Make a Wish - final days

On the last couple days of our trip we visited Sea World, Animal Kingdom, and then spent the last half day at Magic Kingdom - again.  The highlight of Sea World was the dolphins.  Wish Kids and families get a free tray of fish to feed the dolphins.  I've never touched, or been that close to a dolphin before, and it was truly one of the highlights of the trip.  What amazing creatures!

It's hard to take a bad photo of a dolphin!

We were instructed to touch the dolphin on the chin and then drop the fish in.  At one point one of the trainers had the dolphin lie on the side and we could pet the dolphin.  What a cool experience this was!

Back at the Village: Ice cream for breakfast!

Later that night we went to the town of Celebration, FL for dinner.  Celebration is a master planned community, and while it does have a rather Stepford Wives quality to it, it is very clean, and very nice.  We went in search of Madeleine's favorite food, sushi!

And sushi we ate!

Later back in our villa, we surprised the girls with a visit and tuck-in service from Mayor Clayton!  They were so surprised when he knocked on our door.

Mayor Clayton is in his pajamas too!

The next morning a couple Disney characters visited the Village.  This was so nice, to see the characters right in the Village instead of having to search them out and wait in long lines in the parks.  Mickey was very impressed with Laurel's light up shoes.

On our final day we visited Animal Kingdom.  We took a tram ride through Africa and got to see a lot of African animals.  I will spare you all the pictures :)

If you look closely you can see that there is a man in this bamboo costume.  

After a morning of Animal Kingdom, Madeleine wanted to head back to Magic Kingdom for one last evening.  I think we spent 2.5 days at Magic Kingdom, but that's okay, it was her favorite place.

We left Magic Kingdom in the early evening because we had to be up super early for our flight the next morning.  AND because it was Halloween at Give Kids the World.  They didn't want to miss any trick or treating opportunities.  This is a picture of Laurel with a fortune teller.  I love the look on Laurel's face - so serious.

And that finally wraps up our trip!  We had such an amazing experience.  Everything was truly magical, and this really was the trip of a lifetime.  Even if we went back to Disney World for a week it would never be the same.  We are so, so thankful to Make A Wish New Mexico, and to Give Kids the World for giving Madeleine (and the rest of us) such an amazing trip.  

And here we are in the middle of October already.  We have been enjoying a month "off" of treatment while waiting for the MIBG treatment to do its thing.  Madeleine has a whole slew of scans and tests starting next week.  These will tell us if the treatment worked, and if we are doing it again.  I'm feeling pretty nervous about the results of the scans.  If her bone marrow is clean San Francisco may want to go directly to stem cell transplant instead of doing MIBG again.  Madeleine's doctor also thinks that this is a good time for us to move.  Ryan's extension on his post doc is coming to an end and we are heading to Tallahassee at the end of the year.  I have mixed feeling about moving (basically I don't want to), but it will be another adventure. 

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.