Madelyn Jill: Jan 3rd and 30 days....

2012 was a very special holiday season... both Peter and I are having a hard time deciding to take down the tree. We had 16 people for dinner at our place on Thanksgiving, 20 people on Dec 22nd (my family) and 12 people on Dec 24th (Peter's family and his birthday dinner)! We also had three Nutcracker performances (Madelyn), the Winter Celebration ballet performance (Sophia), cookie baking marathons, Christmas parties, caroling, a skiing trip to Leavenworth ... and not to mention Santa!!

This is the first day I have felt like I can, somewhat, breathe.

I say "somewhat" only because poor little MJ is feeling badly from her chemo today. She had her infusion on Monday. When she feels bad, I just can't help but feel anxious and sad.

But I am happy to report that I have NOTHING to report!!!

She is still doing well and continues to inspire us daily. She is the reason we try to make every single day a happy and loving one with lots of trust and laughter.

Man oh man. What is this joyous, energetic, vivacious girl gonna be like when she isn't on daily medications??? Each drug has listed either "can cause dizziness" or "may cause drowsiness;" not to mention, "can cause nausea" and "may cause belly upset."

Dec 3rd counts were good with no chemo increase, but steroid increase due to growth.

Hem 38.4 WBC 1.8 Plat 213 ANC 1055 ALT 90

It was a really hard week. Some "Hard Weeks" are better than others and this one was a particularly bad one. She stayed home quite a bit...

Monday Dec 31
Hem 37.3 WBC 1.9 Plat 217 ANC 1074

She is feeling poorly this week, but much better than the last go around. Emotionally she is ok (not herself, but ok) and she is having quite a bit of jaw pain, back pain and leg pain (all normal from the chemo infusion).

The exciting part of this month is that we are officially
COUNTING DOWN to THE END!!!!!!!!!

Wow.

I haven't figured out how I feel about all this... other than straight-up overwhelmed. So I am going to force-ably focus on making it special for Madelyn. We've made a large countdown poster for the house and we are asking people to help make Feb 1st exciting. If you could please mail a picture or a card to BOTH Madelyn and Sophia and congratulate them on a battle well fought and won! The goal is for your note to arrive on Feb 1st - her last day of chemo! We'd love for them to be overwhelmed with love and congratulations. As you know Madelyn is our superhero and Sophia is her strong, super supportive side kick. If you don't have our address, email me: lisa@kuhnlein.com.

We don't feel like we can have a big party on Feb 1st because she won't be feeling very good. On January 28th she will have her last dose of Vincristine, her last spinal tap to put Methotrexate in her central nervous system and she will begin her last pulse of the evil Dexamethazone (steroids). During this "sleepy room" visit she will also have her end of therapy Bone Marrow Aspirate where they will bore a large needle into her hip and extract her bone marrow. That marrow will then be tested for any signs of remaining Leukemia. I know, its amazing that it could still be there after 2 1/2 years of chemo but Leukemia cells are sneaky and know how to "hide."

Shortly after chemo ends we have a celebratory trip to Hawaii planned to relax and have fun together! Then on Feb 22nd she will have an operation to have her Port-A-Cath removed from her chest. March 4th will be her first post-treatment follow-up visit which will include a standard echo cardiogram to double check her heart functions. It will be analyzed against her beginning treatment echo to make sure the chemo has not damaged her heart.

For her January 28th bone marrow aspirate we are insisting on special testing. Madelyn's protocol only calls for the marrow to be analyzed under a microscope. We are asking for a more sensitive measure - one that checks for MRD (Minimal Residual Disease). Here is the reason why: if Madelyn were to go off treatment and her leukemia came back it would come back with a vengeance; her fight would begin again and would be much, much more difficult. She has suffered enough. I do not want her to go through that again. Ever.

Madelyn was in remission five weeks after treatment began and all 800 days of chemo since were solely to guarantee she stays there. Scientists know, unfortunately through trial and error, that residual disease can remain in the marrow after remission is achieved and if relapse occurs it is much more difficult to eradicate.

If they do find Leukemia cells in MJs bone marrow, in these very low percentages that MRD testing provides, we will be entering uncharted waters for our Oncologist. There is no standard protocol for this situation.

SO. BE. IT.

Our Oncologist, Dr Jessica Pollard, is not fighting us on this request, but simply supporting us and letting us know what decisions need to be made.

With that being said... I am keeping my mind and my heart certain that we are truly at... 30 more days...

Front of our Christmas Card 2012: