It's a Wonderful Life

We feel like George Bailey.

We've been home two full days now, and it's been nice. It's good to be home. Saturday night after discharge we had a wonderful surprise: dear, sweet friends of ours drove clear across town with armfuls of gifts for our girls. Just showed up on the doorstep, gave hugs, kisses and well wishes. We are truly blessed beyond our comprehension. Sunday Daddy went out in the crowds and finished Christmas shopping for our little lambs, while Annalise helped me take care of sister. We all climbed onto my bed and we talked to her, sang to her, made her smile, and tried not to squish her under great big hugs. 

Life is normal to Annalise, and we've been saying more prayers throughout the days. I want her to have a concept of heaven before the inevitable takes place. Our greatest concern next to Madeleine is how Annalise will feel, think, act and question. For both the girls we feel very strongly about life being as normal as possible and giving them the best Christmas ever as if we did not have the knowledge that we do have. We have had so many people reach out to us with prayer, well wishes, tears, offers to help- overwhelmed with support really, and we appreciate it so much. And we have also tried our best to remind everyone that Madeleine is still with us and continues to bless us, and we do not cry (try not to anyway) or mourn her now- there is a time and place for that and it isn't now. She is still our Madeleine Sunshine and continues to bring us so much joy, despite any physical effects we see, medications we give, extra things we must do for her. She's still our baby girl.

This morning we discovered she had stopped urinating, something we are aware could happen soon. She also hadn't had a BM since Thursday morning, both from the tumor in her lower back and the constant morphine. We got out the heating pad and began massaging her abdomen, something we had been doing sporadically anyway that was now quite necessary if we wanted to avoid the emergency room on Christmas Eve. Within minutes she had both movements, and we decided to get her into a nice warm bath to comfort her. I took her in the tub and held her between my arms and legs where I could still massage her belly in the water. After about 10 minutes, her system finally kicked in and like a tube of toothpaste, I was able to massage most or all of her blockage from her belly. Thank God our remedies worked! After a nap she had another BM and another nap, most of the afternoon in fact. The doc says she's ok just likely so tired from all the discomfort. When she finally woke up late and Daddy changed her diaper: SHE STOOD!!!!!!! After several days of not crawling or standing from the inability to do so, she stood. Jeff called to me from the bedroom to hurry, and I ran to see it with my own eyes, and I burst into the happiest tears in a long time. I hugged her and stroked her hair, and balled my salty tears all over her cheek telling her how proud I am of her. She is so amazing!!!

My very best friend also came today bringing items to help us and bless us, most notably her very good camera to help us capture what are soon to be very cherished memories. Our Christmas is shaping up to be exactly what we hoped for: precious, happy time alone together.

May God bless you and your family this Christmas.

A Speeding Train cannot be stopped

We sat chatting, I was nursing Madeleine at her bedside when Dr Davidson returned; she had already gone home for the week.
The worst is reality.
The spine MRI shows that while we were radiating the original tumor bed, the disease metastasized to her neck and spine, the spread splattering like paint. Much of the disease is below her waist and compromising her lower body. In effect it's wrapped around get spine and can slow or stop her swallowing or breathing, her bowel movements, leg mobility, etc.
Just two weeks ago she was pulling herself up at the coffee table or on my pant leg. She followed me around the house for the last month demanding to be carried. Today, tomorrow, next week I will not mind so much.
No more surgeries, it's too hard on her and wouldn't cure her. No more chemotherapy, it's too toxic. No more hospital, she deserves to be home with her sister in the comforts of home. We're taking her home for her one and only Christmas and making it the best in all of history. We will cherish her and "squish" a lifetime of our love for her in a few short weeks, if we're lucky.

Back in the Hospital

Last week when Madeleine finished treatment I mentioned to her doc that she had just started to get really crabby- something we expected. What we didn't anticipate was a chain reaction of all side effects in just a few days making for a very unhappy baby and a serious test of patience.
The biggest of these has been Madeleine's inability to rest at night. It started just waking maybe twice through the night and has progressively gotten worse every sequential night to now waking every 30-60 minutes over an 8-10 hour period. This has been happening for the last 7 nights in a row, which are typically manageable for babies. However, Madeleine awakes in a fit, whimpering a little, then crying and kicking or rolling, and ear piercing screaming. It's gut wrenching.
We took her to the ER Tuesday afternoon; after 7+ hours they ruled out hydrocephalus complications but still offered no solutions to the crying baby we felt was clearly in pain. Two more nights and in clinic today they moved us straight over into the hospital for tests ASAP.
I'm beyond exhausted at this point:
Worst case scenario- the AT/RT disease spread or a new tumor in a new place causing these neurological symptoms.
Slightly worse scenario: a rhabdoid tumor found in her kidney causing the pain & elevated blood pressure.
Best case scenario: residual pain and discomfort, possible swelling in the brain from the radiation. This can be treated at home with medication.

