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.

Desperate in Doernbecher's

Friends, family, strangers, lend me your ears.

Apparently I have some pathetically desperate need for validation. Are you out there? Are you reading this crazy blog-thing?

I'm withholding judgment on the whole blog universe. Most blogs seem to be individual's random thoughts and opinions thrown against the proverbial wall to see what sticks. I probably...scratch that...definitely would not have a blog if not for the ease of updating everyone on Lillian's progress. Mostly due to the fact that I had never even seen a blog prior to writing this one. (I know, welcome to the modern world.)

However, since I do have one, I'm sadly checking it multiple times a day to see if anyone is reading it. So thank you, thank you, thank you for all of your encouraging comments. They nourish our souls and validate that my scattered mutterings are worthwhile.

Signed,
Desperate in Doernbecher's

Good News & Bad News

Jeff thinks I should be required to take a nap prior to writing a post but I'm choosing to live dangerously. And given the lack of sleep over the past 3 nights, this is like poking-a-rattlesnake-dangerous but here goes...

Good news: We're home again after round 3 of chemotherapy. She again tolerated it very well.
Bad news: She didn't tolerate the kidney and hearing tests quite as well but we got through them.

Good news: Let's hear a resounding cheer as we reach the half-way point in her chemo! Hooray!!
Bad news: The next half of chemo is more aggressive though we have been told that any side effects will be managed equally as well as in the first half.

Good news: She gained some weight over the week at home.
Bad news: There is something about the hospital that turns off her appetite. We're hoping that we can pack some lbs on her over the next couple of weeks at home.

Good news: We have power and there was no damage to our house in the windstorm.
Bad news: Three trees fell from our property onto our neighbor's house in the windstorm. There is a bit of damage to their roof and gutter but nothing that a tarp can't fix for now.

We know that her counts will be at their lowest over the holidays. But our greatest hope is that she will avoid any of the other symptoms that would cause us to check back in to Hotel Doernbecher for Christmas. They do a truly wonderful job at celebrating holidays BUT it's somewhat wasted on those unlucky few who are confined to their rooms. So please pray that we can spend the next 2 1/2 weeks at home celebrating this wonderful time of year and fattening up our little girl. Though she hasn't officially given us a list, I'm pretty sure this is what the short list of Lillian's Christmas wishes would look like:

• A couple of extra pounds
• Dreaming of sugar plums in my own bed
• Watching rocket (aka Little Einsteins) for the one millionth time

She's very easy to please, don't you think?

Infancy Part Deux

The good news is that we are reliving the 8-month to 11-month stages. The bad news is that we are reliving the 8-month to 11-month stages. Let me explain.

Chemotherapy is a real hunger-killer. Between the nausea, the mouth sores and the general fatigue, eating becomes a luxury. Lillian has lost a couple of pounds since she started this ordeal and we consulted a nutritionist who gives this advice, "give her whatever she wants, whenever she wants; the higher the calories, the better." Yes, that is coming from a nutritionist! Picture us at the grocery store comparing labels looking for the highest caloric, highest fat foods. It seemed very backwards, I can tell you that. So how does that compare to her 8-month old experience? Many of these foods are new to Lillian. She was a very healthy eater prior to this so chips and hot dogs are very new. She likes some, she doesn't like others, just like her first introduction to solid foods. And also like her first introduction to solid foods, she spits out what she doesn't like. It's very important that we keep the weight on her to avoid a feeding tube.

As I've mentioned prior, sleeping has also become a luxury. The hospital has managed to transition her to a "big girl bed" for us. But Mom or Dad (usually Dad is requested) has to lay down with her until she falls asleep. I know, I know, that is a really bad habit, tell me about it. If only we knew! For naps, we find ourselves driving around the block to get her to fall asleep. Two nights ago Lillian slept straight through from 9pm to 6am. We woke up and looked at the clock amazed, just like we did when she was an infant.

I never thought I'd be so excited to see her crawl...again. But it really is amazing. Up until very recently, she hasn't had enough strength in her right arm to help support her body weight. Last week I bough a big parachute for her to play with since that was one of her favorite Gymboree activities. I set it on the floor and before I could pick her up she had crawled right on top of it. Since then she has been crawling everywhere. She is getting stronger everyday and her balance is improving so I know walking will be just around the corner. In the meanwhile, all of those baby-proofing activities that we have gotten so lazy about have been re-instituted. Cups of water are no longer left on the coffee table. Bathroom doors are closed once again. And Christmas decorations are sensibly placed with a correlation between fragility and height.

