April 4

Madelyn felt good both Saturday and Sunday.


Saturday morning my Mom and I went to the Leukemia and Lymphoma Society's Team in Training Practice.  Madelyn was supposed to be there, but after just getting out the hospital we decided it was not a good idea.  The Team is raising money for Leukemia by running in races in Vancouver and Paris.  I made a short speech to the team.  I will try to post it later this week... if I remember :)


One little problem was the pharmacy missed one dose of Benadryl when they discharged us from the hospital.  Soooo Madelyn had to skip one dose which ended up NOT being good.  She missed the middle of the night dose and by the time we were in clinic today at 10am the allergy to PEG started rearing it's ugly head.  Rash coming and going from different parts of her chest, arms, neck and face, as well as, some discomfort in breathing and her throat.  This chemo will last in her system for 2-3 weeks and this week should be the roughest for "getting past" it.  She had her last dose of the steroids today; they help a lot in the control of the allergy so I have to be extra diligent in getting all her meds to her. I have to set the alarm clock... reminds me of when Madelyn and Sophia were newborns.  They did not latch well and lost weight.  I had to set the alarm clock to wake and force them to eat in the middle of the night.


The steroids also made her numbers out of this world today:


Hem 41.3    Plat 333   WBC 5.4    ANC 4,120 !!!!!


These are the highest numbers we've seen since all this began... all due to that drug we love to hate. Dexamethazone.  Steroids.


So the doctor's made sure we had several weeks worth of drug supplies today.  The different drugs are complicated for my un-practiced brain.  The picture of the dry-erase board I posted on the blog a few days ago has gotten more complicated.  

Instead of the whole week being on the board as before, I now can only fit three days.  Do you see this?  Wake her up at midnight, then a 6am, 8am, 11am, 12noon, 4pm, 5pm and 9pm dosing.  Tomorrow night I wake her up at 2am.  

So the board is the "game plan" and this little calendar is the recording of the actual execution.  I put everything in here: time meds were taken, her poops, her crankiness, hospitalization, pain, physical therapy, counts, vomiting, etc. I never have to guess when the doc asks me questions.

Middle of the night pills ready for dosing.  I try to have the next days pills prepared and organized.  This is what I sit down to do after the girls go to bed.

This is just what we give her at home.

So today was Day 8 of Delayed Intensification.  She had her second dosing of the Red Devil:  Doxorubicion chemo (it is very red in color and causes most kids a lot of nausea, vomiting and hair loss).  She is needing the anti-nausea meds, but it seems to be controlled.  She ate a good dinner tonight.  

She also had another dose of the Vincristine.  The accumulative effect of this chemo is showing some of it's effects on her walking again.  I'm glad we are starting back with the physical therapy tomorrow.  

Peter and Sophia went home to Anacortes today.  We will all be separated most of this week.  Sniff, sniff... it will be hard on all four of us, but especially Madelyn and Sophia.

I also have some pictures of MJ in the hospital from Thursday and Friday, but I realize they went home with Peter today... I have photos of her opening some gifts in her hospital bed.  Our good friend Dr. Amber Fowler had cancer when she was a baby.  Her wonderful mother Pam, Grandma Pam, who went through all this over 30 years ago, gave us a bag with lots of individually wrapped gifts.  Each gift has a post-it note on top telling us whats inside.  She is definitely a mom in "The Know."  She told us to save them and give them as the need arose.  That need came last week.

I have a big tupperware that is prepared for hospital stays.  If we get admitted all one of us needs to do is go get the tub.  It has shampoo, PJs, toothbushes, extra clothes, etc... and little wrapped gifts from Pam.  I just finished washing all the hospital clothes, re-packed the tub and two more pre-wrapped gifts are in there.  Thank you Pam!

Here are some pictures from the weekend:

...Magnuson Park...

I love Phia's fake smile.

I tried to get that sticker off, but she wasn't havin' it.

Sis didn't feel like walking too much so Phia helped us with the pushing.

Every home needs a circle when you have kids.  We have one at the apartment just as we do in Anacortes.  No better way to play chase than round, and round, and round, and round....

Daddy not so sure about Madelyn's rules to Go Fish.

The Rascal.