Mad Madam Madeleine

Cycle #2

noreply@blogger.com (Amber) — Wed, 19 Jun 2013 16:37:00 +0000

It was so nice to have Madeleine at home over the weekend. She was feeling good, better than she's felt in the past 5 weeks. She was able to play games, interact with her sisters, joke around, visit with friends, and even meet and visit with our new neighbors. Her new accessories (broviac line and G-tube) require care and maintenance but I think we've got the hang of it.

Madeleine and I came back to the hospital yesterday for admission for chemo cycle #2. This cycle uses two of the same drugs from the previous cycle and one new one. Vincristine/cyclophosphamide/topotecan. It will take four days, with perhaps a day or two of hydration and then we can hope to be home again.

I spoke with her doctor yesterday and she is thrilled with the results from the first cycle. In two measurements of different parts of the tumor it reduced by 47% (thoracic prevertebral mass), and 62% (retroperitoneal component)! The craniocaudal (that means head to foot, and that is your medical word of the day) measurement has decreased from 16.3 cm to 11.9 cm and from 12.4 cm to 7.3 cm.

Mad had a good visit with a couple of friends yesterday. Chemo started last night and she is really feeling the effects of it today. I'm glad she was able to have such a good time yesterday and that there are no visitors scheduled for today.

Insurance has approved our trip to Denver for the stem cell harvest. It looks as though that may happen over two dates: one for a consultation and one for the actual procedure, which can take 1-3 days. Pretty silly that we will have to fly up there for a consultation, but whatever. The tentative dates are July 3rd and then the harvest on July 8th. If the July 3rd date sticks I'm hoping to be able to stay for some fireworks, I know Mad would love that. We don't have fireworks on the 4th here because of all of the fires and fire restrictions. The social worker was talking about possibly sending all five of us to Denver on the 3rd and making a weekend trip out of it. She is seeing what insurance will pay for as far as flights and lodging. It would be nice to have everyone all together, and it will be great to be able to see friends in that area (Campbell and Gattiker families I'm talking about you!). I guess we'll see what insurance will pay for, and what we decide to do.

Shrinking

noreply@blogger.com (Amber) — Wed, 12 Jun 2013 04:38:00 +0000

Things have gone very well over the last few days. It is so nice to see Madeleine laughing and interacting with other people. Her counts have pretty much recovered and she is off of all medicine except for her blood pressure meds and the nutritional support (TPN) that she gets through her line.

She had a CT scan done yesterday because her doctor wanted to know if the chemo was having any effect on the tumor. I was pretty sure that I did not want to hear the results of the scan. We've had nothing but bad news for nearly a month and I couldn't face more of it. When I asked one of the doctors what the results were this morning he said that he didn't know yet but that he wasn't expecting too much change since it had only been one cycle of chemo and normally they don't even image until after two cycles. He did say that he was very pleased with her clinically - she is walking well (if not far, yet), she is peeing on her own without residual, her appetite is somewhat back, and her counts recovered quickly. I ran into him later in the hallway and he told me that he was very happy with her scan and that it showed that the tumor is shrinking! I don't know how much it is shrinking yet because we don't have the final report with the measurements and all that but he said that it appears that it is coming off the renal arteries, and shrinking in size. Also, the fluid in her lung is less than what it was on the last x-ray. This is great news!!

We just signed the consent for cycles 2 &3 of chemo. These cycles shouldn't be as difficult as the first one was. Once she has recovered from cycle 2 we will go to Denver (pending insurance authorization) for a stem cell harvest. This is a process where they will extract her healthy stem cells from her blood, and then freeze them. The extraction is not painful, and they will most likely use her broviac line. Somewhere down the line she will get an extremely high dose of chemo that will wipe out her bone marrow. The harvested stem cells will then be put back into her so that she can continue to make blood cells and platelets. This type of stem cell transplant is easier to endure since it is using her own stem cells rather than those from a donor.

On Thursday Madeleine will have a surgery to have a G-tube placed. This will allow her to "eat" even when she can't or won't. The current nutritional "food" that she is on cannot be used for more than a few weeks. This will be better anyway since the TPN typically has to run 24 hours (meaning carrying around a pump constantly), and with the G-tube we may be able to only run it at night while she is sleeping. She can still eat normally when she feels like it. So, they are slowly weaning her off of the TPN and we are trying to increase the foods that she eats by mouth. Yesterday she ate 6 sushi (veggie) rolls as well as some other things.

