August 29, 2008

Updates

- Counts on Tuesday were still low, 550. We're still continuing on with our weekend plans though because she is above 500, and I'm sure that she is much higher than 550 by now.

- MRI is scheduled for early Tuesday morning. I just found out that they are also planning on doing a bunch of other tests while she is in recovery from the MRI. They'll do the ECHO and the BAER (hearing test) and maybe more. She has to lay very, very still for these, so they'll be able to do it while she's still somewhat sedated from the MRI. This is great news because it means that we won't have to have a separate appointment for all these additional tests, and she won't have to be sedated again for them. I was especially not looking forward to the ECHO and chloral hydrate sedation. That one was rather unpleasant to watch.

- After the MRI and other tests we go straight to clinic for labs. Looks like Tuesday will be rather long.

Have a great Labor Day weekend!

August 28, 2008

Picture day


This is what Mad does in her her spare time



Lunch. Before...


and after


Not done! There's one more banana!



How cute is she? Seriously.

August 26, 2008

What it's like - part two

There is nothing that I can write that can aptly describe this day. Much of it I still remember with frightening clarity, but some parts are mere blurs. I can safely say that it was the longest day of my life. The entire day feels like it was about two weeks long. And with everything that happened then, and all of the emotion that went into it it really does deserve to be much longer than it was.

The day of diagnosis

Madeleine had to fast for four hours before her MRI. That doesn't sound very long, but when you are just four months old it is a very long time. When we checked in for the MRI we had no idea that we would end up being in the hospital for eleven days. We even had an appointment with her pediatrician later that day to discuss the MRI results. Needless to say we didn't make that appointment. I was very nervous about having my baby sedated. There are risks involved with sedation, but probably 99% of the time there is no problem at all. Of course none of this mattered to me at the time. The idea of sedating her had me terrified. We checked into the hospital and after much paperwork we were finally sent to the day surgery waiting area (MRI scans wait there too). It was very early in the morning and there weren't many people around. No one tried to talk to us, which is good because I probably would have burst into tears if I actually had to say words to anyone. Finally one of the MRI transport guys came to get us and we began our long walk to the MRI center. We've taken that walk many times since then, but I will never forget how fragile I felt that first time. It was sort of like walking on air, I couldn't feel my feet touching the ground, and couldn't think of anything other than my concern, fear, and the weight of the baby in my arms.

Once we waited at the MRI center for awhile we were taken into the elevator and down one level to where the MRI machines were. I can vividly recall the elevator doors opening up to the sight of an adult-sized bed with a nurse and a couple of doctors standing on the other side of it. Upon seeing the bed, my first thought was that it was far too big for her and that we shouldn't be here. We were advised to kiss the baby and place her on the bed. The very nice nurse suggested that we leave before they administered the sedation medication because she could see that I was very upset. I'm so glad that we did. I've since seen her be sedated and while it's not so bad now, it would have been terrible to observe that first time. It's nothing like falling asleep. On the elevator ride back up I started sobbing. The poor transfer guy (I'm sure they have a title but I don't know what it is) that escorted us back out tried to explain that hundreds of babies have MRIs and that they never have a problem. I knew this, and it wasn't so much the MRI, or even really the sedation that I was scared of, it was what they might find.

We were told that the scan would take about 30 minutes, maybe an hour if they decided to scan her brain as well, so we decided to walk to the cafeteria to get some coffee. I remember walking around the cafeteria wondering how so many people could be so calm and happy. One of the hospital social workers (although I didn't know who she was at the time) came up to me and asked how she could help. Ryan explained that our daughter was getting an MRI. I felt that he didn't explain it accurately, although no one could, in my mind. It was more than an MRI, we didn't know what was wrong with her, it could be something really bad, she's only four months old. The social worker brought me some napkins and left.

Eventually we returned to the MRI waiting area and waited forever. At some point I deduced that they must be scanning her brain since it was taking so long. You would think this would freak me out more, but it had the opposite effect. I rationalized that if they were scanning her brain that meant that they hadn't found anything in her body that was wrong, and in the end they would find that nothing was wrong with her at all. Of course now I know that they scanned her brain because they had already found a giant tumor and they were checking to see if it had spread to her brain.

