Sleepless in San Diego

The MRI yesterday went very well. We don't have results yet, but I will post them when we do. Mad's counts are all up and we are getting ready to head north for Thanksgiving.

The night before the MRI Madeleine slept so poorly that she was awake at least every hour until 4:00am. At that point she decided that she was done feigning sleep and got up for the day. Yes, at FOUR AM. I grabbed a blanket and a book and took her into the living room so that she could play and let Ryan get some sleep. At 5:45, she was acting tired and I managed to get her back to sleep and then crawled into bed myself, thinking that I could at least sleep for a little over an hour before having to get up for our 8am doctor's appointment. Unbelievably she woke up 15 minutes later.

We made it through a long wait at the hospital because her MRI was pushed back until 1:30pm. She was tired and hungry, but did remarkably well. When they were injecting the Propofol to sedate her the anesthesiologist remarked that it was taking a larger than normal dose to make her go to sleep. You think?! Knowing my kid and her horrible sleep habits, I am not surprised.

Last night she finally slept, only waking about three times. That may seem like a lot, but for us it was much better than usual. We also gave her something the doctor called "magic mouthwash" to help with her teething. She can't take Advil or aspirin due to the effect on the white blood cells and chemotherapy, so the doctor prescribed this magical elixir of lidocaine, maalox and benadryl. I'm really hoping that last night's good sleep was related to the prescription (because we can and will give that again!), and not the sheer exhaustion (because she obviously does not need sleep as much as the average baby).

Have a Happy Thanksgiving!

Cancer Facts

I know I haven't updated much lately, but there isn't too much to say. Mad's counts on Wednesday were still low, so we are continuing the GSF shots until tomorrow. Tuesday we have labs again and an MRI. I doubt that we will get any MRI results until after Thanksgiving.

In regular baby news, Madeleine has seemed to have found her voice and is constantly shrieking as loud as she can about one thing or another. She is also still teething which is no fun for any of us.

These facts were taken from the Magic Water website.

Neuroblastoma Facts

• Neuroblastoma is a common and often difficult to treat cancer, the most common cancer in infancy. (UCSF)
• In the United States, about 600 children are diagnosed with neuroblastoma each year. (UCSF)
• It is the most common tumor found in children younger than 1 year of age.
• Childhood cancer is the number one disease killer in children.
• Neuroblastoma is the most common extra cranial solid tumor cancer in children.
• Every 16 hours a child with neuroblastoma dies.
• There is no known cure for relapsed neuroblastoma.
• Nearly 70% of those children first diagnosed with neuroblastoma have disease that has already metastasized or spread to other parts of the body. When disease has spread at diagnosis and a child is over the age of 2, there is less than a 30% chance of survival.

Childhood Cancer Facts

• There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
• The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
• The American Cancer spends less than 70 cents of each 100 dollars raised on childhood cancer.
• Cancer kills more children than any other disease, more than Asthma, Cystic Fibrosis, Diabetes and Pediatric AIDS combined.
• Sadly, over 2,300 children with cancer die each year.
• Every school day 46 children are diagnosed.
• 1 in 330 children will have the disease by age 20.
• Cancers in very young children are highly aggressive and behave unlike malignant diseases at other times in life.
• 80% of children have metastasized cancer at the time of their diagnosis. At diagnosis, only 20% of adults with cancer show evidence that the disease has spread or metastasized.
• Detecting childhood cancers at an early stage, when the disease would react more favorably to treatment, is extremely difficult.
• Cancer symptoms in children – fever, swollen glands, anemia, bruises and infection – are often suspected to be, and at the early stages are treated as, other childhood illnesses.
• Even with insurance coverage, a family will have out-of pocket expenses of about $40,000 per year, not including travel.
• Treatment can continue for several years, depending on the type of cancer and the type of therapy given.

What Causes Childhood Cancer?

• Every family is potentially at risk.
• In almost all cases, childhood cancers arise from non-inherited mutations (or changes) in the genes of growing cells.
• As these errors occur randomly and unpredictably, there is currently no effective way to predict or prevent them.
• Most adult cancers result from lifestyle factors such as smoking, diet, occupational hazards and exposure to other cancer causing agents.

Cancer Research Funding

• Nationally, childhood cancer is 20x more prevalent than pediatric AIDS.
• Pediatric AIDS receives 4x the funding that childhood cancer receives.
• In one month there are 2x as many deaths from childhood cancer as pediatric AIDS for the entire year.

