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

Another day done

Madeleine has been feeling much better since Tuesday night. I ended up calling the doctor on call that night and they upped her dose of Zofran (the anti-nausea med). She's eating a little here and there, but no where near her usual appetite.

At clinic today I practiced doing the GSF injection. It's fairly easy, but I practiced on a gauze bandage. I'm sure that the actual injection will be more difficult. It has to be given in her leg once a day for ten days. We start on Saturday. Home health is supposed to come out sometime that day to bring us the supplies and teach us how to do it. Again, I'm really not looking forward to this, but at least I know that the shot will be helping to raise her counts faster than they would recover normally.

Clinic went by fast today because Danelle stopped by to sit with us for a few hours. It was a nice break from the monotony of sitting around and trying to entertain a fussy baby. Just one more day of this!

Sick

This new chemo regimen is hitting Mad pretty hard. She's been throwing up a lot, even on the anti-nausea meds. And, to top it off she's got a cold. It's just so frustrating; chemotherapy is bad enough, she doesn't need to be more sick and stuffed up on top of that. I hope the cold goes away quickly, but her white cells are probably already dropping, so it may hang on for awhile.

They retested her urine for red blood cells today and they found that she is in the normal range so they'll probably check again this week, but I think she's okay.

Day One - check!

Day one of the new chemo treatment is done. Only four more to go this week!
It actually went a little faster than we had expected, we were home by five. If this chemo doesn't work, or even if it does, our doctor seemed pretty certain that she will be starting radiation at some point in the future. So, I guess we have that to look forward to...

In her urinalysis today they found some red blood cells. This could be because of some of the past chemo that can break down tissues in the bladder. This new course of chemo also contains that particular drug (cyclophosphamide, a cytotoxin), so they will be measuring her urine very carefully. If it's still a problem we may need to be in-patient so that she can be constantly hydrated via an IV. The hours of pre and post hydration that she receives now are for this reason, so that the fluid pushes the drug out and it doesn't cause problems in the bladder. It could also just be a fluke thing, caused by diaper rash or something like that. So, hopefully it's nothing and they'll just keep a close eye on it.

Regarding her birthday party:
Our doctor thinks that we should postpone her party by a week so that she has a better chance of her counts being up, and less of a chance of infection. So, her party will be a week later than planned. *If you are a grandparent, Aunt or Uncle and already have plane tickets you can still come on the original date. I guess she'll just have two first birthday parties!

Pictures from this past weekend:

Yes, it was laundry day. She doesn't normally wear green flowery pants with a Harley Davidson onesie - I promise.

And she had just grown hair

The results of the MIBG show pretty much what we were cautioned to expect. The tumor is still active. The chemical levels in her urine are also both up by about ten points, which is another indicator. After over two months of not being on treatment, she will begin a more intensive five-day round of chemo on Monday of next week. After next week she'll go to clinic twice a week for labs, until the the third week, when it starts all over. After two rounds she'll have an MRI. The doctor thinks that she will need 4-6 more rounds of this chemo.

Because of the intensity of this new combination of drugs, we'll need to give her a GSF shot a couple of days after her last day of chemo. I think the shot has to be given once a day for maybe five days, but I'm not too sure about the details yet. GSF will raise her white blood cell count. As you can imagine I'm not too excited to have to give my almost one-year-old shots.

Eight months later we're still fighting this thing.

Treatment History

Madeleine was diagnosed with stage III Neuroblastoma on February 29, 2008, leap day. (Thank goodness, because I don't need that day coming around again anytime soon). Neuroblastoma is a type of cancer. This blog was started in June to update friends and family of her progress. To read more about what it was like on the days surrounding her diagnosis, go here, and here.

On the day of diagnosis, Madeleine had an emergency surgery (laminectomy) to debulk the tumor in her spine and to hopefully regain movement in her legs. She recovered nicely and regained full-strength of both legs. She also had another surgery in June, a partial resection of the tumor in her abdomen. This surgery lasted for over seven hours. During surgery two of the nerves to her legs had to be cut and she lost strength and movement in her right leg. Madeleine is currently two-and-a-half and still has weakness in her right leg. We are hopeful that she will regain full strength in her leg, but are pretty sure that she will always have some weakness.

