and all three blood draws went well. Even the weekly dressing change which is normally drama-filled was over in a flash. As though she sensed that things were progressing too easily, Lillian decided to throw the king of all tantrums once we got home this afternoon. Who can blame her really? She has been poked and squeezed and annoyed for a day and a half straight. She is now sleeping peacefully which is sacred time for all of us. In fact, it's time for me to rest and veg out for a rare moment.

We aren't due back to the hospital until Tuesday. Because her platelets dropped so low, they may not recover in time for our scheduled inpatient chemotherapy on Wednesday. We will have counts drawn on Tuesday to see if she can continue on schedule or delay it a week. Although the doctor assures us that it is normal to have delays, we are still hopeful that we can continue as planned. On one hand, it's hard to believe that we're already half way through her chemo. On the other hand, it's hard to believe that we're only halfway through her chemo. Please pray that her little body can produce the required platelets, white cells and red cells by Tuesday. And, I almost forgot, praise that she has gained a few ounces in the past week! (Haven't we all???)

Check It Out

Here are the highlights from a very peaceful yet worrisome Christmas day:

• We were up at the usual 6am but by 7am I couldn't stand it anymore and made her open presents. What is wrong with this child that opening presents wasn't the first thing on her mind in the morning???
• Every gift opened would elicit a "wow" response...even just for the box
• I don't know where she picked it up but with every gift she would also say "check it out." I got it on video but par for the course, we ran out of tape after about 5 minutes.
• Like a typical 2 year old, she wanted to play with each toy as she opened it.
• She continues to be very fastidious and as she tore off even the tiniest piece of wrapping paper, she handed it to one of us to put in a garbage bag. This must be done prior to any additional unwrapping.
• It took Jeff and I another hour to put together all of her new toys. I don't mind since I am just as excited as Lillian to have new toys to play with.
• Exhausted by 10am, Lillian took her first of two naps. The second was at 5pm despite our concerns about bedtime disruption. Sure enough, we couldn't get her down for bed until 10:30pm.

The worrisome part is that her platelets and red blood cells are clearly low. (Platelets are what help blood to clot.) The slightest bump causes an immediate bruise and a cut on her lip has turned into a major blood blister. The nurse assures us that this is normal with low counts and feels that the transfusions can wait until our clinic appointment tomorrow. I appreciate the reassurance but each new bruise or bump still makes me nervous.

Lillian has a MRI tomorrow morning prior to her clinic appointment. This is to verify that the tumor is not visible since they resected it completely. This requires sedation which should be simple since the can administer it through her central line. Please pray for positive results! We then head to clinic where she'll have her usual outpatient chemotherapy in addition to the anticipated transfusions. Thursday she has yet another kidney test. This one requires a poke followed after 2 hours by three blood draws 1/2 hour apart. The toughest part of this test is typically the waiting (and the poke of course). Please pray that for endurance and creativity as we entertain her for most of a day in the waiting room.

I hope you all had a wonderful Christmas. Thank you for your continued prayers, comments and support.

Christmas Eve

T’was the night before Christmas and we’re still in our house,
Not a creature is stirring, except with our luck, a rat or a mouse;
The stockings are hung by the chimney with care,
In hopes that someone remembered to buy gifts for in there;
(No need to worry, Mommy has come through
During nap time she picked up a stocking stuffer or two.)

Lillian is nestled all snug in her own bed
While visions of car rides and parachute games fill her head;
She’s feeling pretty poor with counts oh so low,
She’s pale and tired and moving pretty slow;
But that is expected and soon once again
She’ll feel up to playing with Barbie and Ken.

Gifts from loved ones are piled beneath the tree,
But this Christmas, the phone will be our only contact with family;
With an immune system so weak, germs are a legitimate fear
So we’ll have to forgo visits from all of you so dear;
Next year will be different, she’ll be feeling all right
We’ll shout from the rafters “Merry Christmas and good night!”

We wish you all a Merry Christmas and Happy New Year,
Remember to cherish this special time with the people you hold dear.

