We are traveling to Coarsegold this weekend to visit Great Grandma Madeleine (who turned 92 this week!), Uncle Kyle, Aunt (someday, we hope!) Karen, and Grandma and Grandpa N. This trip was planned at the last minute because we decided to take the opportunity to travel while Mad is healthy and not receiving any treatment. Her next MRI is coming up in a couple of weeks, so we are trying to have as many outings as possible before then, just in case. We realize that many cancer kids do not get this break in their treatment, so we are very fortunate.

Hopefully it's more than a break, but I'm having a hard time thinking of this as the end of treatment because if it isn't and she needs more chemo or surgery, it will be very hard to adjust to that again.

More pictures for the weekend:

Still no hair on the back of her head.



Future gymnastic Olympian

Signs

We've been signing with Madeleine for a few months now. She's been doing the sign for milk for a couple of months, and only recently added a couple of new signs. I think it's pretty amazing that babies can communicate what they want before they can talk.

With her desire to eat also came her love of (very diluted) juice. She's tried peach, apple, prune (on the advice of a nurse for an unfortunate chemo side effect - I'll let you deduce which one), and her new favorite, blackberry. The last couple of days she has really been using the sign for drink. I'm pretty sure it's all in an attempt to get to the sweet sweet blackberry juice.

Signing "drink."

She also learned the sign for fan, which is one of her favorite things. When I was teaching her the sign we walked through the house and I pointed to each ceiling fan and made the sign. A little while later we were sitting on her play mat and she intently stared at the standing fan in the corner and then made the sign for fan. Success! I haven't seen it since then, but at least she did it once :) I think she may be getting confused because the sign for fan is very similar to waving which we are also working on. Maybe she thinks that fans are important enough to be waved hello and goodbye at every time we see one.

Humphrey's sign for "love."
This bone comes all the way from North Carolina,
and Humphrey will not go out, or come in without it.


Close up.

Nothing yummier than baby feet.

Star Cubes

Since her surgery Madeleine has really started to enjoy solid foods. Before, she would maybe eat a bite or two but that was it. All of the sudden she is eating everything. I don't know if it has to do with the tumor being removed, or if the whole eating thing finally just clicked.

I make all of her food because it's cheaper and contains no preservatives or unknown ingredients. Thanks to Sarah's recommendation, I've been using a book called Super Baby Food. It's a great book and contains tons of information on foods that are appropriate to introduce each month, nutritional facts, and easy ways to cook and store baby and toddler foods.

Most days I just open up the freezer, pop a food cube in the microwave and viola - meal time.
Yesterday I realized we were running low on frozen food cubes so I pureed peas, avocados, pears, carrots, peaches and kiwis. I then froze each batch in an ice cube tray.

Carrot, peas, and pear star cubes

I purchased the star ice cube tray before Madeleine was born, and not for the intent of freezing food in it... but it makes the perfect amount and it's sort of fitting for a princess.

Scars

The steri-strips are still on, but you can see the incision. Hopefully it will fade as well as the scar on her back has:

Clarification

In an earlier post I said that the two nerves to her legs were accidentally cut during surgery. Now that I think about it I remember the surgeon saying that they were cut in order to extract the tumor. The tumor had grown around the nerve and there was no other way to get it out. The surgeon told us all of this right after surgery but after seven plus hours nervously awaiting some kind of news I found it very difficult to process much beyond the fact that she was stable and that the tumor was removed.

Also, she did end up needing a blood transfusion during surgery. Which isn't surprising given the length and difficulty of the operation. She lost 12% of her blood (not all at once), but it was replaced.

Since we've been home she's been feeling fine. She doesn't seem to have any pain, or even tenderness at the incision. The dressing on the incision has been removed and it is covered with steri-strips (I think that's what they are called) which will fall off on their own in about a week. The sutures are the kind that dissolve so luckily we don't have to have those taken out. The incision is large but it looks like it is healing well. I'll take pictures of it soon. Hopefully the scar will fade. The scar on her back from her previous surgery looks great now and has faded a lot. It also seems a lot smaller, but I guess she has grown a lot since then..it used to be half of her back.

She also was taken off of her blood pressure medication. The tumor puts out a lot of chemicals and stuff that cause blood pressure to be elevated. Since the bulk of the tumor was removed her pressures have been very good. It's a relief to have one less medical thing to do everyday.

Home

We're back home!
And the best news is that the pathology on the tumor says that it's maturing. It isn't completely mature yet, but it's getting there. Our oncologist wants to just wait and observe the tumor with MRIs. So, no chemo and no surgery as of now. We will have another MRI in three weeks and if there is some change then she may need more chemo or possibly neurosurgery at that point. She will keep her hickman line in until they are certain that she won't need more chemotherapy.
This is really the best news that we could have hoped for.