Madeleine has had eight rounds of chemotherapy, and this tumor is proving more difficult to get rid of than originally expected. The latest MRI showed that the tumor was still growing, unaffected by the last two rounds of stronger chemo that she received. This was absolutely heartbreaking to hear, but it caused us to start consulting with specialists in L.A. This became a very positive experience as we learned that her tumor, most likely, will continue to grow until it reaches maturity and then it will stop causing problems. The new doctor thought that the tumor was probably on its way to maturity.

In order to check on the pathology of the tumor, Madeleine had to have a third surgery, another laminectomy, in February of 2009. The surgery went as well as we could have hoped. The neurosurgeon was able to remove some of the tumor from her spinal column. As it now stands, (June 2010) she has tumor in her spine and some in her abdomen, but the tumor has now been stable for six months. Madeleine has frequent MRIs to make sure that the tumor is not growing.

Madeleine continues to be in good health (besides having cancer and all) and great spirits. She is one strong, brave and amazing little girl.

She will recover from this and be cancer free. It'll just take some more time.

Scan Success

The MIBG scan today went fairly well. Right before they were going to move her to recovery she had a throat spasm that I guess happens sometimes due to the anesthesia. Apparently that means that she didn't have an airway, but they intubated her (breathing tube) and she was fine. Recovery took a little longer than we are used to because of the complications, but she is fine now and we are back home.

Injected

We spent a long day at the hospital yesterday, with more to come today. When we showed up at Radiology to get the nuclear medicine injection they said, "Has she had her drops?" No...what drops? Someone was supposed to tell me to go to the pharmacy to get drops that she has to have 30 minutes before the injection. Annoyingly the Radiology tech said, "Don't you remember that she had to have drops before her last MIBG?" First of all, we were in-patient during her last MIBG, so the nurse must've given them to her, and no, I don't remember. Secondly, that was eight months ago. Thirdly, she had just been diagnosed with cancer a couple of days before that, so no, I don't remember that she had received drops. So, after a little confusion, we headed to the pharmacy. These drops had to be diluted in water, so I dumped most of the water out of her sippy cup and put the drops in. Of course, the drops taste disgusting, so after one swallow she wouldn't drink anymore. I added more water and she drank some of it. It's sort of impossible to make a baby drink when she doesn't want to and I'm tired of medicine that isn't baby friendly, especially from Children's Hospital. So she had some drops, hopefully enough.

Back to Radiology after the requisite 30 minutes where she finally got her injection through her line (so she didn't feel anything).

After that we had to go to clinic for a doctor check where we waited FOREVER. In all we spent four hours at the hospital for a five-minute injection and a five-minute doctor check.

Today she has her scan (MIBG) at 2:30. Hopefully we'll have some news by next week about the upcoming treatment plan.

Our Week Away

We had a good week visiting the grandparents, but I'm glad to be back in San Diego.
Madeleine's separation anxiety really increased during our week away. It may have been from meeting so many new people, or perhaps it's just the age she is. On the six hour drive home yesterday I had to keep my hand on her (difficult in a rear-facing car seat) or she would scream the whole time. Luckily she did sleep for a couple of hours, so my arm and back got a little break.

She was so excited to see Dada last night, and that lasted for all of five minutes before she wanted to be held by me again. Please tell me that this stage goes by quickly.

On Sunday we went to an Animal Fair in Oakhurst. Humphrey participated in two contests, All American Dog and Best Costume. He didn't win anything, but he sure had fun.

We were robbed! How could he not win?

This is the face she often makes when held by anyone but Mama.
With her Great Grandmother, and namesake.

With Grandpa

Uncle Kyle and Shadow

*Pictures 1, 2, and 5 taken by Karen of KB photography.

Wordle Cloud

I used Wordle to visually represent the most common words that I use on here. Look at that big ol' "cancer" right in the middle.

Madeleine and I are having a good visit with the grandparents. We're also getting to see some friends that we haven't seen in quite awhile. It's nice to catch up.

Mad is obsessed with the stairs here and spends every chance she gets climbing up them. Today we are buying baby gates!