Another awesome thing is that we may be coming home soon! Of course, we have to come back on Monday or Tuesday for cycle #2, but a weekend at home, together, would be amazing.

One of the perks of being a cancer kid (ha) is that Madeleine gets to have a wish granted through the Make a Wish foundation. Originally she discussed wanting to go on a Disney Cruise. However because she is not currently able to travel (the fluid in the lung thing means no air travel - although hopefully that is resolving itself) we spoke with her about doing something locally. Our social worker gave us some possibilities and Madeleine has chosen to have an awesome playhouse built in the backyard complete with trampoline and zip line. Apparently this can be built at any time we just need to pick a date.

It's hard not to feel optimistic when we have received such great news. Everything I said in the last post is still true, and she still has a huge uphill battle to fight to get rid of this thing. It is nice, however, to feel like we are winning the first fight.

With her new wig.

Relapse

noreply@blogger.com (Amber) — Sat, 08 Jun 2013 15:23:00 +0000

I am assuming that everyone that reads this already knows what is happening. I will not pretend that I have some "audience" out there that has been waiting 2.5 years since my last post here for an update.

We had a good run there. I didn't update for years because there was nothing to update. I had the same complaints, worries, and concerns as every other mother out there, and that was nice. It was nice to not have cancer be a part of our everyday lives.

However, here we are again. As of this post Madeleine has been inpatient at UNM for 25 days. Early this year we learned that the tumor was growing. A biopsy told us that it was 99% ganglioneuroma (the benign form of neuroblastoma). We celebrated. Madeleine had to have surgery to remove some of the tumor that was compressing her nerves and causing her pain and weakness. After the surgery we celebrated again, thinking that this was the last surgery, the last hurdle. Six weeks after the surgery things started to go bad. The pain returned, Madeleine had no appetite and was losing weight, and she couldn't walk more than a few feet without crying. An MRI showed that the tumor had been growing aggressively. It was given a label: Relapsed neuroblastoma, stage IV.

There is disease in her knees and in her bone marrow as well as the primary tumor that has grown up her spine and into her chest cavity. The tumor is encasing her renal arteries and aorta causing her blood pressure to be very high (this is now under control with medicine). There is involvement in her left lung, and perhaps her bladder may be somewhat compromised as well. There was also a spot on her pelvis which was surgically removed and biopsied.

Madeleine is now recovering from some high-dose chemotherapy (doxorubicin, vincristine, and cyclophosphamide for those that have asked) - her oncologist went off-protocol and started her on what would normally be cycle #4 of chemo to attack this thing as fast as possible. Her white blood cells are slowly rising.

A few days ago it was discovered that she had fluid in her left lung, and it was drained after she started having some respiratory distress. The fluid is blood and neuroblastoma cells. The tumor has invaded her lung and is causing a bleed. Subsequent chest x-rays show that the fluid continues to accumulate - although possibly not as fast as it did previously. This is currently the most serious and pressing issue. We will speak with the surgeon hopefully this weekend to see if anything can be done surgically.

Madeleine's chances of surviving this thing are not good. Stage IV relapsed neuroblastoma offers a very poor prognosis, coupled with this bleed in her lung is even worse. She has perhaps a 25% percent chance, but that number is pretty nebulous as this is an extremely unique tumor (or so we are told over and over again). This has all happened so fast.

She will not, unfortunately, be leaving the hospital any time soon. If the lung can be stabilized then we will remain inpatient through the next round of chemo which is coming up fast. After that the plan is to get her to Denver for a stem cell harvest. They don't do this at UNM. All of this also sort of depends on the results of an MRI that I believe she will have next week. If the tumor has continued to grow in spite of the intense chemo than it may be best to stop treatment altogether.

For now, Madeleine's appetite has returned and she no longer has any nausea. She is smiling and joking and sort of back to her old self. For today, we will hang on to this. We can only take this thing one day at a time.

New Digs

noreply@blogger.com (Amber) — Sat, 22 Jan 2011 02:07:00 +0000

We are no longer Californians. And that feels strange.

But, I really like it here.

