Going public

I saw this post today and I found myself nodding my head in agreement at nearly all of it.  Rest assured, I don't get upset or angry when friends say these things.  They really do seem like the right things to say, and I know that the intention is always good.  The "You're so strong" comment does tend to bother me, although I know it comes from a really good place.  When someone says that, I feel that I don't have any other option than to be strong.  Sometimes I'm not strong.  And sometimes I'm sick of being strong.  I know that I'm not doing anything that any other parent wouldn't do.  When something like this happens, when your child is diagnosed with a life-threatening disease, you step up.  You have to.  At any rate,  I don't take offense to any of those comments because I know that it is all said with love, and I know that people don't know what to say.  If the tables were turned, I wouldn't either.

We have, however, had our fair share of stranger interactions because of Madeleine's cancer.  From the little old ladies (ALWAYS the little old ladies), to the servers at restaurants, to people on planes, in airports, wherever.  I'm pleased that there have been, by far, more positive interactions than negative.  In San Francisco someone approached us on the street to ask what kind of cancer Madeleine has.  I inwardly cringed because these conversations with strangers often leave me exhausted.  I don't want to explain what it is and how it got there, and what we are doing to get rid of it.  I don't want to see that look of pity, and then hear the inevitable, "I'm praying for her."*  This woman, however, smiled and introduced herself as a childhood cancer survivor.  This has happened to us a few times now, and I always appreciate it.

I also appreciate the smiles from other parents.  It's obvious that Madeleine has cancer, and they know it.  I loved the guy in the Los Angeles Airport that came up to Mad and told her she was beautiful and asked her if she was a movie star.  I teared up when someone gave her free ice cream and told her that he was a survivor too.  A couple of times someone has paid for our meal at a restaurant - one time they introduced themselves, and one time it was completely anonymous.

When we were in Sea World, a man in uniform (Air Force, I think) came up to her and said that he had been to war in Afghanistan and that she was far braver than him.  That's all he said, and that's all he needed to say.  Ryan and I both appreciated this so much.  It's these little moments of compassion that truly make all the difference to us.

I started writing this with the thought that I would describe some of the less than ideal encounters that we've had, but I'm happy with the direction that it took instead, so I will leave it at this:

DON'T ask, "What's wrong with her." (ESPECIALLY in front of her).
DON'T ask, "Will she be OK?" (believe it or not, this happened, also in front of her).
DO smile.
DON'T tell me that, "God has a plan."  In what f-ed up world is giving a kid cancer anyone's plan?
DO tell her she's brave, or smart, or beautiful.
DON'T stare.



*To be honest, prayer is not really my thing, personally, but I certainly don't have a problem with people praying for Madeleine.  In fact, I appreciate it.  I know that people feel helpless, and this is one way that they feel they can help.

Home again, home again.

After nearly a month of travel, we are finally home again.  The seasons changed while we were gone, and it is very much Fall here now with the changing leaves and colder temperatures.

While we were in Coarsegold (where my parents live), we were able to visit Meme, the girls' great grandmother.  She is 97 and going strong!

 They had set up a little party for us with balloons and cupcakes.

 
After living with her grandparents for a week, Madeleine and I drove back to San Francisco for her stem cell infusion.  This was a very mini stem cell transplant.  They used her cells that were collected in Denver a couple of months ago and gave some back to her to help recover her counts.  Like chemo, the radiation that she received lowers her counts too, however, it's not a predictable three-week cycle the way that chemo is.  Her counts are low and will remain that way for about another week.  By then the stem cells should be growing into blood cells and she will see some recovery.  Her counts are low, but not too low for school or travel. 

 

These are the stem cells going in.  You can see them in the red line there.  The color is red because some red blood cells are present in the stem cell collection also.

While in the hospital we got to explore some of the activities and programs that they have for kids at UCSF.  We started in the school room, which is staffed by credentialed teachers.  Madeleine hung out there for awhile and learned how to build a Lego thing with a conveyer belt.  An engineer happened to be volunteering that day, so we were lucky to have met him and to participate in that.  Next we checked out the technology room where a different set of volunteers were teaching the kids about stop motion claymation (like Wallace and Gromit).  The story had already been written, but Madeleine got to move the clay objects one tiny movement at a time while the scene was filmed.