Like I said, we get the joy and pain of reliving those early milestones yet again, but this time she's 3 feet tall and talking. That adds a degree of complexity to many adventures.

We're nearly packed for our return to Doernbecher's tomorrow. She has a hearing test, a kidney test and blood work before being admitted for chemotherapy. If all goes as planned, we should be home Saturday or Sunday.

• Pray that the tests go smoothly. The last hearing test was a bit of a nightmare, she was definitely not interested in having anything in her ears.
• Pray that her appetite persists.
• Pray that we can continue to keep her comfortable throughout the chemotherapy.
• Praise for her improved strength.
• Praise for good counts so that she could have visits from Grandpa, Auntie M, Nana and Papa. It's a nice change from just Mom & Dad.

Reality Show Idea

I think we have the makings of a hit reality show (or a sick psychological experiment which is really what reality shows are, aren't they?). Ok, here's the synopsis:

• Setting: Lock a 2 year old and his/her parents in the child's bedroom for a week.
• Rules: They can bring as many toys and other comforts as they can carry in a wagon. Food can be selected from a limited menu and will be provided 3 times a day.
• Goal: To see who cracks first, the child or the parents.

No need to try this at home, we can tell you the outcome from our limited field research. It's definitely the parents. Surprised? So were we. And that's the kind of dramatic surprise that will draw in viewers.

We thought today might be the day her counts would be high enough to go home but alas no such luck. We're hoping for tomorrow. I think if they haven't rebounded, we may be forced to flee under the cover of darkness.

I've realized that all of my prayer requests have been asking for help. Tonight, I'll include some praises:

• Praise God for every giggle. Even the one at 6:30 as I was awakened by a pacifier on my nose and a little voice saying "tickle, tickle, tickle"
• Praise God for every happy memory. Since we can't go for walks, we talk about the walks we have taken in the past. Last night we talked about our trip to the beach last summer and Lillian remembered all the people we were with (Traci, Todd, Nana, Papa, Jack, Ry-Ry) and building sand castles.
• Ask God that her counts would rebound so that she feels better and so that we can get out of this little room.

Return to the Pokey

"Oh Ched, we have to stop meeting like this. People will start to talk."
(For those of you who are utterly confused, Ched is introduced in my last posting.) After a successful round of chemotherapy, we are back in the pokey (as Jeff has appropriately termed it). It guess it was about time for us to return since a week at home seems to be the maximum allowed.

Yesterday Lillian spiked a fever of 100.5 which just so happens to be the exact number that requires a phone call to the oncology clinic. Her counts (red blood cells, platelets, white blood cells, neutrophils) which were remarkably good on Wednesday have dropped predictably to nearly non-existent. *Not to panic, this is the normal response cycle to chemotherapy.* So we're confined to this cozy hospital room for the next few days until her counts recover. This will be aided by transfusions of blood and platelets in addition to ongoing shots of GCSF to boost her white blood cell production. The upside is that we (and by we I mean Jeff) don't have to give her the shots at home anymore!

Speaking of shots, there should be some sort of degree or title earned for the parents of kids with cancer. Between the subcutaneous injections, the daily heparin flushes and the weekly dressing changes for her central venous line, we have certainly performed more medical procedures than the average layperson. I'm considering adopting the title "Certified Oncology Practitioner" (aka COP). It has a nice ring to it, don't you think? But I digress...

Though we are administering this regular routine of torture, I must stop to consider that Lillian is in fact the one enduring it. And enduring it well, particularly for a 2 year old. She is getting so used to pokes that she cries for about 30 seconds and then is ready to play again. The biggest obstacle for her is sleep. She seems to sleep only a few hours max at a time day or night. It's tough to tell whether she is used to being awakened from the extended hospital stays or whether she's hungry since her appetite is minimal or whether she is in pain. In fact, that is our biggest request of all you faithful prayer warriors. Please bring the energy and contentment that only a good nights sleep can deliver. Sweet dreams everyone.