Just Two More

The past 5 days have been so all over the board that it's hard to know where to begin. I guess I'll start with a recap of the bath situation:

Bath #1 - Tried a shower at the nurse's suggestion. Big mistake.
Bath #2 - Oversized infant tub + video + rubber ducky = success
Bath #3 - Same formula, different result. Screamed through the whole thing.
Bath #4 - Alas, strike 3
Bath #5 - If there were 4 strikes, this would be it.

Ironically, she played for 1/2 hour in the tub tonight at home. She splashed water everywhere, giggled hysterically and cried when I finally said the bath was over. Jeff and I just shook our heads and enjoyed her smiles.

Now to back up to the chemo. We arrived at the hospital at 9am on Friday only to be told that there were currently no available beds but they were expecting some to open up that morning. Jeff got the BRILLIANT idea to ask if we could go home while we waited. They agreed to call us when a bed was ready. At 4pm (yes, 7 hours later, good thing we didn't wait there), we got the call, jumped in the car and headed for the hospital. We were literally turning onto the hill to OHSU when we got another call saying they had to give the bed to an emergency patient. So we were re-directed to the clinic where she waited until 7:30pm to be admitted. Her chemo didn't start until 9:30pm.

The two nights of chemo went well. She played heartily during the day and had minimal side effects. She was to have a stem cell transplant 48 hours after her last chemo treatment and we were obliged to wait that out at the hospital. Both days the nurses unknowingly teased us with the idea of a 4 hour pass to go home only to have the doctors veto the idea. Finally the wait ended and the transplant was scheduled for first thing this morning.

We were told that the transplant would be similar to a blood transfusion. Just a 4-hour drip through her line. But when the nurse arrived in the playroom this morning with 3 different pre-meds, I knew this was going to be different. Though medically the transfusion went normally, it was far from routine for us. In order to take her vitals every 5 minutes, they attach a blood pressure cuff to her leg and oxygen monitor to her toe (which is no more annoying than a band aid). The oxygen monitor posed the first challenge as Lillian screamed throughout the procedure that she wanted it off NOW. Undoubtedly exacerbated by the fit she was throwing, Lillian also vomited throughout the last half of the transplant. Apparently they treat the stem cells with a preservative that some kids don't like. And we have found that Lillian generally falls into the category of "some kids" or "infrequently" or "every so often". Fortunately, the doctors also exaggerated the length of the procedure and about 45 minutes later, the transplant was complete and Lillian drifted into a medicated slumber. All I could do was look at Jeff and say "just two more."

After all that, we're home happily looking forward to sleeping in our own beds. Though that was the longest I had been apart from Ched, I will gladly wait another 17 days to see it again. Good night!

Super Girl

Our Super Girl has done it again! Her counts in all areas are remarkable. So we can proceed with chemotherapy as planned.

But (yes, there is a but), we need to wait until Friday to begin. The next 3 rounds of chemo are more aggressive and will require transplants of her previously collected stem cells to aid her recovery. Since they only do stem cell transplants on weekdays, her chemo needs to begin on a Monday, Tuesday or Friday. That will allow for 2 days of chemo and one day of rest prior to the transplant.

The other fun fact about one of the new chemo drugs is that it secretes through her skin. That means that she will need a bath every 12 hours. Prior to her diagnosis, a bath twice a day wouldn't have been a big deal. But now a bath will produce a guaranteed tantrum. Since her central line and it's surrounding dressing cannot get wet, we have to apply a plastic patch over a majority of her chest that gets taped down. That's enough to make anyone hate baths!

Praise God for giving Lillian such super healing powers and pray that she endures this new life-saving cocktail with ease.

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.