 

It's hard to see, but here she is working in front of the green screen.  Later they will put the movie together and email us the link to it.

After that we spent some time in the play room.  It's nice that they have so much for kids to do at UCSF.  Many of the kids on the oncology floor can be there for months sometimes.  Programs like these make living there more bearable.  

 

We were told to expect the stem cell infusion to last all day, but that we would be able to leave the hospital that night.  Of course, this did not happen and we ended up having to spend the night and almost all of the next day as well.  They test Madeleine's urine to make sure she isn't having an allergic reaction to the cells.  This is pretty rare since it's her own cells, but she could possibly have a reaction to the substance that they use to freeze the cells, or it is also possible (but rare), that some bacteria could have been introduced during the handling and freezing process.  The whole time we were there we were waiting for her urine to be clear of red blood cells.  I guess if there is a problem the first sign would be blood in her urine.  It kept coming back from the lab with smaller and smaller amounts of blood, but there was still some.  This was extremely frustrating.  The doctors finally let us go even though it was still showing a very small amount.  Her urine was retested Monday in clinic in Albuquerque and it is still showing some red blood cells.  So, I don't know what is going on with that.  They will retest again next week and see if it is a problem, or not.  This could have nothing to do with the stem cells, and be something else entirely.  It may not be a problem at all, I'm not sure.  

We  made it back to my parents' in Coarsegold late that night.  The next morning was a flurry of packing to get on our plane back to Albuquerque.  We left a lot of stuff there, but there is no way I could have carried any more bags - I was already traveling by myself with three small children!  We all survived the flights  (even the people around us.  On one of the flights Madeleine sat by herself next to a man that happened to have triplets - thank goodness he was used to kids) and made it home with only one small melt down from Laurel.

Now we are visiting Albuquerque once a week for labs and an exam.  The home health nurse is also coming to the house once a week for labs as well.  Once her counts start to rise I think we will only have labs once a week.  So, for now, all the way to the end of October, we get to be home!  At the end of October she will repeat all of the scans and the tests that were done before the MIBG Therapy to see if it worked.  If it is successful she will do it again in the beginning of November.  That is as far as I know.  We have heard a lot of talk about a full stem cell transplant being the next step, but no decisions have been made about that yet.

 That's Laurel, climbing everything in sight!

Released

 

Madeleine was released from the hospital yesterday.  She is still a bit radioactive, but not too much.  She got pretty bored during isolation, got sick of t.v., and had to resort to math worksheets.  At one point she also colored with marker all over her body and all over her bed.  Fun times!

 

 

They took a quick MIBG scan before discharge to see that the medicine went to the right places.  The tumors all showed good uptake of the radioactvity, so Dr. Matthay thinks that she will have good results from this treatment.  They won't do scans again for 6 weeks, so we really won't know for sure until then.  Meanwhile, we are staying at my parents until Mad gets her stem cell infusion next Friday.  Laurel and Claire are here, so it has been nice being all together for the time being.  Ryan will fly home to New Mexico on Sunday, and then the girls and I will fly back in a little over a week.

The blood pressure medication that she was on has been discontinued (yay!) because her pressures have been good.  She is currently on potassium iodine to help protect the thyroid from the radiation, and she has six more days of vorinostat, which is a chemo drug that she takes by mouth.  Vorinostat helps the MIBG go to the right places, and it may kill some tumor cells as well.  She is having some nausea, but other than that she is feeling great!

Make A Wish Trip, Day 3

After two full days of Disney's Magic Kingdom we decided to change it up a bit and hit Universal Studios.  First, however, we had to take care of some business at GKTW Village.

The ceiling of the castle in the village is covered in stars from all of the children that have visited the village. There are around 200,000 stars.  These pictures don't do it justice, but it is moving to look up and see so many stars. 

Every star represents a child that has come, and every star also represents a wish that a special child has made.  They have this whole wish fairy thing where she takes the star and then looks for a good place to put it.  After making her wish a "star passport" was delivered to our villa the next day with the location of Madeleine's star in the castle.  We went back to look for it.