Finally Mad was wheeled out (still sedated) and we started to follow the bed to the recovery room. She looked so small curled up in the giant bed. In the hallway we met our pediatrician who had been in the room with the MRI techs to read the scans. We had probably walked about five feet before she said, "They found a large mass in her abdomen." After that I couldn't deny it anymore, I couldn't will this not to be happening. My worst fears were being realized. After discussing the findings a little more while still walking down the hallway (this was weird to be told something so devastating while walking, but she knew she couldn't wait the five minutes it would've taken to get to a consult room), she led us to a private room and talked a little more about how they were 95% sure that it was a neuroblastoma. I don't really remember what else she said. She gave us her cell phone number, hugged us, and walked us to another surgery waiting room where we were to wait for Madeleine to start to wake up in the recovery room. I can't even explain how I felt at that moment. I've started to write five or so different sentences but none of them come close to portraying how vulnerable and devastated I was at the time.

One parent was allowed to go back to the recovery room. I don't even think it was a question, but Ryan knew that I would probably have staged an epic battle in order to be that parent. Madeleine was attached to an IV, as well as having leads for various sensors on her. She had started to wake up and I was allowed to feed her. At one point I looked away from her and when I looked down she had specks of blood all over, and all over me. I was trying not to panic because I knew she had only had an MRI, not a surgery. I think I said something like, "um, blood!" and the nurse came running over. It turns out that she had pulled off a cap on her IV, and then flailed her arm around to make it look like a trauma scene. I was eventually given a pair of scrubs because they didn't want my bloody jeans scaring the other parents. For the rest of the day I was mistaken as a nurse, which has its advantages (discounted food in the cafeteria). After a little while they decided that Ryan could come back too, since it looked like we would be there for awhile.

The neurosurgeon came by and was very, very serious with us. We joke around now that he's our least favorite neurosurgeon because he's so serious all the time. He shadowed us that whole day, administering steroids to see if that would have an effect on the tumor and bring about some movement in her leg, and talking on the phone. We later found out that he was conferring with the head neurosurgeon who was on vacation at the time and was eventually called back for Mad's surgery (Luckily for us he was only in LA). We also met with our Oncologist who came with a social worker. Being introduced to the Oncologist was a little strange. It hadn't really set in yet why we would need her.

All in all we were in the recovery room for 2-3 hours, waiting for a bed to open up in PICU. At first they weren't sure whether they were going to do the neurosurgery that day, or wait until Monday. A Friday evening surgery, neurosurgery at that, wasn't optimal but it eventually outweighed the risk of waiting through the weekend.


This is long enough for now, more to come later...

August 25, 2008

Her Father

We had a busy weekend as we are still in the process of setting up the new house. The garage was organized and cleared out, the grass mowed, and the last couple of boxes of random stuff that doesn't really go anywhere found homes. We also went to Stone Brewery for an early dinner on Saturday night. Madeleine did really well there, and was happy as long as we continuously fed her bread.

But the best part of the weekend? Ryan moving the stove out and then climbing behind it to construct the great baking powder mountain range in our ongoing battle with the ants. And so far, no ants!



Being skinny has its advantages





I know what you're thinking, "no pictures of madmadammadeleine? Weird..."

August 21, 2008

What it's like - part one

I've been thinking about this post for quite awhile. For the most part I created this blog to keep friends and family updated on Madeleine's progress. I initially decided to keep the emotional side of dealing with a child with cancer out of this. Today I will break that vow because this post has been in my mind for quite some time. And also, because maybe there is someone out there that will read this and be able to find some sort of comfort in the similarity of their own feelings and reactions in dealing with their child's cancer journey. I know that all experiences are different, but in talking to some of the parents of children with cancer, there are also a lot of similarities in coping with this terrible disease.

