Madelyn Jill: Nov 8

Madelyn had her monthly appointments at Children's yesterday. It was a busy day in the Oncology Department, but our appointments still managed to stay on-time. We arrived at 9:30am and were done by 12noon. She had her routine CBC, doctor's checkup and chemo infusion. Her numbers are still elevated so they are increasing her oral chemotherapy dosing.

Hem 37.7 Plat 194 WBC 6.1 ANC 4337

(ANC should be between 750 - 1500)

Her liver is a little elevated for toxicity (nothing to be concerned with yet, but watched) so we will be testing that in two weeks again.

She has had a little snuffly nose the last three or four days, so they also did a nasal wash and will be testing for any viruses.

Madelyn starts her five days of steroids this week (which means not sleeping well, sadness, mood swings, hunger) and possible pain. Last month we only had to give pain meds one time!

Madelyn continues to be in fantastic spirits and energy. We have been trying to make our visits to Seattle fun for the girls. They love to stay in hotels so we have been doing that when we can't stay with my sister. This last hotel had a swimming pool! The girls and I swam for two hours on Sunday afternoon (Peter had some appointments for KP Studios). Then they bounced on the hotel room beds and we went out for Mexican. There was an outdoor light display near the hotel and we ran around that for awhile before bed. 6:30am Monday morning MJ was at the pool again before leaving for the hospital and Phia stayed with me to pack up.

Uncle David sent the girls these blow up animals made of heavy duty rubber. They love them and have been going crazy for them all week. I told them no, no. Absolutely not. We can not bring them to Seattle. Peter, Madelyn and Sophia were sneaky though... the three of them conspired against Mama. You can see in the pictures below... the girls bounced all around the hotel and Seattle Children's. What a spectacle!

Madelyn was a little nervous before her appointments this week. This is normal for her. We let her know it's ok to be nervous, that we will be right there with her and to tell us if there is anything we can do to help her. Then we commence with a heavy dose of distraction. She ended up doing great during accessing this time. Just awesome.

** REMISSION DAY - CANCELED **
So are going to cancel the Remission Day celebration on Dec 23rd. After I posted this idea last week, I talked with Madelyn about having a party to celebrate her Remission. She was not very excited about this idea. I spoke with her again this weekend and she is sure she doesn't want to celebrate. Peter and I decided to respect her wishes and feelings and let the day go by without fan fare. Leukemia just isn't part of our lives as much anymore. (Can I hear a "hell ya!!" for that!). She, and we, just don't talk about it much. We are just living our lives these days... working, going to school, having dinner, visiting friends, going to dance class... She doesn't like to talk about it so we don't unless we need to prepare her for going to Seattle for treatment.

The only thing that seems to be of concern for her lately is her short hair. She didn't care about being bald when she was around bald kids all the time. Now she is finding that adults and kids relate short hair with being a boy (even if she is decked out in head to toe pink) and this makes her sad. But luckily not too often...

** SOPHIA **
This blog is great for recording Madelyn's progress, changes and treatment... but Sophia has lots changes going on too. She is a special little girl. I have started a personal journal for Sophia so I can record her progress as an individual. She is a funny, energetic, spunky girl and is an amazing support for her sister. They are truly best buddies. They play for hours together. You may see more pictures of Madelyn because this blog is dedicated to recording HER journey and MY reflections. But don't worry, there are just as many pictures and words being recorded for Sophia...