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.


JT said...

Wow Amber, sooo much going on. I knew it as you've been reporting all along, but just reading through these few paragraphs is exhausting! Can't imagine living your life right now! God bless you and your family and I am on the wavelength for positive ability to do the Wish trip!! Much much love to you all---Mad and Laurel look so beautiful in these pics! Love the earrings too!! Janice T

Bree said...

Thinking of all of you and crossing everything in hopes Mad's counts are high enough for Disney. Love her pierced ears!

Adelaide and Harleigh Morris said...

Your strength never ceases to amaze me, and everyone in your life I think. The things you are dealing with so admirably are things no one should ever have to do, and I think we all hate that for your whole family. Laurel will be fabulous and amazing, and will grow to understand why things were confusing for her at this time. Mad is making every superhero look like they forgot to eat their wheaties, and I'm so proud of her (which sounds silly from this far away, but its true so there ya go). You guys are doing everything you possibly can, and you're doing it right. The little set backs are just that - little. You are ALL making such incredible progress, but I'm sure that's hard to see most days. Know we are all thinking of you and praying, sending good thoughts, loving juju and hope that things get better and better. Oh, and I'm crossing every limb I have that her counts are high enough for DW!!

April said...

Not sure what I can say except that you are truly an exceptional woman, mother, wife, etc. We are thinking of you all and praying for you daily, and definitely keeping our fingers crossed that your Disney trip will go off without a hitch. Lots of love from the Aymamis!