We moved on New Years Eve. I flew with the girls, and then rented a car to head up the hill to Los Alamos. At the time, New Mexico had just experienced a huge storm, with way below freezing temperatures. When we got to the hotel it was somewhere around nine degrees. Nine! Coming from San Diego, where it's always around 70, this was a huge shock.

Ryan definitely had the most difficult journey. He drove, with Humphrey dog, and it took about 18 hours because of road closures due to the storm. He had been sick before the trip, but thought that he was on the mend and well enough to drive. Somehow he came down with bronchitis during the trip and barely made it to the hotel that night.

When we first arrived:
Madeleine was beyond excited to go out and play in the nine-degree weather. That lasted about two minutes.
It took a long time for our furniture to arrive, a week, so we camped out in the hotel for a few nights, and then eventually moved into our new house. Check out these icicles on the kitchen window!

Ryan was off work for a couple of weeks, so we were able to take some day-trips to Taos, Santa Fe, and Bandelier National Monument.

On the way to Taos.

This picture doesn't do this justice, but this is Valles Caldera, a volcanic crater. It really is stunning. They have cross country skiing, snowshoeing, hunting, and a bunch of other things there. There is even a half-marathon at over 8,000 feet. I'd like to consider it, but just don't think I'll be able to train for it by June.

There are our neighborhood resident deer. We see them every couple of days, just walking down the middle of the street in front of our house, or jumping the fence in our neighbor's backyard.

So, we're settling in. Haven't made any friends yet, but have started to scope out the places with other moms and kids. We're looking at a preschool for Madeleine next week, as well as dance classes in Santa Fe. She's obsessed with ballet lately.

Laurel loves her jumpy!

Ballerina girl.

Long time

noreply@blogger.com (Amber) — Sun, 05 Dec 2010 18:21:00 +0000

I can't believe that it has been about six months since my last post! The fact is, I'm not really sure what to do with this blog. Now that Madeleine's tumor is stable there isn't much to share in terms of medical updates. We recently saw the neuroblastoma specialists in LA, and she was happy with Mad's recent scans and doesn't see any need for further biopsy at this time. She still has to be monitored, as the tumor is still active.

We also have to watch out for secondary effects from the chemo that she received, such as secondary cancer, problems with infertility, etc. My biggest fear is that Madeleine won't be able to have children. I worry about this all the time. It was very reassuring to hear that with the amount of chemo that she had, her doctors don't think that infertility will be an issue. There is still a likelihood that she could have some sort of secondary problem, but from what we've been told she may just beat this thing without any issues...except for a couple decent scars, and a weakened right leg...but I'll take that.

In OTHER life news however, there is a fair amount going on. In August Madeleine became a big sister:She loves her little sister, Laurel, and is surprisingly a big help to me.

Madeleine has been enjoying her dance class:

And logging in some beach and friend time:

Shortly after Christmas we are moving to New Mexico! Ryan got a good job at the National Lab in Los Alamos, and we are looking forward to getting out of fast-paced Southern California. We will definitely miss our San Diego friends, but I think this will be a good move.

Preschool

noreply@blogger.com (Amber) — Tue, 06 Jul 2010 16:44:00 +0000

I just dropped off Madeleine for her first day of preschool. She is so excited. She wasn't worried at all, and was ready for me to leave the second we got there :)

In the picture above you can sort of see her new AFO brace on her right leg. She's had it for a couple of weeks and is still wearing it, so I guess that's a good sign. The brace is to help straighten out her foot so that she doesn't roll onto the inside of her foot so much. We've noticed a lot of improvement in her walking, jumping, and running even before we got the brace, so she's continuing to make accommodations for that weaker right leg.

And now I have three glorious hours to myself!

Medical update

noreply@blogger.com (Amber) — Thu, 17 Jun 2010 17:11:00 +0000

Madeleine's recent MRI shows that the tumor is stable and there hasn't been any growth for the last six months! This is great news. Her VMA/HVA levels continue to be high, which means the tumor is still active (but not growing). We have been told that these levels can remain high for years, so while we'd like to see them dropping, we aren't very concerned about this.

The stable tumor means that we now get to do MRIs every four months (instead of every three) and urine tests every two months (instead of every month).

Madeleine's cancer diagnosis also means that we were able to secure free cord blood banking for baby #2 - a huge savings for us, not to mention the potential life-saving ability of cord blood. I am 31 weeks and feeling great!

