August 24, 2013

In which I ramble

I forgot to mention this, but Madeleine got her ears pierced a few weeks ago!  Originally we were planning on waiting until she was much older, but, well, things change.  We had to get special permission from her doctor, who put her on 30 days of penicillin to ward off any bugs (remember that she doesn't exactly heal well when she has 0 white blood cells).  We had a tiny window when her counts were high enough to get pierced before starting the next round of chemo.  Mad almost chickened out and didn't do it, but in the end she was brave.  She loves her earrings and is very proud of herself for choosing to get them pierced.  I kept telling her that this was one thing that she can choose to do, or not to do, unlike the millions of other painful things that have happened to her lately.

This past week has been challenging.  Ryan was away in Tallahassee to take care of some job-related things.  It really was the worst possible time for him to be away since we expected Madeleine's counts to bottom out.  Every other time she has ended up in the hospital with a fever during this time.  Thankfully that did not happen this time.  Every morning I would think, "well, we made it one more night without being hospitalized."  Thinking of being in the hospital with all three kids (or finding temporary homes for them while we were hospitalized) was truly stressing me out.  I know I can count on local friends, but I feel that many of them have done so much for us already, and I hate asking for help :)  And, I worry about Laurel being shuffled around all the time.  She's too little to understand any of this, and we have seen some changes in her behavior after some of these separations.  Not to mention that she has really started stuttering.  Cancer really does devastate the entire family.

To compound the stress, we had to be in Albuquerque four days in a row for scans and tests.  Albuquerque is a two-hour drive from our home.  In the past week Mad has had: A PET scan, CT scan, MIBG injection, MIBG scan, and an MRI.  The MRI was at ten PM, which is crazy ridiculous. Madeleine was a trooper and was still for all of these scans.  This was the first time she has done an MRI (over an hour long) without sedation and she did extremely well.  I am proud of her.  Madeleine and Claire and I stayed at the Ronald McDonald House that night, and Laurel stayed with good (super, amazing, wonderful!) friends that have just showered us with love and support.  We love you Cooper family, seriously.

She was able to go to school on Tuesday, and Friday of this week.  She loves kindergarten, and we are so grateful for any days that she is able to attend.  Her counts have not bottomed out yet, which is surprising.  On Monday her ANC (infection fighting ability) was at 8,000, and at 3,000 on Thursday.  She has to be above 1,000 to go to school.  So, we don't really know if she's reached the bottom yet, or not.  I don't understand why there isn't a device, like the ones that measure glucose levels, to quickly ascertain what her counts are.  It's frustrating to not know whether we should stay home, or let her go out.

Next week she has an Echo and labs on Monday, and a clinic visit and bone marrow aspiration on Tuesday.  The labs on Monday will tell us whether or not we are leaving for Disney World on Wednesday!  All of these scans and tests are for San Francisco, so she can begin the MIBG therapy trial there. Oh, we found out that they were able to get Mad a spot on the Vorinostat trial, which really doesn't mean anything to anyone, but it's good news.  It's the one that the SF doctor wanted to get her in.

So, it has been a whirlwind of traveling, and phone calls to San Francisco, and prepping for Disney and for our SF stay.  We will mail a big package of medical supplies to Give Kids the World in FL on Monday, and another to my parents' for our stay there.  Thank you to Make-a-Wish for letting us use their UPS account!!  The plan, if everything goes as it is supposed to, is to head to Albuquerque on Monday afternoon for the echo, come home, drive to Albuquerque very early on Tuesday for clinic and bone marrow aspiration, come home, attend the open house at Mad's school, and then drive back to Albuquerque that evening to stay at a hotel before our 6am flight the next morning.  The hotel is letting us park our car there for free (as part of Make-a-Wish) for 2+ weeks while we are gone.  Our Wish coordinators will be meeting us at the airport at 5:15am on Wednesday just to see us off!  Please, please, please let her counts be good enough on Monday to go!

In middle child news, Laurel started her first day of preschool.  She is going to the same preschool that Madeleine went to, with the same teachers, so she has had no problems with that transition.  Her teachers are being great about specifically not mentioning Madeleine, or asking me how she's doing when Laurel is around.  They want school to be a place just for her, and for that I am thankful.  Laurel needs some extra attention and love these days.

August 14, 2013

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!

August 9, 2013

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.

August 2, 2013

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.