Physical therapy also came by for a consult on her right leg. She's moving it some, but not a lot. PT gave us some exercises to do at home to strengthen the affected muscles. We will also be going to out-patient PT once insurance approves it. The nerve grows back at a millimeter a day, so it will just take some time.

We are very glad to be home.
Thank you, thank you, thank you to Danelle and family for watching Humphrey!
And thank you for checking in with us!

One More Day

Madeleine had a good night (no vomiting), but she was sick this morning just a little. The surgeon wants us to stay for one more night just to be safe. Hopefully she wont be sick anymore and we can come home tomorrow!

All of the leads and IV fluids are off now, and we're just waiting around.

Here are some fun pictures - Yes, apparently our idea of funny is balancing things on Mad's head.


Happy Father's Day Dada!

Getting Better

The tube in Mad's nose was removed this morning and she is allowed to try to eat today!
She was in much better spirits yesterday and was even laughing yesterday evening. Hopefully we'll be out of the hospital in a day or two.

Pictures

Mad continued to vomit today so the doctor decided to replace the N-G tube. You can see it in the second picture. This tube is clearing her stomach because her bowels aren't ready to work yet. The doctor felt that PICU just pulled the line too early. I know this is all to be expected with such a long surgery, but I can't help but feel that it's a step backwards. She can't eat until probably Monday, but she doesn't seem hungry. Her pain is being managed with morphine. She had a little fever this evening but it was starting to decrease before I left the hospital, hopefully that will continue.

Moved from PICU

Madeleine had a pretty good night and was recently moved to the oncology ward. We feel a little more comfortable there as we know most of the nurses and it is a lot less restrictive (she can have more than two people in the room with her). Both sets of grandparents are here and helping to give us some breaks during the day.

After signing for milk for a couple hours this morning the doctor finally gave orders to let her eat. She tried to eat but decided that she had an upset tummy instead and threw up a lot. Have you ever seen bile? Gross. Especially when it gets all over your jeans. I earned my second pair of scrubs (the first pair I got from her first hospitalization when she pulled out her IV while sitting on my lap). So, she isn't allowed to try to eat again until two pm. Hopefully that will go better. I know she's hungry, it's been 58 hours since she last ate!

Thanks for leaving a comment, we love to see who is checking in on us :)

Day two

Madeleine is doing much better. She had a rough night and had trouble breathing but was finally able to sleep after about one am. They recently took her off of the pain meds, and she is only on a little sedation now and antibiotics. The surgeon wants her to stay for one more night in PICU because it was such a big surgery. He also doesn't want her to eat anything yet to give her body a chance to futher heal, so that the bowels don't have to start working yet.

No news on the tumor pathology yet.

Update

Surgery lasted over seven hours. The surgeon thought that he got most (he estimated 95%) of the tumor out of the abdomen. He said that it was very challenging because the tumor was in the muscle in the back of the abdomen. During surgery two nerves that go to the legs were accidentally cut, but they were quickly identified and repaired. As a result she will show weakness in her right leg, and the surgeon said that it would take 5 months to completely be back up to normal again as far as having full strength.

Once out of surgery, she was still intubated and under sedation but she kept breathing over the vent and fighting the sedation. They increased the sedation for awhile, but finally gave up and pulled the breathing tube. Because of the increase in sedation Mad was having a hard time remembering to breath when she was falling asleep. For awhile tonight we sat and stared at her chest and counted to five every time she took a breath. If she didn't take a breath within five seconds we blew on her face to get her to take a breath. This lasted for quite awhile until she finally fell asleep and had normal breathing. Hopefully she will stay asleep and be able to normalize everything so that she can breath normally. She's in a lot of pain, but they are managing that with various meds.

She can't eat tonight so I am home for the night to get some much needed sleep. Hopefully she will be able to begin breastfeeding again tomorrow and after tonight I will stay with her at night in the hospital.

Thank you for all of your good thoughts and wishes. She has some recovering to do still but the worst is over. I'll update over the next few days when I can.

Getting Ready

We're all ready for surgery tomorrow. We went to clinic this morning so that they could take some blood to prepare for a possible transfusion during surgery.

Humphrey is going to Danelle's a little later, they offered to dog-sit while we're in the hospital, which is a huge relief for us not to have to worry about him. Humphrey loves going over there to play with their dog, Noah. I have the citronella bark collars all ready because Bassett + half Basset = LOUD.