The Thursday before Christmas 2011-December 22- is when this nightmare began. Oh, the irony... In some ways Jeff & I both had an intuition about this. But we're also extremely hopeful that this too shall pass and our little girls get to have Christmas together in our home in our pj's. Praying the docs figure it out quickly and give baby girl the pain relief she needs so we can all sleep at home. She's hooked up to an EEG tonight to rule out seizures. Praying for the best for Madeleine. Xoxo

Radiation Complete

Each morning for the last 6 weeks Madeleine's nurses would almost race to see her first, to have Madeleine exclaim "hiiiiiiiii!" at them and seemingly make their day. They frequently took turns carrying her, playing peek a boo or letting her bang away at the computer keyboard on their lap. Not always playtime but enough down time waiting for our turn for all the nurses to get their "baby fix." Really- so cute.

Last day of radiation

This morning was Madeleine's final radiation treatment, and as usual she stole the hearts of her nurses who are happy she's completed and sad to see her go. She was presented with a Certificate of Excellence, a gold medal and some cute new toys. =)

Tomorrow we have regular check up in the clinic with labs and Madeleine is done for the week on Friday when she finishes up this last chemo dose. She has lost a tiny bit of weight from the loss of appetite and the little bit of nausea and vomiting she's had; she has been a Crabby Patty the last week and sleeps a little more- all to be expected, even sooner than when these symptoms showed up. We do expect all these to improve and quickly. She will have weekly checkups provided she is doing well without fevers or colds until January 10, her next scheduled MRI. She will go a full 30 days without any treatment so on the 10th they'll be checking to see if this treatment is successful. We of course are remaining prayerfully hopeful. It's one of those huge, huge things- extremely faithful people say turn it over to God, do not carry that burden; for the most part I think we do that. It's the extremely difficult part of knowing in your mind what reality is and Madeleine is in fact a recurrent patient, even if her protocol calls for radiation and we had to forgo it initially. Other babies on this protocol are about 6 months and 8 months older than Madeleine, were treated later in their little lives than she and immediately after stem cell rescue, and are to date both evident disease-free. That's the hope we're holding onto. There aren't any guarantees with this monster, other than how truly awful and devastating it can really be.

12/10/12 commercial kid =)

An Aunt of mine explained Madeleine's happy and adventurous personality as she knows and trusts in God that He is keeping her in the palm of His hand so she's not scared. In heaven or on earth, our babies are safe and trust in God. It's all the rest of us who are not as close to Him that fear. It's so hard to take a lesson from them!! But that's our age and time in this world... there is something truly amazing about their innocence. Sometimes it's very difficult to remain positive when you know other children with the same tumor are losing their fight or have lost. Two little girls called to heaven last week. That's just two too many. I don't allow myself to think about what if for Madeleine; she needs our positive vibes more than anything. However especially late at night my heart aches for these little children, their parents. Last night I was leaning on my elbow as I was reading a blog and about funeral arrangements, and finally realized I physically felt like I was being pushed into the chair with tremendous pressure, forceful almost. Whether it was the self-imposed weight of these catastrophes on myself, or truly the devil leaning upon me to infiltrate fear into my heart, it did not work. I felt like a true knight guarding her with my sword from the devil, she will not be taken or harmed on my watch, I'll be damned. Though I did go to bed with a heavy heart for my new friend I've never met in Texas who has valiantly come to peace in her heart over the cancer that invaded her precious 4yr old daughter and claimed her Thursday night. I saved one of her pictures last night so I can pray for her each time I see it.  I've thought about creating a photo "bouquet" of the angels we've known of along the way as part of everything else I'm saving or creating for Madeleine's journey in the effort of teaching her just how precious her life really is when she is old enough to understand. Most parents look forward to milestones so far into the future like going off to college & wedding days; we are keeping the hopes very high just to see her start kindergarten and have First Communion.

Please say a prayer for the mothers of little Kaylynn (California) and Hayden (Texas) as they grieve their princesses.