MIBG done

Sorry for the delayed update...
The MIBG treatment went as well as can be expected.  It was very similar to last time in terms of the side-effects.  Madeleine was discharged two days before Thanksgiving and my Dad came to pick us up and take us to their house for Thanksgiving.  They did an MIBG scan before she was released and there is NO new growth of tumor.  Her symptoms (pain and high blood pressure) are so similar to when she relapsed that we were really scared that it had grown rapidly.  The bad news is that we still don't have an answer as to why she is having pain in her left leg, and high blood pressure.  The pain has gotten a lot better, but she is still requiring a couple doses of tylenol with hydrocodone a day.  It also seems like it has been a little harder for her to recover this time.  She still has no appetite, and continues to have nausea and vomiting, so it's hard to feed her through her G-tube.  She has lost about three pounds, weight she cannot afford to lose, so we are working hard to get that weight back up.  I think she is starting to feel a little better.  I'm hopeful that she will be able to go to school on Monday, even if it is just for a little bit.

We had a nice Thanksgiving with my family, and flew back home today (Friday).  Madeleine and I will fly back to San Francisco on Thursday for the stem cell infusion.  Hopefully we will be back home on Saturday.

Ryan's parents have been taking care of Laurel and Claire at their house, and after two weeks of being away from them I am ready to see my little ones!

San Francisco x 2

Here we are in San Francisco again.  Madeleine began her inpatient stay at the hospital today.  She isn't in isolation yet, that starts tomorrow with the MIBG infusion.  Today was the Foley catheter placement and that went very well.

A couple days before we left for San Francisco Madeleine suddenly started having pain in her leg.  The pain is very reminiscent of the pain she was having before her (re)diagnosis six months ago.  It was also discovered at her clinic visit when we got here that her blood pressure is high again.  She is back on Amlodipine, and that is helping to lower her pressures, but we don't know yet what is making it go up.  Her scans from three weeks ago show improvement, and her doctor here thinks it's unlikely that the tumor would have grown that fast.  But with Madeleine, and with this disease, nothing is unlikely.  The pain has also been getting better, and she has needed less pain meds in the last couple of days.  No one can figure out what any of this means yet.  She is scheduled for an MIBG on Tuesday (standard procedure after the treatment), so perhaps we will see something then.  Until then we have mind-numbing hospital days of waiting and wondering.

Happy 6th birthday!

 

We celebrated Madeleine's sixth birthday earlier this month.  Lately she is into pretending to be a spy, or a detective, and so she asked for a detective birthday party.  When the party guests arrived they had to create a detective ID badge with two randomly assigned words (Quacking Duck, Blue Lizard, Silent Pickle, etc), and their fingerprint.  Once all of the ID badges were in place they started the "mystery" part of the party by popping balloons to reveal the secret clue.  This led them to various places inside and outside of the house with clues that revealed the next location.  We were hoping this would take them awhile, but they really flew through the clues.

 

One of the clues was hidden in the bathtub.

 

This was the "laser" hallway they had to go through to get to one of the clue locations.  It was a little too easy!

After all the clues they found their goody bags - more detective gear!

Blue Lizard was a reluctant model spy.

My little Laurel

More spy friends!

Present opening (brag:  I built all of the furniture in this picture! The patio table and the bench and chair in the background).

 

Cake time!  The cake is supposed to be a magnifying glass.

The highlight of Madeleine's birthday was the fabulous gift from The Children's Cancer Fund of New Mexico.  They asked her what she wanted, probably expecting to hear about a My Little Pony, or Barbie or something...nope!  She asked for, and received, a zip line!

 

 The kids (and friends), have been using the zip line every day after school.  It's a big hit!

I just had to throw this in here because it's cute.  This was Laurel's first time on roller skates and she did very well.  She did get tired towards the end and opted to be pushed around on the cart.  They can't wait to go back!

We return to San Francisco on Tuesday of next week.  Dr. Matthay (the San Francisco doctor) was very pleased with the results of the scans and thinks that Madeleine will benefit from another MIBG therapy.  Hopefully she will be out of the hospital by Thanksgiving so that we can spend the holiday with my family.  We will be split up, Nana and Pop pop are coming to watch Laurel and Claire at our house, and then take them to Tucson for Thanksgiving.  We will fly back home the day after Thanksgiving (hopefully), and then Mad and I will fly back to San Francisco a week later for the stem cell infusion.  A lot of travel, but this way I won't be separated from the little ones for three weeks.

That's the latest!

Hope

Hope is a dangerous thing.  It feels difficult to let myself be hopeful; as if giving in to hope means further devastation down the road.  I have this sense of relief over the last few days.  I hadn't realized just how much I was holding my breath, waiting for the results of all the scans Mad had.  And we got good results.  Not spectacular, but good, heading in the right direction, positive.  I should be joyful, I should be relieved, and I am those things, but there is also this sense that I can't let my guard down.  I can't ever let my guard down.  I can't ever relax about this.  Shortly after Madeleine had a big surgery last winter, when things really started to go wrong (but we didn't know it then) I got a call from her doctor to ask if I wanted them to do a post-op MRI.  I don't know why this was my decision, it's never been my decision before, but she was debating about doing one because Madeleine appeared to be doing so well.  She had recovered well from surgery, she had good strength, a decent appetite.  It seemed that the surgery was successful, that the tumor had been debulked, the biopsy came back negative (which is one of the craziest parts of this whole story.  If only they had biopsied a second site as originally planned...).  Everything was going well.  And I said No.  I didn't think another MRI was necessary.  I didn't want to drive to Albuquerque.  I said no.  I let my guard down.  I chose to believe that everything was fine.  I know this isn't my fault, but I can't help the "what-ifs." 

The CT, MIBG, and MRI scans all show that the tumor has decreased.  The MIBG actually is more avid (avidity = active tumor), in one spot, the original tumor in her lower spine.  That is a strange result, and no one is sure why that has happened.  Her bone marrow shows trace amounts of disease.  before it was around 5%, and now we are closer to zero.  So, a much better result, but still not the all-clear that we were hoping for.  The part of the tumor that had grown up her spine into her chest and near her heart may be completely gone.  There is one spot in her thorax that appears calcified, and if that is the case then it is dead tissue.  Her VMA/HVA are now at the level that they were a year ago.  They are in the mid-20's.  In May, when she relapsed, they were over 100.  At this point the tumor may be at the size that it was a year ago.  Essentially we are at the point where we were a year ago, when everything was fine.  Except (and this is a big except), we now know that this tumor is not stable, also except she has had a ton of scary drugs to kill this thing.  Nevertheless we are pleased with the results of the MIBG treatment.  Our lives are now in the hands of UCSF who will be receiving all of her scans today and deciding what the next treatment will be.  They may want us there as early as next week.

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.