If you can make this picture larger you can see a red laser point on the second circle up from the bottom, in the middle.  That is where Madeleine's star is.  Alumni families can come back to Give Kids the World to visit for the day and to find their child's star.  It's special that a little piece of her will always be there.

Inside the castle we were also able to visit the pillow fairy who gave us a pillow for each of the kids, and play with the wishing well that makes a different sound every time someone throws in a penny (even the pennies were provided!).  It burped at me.

The reigning queens

 Universal has two parks, Islands of Adventure and Universal Studios.  We first headed to Islands of Adventure.  There really wasn't too much for little kids here.  They did have a fun Dr. Suess land that we spent a little time in, but then we pretty much walked through the rest of it as it was all geared towards older kids and adults.  We did see the Harry Potter world and definitely would have spent some more time there if the kids weren't with us.  I was really impressed with what I saw of it (and the Butter Beer, so good).  After a couple of hours we walked over the Universal Studios side.  There were a few more things for kids, and some characters to meet, but again, not the best place for little kids.  If we were doing this trip again I would skip Universal altogether.

 Meeting Shrek!  At Universal Madeleine's special card allowed us to go the the front of character meet and greet lines as well as getting a front of the line pass on the rides.

We did find a fun playground to play on for a bit.

I think Scooby Doo was taking her away.  They had a lot of fun with him. 

Laurel loved him too!

All in all, a really fun day.

MIBG Therapy

The MIBG infusion started today.  The drug was infused via IV, using her broviac line over about an hour and a half.  There were about six doctors milling about during the process.  A radiation physicist, visiting nuclear medicine guy from Canada, oncologists, etc.  This treatment is relatively new.  They have been doing it for awhile, but it's still a phase one (late phase one, which is good to know) trial.  By comparison administering chemo is pretty routine.  Once the MIBG started running we all had to leave the room and Ryan and I were given our radiation safety education.  Ryan has had a lot of radiation safety training, so none of this was too exciting for him, but it is all new to me.

Madeleine is feeling okay.  She had a touch of nausea a little earlier, but it seems that was quickly controlled with some anti-nausea meds.  They really don't want her throwing up because the radioactivity is released through all bodily secretions (urine, tears, sweat, vomit, etc.), and cleaning up any of that is not a whole lot of fun.  Her catheter that was placed yesterday was hooked up to a pump that runs directly into a constantly flushing toilet.

We have to suit up to enter the room: gown, booties, and gloves.  The less time spent on her side of the lead wall, the better.  It's much better, if possible, to hand things over the lead wall.  We also have to wear a monitor every time we go in the room, and then write down the starting and ending number after exiting.  The radiation people add up these numbers and let us know when we've reached our limit for the day.  The nurses are exposed to radiation all the time, so they get less time in the room than we do.  After exiting her room we have to use a Geiger counter to see if anything is contaminated.  It's a terribly interesting process, it it wasn't for the fact that it's my daughter on the other side of the lead wall.

So far Madeleine has been handling the isolation part of this very well.  And technically she's not very isolated.  We can hear and see her (through the mirror), and she's really not all that far away.  She has a lot of things to keep her occupied - movies, coloring and art things, some toys, and my old Kindle Fire that was given to her for this purpose loaded with shows, music, and apps.  Now we just need to get through the next few days.  Every day the radiation levels will be measured, and every day we will be able to be in the room more and more.

San Francisco

I just wanted to write a quick note to let everyone know that we have made it to San Francisco.  We had some fun at the beach when we first arrived.

This is Laurel in her natural habitat.  She really is a "free range" kid.  She thinks nothing of doing somersaults on the sand at the beach.  Why not?  She is not so easy to control in the middle of San Francisco because her natural inclination is to do wacky things at all times.

My parents met us here and then took Laurel and Claire home with them the next day so that Ryan and I can focus on Madeleine during her MIBG treatment.