I don't know if I will be able to post tomorrow. There is no wireless in the hospital and the only place to go for internet is the health library which is only open a few hours a day. I hope to be able to post to at least let you know that the surgery is over and she is alright. I'll try, but it may not be until Thursday.

Please send us all of your prayers and good wishes tomorrow!


Showing off her pre-surgery belly:



Making the kissy-face:




Mad and Humphrey:

We had a great time at the zoo on Sunday. We met up with some good friends and their two adorable kids. I'm kind of sad that they've decided to stop having babies, because they could have populated the world with cuteness. It was wonderful to get out of the house and be around people again.

At the Orangutan enclosure we saw a baby climb up and try to bother its sleeping daddy. Daddy Orangutan reached up and grabbed the baby's hand, held it and went back to sleep. The baby settled down quickly and fell asleep too. Last night after the 3rd or 4th time of getting up with Madeleine, I brought her to bed with us. She was all kinds of fidgety for awhile, and then all of the sudden asleep. I looked over and noticed that Ryan had reached out and held her hand and they were both sound asleep. Just like the Orangutans!

Here is a fun video from a few days ago. Please ignore the messy, messy play space.

Recovered from chemo

I got the lab results back from this week's blood counts. It looks like Mad is all recovered from her latest round of chemotherapy. I think that we'll even be able to go to the zoo this weekend. I can tell that she is feeling better. She isn't as tired.
Also, got the instructions for the surgery. Check-in is at 5:30am. One of the hardest parts of all of these procedures is that she can't eat for six hours before. Mad likes to eat about every two hours (yes, even at night), so this is very difficult for her.

Surgery Scheduled

After speaking with the surgeon this morning, it looks like surgery is scheduled for June 11th. It will be a big surgery, and as high-risk as her previous neurosurgery. She will have an upside-down U shaped incision across her tummy.

The neurosurgeon will also be present for the surgery and he will try to remove some of the tumor that is poking out of the spinal canal. she has one tumor that started in her abdomen and grew into her spinal cord and then fingers of it are sticking out of the other side of the spine. These "fingers" are what the neurosurgeon is going to try to remove. Once the surgery is over she will be recovering in PICU (pediatric intensive care unit), hopefully for only one night, until the breathing tube is removed. It’s estimated that she will be hospitalized for 5-6 days as long as everything goes smoothly.

We are anxious about the surgery, but I know it is going to go well.

Madeleine's Neuroblastoma History: A recap

At four months of age, Madeleine was diagnosed with a stage 3, intermediate risk Neuroblastoma. Neuroblastoma is a form of childhood cancer. I found a statistic that said that 64 out of a million children get this disease. We've always told her that she's special, but she has taken it to a whole new level. Because she was diagnosed at such a young age her prognosis is very good.



She has a solid tumor that started in her abdomen, and grew into her spinal column. We initially became concerned when we noticed progressive weakness in her legs. On February 29, 2008 (the same date as diagnosis), she underwent a high-risk neurosurgery to remove some of the tumor from her spine in order to hopefully regain movement in her legs. During the surgery the surgeon had to remove a nerve root that was too infiltrated with cancer to save. The neurosurgeon did not seem hopeful that movement would return. Luckily he was wrong and she now has full movement of both legs. We are very grateful for the skilled neurosurgeons, Dr. Levy and Dr. Meltzer, that saved our daughter from paralysis. We were hospitalized for 11 days at Children's Hospital in San Diego.


Madeleine has had four courses of chemotherapy. Two courses in-patient and the last two were done on an out-patient clinic. She has done amazingly well and has had very little side effects from the chemo. We are hoping that she is now finished with chemotherapy. She has a Hickman line, which is like an IV that goes into the heart, for her blood draws and chemotherapy. This line will stay in until the doctors are sure that she will not need any more chemo.


Her recent MRI shows that the tumor in her abdomen is shrinking. She has a surgery scheduled for June 11th, to remove the tumor in the abdomen. We meet with the surgeon tomorrow to discuss the surgery and see if he wants to go ahead with the surgery as planned, or if he thinks that she would benefit from a couple more courses of chemo. We are hoping for surgery, as every subsequent round of chemo adds to the possibility of later complications.


She still has some tumor remaining in her spinal cord. The doctors don't know what to do with it yet, as it depends on the pathology of the tumor to tell us whether it is mature, and no longer causing problems, or if it is still immature and growing. It is possible that she will need another neurosurgery at some point, but we are all hoping that it won't come to that.


Madeleine, at seven months, has already been through a lot. She is a tough little girl and she will make it through this.


Thank you to everyone for all of your love and support. We really appreciate it.


Amber

Video just home from hospital: