Christmas Recap

For Christmas this year we flew up to Nana and Pop Pop's house in Auburn. It was Madeleine's first airplane ride, and she did very well.


Luckily the flight was only just over an hour because she spent the entire time figuring out how things worked. Tray table, up and down, up and down, up and down. Window shade, up and down, up and down, up and down. Arm rest, up and down, up and down, up and down.

When we landed, we picked up Aunt Rebecca and headed to a restaurant for dinner.


The next day, we went up to the snow. This was Madeleine's first experience with snow and she didn't think too much of it. It was cold. Back in the car she screamed at us because her hands were cold.

Her shoes were also totally inadequate.

Over the next couple of days there were many, many presents to be opened. Mad really got the hang of gift unwrapping, and even tried to open other people's presents. Here she is hugging a bear from great Uncle Lorey and Aunt Carm.

Christmas morning it was apparently time to try out some disco moves.

All dressed up in her Christmas outfit (thanks to the hand-me-down from her big "sisters!")

On Christmas day, Grandma and Grandpa N, Uncle Kyle and Aunt Karen also came. We went to the winery to do some tasting.

The day after Christmas there was a party for Ryan, to celebrate his new PhD status. It was great to see so many friends and family, and I can't believe how many of you read this blog!

No word on the scheduling for her surgery yet. I'm sure they will call next week, after the holidays.

2008: So glad to see you go

It's been a tough year. Definitely the most difficult that we've ever faced, and hopefully this year will go down with that record.

I'm looking forward to 2009 for many reasons:

In 2009 Madeleine will no longer be in treatment, and will be on her way to being deemed, "cancer-free."
In 2009 she will have her Hickman line removed and we will begin swim lessons.
In 2009 Ryan will officially be a postdoc, and no longer a graduate student. (We are very proud of Dr. Ryan, as he successfully defended his dissertation this month and earned his PhD!).
In 2009 we will, hopefully, have enough money to survive unassisted by our very generous families.
In 2009 all three of us will have have medical, dental and vision health insurance.
In 2009 we are likely to moving somewhere new, depending on where Ryan gets hired.
In 2009 Humphrey will behave and no longer chew up Christmas presents (true story), or toys....one can dream, right?

I hope that everyone has a safe and happy New Year's.

neurosurgery

The doctors have decided that it would be best if Madeleine has another neurosurgery. That way they will be able to get a biopsy of that part of the tumor, and relieve some of the compression in the spine. Our doctor said that they had multiple tumor board meetings about her and this decision involved the opinions of many people. She also asked if wae wanted to have the surgery in San Diego or L.A. Of course I told her that we would prefer San Diego, unless there was any benefit to having it in L.A.

She had this same surgery (laminectomy) when she was first diagnosed last February. I don't know if this will be exactly the same, or not. She will be hospitalized for a few days afterwards. Dr. M. assumes that this surgery will take place sometime in January. She is now consulting with our doctor here, and the neurosurgeon that will be performing the surgery (the same one she had previously).

We are going to enjoy our Christmas and try not to think too much about the upcoming surgery.

Waiting for news

We're still waiting to hear from the doctor as to what kind of surgery Mad will be having. I talked to her last week and she said that the surgeons were still debating about the best way to go in (from the spine or the abdomen). I don't think they can get at both tumors from one site, but they don't want to do both,as that would be a huge surgery. Hopefully I'll have some news later today.

p.s. Look carefully in the photos and you'll notice that it is snowing in San Diego!

L.A. Trip

First, I don't understand what is appealing about L.A. I'm sorry if you live there, or you love it there, but I just don't get it. Traffic is horrible. I know San Diego has its bad traffic, but it never seems to be as bad as the traffic in L.A. is. I don't think I could ever get used to that. We were about an hour late to our appointment (luckily they told us to be there an hour before our actual appointment, so it worked out okay), due to the last six miles of the drive. And then parking at the hospital was pathetic. The main lot was full so we were directed to the lot across the street, which of course was also full so we were told that the only option was valet....ugh!

And onto the actual news:
We met with Dr. Marachelian who is just about the nicest person ever. She talked to us for about an hour and a half and I got the feeling she would have gladly stayed longer if we needed it. She specializes in Neuroblastoma, and 95% of her patients are NB kids. She didn't come right out and say it, but she is the NB expert in California at least.

Basically she told us what we learned previously from Dr. Kim. That she thinks the tumor is on its way to maturation and the best course is to just wait it out. As the tumor matures the cells move from being neuroblastoma cells to ganglioblastoma cells to ganglioneural cells to neural, or nerve cells. She explained that neuroblastoma responds to chemotherapy and nerve cells do not. The fact that Madeleine's tumor did not respond to the last few courses of chemo could mean that the cells are starting to reach maturity. However, because it is still growing, it is evident that there are still some cells that are differentiating (maturing).