She was admitted to the hospital today and had a Foley catheter placed.  The Foley is because the radioactivity will be emitted through her urine, so they want to get it out of her bladder as soon as possible.  After three days she may be able to have the catheter removed.  Tomorrow the MIBG infusion actually starts and we will have very limited access to Madeleine for a few days.

This is what the room looks like:

 It looks pretty much like a regular hospital room, but a small one.  The floors are covered in plastic, as well as all the light switches, tables, etc.  That little wall on the right is a lead shield that is placed between the bed and the door.

This is more of the lead shield.  That little room outside of the door with the chair is where I am sitting now.  That is where we have to sleep.  It's pretty awkward because it's pretty much in the hallway, and it's between Madeleine's room and another patient's room.  I'm not expecting to actually sleep much.  Luckily we are trading off nights.  Tomorrow morning Ryan will come and relieve me and I'll go get a nap (hopefully) at the Family House, where we are staying.

 This is the view from the room.  Pretty nice!

I will post more tomorrow night after the infusion.

Make-A-Wish trip: Day 2 and 3

The second day of our trip was our first full day there so we were all excited to hit the parks.  As part of our trip we were given three day park-hopper passes to Disney (includes Magic Kingdom, Animal Kingdom, Disney Hollywood Studios and Epcot), two day park hopper tickets to Universal Studios, and one day at Sea World.  They also had free tickets available to Legoland and a whole bunch of other parks, but we just stuck with the main ones.

After getting breakfast in the Village we headed to The Magic Kingdom.
As a Wish kid, Madeleine had a special guest assistance card that allowed her, and the whole family, to use the fast pass entrance to all the rides, bypassing the majority of the line.  I don't think we waited more than five minutes for any ride.  At Universal Studios and Sea World, her Wish kid status allowed her to be escorted to the very front of every line.  This really made the parks enjoyable.  Even though they were crowded, it didn't really matter because we still got to go on as many rides as we wanted.

We stopped for lunch somewhere in The Magic Kingdom, and the employees there gave her a "magic moment."  They made a big deal out of her, and brought her some Princess Ariel goodies.  It was a really nice surprise.

We decided to go back to GKTW that evening for dinner.  It happened to be "Christmas" that night, and included a visit with Santa, gifts for all three kids, a parade, and some crafts and dancing in the main area of the village.

 

We happened to come across some Village characters that were wandering around.  Laurel was really enamored with Buttons the bear.

 The whole family had to get a picture once Mayor Clayton and his wife (the bunnies) joined in!

It snowed that night.  Not real snow, of course, but the kids still thought it was amazing.

That night, once the kids were asleep, I was super excited to find an opening at Cinderella's Round Table.  This restaurant typically  fills up as soon as reservations open up - 180 days ahead of time!  I had looked around a bit before we left on our trip but everything was booked up.  I happened to look again and saw that there was one opening for 8:20am for the next day.  So, we got up early and headed into the park again, getting there before they were even open.  This restaurant is inside the castle, which is kind of cool.  We took some pictures with Cinderella (I'll have to post these later), and then headed upstairs for breakfast.  The food was okay, but the main draw were the princesses.  Every few minutes a new princess came out and made her way around the restaurant, stopping at every table for photos.  It was fun and the girls were happy to meet all of the princesses.

After breakfast we did some more rides and stopped to meet some fairies.

We headed back to GKTW to rest a bit in the afternoon.  On our way out we stopped to check out the Wish Lounge.  This is a special room in The Magic Kingdom just for Wish kids!  It was air conditioned and was a nice place to sit and hang out for a little while.  Have I mentioned how hot it was  in Orlando?  So hot and humid. 

Later that evening we returned to Magic Kingdom.  We almost didn't go back because everyone was pretty tired, but I'm so glad that we did, because this was truly the best day of our trip.  We started with princesses and ended with a special makeover for Madeleine.  She had been dying to go into the Bibbidi Bobbidi Boo salon in the castle.  I didn't really know anything about it, so we stopped in to find out about it.  I was told that they were reservations only and that there hadn't been any cancellations.  We were about to leave when the hostess noticed Madeleine and asked if she was a Wish kid.  They said that they could get her in since she was a Wish kid.  They then went over packages with me and I chose the hair and makeup one (the cheapest one, it got expensive fast after that!).  Since she doesn't have any hair they said that she could choose any princess wig that she wanted and she could have that hair done and keep the wig.  So we were pretty happy about that.  A few minutes later the hostess came and asked Madeleine who her favorite princess was.  After that they led her back to the changing rooms so she could pick out her wig.  However, before she opened the door, the hostess explained that the Fairy Godmother had come and left Madeleine a present.  She threw open the curtain and there hung an Ariel dress for Madeleine to keep!  They had also lined up every princess wig and she got to pick whatever she wanted.  She could have worn the Ariel costume with Cinderella hair, or whatever, but she chose Ariel hair as well.  What an awesome surprise!  Madeleine was so happy and I felt like crying.  They were so nice to us, it really was magical.

The surprises didn't stop there.  After her hair and makeup were done they said we could go next door for photos.  I thought maybe we would buy a photo if any of them turned out okay.  While we were in line the manager of the photo place said that he had spoken with the manager of the salon and that they had agreed to give us a photo package on top of all of the other things they had already given us.  Wow!  It turns out that the pictures weren't so great, but that's okay, Madeleine likes them.  I was really impressed with Disney.   They really made her feel like a princess.

Make-A-Wish Trip: Day One

Two days before Madeleine's Wish trip we STILL weren't sure whether or not we would be going.  Her counts were still dropping, but still in the safe zone for travel.  The next day at clinic we were finally given the green light!  This meant rushing home from clinic to frantically pack five people's clothes and necessities, all the medical supplies for Madeleine, a box of supplies that were being shipped to my parents, etc.  It was stressful.  In the middle of that clinic called and said that they needed a few more labs for San Francisco.  We were planning on driving back to Albuquerque that night to stay in a hotel before our early flight to Orlando the next morning.  Our doctor arranged for us to go in through the ER on the sly that night and do the labs then.  We had instructions involving a secret password and handshake.  Just kidding.  Sort of.

When we finally got to the hotel we were greeted with a room filled with balloons, cookies, gifts, and Disney facts.  It was really fun and the kids were so excited.  No one fell asleep until about midnight, and we all woke up at 4:30 am the next morning.  The hotel let us keep our car there for a couple of weeks (for free!), so we took the earliest shuttle over to the airport.  We were greeted by our Make-A-Wish coordinators, Jamie and Allison.  I can't believe they got up that early.  They had tiaras for the girls, and breakfast for all of us.  They escorted us through security, carrying bags and sometimes children.  Jamie even followed us all the way onto the plane to bring me coffee and the girls orange juice.  Wow!

Amazingly, we all survived the flights and arrived in Orlando where we were greeted by someone from Give Kids the World (GKTW).  He helped up get our bags and then walked us over to the rental car place to get our car.  The girls grabbed some brochures and immediately started planning our trip.

We had our pick of minivans (rental provided by GKTW) and then made the drive to Give Kids the World Village.  All the kids fell asleep on the way there and Laurel just about lost her mind when we had to wake her up to check in.  Madeleine was given a stuffed Mickey Mouse, and Laurel and Claire both got Shamus.  We were given a quick tour of our villa -- Wow!  I had looked up information about where we were going to be staying, but I wasn't expecting anything so big, or so nice.  We have a two bedroom, two bath villa with a full kitchen and large living room.  It comes with just about everything we need to live here comfortably for the week. 

We spent the afternoon exploring the village.  We were all so tired that it's hard to remember exactly what we saw and did that afternoon.  We definitely found the ice cream shop!  Ice cream is served (everything in the village is free) from 7:30 am to 9:30 pm, and getting ice cream for breakfast at least once is mandatory.

The carousel might be Laurel's favorite part of the entire trip.  I've lost count of how many rides on the carousel she has taken!

This tree (Elmer), snores.  It's pretty hilarious - especially if you are five!

Mayor Clayton is the mascot for Give Kids the World.  We saw a lot of him during our stay.

Visiting the salon.  Kids can get tattoos, painted nails or face painting.