Recent pictures

noreply@blogger.com (Amber) — Thu, 17 Jun 2010 16:26:00 +0000

Celebration of Champions

noreply@blogger.com (Amber) — Sun, 16 May 2010 16:22:00 +0000

Yesterday was the annual Celebration of Champions that a fundraising group for the oncology department of Children's Hospital puts on for cancer kids and their families. We went last year, and it was, and continues to be an amazing event. What always astounds me is that they get sponsors to donate $1500, or more, per child that participates in the relay. There are a whole lot of children that participate, and the event grows every year. Each child gets his/her own personal sponsor family and local celebrity. The sponsors and celebrity run a relay race with the child and their family. It really is moving to see and hear everyone on the sidelines clapping and cheering. Madeleine saw some cheerleaders this year and almost stopped running (well, she was really walking) to check them out.

This year, we somehow lucked out and got TWO celebrities! The Padres' Chase Headley and Will Venable were our celebrities this year. I really don't know anything about baseball but it was fun to meet them. Here are some pictures from our day.

Our sponsors were the Deutsch family - a group of the friendliest, nicest people ever.

More sponsor family

Padres player Chase Headley and his wife.

Padres player Will Venable and his girlfriend.

The real celebrities (for Madeleine anyway)

Madeleine has a strange fascination with owls. This owl was a big hit.

Madeleine and her buddy, Cade. This year Cade (also a neuroblastoma survivor) got to be in the "suvivorship" group at the Celebration - a great place to be!

Face painting - she's a kitty cat.

After the Celebration we went home to rest for a couple of hours and then headed back downtown for the sold-out Padres vs. Dodgers baseball game. It was fun to see our celebrities playing and Madeleine and Cade had a wonderful time running around in the grass. It was a true day of celebration.

Best Friends

noreply@blogger.com (Amber) — Wed, 10 Mar 2010 17:30:00 +0000

Madeleine and Sophia

Something to Share

noreply@blogger.com (Amber) — Fri, 05 Feb 2010 00:02:00 +0000

Baby #2 is due mid-August!

Scan results

noreply@blogger.com (Amber) — Thu, 04 Feb 2010 00:47:00 +0000

A couple weeks ago Madeleine had an MIBG scan that shows how much of the tumor is still active. She also had her usual urine test. The doctor finally called today to discuss those results. The scan shows that she still has active tumor. Her VMA/HVA numbers are both up a bit from where they have been. VMA is at 32, and was in the 25-31 range for the last four months. HVA is at 41, the highest it's been since April. All of that means that there is still immature tumor, and that it's probably growing a little (as was seen in December's MRI). The doctor is consulting with the specialist in L.A. that we saw over a year ago, and the neurosurgeon. Thankfully no one thinks that chemo is a good idea at this time as maturing tumor does not respond well to chemo. As long as Madeleine isn't having any symptoms (tumor interfering with her ability to walk and move her leg - which so far isn't a problem), surgery to remove it doesn't really make sense right now either.

Except that the tumor may be interfering with her ability to know when to use the bathroom. I know that she is still young, or right about average, for potty training, but I just feel like something isn't right. She really wants to use the potty, but so far hasn't been able to. After explaining my concerns to her doctor we now have an appointment in a couple weeks to see a neuro-oncologist. He will be able to tell if she has sensation in that area or not. If not, surgery might be a good option, because its not like the tumor is ever going to go away, even after it matures. If it's in the way, it will remain in the way until it is removed.

So, I feel disappointed, and frustrated, and a little angry, that we seem to be in the exact same place that we were last year. The tumor is still in the process of maturing (hopefully), and may or may not be causing problems. I know that things could be so much worse. The tumor has not migrated anywhere else, and we are not currently facing chemo, radiation, or surgery. We'll see what the neuro-oncologist and neurosurgeon think, and go from there.

Christmas

noreply@blogger.com (Amber) — Thu, 31 Dec 2009 18:17:00 +0000

We had a wonderful Christmas at Grandma and Grandpa's house. We also got to visit with some friends that we don't have a chance to see very often, and that was great too. Madeleine got more toys than any child needs ever, but she's happy about it.

Cookie decorating is really fun.

Santa showed up on Christmas Eve for a visit! He looks awfully relaxed here for a guy with such a busy night-before-Christmas schedule, doesn't he?

