Big Sister's birthday, 4th of July, Life Goes On

How to begin....

I want to do an un-sad update. I don't know if that's possible. My perception is misconstrued. The other day I shared how and what Annalise prays for. What I interpreted as her heartache and missing her sister, many perceived as faithful. I don't know how long that lasts, or if it ever goes away. Perhaps the closer we get to reuniting with Madeleine, the less it will hurt and always be understood as pain.

Big Sister just had her 4th birthday. It was a lovely two days just the three of us and new experiences. Dolphins are her new favorite animals after a whole day at Sea World and seeing them up close and personal. Sometimes it's been difficult to give ourselves permission to be happy, to enjoy those moments. And then when we do, and our minds play cruel tricks on us: Annalise never got to have a birthday with Madeleine in it. Her third birthday was very important to us to spend alone time with her after so much time apart living at the hospital, we decided then it should just be the three of us. It hadn't occurred to us Madeleine would be in heaven for the fourth. Some things we can't help regret.

This Fourth of July had a special highlight: big sister finally has the confidence to swim on her own. She still hates the loud booms and noises from the fireworks, but a long day in the pool nonetheless. Last 4th of July Madeleine was home from the hospital just 3 weeks with clean MRI results, and to be honest, I can't remember for the life of me what we did that day. The only thing I do know: it was the only one we had with her.

6 months. Tomorrow (Tuesday)  it will be 6 months since we held her last. I wish it were longer than that. I want to look into the future, one day closer at a time, instead of looking back. Looking back included her in our arms, but looking back can quickly become a tangled web of pain, suffocating, despair. Up until now I have never experienced the painful sensations of suffocating: anxiety times 5. Perhaps like an allergic reaction. My throat constricts and nearly chokes me. 

I can only describe my own sorrow, though I know Sister misses her immensely as well. Just recently she woke up very early and refused to go back to bed. I turned on a soothing tv program so she could lay on the couch and relax, it must have been about 6:30 am. About 3 hours later (yes, I know, terrible of me) she exploded into a fit when I turned off the television. She cried and screamed at me, stomped her foot, and cried some more. Upon calming her down, she was finally able to tell me that "the baby channel helps me learn about my sister. My sister is a baby. I miss her Mommy, I want to talk to her. And never again! I can't talk to her ever again!" My heart breaks for her. Though I know she won't ever forget her.
This afternoon we went for a walk and met neighbors down the street, two little boys, 3 and a half and 20 months. It was really the first time I didn't mention Madeleine when thinking of her, watching that little guy walk around with wide legs and that completely adorable way only he can say his big brother's name. I smiled and went back down the street, reminding myself that Annalise is here, she needs me every day, I love her more than life itself and I must never put her aside in place of my grief. I still have one smart, sassy, beautiful little girl to be the very best mommy I can be to her.

Easter and threes

It has been almost three months.

In the quiet of today's afternoon while the kids are napping, I'm taking the batteries out of the baby toys to put them into storage. They've been sitting in a basket in my room for 2 weeks. It was hard enough to gather them all together, to separate them from the life we so desperately tried to instill in Big Sister that were there to share, and separate them to put away. The truth is we need the space. I am being forced to put  Madeleine's memories away out of necessity. That was enough that day. I thought today I've got to get these put away already, it's just taking up space, cluttering. I made sure all of the power buttons and switches were turned off; the sound of her toys bursts me into tears every time. And one by one I removed the batteries from each little door. No more life in those toys. Unable to make any more sounds. And I'm going to put them into a plastic box and put it out of sight, just like I frequently do with my feelings so I don't have to feel how bad I hurt, how much I miss her, how much I wish I could hold her or hear her laugh or see her smile. Because every time I allow myself to feel it, a part of me dies inside, over and over again. I know God had another purpose for Madeleine, I just don't like it that she's away from me. One day here, the next day gone- I felt prepared, I felt like watching her suffer was the most unimaginable thing I would ever experience in my lifetime. And perhaps it was. Right now just feels like hell.

This Easter- a new one for the books, just like the one before it, and the one before that, and the one before that. This year our baby is in heaven, and we are heartbroken. To add insult to injury, the gorgeous cross her grandmother made for her disappeared from her grave site.

We all felt like a punch to the gut, another slash across our broken hearts. God help the person who took it, if that's what happened, because they clearly have no conscience at all, stealing from a child's grave. Jeff and I hope and pray it was the wind, and that we can still get it back. Grandma is on the hunt with the cemetery office if it was the gardening staff.

Easter 2012

Last Easter Madeleine was in the hospital, so we were too; Sister was 2 years old and having a blast at church and at the Easter egg hunt and family party- mommy and daddy who....

The year before that Madeleine was still the unnamed baby I was nurturing in my womb, trying to do everything right to make a healthy baby, and Sister looked so pretty.