The Future

I came back into the living room yesterday morning to see Lillian talking on the phone, watching tv and playing a video game - all at the same time. I think I just got a glimpse into her teenage years and they're filled with tech toys.

Speaking of technology, if I could figure out how to make two photos in one post look attractive, I would feel a bit more secure in my blogging abilities. Instead you get to read two separate back-to-back postings just so I could show you both pictures. Perhaps I should ask the 13-year old who lives next door, she would probably know how. She could probably also get my tivo to work but that's another story.

So far, so good

We're still at home and Lillian is doing well. Her counts as of Wednesday were good but we expect that by today they are low. They should recover around New Years if the pattern continues.

She also had her first physical and occupational therapy appointments this week since beginning chemotherapy. We had to wake her up from a nap to drive to the appointment so we were uncertain of how successful the therapy would be. But she was a trooper and did beautifully. The occupational therapist assessed her left arm to be functioning normally and her right arm to be functioning at around a 6-month old level. We believe that is due to the tumor resection and should recover with time. A big benefit in her recovery is her motivation to use her right hand. She complies when asked to use "righty" and often will use it first without being asked. The physical therapist has been working with Lillian on and off as an inpatient client since her diagnosis. We haven't seen her in a while and she was very impressed by Lillian's progress. That's our super-girl!

Attached is a photo of one of her favorite activities, a blanket ride. (Sometimes the best toys are free!) She happily crawls on the blanket, exclaims "all aboard" and the ride begins. An added bonus is the blanket sweeps the floors. Perhaps I should try spraying it with floor cleaner and it could double as a mop. Hmmmmm....

Oops, I hear the dulcet tones of a nap coming to an end. Gotta gear up for more blanket rides and parachute games. I'm just glad to see her appetite for playing hasn't decreased!

Toddler-Ease

It seems that the chemo has caught up to Lillian. She is enjoying her toys and continues to grow stronger. But there are dark circles forming under her beautiful brown eyes. Her clothes continue to hang more loosely about her frame. And the periods of happy play are more frequently interrupted by whining and crying. If there was any doubt that the chemo was working, they have been erased.

The challenge we face as a 24-hour caregivers is patience. Watching my child battle a life threatening illness has given me a new perspective on the value of each moment we have together. However, it does not make me a saint. Fortunately when I run out of the precious commodity known as patience, Jeff seems to have a positive balance and vice versa. God truly does provide in times of need.

One such moment occurred during a car ride a few days ago. Lillian was particularly whiny so we volunteered one of her favorite activities, a car ride. We had just driven a few blocks after we had located the requested buddies (aka stuffed animals), zipped on her sweater, strapped on her shoes and snuggled her into her car seat with a blanket when we heard something that sounded like "de-u-ri-i-b." This utterance of five distinct syllables was unrecognizable. As she desperately repeated it over and over, Jeff and I tried sounding it out. (This is one of our oft used techniques for deciphering toddler-ease.) I had about reached my boiling point as her pitch became more shrill with each passing moment. Finally I turned around and said a bit more sharply than intended "what Lillian???". She repeated "de-u-ri-i-b" but this time added a sign. The sign for car. I silently praised God for sign language as I said with relief "drive, you want to drive?" "Yes, Mommy." How I ask you does a one syllable word, drive, morph into five syllables? Is it any wonder we can't understand these little people? Don't they know what a syllable is? Crisis averted. Often she doesn't really want what she's whining for as much as she wants to be understood.

Today it was something that sounded like "pea pets". Finally I guessed that she wanted to watch the show Wonder Pets. Don't ask me how I guessed that "pea" was actually "wonder", it must have been a God thing. Jeff spent the next few minutes helping her practice saying "wonder pets" until it was understandable. We're not going through that again, that's for sure.

I'm sure you've all been through similar frustrating circumstances. Particularly now that her fuse is shorter, ours needs to be longer. It's a piercing kind of guilt to snap at a child who very likely is in pain. Please pray that God would grant us divine patience. And pray that God would relieve any side-effects that are causing her discomfort.