Christmas morning. The dollhouse was her big Santa gift.

Madeleine's paparazzi

Medically, there is news I haven't really wanted to share, because I'm choosing to believe that it isn't true, until we have more conclusive data. Mad's MRI in early December showed that the tumor may be growing. It's been stable for a number of months, but this measurement showed that it was bigger on all measurements. The measurement could be wrong. Her markers remain about the same, so thankfully they also are not showing growth. Instead of retesting in four months, as was the plan had this scan been stable, she will be rescanned in two months, and she will also have an MIBG (radioactive nuclear medicine scan that shows how much of the tumor is still active) in a couple of months as well. Neither of these scans has been scheduled yet, but I'm holding my breath until then...

Santa

noreply@blogger.com (Amber) — Tue, 08 Dec 2009 23:00:00 +0000

Shabby Chic

noreply@blogger.com (Amber) — Sat, 05 Dec 2009 00:22:00 +0000

I finally got around to taking pictures of Madeleine's room:

I love that the headboard and the frames completely match, that was unplanned. I repainted the dresser to match the headboard. It took a whole lot of sanding and many coats of paint because it was originally stained to match her crib, which was a dark cherrywood color. I'd like to get a small night table too, and I'm occasionally scouring thrift stores for that, but haven't found the right one yet. I didn't show you the blank, white wall that faces the bed. I don't know what to do with it. I'd like to put up some children's artwork, but don't want to spend any money on that project.

Birthday pictures

noreply@blogger.com (Amber) — Wed, 11 Nov 2009 18:32:00 +0000

My big girl turned two at the end of October. Her birthday party was on Halloween, so all of her friends came dressed up. Madeleine, who insisted on wearing her turtle costume every day for the entire month of October, only wore her costume for about five minutes the day of Halloween. Of course!

The party was luau themed, so of course we had sand and seashells.

Madeleine supervises the party set-up.

Sophia Dragon

The dragon chooses an India Pale Ale, but is carded by the bartender.

That's one stuck pineapple

Amanda Mouse arrived via railway

Afraid of revealing their super powers, the Buzz Lightyears studiously avoid one another.

Humphrey sniffs out the witch (Ashlynn)

Tucker Lightyear wonders just how to get those wings to work

Cade Lightyear - To Infinity and Beyond!

Friends playing in the sand

Enjoying rainbow birthday cake

The beautiful and talented Auntie Karen (all of these pictures are taken by her, or at least by her camera).

Dressed up for trick or treating. Humphrey had to suffer wearing his bee costume for another year.

We had a great weekend filled with friends and family. My favorite part of the party was when Madeleine took a break from opening presents to look up and see everyone watching her. She said, "look at all the friends!"

No news is good news

noreply@blogger.com (Amber) — Wed, 21 Oct 2009 21:12:00 +0000

I'm sorry that I haven't posted anything in so long. I'm feeling guilty about abandoning Mad Madam Madeleine, but I really don't have much to say. I never intended to be a "blogger," nor do I now consider myself in that category. If I have a picture, video, or story to share, I will continue to share it here, but I am not going to make myself post things on any kind of a schedule. Of course I will continue to share any medical updates.

Mad's latest VMA/HVA levels are a wee bit higher than they were last month, but our doctor assured me that this is still in the standard deviation for the test, and they are still considering these numbers stable. Standard deviation or not, I hate to see any increase in numbers. I'm hoping they will be back down to previous levels next month. HVA is 45.3 (up from 37.2) and VMA is 31.9 (up from 29.2) for those of you playing along at home. To be cancer free HVA should be no higher than 23 and VMA should be no higher than 18 based on Madeleine's age and weight. When she was first diagnosed, her HVA was 88, and VMA was 133. Wowza!

My friend Andrea showed me how to put pigtails in Mad's hair.

She sleeps like this at every nap and bedtime. Isn't that weird? Ryan sleeps like that too.

You may notice from the picture above that Mad is now in a big girl bed. These past two weeks I've been working on painting and decorating her room. I'm thrilled with the way it's turning out. I'll take better pictures of the whole room soon.

Stating the Obvious

noreply@blogger.com (Amber) — Sat, 03 Oct 2009 21:40:00 +0000

Things have been really good lately. Madeleine is happy, our days are busy, and we are leading a normal life with very few doctor and clinic visits. Mad's physical therapy went so well that she completed her final session this week. Her therapist is positive that now that she is bending her knee, the only thing left is to continue to build strength in her leg. And we can do that at home. She is continuing to love her gymnastics class (especially since her buddy Cade goes now too!), and we have started swim lessons again as well.

Her latest VMA/HVA markers are pretty stable, not going up, but not going down either. The tumor is stable, not growing. She won't be deemed "cancer free" until her markers are back in the normal range for her age. We know that this is just a matter of time until this happens. We are continuing with monthly clinic appointments to test the markers, and MRIs to check the tumor every three months.

So, things are going well, things are moving in a positive direction. After the horribleness and uncertainty of last year, this year has been positively wonderful.

Then why do I feel so bitter sometimes? I can't really explain it. September - which is Childhood Cancer awareness month, made me angry. This happened to me last year too. The only company (that I know of) that does anything in support of Childhood Cancer awareness and funding is Chili's. Meanwhile, there are pink ribbons on my grocery store yogurt lids and mushrooms halfway through September. Mushrooms. I'm not trying to take anything away from breast cancer awareness, I think it's fabulous that so many companies and organizations are supporting and donating to such a worthy cause, but I'm a little jealous. Where is the support for childhood cancer? These are our children, and two classrooms-full of children are diagnosed every school day.

On a more personal level I've noticed that I feel anxious every time a friend's baby is at or near the four-month mark (when Madeleine was diagnosed). I can't figure it out. I'm not worried about their children, I just feel anxious. It makes me want to tell them all about Madeleine being diagnosed and what that time was like. We were at a wedding recently and a college friend was talking about how his four-month old doesn't sleep. I sympathized with him because we had the same problem for many, many months, but in my head I really wanted to say, "...and four months is when Mad was diagnosed, so...[shrug]" I even thought of the gesture that I would use to convey this message. Am I just being selfish because I want everyone to keep remembering? Am I looking for sympathy? I don't know. I don't have a better way of describing this. Also, we would like to have another child eventually, and the other night thinking about that hypothetical child as an infant brought me to tears. Not because having a newborn would be difficult (it would be), but because that baby would eventually be four months old and I would have to deal with that. Is this post traumatic stress disorder?

All of that said, I'm pretty happy. The moments mentioned above are just moments. And they aren't consuming my life, or making me crazy. I debated about posting this because I don't like to share too much about how I feel, and because I don't want you all to think that I'm crazy... maybe just a little damaged :)

I'll leave you with recent pictures to lighten the mood in here:

Early birthday present from Grandma and Grandpa!

Madeleine and her friend, Sophia, at the zoo.

Trying out the Halloween costume

Look at the progress she's made!

noreply@blogger.com (Amber) — Mon, 14 Sep 2009 00:00:00 +0000

Going through some of our old videos this afternoon I came across this from March. This is what Madeleine's walk used to look like:

And now:

What a difference six months and a lot of physical therapy make!

September: Childhood Cancer Awareness Month

noreply@blogger.com (Amber) — Sat, 05 Sep 2009 16:13:00 +0000

You may have to click on the picture to read the text.

Once again Chili's is donating 100% of their profits on Monday, September 28th to St. Jude hospital. No child at St. Jude is ever denied treatment because of their family's inability to pay. Also, all through September you can dine at Chili's, color a pepper, and add a donation of your choice onto your bill. We ate at Chili's last night, and definitely plan on going on the 28th!

Pairs

noreply@blogger.com (Amber) — Wed, 02 Sep 2009 19:55:00 +0000

This is my week:

I am watching my friend's daughter every day this week (and three days a week most weeks). This is an arrangement that I'm very happy with because it gives the girls a friend to play with, and it's also good practice for things like sharing and taking turns. Mad is having a hard time with these concepts, but I hope with practice that she'll get it. We're also dog sitting our favorite Basset Hound (don't tell Humphrey!) this week. So that makes two kids and two dogs. I like to have things in matched pairs. Today was my first outing with all four of them, and it was challenging. I have a new respect for moms and dads of multiple children!

And dog parents of more than one dog!

MRI results

noreply@blogger.com (Amber) — Wed, 02 Sep 2009 02:14:00 +0000

The results from last week's MRI show that the tumor is stable, and has not grown any since the last MRI - This is great news!!
The hospital is now classifying Madeleine as "off therapy." This doesn't really mean anything different for us, except that we are closer and closer to "cancer survivor," and "cancer-free" status. It's a great place to be.