Easter 2011

Easter 2010

And the year before that Sis was so cute in her cherry dress, and it was our first Easter as a family.

Just three short years. We went from three, to four, back to three. It just doesn't feel right to any of us to be THREE. And Annalise is three years old, and Daddy and I are both thirty-three - will the threes just leave us alone already! It must seem so dumb to anyone else, but to us- three is not our number. We always feel like four, and to us we will continue to be four, until God chooses to bless us with more to love. Right now it's tough, being three...
I have often thought what should become of this blog since we dedicated everything about it to Madeleine. To us she lives on in our home and in our hearts, and many people have told us in theirs too; what should I do now?

Unplugged

Madeleine's services were two days. Thursday, January 17th we had a visitation/vigil/rosary in her honor. Papa (Veronica's grandfather) delivered a wonderful and personal discussion about heaven and the fundamental being of human life. We firmly believe Madeleine is in the arms of Jesus. There was an incredible  slideshow of Madeleine with family, friends, caretakers- everyone involved in her life. We received so many compliments about how beautiful it was for us to share that. We also had a digital photo frame of many of the same photos. We brought it home and it's been sitting on our table unplugged since the funeral. This morning Annalise wanted to plug it in and watch it. She exclaimed, "ooh! look at Madeleine!" and many other phrases as she watched all of the photos come in and out. She talks to her randomly. She likes to "tell me a secret," and almost every time this past week, it is her memory of she and Madeleine dressed for Halloween as Dora and Boots sitting in her chair. She tells me Madeleine is in her heart, which is how I've tried to explain why Madeleine isn't at the mortuary anymore where she can visibly see her. She doesn't quite get the concept of the cemetery or why we go there. It's a learning process for us all.

On the Friday afternoon before the mass, our family gathered together one last time in the viewing room to kiss our angel, to adore her beauty in her human form. This was how I described that day to our group of AT/RT parents:

I can't begin to describe the range of emotions: sadness and loss when we closed her casket, peace and love throughout the service, Madeleine's love in the warm sunshine graveside; anger and fury when the casket was enclosed in the vault and lowered under the earth, completely breathless leaning over and dropping flowers in the grave; then victory and closure when the earth was replaced- we buried that f***ing disease in the ground where it can never hurt us again. I know it will take us many months until we are finally at peace, but today was a step in the direction toward healing.

I wish that feeling continued. Perhaps it will. After time has started to settle, and we've had to move forward with regular life through no choice of our own, it's a little like being dropped in the middle of nowhere in the middle of the night without a map. There is no guide for what we feel or how we feel it. I had never in my life experienced tears that just fall like rain without the drama that comes with crying until now. They just fall, and freely, without any control on my part. One of the hardest parts is people who do not understand that our mourning is a process and we can't just forget about it in order to deal with something else.  I wish it were that easy, and it's no excuse. I want to believe that they don't intend to be hurtful. And really, how can your entire perspective and life not be turned upside down by the death of your child? I get it; I remember the death of a close uncle and how in my grieving of his death, I found myself passing judgement upon his wife for changes she was making without asking or discussing it with her, asking her how she felt and how it was affecting her decision-making. I was also in my early 20s, so in some respect I will chalk it up to inexperience and immaturity, and now that experience is allowing me to somewhat give those people "a pass" and believe they don't know how hurtful they are being by vocalizing their opinions.  I have struggled with this, and Tuesday I received this message in my daily devotional: "Now when problems surround us and we feel overwhelmed by them, we all would like to escape from them even if it is for only a little while!  When we turn our problems over to God we can escape!

 Thus, just like king David who wrote; Though I walk in the midst of trouble, You will revive me;  You will stretch out Your   hand Against the  wrath of my enemies,   And Your right hand will save me.  For in the time of trouble He  shall hide me in His pavilion; In the secret
place of His tabernacle He shall hide me; He shall set me high upon a rock.
( Psalms 138:7 )            ( Psalm 27:5 ) 
For; The LORD will guide you continually, And satisfy your soul in drought, And strengthen your bones; You shall be like a watered garden, And like a spring of water, whose waters do not fail.                                   ( Isaiah 58:11 )
A good friend of mine shared with me the metaphorical parallels of us to the honorable soldiers of WWII.
A person is completely removed from everything normal and familiar, and thrown into extreme conditions unprepared and without much guidance and expected to be victorious. When the fight is over, those people are returned home incomplete; without parts of their body, with post-traumatic stress and without the understanding of what they experience or how to go forth in their life because they are forever changed. They must finally come to a point and "discharge the soldier;" allow that part of your life to truly be over. Hang up those responsibilities forever. Try to grasp the current reality and let go of the immediate past. Learn to live with the loss and adapt in order to persevere.
This is giving me something to reflect upon.