The days leading up to diagnosis:

Madeleine was diagnosed with Neuroblastoma within three days of initially presenting her symptoms. We are very lucky in this aspect because many times it takes months to diagnose Neuroblastoma as many kids present with flu-like symptoms - not something for which one would get an MRI.

We had noticed progressive weakness in her left leg for some time. I kept second guessing myself because suddenly she would move the leg and I would think that everything was okay again. Not a day passes that I don't wish I had taken action sooner than I did. I don't know if it would have made a difference to have caught it a week or even two earlier, but that thought remains.

It was a Tuesday morning that I finally called the pediatrician. The nurse I spoke with was concerned and she had me come in to see the doctor that very day. Madeleine and I met with the pediatrician (not our usual ped.) and a medical student. They asked me a bunch of questions and did all kinds of tests. They couldn't get a reflex on either leg and seemed to be becoming increasingly more concerned. The doctor and student stopped talking to me and started only speaking with each other in medical jargon. They were both very, very serious and I started to get a little panicky. I was sure that I was going to bring her in and that they would find nothing wrong whatsoever and send us home. The doctor wanted to get some labs and x-rays to rule out any infection or fractures. She was pretty sure that this was not the case due to her preliminary tests. She also brought up having an MRI...an immedietely shocking word.

After getting the x-rays and blood work done we headed back to the pediatrician's. She informed us that everything came back fine and that we would be called to schedule an MRI. She also said that she had never seen anything like this before.

I don't remember much of what we talked about for the next two days. We couldn't get an MRI until Friday of that week. Our regular pediatrician, who had been briefed on all of this, called us multiple times throughout that week.

I first heard the word "cancer" the Wednesday night before the MRI. Ryan's father, a neurologist, had been researching Madeleine's symptoms and consulting with our pediatrician and a pediatric neurologist. Ryan told me that they all thought that it could be neuroblastoma. I often wonder what it would be like to go back to a time when I didn't know what that word meant. Ryan gently explained that it was a cancerous tumor and that is the first of many times that I broke down. I quickly decided that it wasn't that. There's no way that my baby has cancer. Weirdly that became my mantra for the next couple of days. I never said it outloud, but hundreds of times throughout the day and night that was my constant refrain: My baby doesn't have cancer. I kept insisting (again, to myself) that it was just a reaction to her immunizations, that it would go away on its own. I know now of course that I was in shock and denial.

to be continued...

From the backyard



August 19, 2008

Charting

Madeleine is in the 95th percentile for height, and 50th percentiles for weight and head circumference. I need to get her a new car seat. The infant seat that she has is only rated up to 29 inches and she is very close, if not surpassing, that number (she gets her height measured every week and it always varies a little because they aren't too exact about it -- for instance, today at the pediatrician she was over 30 inches, and at clinic half an hour later she was 28 inches). I've been avoiding getting her a new seat because they are very expensive and because when she falls asleep in the car in her infant seat I can usually lug it inside while she stays asleep. I won't be able to do that with the next seat.

Her counts are very low, her ANC is at 140. She'll be back up to normal by next Tuesday though and then she will be all recovered from this round. Clinic took awhile today because we were waiting for her to pee. They were about to send me home with two handfuls of cotton balls, but she finally went. I'm glad because we've done the cotton ball thing before and it seems like we can never get enough for the specific test that they need it for.


Sitting with Grandpa





New dump truck!




But she really just likes to eat the "dirt" it came with

August 18, 2008

Reconnected

We're back up on the internet after our big move this weekend. The move went well, faster than I thought, thanks to the help from the grandparents and friends, Doug and Jimmy. We're very pleased with the new house, it's a big improvement from our crazy wood paneled, constructed and planned by drunk 12 year-olds, old house. We're in a much nicer neighborhood and it's a lot closer to work for Ryan, and the hospital for Mad.

Madeleine has been crawling around unpacking boxes at her leisure. Yesterday she found a small tin of thread and quickly went about the task of unraveling as much of it as she could. She's been sleeping a little better in our first two nights here, but that could be because with all the moving excitement she hasn't been napping as much as normal.

