Today was Madeleine's first day of kindergarten.  Unbelievably, we were discharged in time, and she made it to the first day.  Madeleine is feeling okay.  She's been having a lot of nausea, which is typical for being so close to the end of chemo.  She almost made it through her first half-day of school before needing to be picked up for feeling "yucky."  I'm really impressed with Madeleine's school, and especially her teacher.  Mrs. Whitaker seems like the perfect match for Madeleine, and for this situation. They know she won't be attending much, but are really rolling out the red carpet for her.  Hopefully she will feel well enough to attend for the rest of this week.  I'm sure she'll be feeling better by next week, but unfortunately that is when her counts will be at or near zero, so she won't be able to go.  Also, we have a whole slew of scans and tests that San Francisco needs before starting their therapy.  Our hospital here is trying to get everything done next week and the following two days.   Because after that we will be on our Wish trip!

Planes, BART, light rail, buses, shuttles, taxi

Our trip to San Francisco mostly consisted of getting from one place to another.  I think we took all possible forms of land transportation.   Our flight out of Las Vegas (we connected there), was delayed about seven hours, so we hopped on the plane to Oakland instead and took BART into San Francisco.  One of the Southwest employees told me that this was the way to go since SFO is notorious for delays due to low clouds.  Unfortunately our checked bags were still on the delayed flight and we didn't get them until midnight that night (for a fee!  We "voluntarily separated" from our luggage even though the flight was delayed for a ridiculous amount of time).  Because of getting into San Francisco later than planned we weren't able to stay in the Family House for that night, which is housing for families of seriously ill kids being seen at UCSF Children's Hospital.  Our San Francisco social worker was able to quickly find us other accommodations, and luckily for us they were across the street from the beach.  Even though it was rather cold Madeleine had a great time walking on the beach the next morning.

The consult with Dr. Matthay went very well.  Madeleine will be in one of two trials.  Both use the same level of MIBG (radioactive isotope that goes directly to the tumor, this is the radiation component of her treatment), and either a dose of chemo to go with it, or a different drug.  We are waiting to see if there is a spot open in one of the trials, but she will definitely be getting one of these combinations.  After signing consents and going over side-effects we toured the room where the therapy will be happening.  It looks like a regular hospital room, but the walls and floor have lead buried in them.  There is also a large lead "wall" shield that is placed between the bed and the door.  The door remains open all the time, and caregivers are in the safe zone as long as they are on the right side of the lead shield.  There is a small ante room with one of those lovely chairs that turns into a bed for a parent to sleep on.  If you've never had the pleasure of sleeping on such a  contraption consider yourself lucky.  We will be able to talk to Madeleine, and somewhat see her because of a mirror on the other side of the room.  For the first day or two we will only be able to spend about 20 minutes total on her side of the shield.  Most of this time will be devoted to helping her change clothes, or administer medicine, and other elements of self-care.  The nurses can't be in the room for any longer than we can.  Madeleine will be pretty much confined to her bed during this time because she will have a Foley catheter placed to remove urine from her body.  The catheter drains into a continuously flushing toilet. The radiation is emitted through the urine so it's important to get it out of her bladder as quickly as possible.  As the days pass the level of radiation will lessen and we will be able to be in the room with her for longer amounts of time.  They estimate that she will be inpatient for 5-7 days.

I realize I'm using the words radiation and radioactivity somewhat interchangeably.  Are they the same thing? I really don't know.

After the consult we went to Pier 39 and thoroughly enjoyed ourselves on the wharf.  I think the sea lions were Madeleine's favorite attraction.

Today, Friday, the day after we flew home, Madeleine checked in for chemo cycle #4.  I'm a little nervous about this round because it uses different drugs and we don't know how she will react to them.  Ryan took her in today, and we will trade off on Sunday so that he can go back to work.

It seems to be the trend that 5-7 days after chemo ends Madeleine is back in the hospital with a fever.  This time was a bit easier, the fever was low-grade, blood cultures were negative, and the fever was quickly managed with IV antibiotics.  We had gone to Albuquerque for a blood transfusion and it turns out she had a low fever too.  She spent four days in the hospital for the fever this time, although most of that was actually just waiting for her counts to come back up.  Fever can be extremely dangerous in a person with no immunity, which is why she is admitted every time, even if it is low.

This week we traveled to Albuquerque two days in a row for an MIBG scan.  On the first day a radioactive dye is injected, and then the second day is the actual scan.  The active tumor takes up the dye and it lights up during the scan.  Doctors use this scan to measure how much of the tumor is still active.  In order to get the treatment coming up in San Francisco, Madeleine's tumor still has to be active, or MIBG avid.  This is the only time that we are actually hoping that Madeleine will still be MIBG avid!

