A great update :)

Madeleine with her twin! 

I am SO thrilled to announce that Madeleine is gaining weight!

Since April, she has not budged even a fraction of a kilo over 6.8kg; she has steadfastly remained here, which has been so frustrating because that was her weight when we first brought her in through the emergency room at 11 weeks old, my slightly chubby baby of 2+ months old. Now we are quickly approaching 10 months old and she's a little skinny bean pole :) We knew this would be the case; I suppose it's just being the mom in charge of feeding her that I have been hopeful she would start gaining weight already. 

At Tuesday's clinic appointment, she weighed in at 7.2kg (15.75lbs)!! I personally hate scales. I finally broke down and purchased one because I wanted to know how she was doing. Today she weighed in at 17lbs on the home scale. She has also grown to 28 inches tall.  This totally explains her odd behavior over the last week. I remember when Annalise was 9 months old, she too quit sleeping through the night and would wake up crying for no apparent reason other than growing pains, and Madeleine has evidently been doing the same thing. The other odd behavior she is doing is basically refusing to be put down. She wants me to constantly hold her. Even the Moby isn't working as well, for whatever reason me carrying her strapped to my chest isn't the same as "holding" her. To be honest, it's driving me crazy. Probably because I'm not having great success in teaching her to take rice cereal, baby food, or a bottle she is still just breastfeeding, so again she's attached to me constantly. Tomorrow [Thursday] she has her initial occupational therapy assessment and we begin therapy next Monday. Her doc and NP are both very hopeful that OT will help a great deal and that soon she should be more comfortable eating. I'm still trying to figure out how a therapist plans to teach her...? I'm sort of scratching my head over this one, but I'm looking forward to learning something new and helping Madeleine make progress in this area, for a number of reasons. Fingers crossed, prayers requested- she's going to get this and get on with it like everything else :)

Classic Cars Show Benefit for Madeleine in Covina

I have said many times that angels come from everywhere, where you least expect them. Madeleine has several! At least I consider those who have made it their purpose to do something for her those angels - whatsoever you have done unto one of mine, you have also done unto Me-Matthew 25:40

When we first shared Madeleine's journey before her in January 2012, a mere acquaintance - a good friend of good friends - was so touched by Madeleine that she immediately began working with a small family-based organization, Love from Lexi, to see how she could help. This effort has blossomed into a community collaboration event taking place this Saturday evening. Thank you Yesenia Flores & her husband Omar for opening their restaurant Manny's El Loco to the Real Classics Car Club and Love from Lexi Benefit to Honor Madeleine. We are very excited to finally be attending one of the events for our baby girl. 

::SATURDAY, JULY 21 - 4:00-10:00PM
845 W Cypress Street, Covina, CA:: 
Classic cars, motorcycles welcome for entry; there will be a Live DJ and raffle prizes; we'll be selling Dear Madeleine t-shirts for $20; Manny's El Loco Restaurant is featuring a $10 Burrito plate with a medium drink and will donate a portion of sales to benefit Madeleine. Contact Info & Donations: Yesenia (626) 339-6025

NO EVIDENCE OF DISEASE!

"At some point in the future we will remember our biggest challenge and look at it as our biggest success." - Bianca Olthoff
I'm confident that one day, this Journey will be our biggest success: as a couple, as a family, as parents.
Today it was CONFIRMED, without any shadow of a doubt, that Madeleine has eliminated the cancer from her body. I knew it to be true; I had faith it had been done. Today it became official. 


Grow up, Little One! God has saved you for something greater. You have always been our angel, here on earth to teach us about His Love, patience, grace, and more than anything, FAITH. We love you Madeleine!!!!!

The last week was great spending with Nana & Papa - we ate good, we laughed, we talked, we hardly slept! So sad to see them go home Friday afternoon. 