We had physical therapy this morning and the therapist said that she's doing great, and she's really found ways to overcome the weakness in her right leg. We're now about halfway to the original five months of recovery that the surgeon estimated. Tomorrow she has clinic for labs and her nine month check up with the pediatrician. She hasn't been to her pediatrician since her original diagnosis at four months, so it's probably time. I didn't think it was necessary to take her in for her well-baby checkups when she was being checked-up on so frequently by the oncologist doctors and nurses. Her immunizations are all on hold due to the chemotherapy so I didn't see much of a point to taking her in. And because it was just one more appointment to take her to. I finally decided that we should probably meet with the pediatrician anyway, as much to keep and establish a relationship with the doctor as to have a checkup.

Pictures to come soon.

August 15, 2008

moving

Moving with a baby, gah!
Yesterday I was only able to make two runs over to the new house. On the second run Humphrey was begging to come, so I took him too. He loves that the new place has a doggy door to the yard and he practiced going in and out, in and out. I think he loves it.

Looking forward to grandparents coming today to help and watch the little one. I think I'll be able to accomplish much more.

I won't have internet again until Monday.

August 12, 2008

Not much to say


Showing off her scar



She saw our cat, Diego, go through this cat door and now she is obsessed with trying to get through the cat door.


Not too much to update. We had an appointment yesterday with the nurse practitioner from the surgeon's office to check out her incision. It was sort of a pointless appointment if you ask me, but I suppose those are much better than the big appointments. We have clinic in a couple of hours for labs.

Other than that we are packing and getting ready to move this weekend!

August 6, 2008

Video!

video
I have the video camera screen pointed towards her, notice how excited she is when she sees herself.

Home again

Yesterday was long, the longest chemo day yet. So long that we were there after the clinic shut down (730ish), and had to be moved to an inpatient room for the last hour of post hydration fluid. We were put with a super nice family with a little girl (age 2) whose bone marrow isn't functioning like normal and had started to show beginning signs of leukemia. The girl was beginning her second round of chemotherapy, but luckily she was already in remission. It was really nice to talk with someone who is going through the same experience.

Madeleine is doing well, although she is still tired from yesterday. All of the nurses were amazed at how happy she was after such a long day in the hospital. She is back on nausea meds for a couple of days to help control any nausea or vomiting that she may have.

We remain hopeful that this was her last round of chemo. Our doctor ordered an MRI, as well as an EKG, ECHO, BAER (hearing test) and some other tests to be given in about four weeks. This is great news as these tests are all end of treatment tests.

So, now we wait to see how her body responds to this round, and we wait for the MRI which will be sometime in the first week of September.

August 5, 2008

Chemo day

I'm posting from the hospital. It's 2 pm and we're still waiting for chemo. Labs all look good, her counts are up above 1200. She has 2.5 hours of chemo (three different drugs), and then three hours of post hydration fluids. Looks like we'll be here for awhile still. Luckily Ryan was able to come with me today so I can sneak away for some breaks. We're really hoping this is her last round...we'll see.

Also just realized that the picture of Madeleine on the top right of the page isn't showing up on this computer. Is anyone else not seeing a picture there?

August 4, 2008

Mmm Spaghetti


The new meds are doing the trick and I think things are getting back to normal. Just in time for chemo #6 tomorrow. It's a big day tomorrow, but at least it's only one day of it this time. Her levels will be measured to make sure she is high enough to receive chemotherapy.

Other than that she is doing well. Physical therapy is impressed at how well she is using her right leg. It's been almost two months since her surgery, so we aren't even half way to full recovery for her leg (the surgeon said it would be five months until the nerves regrow/attach and she's back up to full strength).

August 2, 2008

Poop counter

Today is day 10 of no poops.
After trying various remedies she was finally put on some stronger meds, but nothing yet.

Her ANC is lower than it was last week, 264. White blood cells and everything else remain about the same though. They are still planning on doing chemo next week, as long as she is back up to an acceptable level.