Yesterday Madeleine and I were able to visit the Make-A-Wish office to meet our wish coordinator, and to sign papers.  What a blast!  They have a room full of toys (the "wish fulfillment" room), and someone came and played with Madeleine, all while "interviewing" her about her wish and her favorite games, foods, color, etc.  I sat and signed a bunch of papers, and in the end we all played UNO together.  They gave Madeleine a special "Make-A-Wish" Barbie to take home, and one for Laurel too.  Talking about Madeleine's wish has gotten her that much more excited about our trip to Disney World!  I just received the airfare confirmation.  Our trip (pending low counts, fevers, or any other disasters) will be from Aug. 28 - Sept.3.  We will be staying in a hotel in Albuquerque on the night of the 27th, because our flight is at 6 am! On the third we are going to fly directly from Orlando to San Francisco so that Madeleine can be admitted to UCSF hospital the next day.  Wow!  I'm already impressed with Make-A-Wish for being able to squeeze this trip into this small window that we have before treatment in SF starts, and especially for flying us all the way to San Francisco to get her there in time! We are all getting very excited about the trip.  Make-A-Wish pays for everything: airfare, rental minivan, hotel stays, even food and incidentals.  They don't pay for souvenirs, but Give Kids the World, the place we are staying, is known for dropping off presents every day. Woo hoo!

Next week, on Tuesday, Mad and I fly to San Francisco for the consultation with the doctor there for the MIBG therapy.  This should be a fun trip.  I love San Francisco and am excited to show her some of the sights.  We come back on Thursday, and then are being admitted to UNM on Friday for chemo #4.

Besides hospital visits and trip planning, the girls have been thoroughly enjoying the summer.  As I write, they are outside with the neighbor girls playing detective, and painting rocks, and eating popsicles.  I am so glad for these days of play.

More good news

Quick note with more good news:
Bone marrow was originally at 30-50% disease involvement and is now at 5-10% involvement.  That's a great decrease!  CT also shows a good decrease of all of the recent growth.  Dr. B is very happy with her response to the chemo.

We have consented for cycle #4 of chemo, which is to be cisplatin and etoposide.  Hopefully this will be the last round of chemo.  She had her hearing tested today to get a baseline because the cisplatin can cause hearing loss.  As of now, her hearing is normal.  We have a consult for the MIBG therapy in San Francisco on August 7th.  That therapy will begin early September, and will either be two or three infusions.  I don't know too much about this yet, but Mad will be very radioactive after the treatment.  So radioactive that she will have to be in isolation, in a lead-lined room.  Sounds awful, right?  We will only be allowed to be with her for a short amount of time each day.  That amount of time will increase as the days pass and she loses some of the radioactivity. I talked with her a little about this today and she doesn't seem too freaked out about it.  She just said that we'd better bring lots of games and movies and things for her to do.  At our doctor's suggestion, she is going to be seen by the psychiatrist during her next chemo admission to help her prepare for this period of isolation.  So, if it does not go well I guess Zoloft is always an option.  Overall it sounds like each treatment period will be about a week.  After that we will see where she is at that point and go from there.

I also talked to Dr. B. about the possibility of letting Mad go to her first day or two of Kindergarten.  I know this would mean a whole lot to her, and if I'm being honest, to me too.  I want her to feel as normal as possible, and to have normal experiences.  Her friends have been amazing at looking past her hair loss and just getting on with the playing.  I am hopeful that other kids will be able to do the same.  Normally kids on this high-level treatment plan don't go to school at all, but Dr. B. said that she is willing to make an exception provided that she is a) out of the hospital on time after cycle #4 and b) her counts are still above 500 at that point.  So, we will be crossing our fingers that this can happen for her.

The last of the chemo is going in now (Friday night), and we will be going home tomorrow.  Somehow, I'm sure we will see this place again before our next chemo admission....but hopefully not!

Up and up

The third chemo cycle is going well, and so far Madeleine has been tolerating it beautifully.  We were prepared for a lot of sleeping, and a lot of vomiting, as it has been in the past, but are getting virtually none of that.  It is the same drugs at the same doses as cycle #2, so I don't know why it's affecting her any different this time, but I won't complain about a good thing.  When we go home (hopefully on Saturday), and she is off the anti-emetic drip, things may be different.

A CT was done prior to the start of chemo and it showed further reduction of the tumor (yay!).  A bone marrow biopsy also showed reduction of the amount of disease in her marrow!  I'm still waiting for the reports to find out the exact measurements, but this is great news!  She will have an MIBG scan in a couple weeks and that will give us a good "big picture."  Also, we supposedly have a consult in San Francisco with UCSF for the MIBG therapy in three weeks.  We are waiting for insurance authorizations and details to get ironed out, but it looks like we will be taking another trip shortly.

