Madelyn Jill: May 17

Well… we continue with lock down – i.e. not going anywhere – but we also had a visit from Uncle David in NYC. He arrived on Thursday night and left Monday afternoon. It was soooo fun to have him here. Peter was home working all week and weekend so it was great to have someone here with me. He is fantastic with the girls and they looooove him. MJ calls him Funny Uncle David. When he went to the hospital with us, Madelyn said to several nurses: “This is my Uncle David. He’s funny.” David is one of my oldest, most loved friends and he visits us in Anacortes every year. We’ve been making fun of each other for over 15 years now and it was a good distraction from my constantly worried brain.

Friday was our LAST DAY of Delayed Intensification!!!!!!!!!!!!!!!!!! Oh ya! Let’s party. Uh huh! Wooohoooo!!! Madelyn has been practically side effect free. Last week I did not have to give pain meds or anti-nausea meds even once! Her main difficulties have been a bladder infection (totally cleared up in 2 days and she just finished her 7 days of antibiotics) and low counts. The low counts are to be expected, very typical. We had a blood transfusion scheduled for Saturday, but her counts were ok on Friday and it was canceled. We went in for a CBC again today and her numbers are still on a downward trend. The doctors are telling us to expect this for 7-10 days following the ARA-C chemo she received on Friday. Her counts today were:

Hem 23.7 Plat 114 WBC 1.0 ANC 340

Her threshold is 21%. If her Hematocrit (red blood cells) gets to 21 we will transfuse. The doctors think this will most likely be necessary. We go in for another CBC tomorrow, Wednesday. Thursday we have another CBC scheduled, Physical Therapy, a doctor’s exam/visit and most likely a transfusion.

Her ANC is still incredibly low. So we continue with lock down; we are not going anywhere. This is haaaaard for all of us. We are a busy, traveling, moving family. We never sit still. My girls are very social beings, like me. They love to meet new people, see new places, experience new things. We have never been a stay at home family. I love it when we go out and the girls start their own conversation with people… telling them their stories, asking people questions, being very direct, honest and curious. Madelyn’s famous line is “Did you know…. “ and then some Madelyn fact-oid. She completely fills up a room with her personality, dominance and sincerity.

We are driving each other crazy. She already knows me and how I work. She needs new people and friends. I hope, hope, hope this won’t last much longer. Again, it was great for her to have Uncle David here.

So in summary, we are done with Delayed Intensification, or the “Hard Part” as we describe it to Madelyn. We are now waiting for her counts to recover or rebound from this intense chemo time. We have two weeks for this to happen for her to stay on schedule. Her first (HOORAY!!!!) day of Long Term Maintenance is scheduled to start on May 31. This is the phase of therapy that will last for two whole, long, years, but will be relatively easier. It will include only monthly visits to Children’s Hospital rather than weekly. I also hope, hope, hope that we will start this on time. If her numbers rebound then WE CAN GO HOME!!!! We are all so anxious to return home. I desperately need a return to work, my home and a normal day. This limbo world is not for me. My brain feels constantly fuzzy, worried and unable to make decisions. I am a decision maker. This cancer mind consumption is not good for me.

Heading out of hospital with bucket of miscellaneous neccessities: wand, horse, a rock, a ball, necklace, pad of paper and pen.

Playing with her new IPad.

Heading off to the hospital...

Sitting in infusion room with Uncle David.

LAST DAY OF DELAYED INTENSIFICATION!!! Dance Party and BBQ with David, Sophia and my parents.

Snack of Pirate Booty.

Showing off her moves while singing to the music...

Serious move here...

Luxurious accommodation at the Kuhnlein Apartment. The girls and I tromped downstairs every morning wayyyy before David was ready to open his eyes. Our oh-so-fabulous blowup mattress basically fills the whole living room. The three of us sat on the couch staring at him each morning while I drank my coffee and the girls watched their morning cartoon.