We were very happy though to finally skip Madeleine's Friday clinic visit! Thursday labs came out really good post-transplant and our NP has shared with me that she really thinks Madeleine is on the upswing and recovering nicely. Dr Davidson is back next week so we'll be happy to see her as well as to receive the final word on Madeleine's belly ultrasound and the spinal tap from Tuesday to confirm she has no evidence of disease post-treatment. We're still trying every day to take in some baby food; as of last week I received the authorization for occupational therapy to help her learn to swallow solids. Evidently the brain has a way of storing information without the person thinking about it; it's very likely that she has learned not to swallow as a result of the pain caused by mucositis sores in her gut during treatment. Nana and I brainstormed some ideas such as using a pacifier to help her keep the food in and perhaps seeing if she'll take very very thin rice cereal through a bottle or sippy cup, anything for some supplemental nutrition. I used to think that pumping every few hours for 2-3 weeks was tough in order to keep my milk for her when she was on IV nutrition; it's harder now being her only source of milk since she's not taking much interest in the cup yet and won't even humor the idea of a bottle if I'm within earshot. She's not malnourished or anything, it would just make us all very happy if she could start to gain some weight.

This past week I joined a parents support group of A.T.R.T. children and it has been educational, encouraging, as well as emotional. To hear of the success stories of children surviving 1, 2, 5 years post-treatment - that is amazing!!!! I think it gives us all hope for our warriors. I have to say when we were grieving over Madeleine's diagnosis and just coming to grips with what we were in for, and then learning about her treatment protocol, we put our full faith and trust in our medical team especially knowing that Dr Davidson had comprehensively consulted with the nation's leading docs treating ATRT on Madeleine's condition (Dana-Farber Inst with Harvard, CHOP, CHLA, etc) and really didn't ask about what other types of treatments were out there. Being a part of the group has reminded me that no two children are the same, and what works for one will not work for all. I've learned that Madeleine's tumor (overgrowing her pineal gland) is one of the most rare of the rare, if that makes sense; the majority of ATRT tumors are in a different part of the brain, closer to the skull. So many of the children in the group have undergone or are currently going through radiation, a topic we have had anxieties over in the past. Our docs have come to a consensus that Madeleine is NOT a candidate for radiation at this juncture. The brain tissues surrounding her tumor area are so important to her quality of life and being so young and with so much development left to take place, it's just not worth the consequences now. God forbid she should have a relapse at a later age, radiation may be an option at that time, but of course we continue praying that we'll never have to face that choice. As I mentioned in my last post, these parents are connected beyond acquaintances for the simple facts of our kids, all of us enduring this for their sake, joys and griefs, happy and devastating tears.

Little Madison (Maddie) Star will be honored on Tuesday, 7/17 for her brave fight and inspiring life in Miami, FL. May God rest your soul, little one! and bring peace to your parents.

Spinal Tap & ATRT

Nana & Papa arrived mid day on Tuesday to join us in the PACU (Post-Anesthesia care unit) after Madeleine's spinal tap. It's a huge ordeal for a 5-10 minute procedure, for both the girls considering this time Annalise had to go with us. Madeleine cannot have anything by mouth (nothing to eat or drink) for 6 hours before the procedure, and it takes approximately two hours afterwards for the propofol to wear off, to nurse and not throw up and get ready to go home. Big sister was so good, we stopped for Yogurtland even before nap as a reward.

Nana and Papa are such a huge part of our lives from so far away: they inspire us, the counsel us on many levels, they love us, and funny enough, they are the most like us; Jeff is very much like Papa and I am JUST like my grandma. Perhaps this is one of the biggest reasons we enjoy their company so much. As much as they have been a part of Madeleine's journey, this has been their first opportunity to experience first hand Madeleine's happy spirit, her laughs and screams of excitement, and her overall sweetness. We are all very happy they've come to stay with us for a few days this week.

Our last post of Sunday, I wrote how I was so happy for Madeleine's treatment to be over, her overall success, and how I long for people especially close to us to fully grasp her achievement and to never take her for granted. The very next day, on Monday I was reminded that being an ATRT cancer mom is so incredibly difficult since we all jump for overwhelming joy when one of our children has success, big or small, in their fight against the disease; likewise, I think we are all touched beyond our heart to the very depths of our soul and gut when one of our children has earned their angel wings.
Little baby Jude Chauvin Smith in New Orleans, may God rest your soul.