Meanwhile we have been keeping busy with some exciting hospital guests:

                                          Madeleine gives therapy dog, "Bug," a checkup.

 The Lobos basketball team visited and Madeleine showed them all around our unit.  The coordinator got an email from some of them today saying that they would like to come back to visit Madeleine.  Pretty cool!

 Last, but far from least, came the clowns!  Again Madeleine was the official hostess and watched them perform for all of the rooms.  She even made them go back to her room so that they could see it.  She thought they were hilarious (and they were).  These are Ringling Brothers clowns, a husband and wife team.

Tomorrow the Isotopes (baseball players) are coming.  Madeleine is not nearly as excited about them "because they are boys."

All in all we couldn't hope for a better chemo visit.  Hopefully we'll be outta here soon!

Thanks for the comments on the last post - it does help to know that someone is actually reading!

And onto Cycle #3

Nine days is the longest amount of time Mad has been out of the hospital since mid-May.  Four of those days were spent in Denver, so I can't say that we have been together as a family that whole time.

We both enjoyed Denver.  It was really nice to have one-on-one time with Madeleine when she was feeling good.  We were able to go to the movies, eat out, spend the day at the zoo with good friends, and we did quite a bit of shopping as well - a rare treat! The stem cell harvest went better than anyone expected; they were able to get enough stem cells for more than three rescues, and it only took one day!  It's nice to see her feeling so good.  Clinically, she is better than she has been in months.  She is walking well, she has an appetite, and she is in great spirits.  I am hopeful that all of this means that the chemo is working.

Tomorrow is the start of another hospital admission, this time for scans and a third cycle of chemo.  No one is looking forward to going back, but I'm impressed with how well Madeleine is coping with knowing that she has to be inpatient for another week+.  By this time she knows how crappy chemo makes her feel but she hasn't complained at all about having to go back. 

Below are some pictures from our Denver trip:

We took full advantage of the frozen yogurt shop!

The results of a day of shopping.

At the zoo with Kieran and Cara

At the airport on the way home we ran into a group of college cheerleaders.  They spent a long time showing Mad their pompoms and outfits.  Mad has a new career ambition.

 

Anyone out there?  Drop me a comment if you are reading :)

Denver Bound

Madeleine was released from the hospital on 7/4 - just in time to see our local fireworks.  She said that seeing the fireworks was "the best night ever," so it was definitely worth all of the effort getting her discharged on time.  Our doctor was on the phone all afternoon trying to get everything set up to get her discharged on time.

Just in time

Madeleine came home on antibiotics to finish clearing up the infection that she had that landed us in the hospital.  We have spent a nice weekend at home.  Her counts are way up so she is free to play with other kids.  We even went out to lunch a little bit ago and were very surprised when the waitress said that another family had completely paid for our meal!  We don't know who it was, or why (my nearly-bald child is the only reason I can come up with) but we are very grateful.  Gotta love Los Alamos!

We are getting ready to go to Denver early tomorrow morning.  We are to go directly from the airport to the hospital for a consultation, and then I'm hoping that we will have the rest of the day free.  The stem cell harvest will begin on Tuesday and take two to three days, outpatient. The doctors are hoping to get enough stem cells for three "rescues."  In the near future her bone marrow will be completely wiped out by high-dose radiation, or chemotherapy, or both.  The stem cells that they get this week will then be reintroduced to her body so that she can begin making her own blood cells again.

This week we found out that UCSF wants Madeleine for a special treatment called MIBG Therapy.  This is a relatively new treatment for relapsed neuroblastoma and will take the place of standard radiation and bone marrow transplant.  Her oncologist has said all along that this would be a very important piece of Madeleine's treatment so we are thrilled that they want her.  MIBG therapy uses radioactive isotopes (I think), that go directly to the tumor and (hopefully) destroy it.  We need to find out a lot more about it, but it sounds like they will want her either in early August (after her 3rd cycle of chemo), or early September (after the 4th cycle).  This treatment is expected to last until December, and after that, if all goes well, we may be done with treatment!  I believe that she will still have surgery somewhere in there too.  Ryan is delaying his start/end work dates again so we will be living here until December, at least. 

I will not have my laptop with me in Denver but I will try to update here if I can.  If not you can find me on Facebook for shorter updates.  With the crazy amount of medical supplies I have to schlep with us, I don't think I will have room for the laptop too.

 

Sillies

More sillies

The only way to travel with an IV pole.

Claire enjoys her first food - pickles!