Sleepy Sunday

Madeleine is making little moaning sounds in her sleep right now. She fell asleep eating and I haven't managed to convince her yet that she's finished. She woke up around 11am to get her medicine, then took a nap. She's only woken up 3 times all day to eat. Don't worry, I already called the nurse to come out for an exam and discuss again how she's doing. Her heart rate and breathing are still both very steady, a very good sign. Her skin stays cool though she stays wrapped in a blanket and she's slightly pale, but overall doing pretty well. Her belly has some definite roundness just under her ribcage not unlike when she had the ileus which has us slightly concerned. The nurse is thinking that it could be one of the tumors pressing in her spine causing it. Dr Davidson will come here on Wednesday to see her so I'm sure she will also let us know what she thinks at that time. Madeleine has also starting using her right hand again mostly because she figured out that if her fingers on her left hand are unable to grasp, she can use the outside of both hands to pick things up. She is so smart.
Madeleine had several visitors on Saturday that also could have taken a lot out of her causing her to be sleepy. Annalise too spent most of the day in bed and not eating too much. That kid is always going 100 miles a minute so we know she's really not her best when she voluntarily spends the day in her bed. After a little Tylenol and cold medicine this evening she's back up and playing Minnie Mouse on the iPad so she must be feeling better. We took it all as a cue to stay in sweats today, hang around the house, doing laundry, loving each other. I love my family.

She Laughed

Daddy's birthday wasn't exactly a celebration but we were together with only family, no visitors or medical people. The best part really aside from sleeping in way too late was Madeleine was happy and comfortable. She made noises at Mickey Mouse, one of her faves, she smiled! And she giggled in her Mimi's arms while looking at pictures of Daddy, Mama and sister. Completely warms my heart to see her true spirit shine through her disabilities. Our girl is amazing!!!

Christmas Part III still to Come

The last few days have been good and challenging. Madeleine is doing ok; as we mentioned she has a different challenge every day but that seems like business as usual. Her main complications are with her digestion. Now that she has a regular routine of medications and a laxative and a stool softener are included, she's managing to do her business more regularly but not without discomfort or trapped gas pains also regularly. Thank goodness for heating pads. A new part of our daily tasks is to keep her tummy warm and massage the gas out, including Christmas morning and Big Sister was very good with her patience until we could open gifts. We felt so blessed to be able to give them so much this year, so much in fact that they weren't able to open them all! Annalise got stuck on a favorite toy and Madeleine fell asleep, so the gift unwrapping continued on the 26th :) super blessed. Oh, and they still aren't done- hoping to wrap it up by Friday, Daddy's birthday.
We also met with the hospice nurse finally. Jeff and I feel like we've managed Madeleine's care well on our own and because of our resolve to keep life normal, we're keeping it together surprisingly well, which we conveyed to our new support team. We have told them that our primary objectives for hospice really include on-call assistance for the just-in-case situations and ensuring Madeleine is comfortable by most means necessary; psychological assistance for Annalise, and the professional support when the inevitable occurs. We are extremely realistic about what's going on and because of that, we also quite certain we will fall apart when it happens.
It's the absolute strangest sense of existence, the unwelcome anticipation or unknown of "when," where life is almost suspended in the air like an acrobat. Yesterday was a good day mostly, and that is mostly defined by Madeleine being comfortable and happy. Unfortunately one of the first things to go has been her personality so we absolutely revel in her talking noises when she's feeling better. This morning she had a great deal of difficulty picking up her pacifier that she allowed to fall from her mouth and it truly upset her. We're pretty confident she's smart enough to know what she wants to do and is truly frustrated that her body cannot do what she wants. Since last week her right side had already begun to go loose, though she had good control of her left side. This morning's episode was her left hand now starting to lose control of. At least the hospice nurse is able to check her over and assure us that as of her exam, her breathing and heart rate are steady; while other things may be affected right now, we don't expect her to stop breathing tonight so to speak. In all honesty, we're praying for a peaceful, serene experience for her rather than something abrupt, traumatic or painful. This is the extent of our "preparation." We're just not ready to go there until we have to. While we will always believe in miracles, we acknowledge what we see before our very eyes, hold her close every night to keep her warm and feel her breath, to make her feel our love for her, to reassure her that we trust her, and look forward to the day we see her happy, healthy and pain free. This is truly a debilitating yet beautiful existence these days.

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.