Nana & Papa come to visit

Nana is happy :)

Madeleine enjoying Papa bouncing her legs

First meeting adoring Nana's rings

Day+39: two weeks of busy

I've attempted to post an update several times over the last few weeks to no avail, due to this or that. I'm including my previous drafts, trying to encapsulate the last two weeks since our last post.

Our quiet mornings together I cherish. I used to weep, sometimes exploding into tears, as I held Madeleine close to me in fear ~ that I better remember this feeling, this moment, if this child was to be called to heaven. It's an incredibly lonely and gut-wrenching feeling to fear for your child's life. One morning my weep turned to sobs and I called Nana. She prayed with me, counseled me in my faith, shared with me her faith & belief that Madeleine is healed for good, and to check my despair because it has no place in our home or my heart. I prayed quietly to myself for days after that and the Lord gave me peace as we waited.

Thursday night (6/28) after the MRI is one of the longest, though I was so exhausted from normal life. Daddy had difficulty getting to bed & an even harder time sleeping. I assured him "she's ok; she has to be." I felt as if God had already told me so that I could say those words with such confidence. Since we couldn't sleep we awoke late and rushed out of the house Friday, June 29th to meet with Dr Davidson for the MRI results. She said, "Madeleine's MRI looks absolutely beautiful, and her ventricles look even better than before, she looks perfect."

We couldn't have asked for better news.

The ultrasound was completed last week, and we expect the spinal tap on Tuesday. With the anticipated results of both of these tests to be negative, Madeleine can "officially" be termed IN REMISSION. What a wonderful feeling, a sense of accomplishment I feel for her. This tiny little girl is the bravest, most inspirational person I have ever known. We know our lives are never going to be the same: she'll undergo surveillance every 2-3 months for years; she'll have assessments and therapies of various frequencies; she will also continue to have huge achievements along the way, whether "on average" for her age or otherwise. The point is, she's alive! she's well! she'll get to grow up!!!!!!

I am so thankful that her treatment went as it did; it could have been so much more challenging on so many levels. Sometimes I think she made it look too easy, because some people don't seem to "get it," what Madeleine has really achieved and the odds that she has beat thus far and will continue to overcome. A few years ago, hardly any of these children survived. Madeleine has demonstrated what a warrior she truly is, that with her circumstances, she was able to beat the terrible disease that we can't seem to fathom why...why her? why any child? I'll have to ask God that when I get to heaven.

Our latest challenges have been food and gaining weight. I really want to avoid a feeding tube if we can help it; one less thing to maintain. She hasn't really began eating food yet, though we try every day. She's taking a little longer to grow accustomed to food in her mouth but so far so good, just slow going. It's definitely a test of my patience, since as a result, she's still exclusively nursing and still vehemently refusing a bottle if she can hear, smell or see me. Madeleine has steadfastly remained at 6.8kg (about 14.75lbs) and hasn't budged over that. This was her weight when she was first admitted for the emergency surgery in December at 12 weeks old. At 9 months, an average baby girl of 27 inches should weigh closer to 18 pounds, though we anticipated she wouldn't be anywhere near average in her growth as a result of treatment. Her height hasn't slowed down, so she could be long and lean for quite some time. However, I and the docs will be much more comfortable with me going back to work when she's able to put on a little more weight.

Other challenges have mostly been with big sister. Madeleine is happy as anything to watch her and laugh at her, just to be around her. Sister on the other hand loves Madeleine, but is definitely experiencing some of the normal 3-yr old stuff as well as adjusting to a new sibling, some jealousy, and even some aggression. She's getting better the longer that we are home, nonetheless it's very trying for two sleep-deprived parents. We still haven't quite managed to make up for lost sleep and I know I feel like I've aged about 10 years in 6 months. I guess all we need is time. Time will heal all things. And I plan to hire a high school girl to help me around the house! At least for the summer.

Momma & Madeleine after haircut 

before the cut 6/20