Dr. M meets with the L.A. tumor board tomorrow and they will decide then the best way to proceed. Madeleine will need more surgery, but it could be a biopsy (which I believe is a lot less invasive), or another surgery to debulk the tumor in the spine. In order to proceed with this new plan they need to know the pathology of the tumor. We haven't had any pathology since her surgery in June, which was six months ago. If the pathology comes back as she expects (ganglioblastoma), then we will have her Hickman line removed (yeah!!), and follow the tumor with MRIs every three months. However, if the pathology shows a lot of immature cells than they will have to come up with a new plan.

In case you were wondering, the abnormality on chromosome 11 that I posted about earlier, is NOT an inherited genetic thing. In other words, Ryan and I are not carriers and have about as much of a chance of future children having this disease as the one in a million chance that one child would get it. We've been told this before but it's always a relief to hear it again.

I should hear from Dr. M as to the tumor board's decision by Friday at the latest. The surgery will either be in L.A., or here in San Diego (we vote for here!).

We are very excited about this recent turn of events!

Happy baby

This is the story of a happy baby.

First, we made peanut butter chocolate chip cookies. Madeleine stood on a chair and watched everything I did. She even helped squish and poke at the dough. We brought some cookies to daddy, who was working on his thesis in the garage. Madeleine practiced finding her belly button. She can also find her ears, eyes, head, nose, mouth and toes when asked. You have to be careful about asking her to find her belly button, because she will then ask to see yours, sometimes lifting your shirt up to find it if you don't comply fast enough.

Next it was dinner time. Pasta is a favorite, of course. The messier the better.

The best part of the evening is bath time. Mad LOVES her bath. When she's cranky all I have to do is say bath and she is immediately excited. Lately she even says bath ("baff"). Which means that bath is on par with Dada and doggy; the highest honors given. (she also says that, "dat," and again, "gin").

After playing peekaboo with the towel about a hundred times, it's time for pajamas.

And quiet play time before bed.



Tomorrow we head up to LA to meet with the Neuroblastoma specialists. Wish us luck. I'll update when we get back tomorrow afternoon.

Update! Update!

The highs and lows of dealing with cancer are incredible. Emotional roller coaster does not even come close to what we have been experiencing in the last 10 months.

Monday's news was probably one of the lowest lows. To be told that the stronger chemotherapy was doing nothing, and that we were injecting poison into my baby's body with no effect to the tumor was difficult. The fact that our Oncologist was "concerned" and "surprised" also did not alleviate any fears that I had. It's not good when your Oncologist is concerned. She also started talking about stem cell harvest and bone marrow transplant, in preparation for and as the result of the possible further treatments. All of these things forced that steel box that I keep in my mind to open up a bit and allow the very scary possibilities to come seeping out. Yesterday I had to mentally close that box about a hundred times. I literally imagine shoving those thoughts that begin to manifest themselves into a box and watching the steel sides, top and bottom come closing down over them. I know that this is probably a little dramatic, but it's one of the ways that I deal.

Today is one of the highs. A tentative high, but high nonetheless. The oncologist called and said that after conferring with the doctors in Los Angeles that they (the LA docs) think that we shouldn't be too worried about the growth just yet. They think that we should give the tumor more time to mature. Giving a tumor free reign makes me a little nervous, but these are the experts. Madeleine was initially diagnosed with intermediate risk Neuroblastoma. There are three genetic markers that they look at, and the main two are negative in her case, which puts her in a lower risk group. Also, the fact that her tumor has not spread to other parts of her body is another indicator of her intermediate risk status. The third genetic marker does show that she has an abnormality on chromosome 11. I don't know what any of that means, except that Dr. Kim explained today that it hasn't been proven yet, but many people think that that abnormality makes the tumor more aggressive. In fact, the LA doctors are about to publish a paper on a group of low to intermediate risk patients with a chromosome 11 abnormality. These are the doctors that are telling us to wait it out and see if the tumor can be pushed to maturity on its own. No chemo, no nothing, except for scans and urine checks. They also say no radiation for now, and our radiation consultation is being cancelled.

The LA doctors (I wish I could stop calling them that, but I don't really know their names), want to meet us and have a consultation. Our clinic is currently mailing out all of her tests, scans, etc to them so that they can review her entire file. They are hoping to meet with us next week. the "do nothing" treatment plan is not for sure yet, we need to wait for them to review her file and meet her, but that is their initial assessment.