Week off

I'm waiting to hear about lab results from clinic today, but other than that there is no new news. Madeleine is feeling fine, except for the teething that has us all awake every hour. Tylenol didn't seem to help, I'm wondering if Benadryl would help her (me) sleep?

She pulled her train over to this table so that she could stand on the train and get the toy from the table.

Blah

We had a very blah day at clinic today. Nothing interesting happened, except that we played in the playroom for a good hour and a half before chemo (she had hydration fluids running). Mad was sick again this morning at clinic so they started her meds earlier than normal. That means that I have to end them earlier than normal tonight. She can only have up to three doses a day, and I'm hoping it's enough to keep her feeling good through the night. I'm feeling a little stressed out about trying to get papers and group projects done (or even started) for school, and keeping up with my work responsibilities. It's hard when I'm at clinic for so much of the day. It's not like I can work on school stuff there either, because Mad will only nap for about an hour if I'm lucky. When she finally does nap I'm so worn out from trying to entertain her for so many hours that I end up just doing the newspaper crossword puzzle, or reading something for pleasure (after a long-awaited bathroom break!). I'm sure I'll figure it all out regarding school and work. My primary concern during chemo weeks is making sure she is feeling good and happy.

Two days to go! Her MRI is scheduled for November 25th. We are fully expecting to have more rounds of chemo after that, but it will be good to see the effect that the chemo is having on the tumor.

Go Chargers

We've completed day two of this week's round of chemo. Madeleine is doing pretty well. We've been more diligent about the nausea meds and that seems to be helping. She did throw up tonight, but she seems to be feeling much better now.

Clinic is a lot of waiting around. Luckily the hospital is very good about having volunteers that come and do different things to entertain the patients. A harp player comes 2-3 times a week and Madeleine really enjoys listening to her. She will often let Madeleine play with the harp strings, and Mad seems to really enjoy that, even though she is so tentative about touching the strings...it's like she knows how much one of those things cost. There are also storytellers and various other people that will come around to make the time go by a little faster. One day a month there are miniature horses in one of the gardens. So far, Madeleine likes to stick her fingers in their noses.

Today we got to meet Darren Sproles of the San Diego Chargers (#43) (click to enlarge image):



We watch the Chargers every Sunday, so it was kind of neat to meet one in person (even though I'll admit that I had to look up his number to figure out who he was). This is him in action:

After googling him I learned that Sprole's mom died of a five-year battle with cancer. I like to think that he visited Children's Hospital today because he is passionate about the cause.

Bassets and birthday

I haven't posted much in the last week. I've been very busy with work starting up for the year (I work online, from home, part time), and school work. Ryan's been sick with a terrible cold that's been going around, and I think I have the beginnings of it today. Just in time for chemo week! We're really hoping that Mad doesn't get it, especially going into chemo. It's really not fair to give a kid a cold and then completely wipe out her immune system. I noticed that Madeleine has started losing her hair. I saw a bunch of it on me this morning and it's starting to come out if you tug on it. I have this obsessive compulsion to pull on her hair everyday. It probably looks like a mama gorilla searching for fleas. Ha! Ryan is threatening to shave his head when she loses all her hair this time around. I'm not so sure that's good idea.

Last week we babysat a friend's basset hound, Charlie. We loved having Charlie around because he was a great friend for Humphrey and very snuggable. He also doesn't bark, and slobbers significantly less than Humphrey, but it made me realize that I definitely don't want two dogs, at least not two goofy bassets.

Bassets spooning.
Humphrey can only share his bed if he's asleep.

Unfortunately she's not asleep. If it were that easy we'd let her sleep with Humphrey every night!

We also had birthday party part II this weekend. Most of our friends couldn't make it because we had to postpone the date. We ended up having a quiet, relaxing get together with just a couple of people. It worked out well since Ryan and I were both not feeling very well. I hope Maddie isn't disappointed next weekend when there are no balloons, cupcakes, or gifts to open! I think she could get used to this.

Tomorrow begins another week of chemo. Hard to believe it's already time for round two. After this round she will have an MRI (probably the week of Thanksgiving, but it's not scheduled yet) and we will go from there. Our doctor was fairly certain that she would need at least two more rounds, so I'm not getting my hopes up about the results.

Birthday and Halloween pictures

Flying bee

With Uncle Kyle


She loves her new train!

The grandmas

All the grandparents

There were even doggies

Tasty doggy