Madelyn Jill: April 11

Madelyn’s counts were low today. Way low. As expected because of the intense chemo she is receiving now, but still not fun to hear.

Hem 42.3 Plat 216 WBC 1.4 ANC 426

With numbers like this she won’t even be going to the grocery store with us - event for a quick trip. We will be in and around the apartment. Period.

She had her last dose of the Red Devil today. She is not feeling great, but not vomiting. The Zofran (anti-nausea) and oxycodone (pain from Vincristine) are sufficiently doing their job. I have to give her the allergy meds every six hours even over night. I have organized the anti-nausea meds to be given at the same time; so she will not get behind on dosing. She is having trouble with strength in her legs, but not a lot of pain at the moment.

She is more anxious and scared since the hospital stay a week and half ago. She was upset and crying during the accessing of her port today. And when that happens it ramps up her allergies. Every time she is upset, physically active, takes a bath, eats - her allergies flare up. The doc’s are saying to expect another week or so of this. So the complicated pill schedule continues.

Next week her body will have a “rest week” with the hope that her counts will recover before her most intense two weeks. The weeks of 4/25 and 5/2 will be BRUTAL. We got the schedule for the first week today. I am anxious. I am worried. Check it:

Monday: labs, doctors visit and spinal tap with chemo in her central nervous system

Tuesday: ALL DAY infusion starting at 8am

Wednesday: infusion most of morning

Thursday: infusion most of morning

Friday: infusion most of morning

The infusions will all be brand new chemo meds for her. They will most likely keep her accessed this whole week. In other words, they will not take out the needle every day. They will send her home with the needle and tubes in so that she doesn’t have to get poked every day. I’m not sure how this will go over with Madelyn. She does not like being accessed. She walks hunched over with her hands protecting it, she constantly looks at the IV pole with her eye brows scrunched together, she is scarred.

So more to come on all that.

The last several days have been good besides the allergy flares and some occasional times of not feeling good. Her best friend Alaina came down with my good buddy, her mom, Amber on Sunday. They also brought Sophia with them. I was overjoyed to see my baby girl. A whole week I had been apart from her! When she came in she walked over to Madelyn, gave her a hug and said “I missed you Madelyn.” I thought my heart would break.

So wonderful to have visitors... we were both missing home and family and they represent both to us. We just hung out at the apartment as Madelyn wasn’t feeling terribly well, but it was GOOD.

The very best part of the day was when our family was finally back together again! About 5:30pm Peter arrived! We were all apart a whole week. I know I’ve said it before, but truly, home is not four walls and a roof. It is where love is. Wherever Madelyn, Sophia and Peter are is home for me.

Boy, talk about marriage stressors eh? Doesn’t the saying go: if you can make it through traveling together, remodeling a home and having kids your marriage can withstand anything? Well, add cancer to that! I have never been more in love with Peter than right now. We can still find things to laugh about, photography projects to talk about, discuss places we both want to travel too, remodeling hopes for our home, etc - all in the midst of figuring out the logistics of life with cancer and worry over our baby girl.

MJ wanted me to take this picture for you all. She really loves these bears. The one on the right is from an old high school friend of mine, Danielle Hansen-Becker.

... and she wanted you all to see this one too...

Look at the hair that was growing back in from when she lost a bunch in December/January. She is starting to loose hair again now...

So MJ and I had major craft week - or "Projects" as she likes to call them. I think that word came from Ashley :) Check out the crowns we made and the wood painting set was a huge hit (good job Daddy).