The Off Therapy Transition Coordinator that I spoke with reminded me that there are a lot of college scholarships for kids that went through cancer treatment. So, we have that to look forward to. This isn't the way that I would go about securing a college scholarship, but if it works out that way I won't complain. This, coupled with the fact that Madeleine can now count to 14 means that she is Harvard bound!

Finally

noreply@blogger.com (Amber) — Fri, 28 Aug 2009 05:29:00 +0000

Sorry for the long blogging hiatus. Although you wouldn't know it from the soaring temperatures, summer is drawing to a close and I've started to get busy with classes for my master's degree, my online job, and various other responsibilities and commitments.

Madeleine had an MRI on Wednesday and we are waiting to hear the results. We've also been authorized for six more physical therapy visits, and Mad has been loving her "play toys with Brynn" (physical therapist) time. During her last PT session she did an amazing job of lifting her right leg and bending her knee. It was the most improvement that I've ever seen.

Sunning the bits in our garden.

Making dirt angels is her new favorite thing

Local park/playground

Enjoying the first tomato from the garden. This kid LOVES tomatoes!

Mad's new friend, Sophia

Race Run

noreply@blogger.com (Amber) — Sun, 16 Aug 2009 20:40:00 +0000

I'm done!

The race went pretty well, and I had a good time. Mostly I'm glad to be done.

Woke up at 4:14am this morning (one minute before my alarm was set to go off, I think that's my super power because that happens all the time), had a cup of coffee and piece of toast. I left in plenty of time to make it to the parking area (San Diego Zoo parking lot), especially for 5 am on a Sunday. However, I didn't take into account that 8,000 other cars would also be trying to merge onto the 5 from the 163. I was a little worried about missing the last shuttle bus to the start line, but looking at the line of cars behind me I knew that there was no way that they would not pick all of us up. After finally making it to the parking, and waiting in a long line, I boarded a bus which took us to the start line at Cabrillo National Monument. I really wished I had a camera because when the bus pulled up to the drop off area the massive sea of people milling about the parking lot was really a sight to see.

My next immediate concern was finding a bathroom. I think I over-hydrated a little bit this morning, and I'm sure the coffee didn't help. The lines for the bathroom were about thirty people deep, and by this time the race start time was about six minutes away. Needless to say, the race started while I was in line, but this is okay because my personal time didn't start until I stepped over the start line (timing RFID tag on my shoe). I had a lot of time to chat with the woman behind me in line. She asked about my shirt and I told her a little about CureSearch, and how I had raised funds to support childhood cancer research. She told me that she was a childhood cancer survivor. Her parents had enrolled her in an experimental chemotherapy trial, and because of this she was the only child from her ward that survived. I felt like this was some sort of sign; this woman's story inspired me and furthered my belief that I was doing the right thing. So many kids lives are saved because of experimental trials that pave the way for future reasearch which then results in more kids' lives being saved. I was hoping to see her again, but I didn't. I think she was there just when I needed her.

Running a race with 8,000 of your closest friends is a lot different than doing a long training run with no one around. On training runs I can zone out and think about things besides running, and how my body is feeling. This helps the time pass. Constantly trying to get around people, slowing down because of slower runners, finding holes to slip into, it's an exhausting mental workout. By the end of the race I was physically tired, but being mentally tired had just as much of an impact. I did pretty well until the last couple of miles, which were uphill. A gradual uphill, but still, it was hard. My friend Doug met me at some point near the end of the hill and ran with me until the hill was over. That really helped motivate me to keep going. I had been running most of the hill, but was taking occasional walk breaks because I was just so tired. At the top of the hill I saw Ryan and Madeleine, and Danelle and her girls, Kassidy and Audrey. It really did make me feel good to see them cheering me on. And then I ran into Balboa Park and finished! I complete the race in two hours and seventeen minutes, which is right around the time that I was hoping for.

So glad to be done!

Ready, Go!

noreply@blogger.com (Amber) — Sun, 16 Aug 2009 02:37:00 +0000

Tomorrow is the big race!

I added the last two names to the race shirt, and this is what it looks like:

And this is what it looks like in action! (sort of):

I'm excited about tomorrow!