I for one have had to unplug. As long as I am moving, doing something, I am better than if I sit. Being online is very difficult for me. Whereas in the past my writing has given me an outlet, I feel that I am torturing myself to do it, because it is simply just too hard right now. I felt relief and peace initially when Madeleine went to heaven; she was free from her pain and disease, the things I had prayed for every single day. I kept myself busy between then and the services because I was not sure how to cope and not completely fall apart, and I still have my 3yo to ensure that Mommy is not a nutcase because she needs me more than I need to cope. After the service, I unplugged. I left everything familiar to me, except my two most important people. Any grief counselor will tell you to do this, to remove yourself from space you've shared with the deceased in order to be able to recollect yourself. So of course upon return to normal life, the emotions truly start to be felt. I think in theory it's not supposed to hurt as much. All of that which we cannot change is what we long for, what we miss, what hurts the most. Yesterday was my birthday. As birthday wishes go, "all of your wishes and dreams come true...." that just isn't possible. Is it realistic to wish for my life to hurry up so I can get to her? No, it isn't. Because there is a fine line between grieving the loss of my youngest daughter while not missing out on any precious moments with my oldest daughter who deserves her mommy just as much- in fact, more now- than anything else in the world. So for both of us, I unplug. I will try to anyway. Because right now I'm dying inside, grieving from the inside out how much I long to hold my baby; how much I miss her laughing and talking and noises around the house; how much I miss her arms around my neck or her calling after me. Maybe it's her needing me so much I grew so accustomed to. Sometimes I feel this incredible urge to be at the cemetery because I'm not taking care of her because "she" is there and I'm in our life. I know in my right mind that she is not there; she is playing and laughing and dancing in heaven and hasn't even realized yet that I'm not there. I have to discharge myself and stop punishing myself- it's not my fault I couldn't take the cancer away. It's not my fault she had to die. I don't know why God took her back before I was ready and somehow I have to come to terms with that and be happy and smile when she does show me she's still very much a part of me every day. 

Christmas Day Photos

I've been sick the last few days, hardly able to complete any of my tasks getting ready to lay Madeleine to rest. These are things hard for me to let go and delegate like her program, the readings for the mass, the photos. And in doing these as best I can before time runs out, I wanted to share what makes me cry, happy tears and miss her tears.

Christmas Eve ~ Vazquez Family

Mama's Angels

Merry Christmas!!!

Big sister shows Madeleine her toy

New Present

yay for new toys

Shaking her candy in happiness

Daddy's special gift

Christmas dinner

Until we meet again my love, my angel, Mommy & Daddy and sis miss you tons. Have fun with Grandpa.

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.

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.

Long

In PACU after surgery

It...........has...........been......the........LONGest......... weekend.......ev.......ER.............. Time has literally crawled by since Friday morning. Hurry up........... and wait.
 Friday was the longest day ever.
Both Jeff and I were a silent mess, though we both reiterated that as long as Madeleine is safe they can take all the time that they need. Take all day, just come back with good news.
We spoke to Dr Lazareff around 10:45 though surgery didn't actually begin until around noon; we turned her over about 8 am, and we were finally able to join her after 4 pm as she awoke from the anesthesia. Her surgeon indicated the tumor was removed in pieces, and that the whole area is very delicate. We were cautiously optimistic that everything was removed. Her last brain surgery was in February and we couldn't help but constantly compare her behaviors and reactions between them. The good news is with her age (and/or experience) she has been recovering beautifully. Each day she has noticeably progressed with her movements and activities. Friday evening she was hooked up to several IV's and monitors that kept her pretty immobile as well as cranky; she did not like it at all and seemed to be crying to me as if to say, "why aren't you picking me up and holding me?"

Saturday morning

She went back to sleep after her last feeding at 6 am and I awoke to her around 9 am Saturday playing quietly in the hospital crib by lifting her toe with the pulse ox light so she could see it and gradually lifting her other ankle wrapped in gauze hiding a peripheral IV on the side of the crib just a little higher each time. I gave her a few of her favorite toys and she remained quiet and entertained herself with them as I watched. She was still NPO (hospital speak for nothing to eat/drink) in anticipation of the MRI, which still wasn't actually scheduled; there was a chance it wouldn't happen, pending having a pediatric anesthesiologist. Eventually around 11:30 they took her downstairs to imaging and I was able to stay with her in the MRI room as they prepared her for sedation. This MRI would show us if the surgery was successful in removing the whole tumor. I left her in their care and waited in her room for her return. By afternoon most of her extra monitoring was discontinued; she got a bath and all the lines were removed, allowing for us to pick her up. Did I mention how the day just dragged on? dragggggggggggggggggggged on super slow it seemed, just waiting for someone to come tell us news, good or bad. We prayed for good.