Remember to sign the petition (below) if you haven't already. It's easy to sign and they won't harass you with emails.

August 1, 2008

How you can help


Here is the funding summary from the American Cancer Society 2006-2007 Fiscal Year.

American Cancer Society Funding - FY 2006-2007
Area of Research $ Awarded
Prevention $ 22,517,000 16.34%
Detection $ 5,332,000 3.87%
Treatment $ 23,092,000 16.75%
Psychosocial and Behavioral $ 17,651,000 12.81%
Health Policy/Health Services $ 8,634,000 6.26%
Poor and Underserved $ 15,862,000 11.51%
Childhood Cancer $ 4,076,000 2.96%
Environmental Carcinogenesis $ 5,985,000 4.34%
Epidemiology $ 8,055,000 5.84%
Cause/Etiology $ 15,915,000 11.55%
Survivorship $ 7,822,000 5.68%
End of Life $ 2,890,000 2.10%

$ 137,831,000 100%



2.96% is not an acceptable number. Curesearch (as mentioned in the article in the previous post) is dedicated to finding cures for pediatric cancer.


How can you help?

Photobucket

Sign the Cure Childhood Cancer petition (click on the banner above) to help raise awareness and funding.

The petition hopes to collect one million signatures in support of creating a network TV special devoted solely to childhood cancer. Childhood cancer impacts 1 in 300 children, and is the #1 killer disease of children. The television show will not only bring about awareness, but will promote a book about childhood cancer and all proceeds will go to Curesearch.

Conquer Childhood Cancer Act

President Bush Signs "Conquer Childhood Cancer Act" in White House Ceremony Children with Cancer and Their Families to Benefit

July 29, 2008 (Bethesda, MD) - CureSearch National Childhood Cancer
Foundation is pleased to announce that President George W. Bush has
signed into law H.R. 1553, the Caroline Pryce Walker Conquer Childhood
Cancer Act, at a ceremony in the Oval Office.
This legislation was named in memory of Caroline Pryce Walker,
daughter of Congresswoman Deborah Pryce (R-OH), who succumbed to
neuroblastoma in 1999 at age nine, and will dramatically increase
federal investment into childhood cancer research.
The bill passed the United States House of Representatives on June
12th by a 416-0 vote and in the Senate by unanimous consent on July
16th.
The original co-sponsors for this landmark bi-partisan legislation
include Congresswoman Pryce, Congressman Chris Van Hollen (D-MD) and
Senators Jack Reed (D-RI) and Norm Coleman (R-MN).

The bill authorizes $30 million annually over five years, providing funding for collaborative pediatric cancer clinical trials research, to create a population-based national childhood cancer database, and to further improve public awareness and communication regarding available treatment and research for children with cancer and their families.

"The Conquer Childhood Cancer Act allows for translation of the very
best research discoveries into clinical evaluation and practice, in
order to improve the cure rates for all children with cancer," stated
Gregory Reaman, MD, Chair of the Children's Oncology Group.
"On behalf of my colleagues in the Children's Oncology Group and the
children with cancer and their families who are our partners in
clinical research, we thank President Bush and our nation's leaders.
Only research cures childhood cancer."
CureSearch exclusively supports the life-saving research of the
Children's Oncology Group, the world's premier cancer research
collaborative. Treating 90 percent of children with cancer, the
Children's Oncology Group includes more than 5,000 experts in
childhood cancer research and treatment, located at more than 200
leading children's and university hospitals across North America.
At the signing, Pryce stated that "for any child or family who is
embroiled in the fight against pediatric cancer, today is a cause for
celebration and renewed hope. At long last, we will be harnessing our
nation's vast resources and expertise to put an end to a scourge that
takes the lives of more than 2,300 children every year."
"We are grateful to the President and to the United States Congress
for their leadership in making the cure for childhood cancer an urgent
national priority," stated Stacy Pagos Haller, Executive Director of
CureSearch. "Passage of this historic bill gives attention and support
that is long overdue and much needed."