There is still, as always, a possibility of surgery. One, a biopsy may be performed at some point to assess the maturation of the tumor. Two, a surgery similar to her previous surgeries to debulk the tumor should it get too large, is also a possibility. The part of the tumor that is growing is in the abdomen and Dr. Kim assured us that it has plenty of room to grow and is not near anything that it can damage. The part of the tumor that is in her spine has not grown, and will damage nerves, impact movement, if it does grow.

This is all as I understand it, so I may be missing pieces here and there. As you can imagine I have quite a few questions for the Neuroblastoma specialists, and I am almost weirdly eager to meet them.

So, today is a high. We are, I suppose, cautiously optimistic. We are nowhere near celebrating, but we are feeling a hundred times better than yesterday. One step at a time.

Boxes: more than just useful

Over Thanksgiving weekend we visited Grandma and Grandpa N in Coarsegold. Since we will (hopefully) be at the other grandparents' house over Christmas, we had a mini Christmas with some larger things that we won't be able to take with us on the plane back to San Diego. Madeleine got a very cool rocking Elephant that she completely loves. However, the box that it came in proved just as much fun, especially when Daddy joined her in it.

The day before Thanksgiving when we were still in San Diego, Madeleine stood up in the middle of the kitchen floor and took two very wobbly unassisted steps! Since then she has sort of been trying to walk, but no major improvements yet. We, of course, are thrilled with that development.

Not so thrilled about the continuing lack of sleep. I was awake from midnight to 3:15am, and then again at 5:30am. And again at 6:30am. Lovely. Of course she sleeps now.

Thank you to everyone for your comments on the last post. No news from any doctors yet about the next treatment plans. We do have a consultation with the radiation (radiology?) doctors at UCSD on Tuesday.

MRI results

The tumor is bigger

Chemo has been canceled for now, as it didn't help.

We're waiting to hear about next steps. Our doctor is waiting to hear back from a doctor in LA that specializes in experimental neuroblastoma treatments. If we qualify for their treatment, we may be going to LA. Our doctor is also scheduling a consult with the radiation doctors at UCSD. We don't know if radiation will be the next step, but she would like to have the consult anyway.

That's all I know so far.

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

Quick note

We're having a great time with the family this weekend. The best news, however, is that Madeleine is well on her way to being recovered from her chemo last week. On Tuesday her counts were at 60 (which is very low) and today they are 988! The GSF shot did it's job and we no longer have to give it to her for this round, yahoo! We have another clinic appointment on Wednesday, to make sure that everything is still checking out okay and to check for the slight possibility of needing blood, because her hemoglobin is still pretty low.

This time last year

This is what I looked like.


We had checked into the hospital for an induction (ten days past my due date), early in the morning.

I was hooked up to what seemed like a million machines (but really it was an IV, contraction monitor, baby monitor, and blood pressure cuff - which seems like nothing now).

I was reading and Ryan was trying to watch Heroes on TV. After eight hours of pitocin I was just starting to feel contractions.

The next twelve hours were very intense as the contractions really hit. I'll spare you all of the details, but at the end of it we met baby Madeleine.

She was perfect.

It's true what they say about your life never being the same after having a child. it's not just the sleepless nights and constant diaper changes, but the fact that there is a little creature that relies on you so totally and completely. It's about putting someone else first. And the rewards for all of this are much greater than the effort that it takes to get there. A first smile, a first laugh, hearing her say, "mama." Seeing the smile on her face when Ryan gets home at night.



This was her Halloween picture last year, one day old:
And this year's:


Happy First Birthday!

Cooking with Daddy

Pumpkin Patch

We are so glad to be done with our week of chemotherapy. Mad's counts on Friday were still pretty good so I took her to the pumpkin patch with some friends. It was a little crowded but we had a good time. The older kids had fun crawling on hay bales and walking through a corn maze. Everyone enjoyed picking out a pumpkin, even Madeleine - she wouldn't let go of it once we gave it to her.

Mad, Andrew, Audrey, Kassidy

Enjoying some pumpkin time

Emus are the strangest looking creatures.

A home health nurse came out on Saturday and taught me how to give her the shot. The needle is much smaller than the one that I practiced with in clinic, and the whole thing went rather well. I feel much better about having to do the injections.

We have clinic again on Tuesday for labs. Hopefully the GSF shot will be doing it's job and raising her white blood cells so that the need for a transfusion, or platelets, will be less.

Early Birthday Surprise

Dear Uncle Kyle and Aunt Karen,

Thank you so much for the fun water wheel table.
I was going to open it on my birthday, but after
a long week of chemotherapy I really needed a
little treat.

At first I thought it was something to climb on until I saw it being filled with water. Water is the most fun, and now I don't have to play with it in Humphrey's water dish!

I love it! I can't wait for you to come visit so that
you can play in the water too.







Love,
Madeleine