I have yet to finish a post- I have three drafted, none completed. Some days it is impossible to be "poetic" or strong, or inspiring. Some days the pressure is just too much and my thoughts are not comprehensive. We have reached that point in time where our real thoughts and feelings do not leave the confidentiality of our home because it's constant venting: anger, frustration, despair, bitterness, fear. The "why us," the "It's not fair," the "enough already!"
Many things have happened that I should share, I just haven't had the patience or filter to share with all of the emotions involved. I will catch up, I promise. The most important thing is Madeleine's upcoming treatment. For whatever reason, it took nearly two full weeks to get the plan decided and moving.
Beginning Thursday, Madeleine will have radiation therapy every single weekday for a minimum of 25 sessions. She will also be on an oral chemotherapy I will give her each day when she completes therapy. Praying to God we can actually have a Christmas this year....
The facts are that Madeleine is doing really well; she is healthy and strong, happy and incredibly mobile. All great things going into this next phase of treatment. She has healed rather well from the surgery, and all that is left is a half-shaved head and some minor facial paralysis that Dr Lazareff believes will heal itself with time.
She is still too young for radiation. The target age is 3 years old, and 5 years is better. We knew from the very beginning that radiation could be the worse thing for her; however, it's also the best weapon against the tumor. So what do we do? The fact remains that Madeleine is now 12- almost 13 months old- and in terms of development, she older and more developed than she was at 4 months old. The older she is, the better. The docs never want to do radiation on children this young, because no matter how you look at it, you are still destroying a portion of the brain that otherwise would continue developing into the wonderful, beautiful mind. However, without radiation, the tumor would grow back. Quickly.
Like good students we've researched on our own and put questions and challenges before our doctors to provide us with comprehensive recommendations. We have decided to move forward with photon IMRT radiation and an oral chemo called vorinistat, which they think is synergistic with radiation therapy. We'll begin with a standard dosing and special suspension form and watch her very closely. Her "planning session" was on Monday, and she had a CT scan of her brain so they can set up the consistent radiation therapy model. She will have at least 25 sessions, Monday through Friday, and be sedated for each and every one. She has to remain perfectly still in order for it to work, so they'll sedate her to ensure precision. This is obviously not Madeleine but it does give perspective to how she will look going into the therapy every day (which I do not see; it's traumatic for parents).
There is good to this phase: we will be on a set, consistent routine for probably the first time ever. I've read that routines are good for "extremely spirited" kids like Annalise. She continues to have challenges understanding all of the extra alone time and care that Madeleine gets, and for us as parents it's extremely difficult to give equally to the girls our time when once we put them to bed, we are alone with our thoughts and fears and frequently have trouble sleeping, as in, at least 3-4 times a week. Eventually it catches up to us and we are completely useless zombies at least one day out of the week. We're trying so hard to rest our minds and bodies so we can be better parents. It is a complete understatement to say this journey is challenging, as every parenthood is challenging. We appreciate the "you guys are so awesome" or "you're amazing parents" but the fact of the matter is no matter how amazing or awesome we appear to be, we still have a child hurting, struggling, frustrated. We had started the ball rolling on her therapy to help her deal with her extreme 3yo emotions that unfortunately took a side burner to Madeleine's surgery and recovery. With Madeleine beginning regular, outpatient therapy it could be the most opportune time to restart therapy for Annalise and introduce her to her social environment she seems to be craving and could be the piece of her confusing puzzle that will help her the most. Halloween is tomorrow, and I have nothing for the children. Call it laziness, call it last minute, call it just not in the mood to try to put on a celebratory face. We really are trying to figure out how to get out of this funk. Annalise wants to be a brown puppy dog, namely Copper from the movie The Fox & The Hound. I'm sure with a little resourcefulness I can throw something together for miss Madeleine, although one of my very good friends suggested she should really be her own superhero :) an idea I absolutely LOVED- of course until the new tumor showed up :( this roller coaster just doesn't give up sometimes.
So this afternoon, we had the wonderful pleasure of hugging and meeting face to face Jana & Cheryl from the Jessie Rees Foundation and spending almost two hours sharing our girls and Madeleine's story with them. They mobbed our girls with more toys than ever! It was like Christmas in October!! :) We were smiling ear to ear to see both Madeleine and Annalise so excited and overwhelmed at all the goodies. We feel like they deserve it, and so much more than we could only hope to give them. As the evening has progressed on, both the girls are having so much fun playing with their new toys; Daddy also got a new toy- a new TV! Which of course he set up this evening, and the girls also got a TV in their room for their Disney collection. Blessings all around. Jana & Cheryl brought goodies for Mama too- a mani pedi gift certificate, a paid appointment for a housekeeper! and a great tall NEGU acrylic cup for my iced coffee I will proudly take to Madeleine's radiation treatments to help spread the word about this wonderful foundation.
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