We didn't hear anything the rest of the day, and Jeff let me go home and get some rest since we didn't really sleep more than 3 hours Thursday night before the surgery, and I had only about 3 hours solid sleep Friday. He stayed up all night watching over her and apparently she was hungry enough with the steroids that she very willingly took a bottle from him twice throughout the night. whew!! I was able to sleep a solid 8 hours before I jumped up realizing it was morning and hurried back to the hospital. In Sunday morning rounds, the neuro-surgery team came in and finally gave Jeff the MRI results: they got it all. The doc showed him the MRI from last week and the one from Saturday, and Jeff said he's seen with his own eyes, what once was there is now gone. In an instant, the weight of an elephant is lifted from our shoulders. Now we focus on getting her well and recovered. The rest of Sunday we noticed more improvements in Madeleine; she began verbalizing some of her favorite words and responses, trying to pull herself up by herself, and managing to balance her torso so she could sit up unassisted. Although she was doing these things easily before, it was a huge deal she was doing these just days post-OP. She continued to nurse well and humored solid foods a little. Again, the day just dragged as we tried to figure out if they would discharge us as she cat-napped throughout the day. I helped give her another bath and we took turns playing with her. Sunday Annalise stayed home with my mom, and Sunday night Jeff went home earlier to have dinner with her and play before bedtime. We all talked on the phone several times: Annalise to Mommy & daddy during the day, I to my mom; in the evening Annalise, Mimi and Daddy all talked to Madeleine and she insisted on standing on her bed while resting her head on my shoulder and holding the phone so she could listen. Precious moments indeed.
It's now Monday morning and the docs are saying we can go home. They'll discharge M after they remove the bandage with the remaining dose(s) of her steroids given orally, since there is really no reason to keep her . Her vitals have been amazing, she's breathing without any issues, her heart and blood pressure look picture perfect, all good things. Likely this week we'll meet with the pediatric neuro-radiology to discuss radiation options available to us based on Madeleine's tumor area, her age, etc. I guess this week I'll be an A+ student learning brain anatomy. I want to understand as much as I can about what areas of the brain control what so I can ask informed questions about what throughout Madeleine's life could potentially suffer as a result of the radiation to the tumor area. What we do know is that without radiation, the tumor will surely grow back. With radiation and another chemo treatment, we're hoping to nip it this time. The probability of it coming back a third time is still probable, unfortunately. We'll keep praying that it doesn't. I'll say though that me & God are having some pretty difficult heart-to-heart talks though lately. I'm upset and my faith has suffered. I had faith she would be ok, and the tumor came back. She is ok; I'll give Him that. But our little girl shouldn't keep having to have her skull sawed open with a jackhammer and undergo these extensive and tedious surgeries for the greater good of men, or whoever is worked into this plan. I'm very upset about that. I've asked Him to minister to me to help get me back to a place where I can have unyielding faith that He IS protecting my baby, not just allowing her to get well to suffer again. I can't take that. I quite literally say the Serenity Prayer over and over each day, because I question what I can accept as part of this journey. Thank you so much for the continued prayers for our family, we definitely still need them.

GENETIC RESULTS

It seems like forever we've been waiting. Jeff truly has. From the moment Dr. Davidson confirmed Madeleine's INI-1 gene deletion, he has worried himself literally sick over the thoughts of what if we caused this? how could I live with myself, my daughter losing her life? what can I tell her mother that would comfort her if it's her genes?...

We had already discussed and decided that if our results are positive, if by some reason one of us has carried this through the family tree undetected, that we would only grow our family by adoption. Though this decision had been made, I don't think we had quite come to terms with it. (On a side note it is very likely we will adopt anyway, thanks to this experience). This experience has taught us so much. We have watched other families struggle with more than one child in treatment, with the unknowns of what's causing their children's illnesses, even losing a child before understanding their genetics. I know now too why our oncology team wants us to meet with the genetics counselor, just to have the updated high school biology knowledge of how genetics work in the body. It helps us to understand how these things happen when it all seems senseless.

That being said, Dr Davidson called late Tuesday afternoon to check on Madeleine. I turned on the speaker phone so she could talk to her (she calls her Boo Boo) and she could hear Madeleine cooing back at her, though she didn't cooperate much in showing the doc her latest affinity to screaming at the top of her lungs in addition to her normal babble. 

We don't have another appointment with her until next week, the first time we've gone longer than 9 days without seeing her. She called to tell us the results came back from Philadelphia......she wanted to call us right away....because they are negative.

Annalise will be okay; she is a normal healthy child that will not be compromised by this monster. Any future children Jeff and I conceive will likely not be compromised by this monster. Madeleine is unique, she is quite literally the only person like her, 1 in 7 billion. As if an elephant had been sitting on his chest since February,  her Daddy exploded into tears of relief.

This is just one of many reasons why research is so vital to our family, to our Madeleine, and to all children facing AT/RT. It's an absolute monster of a disease. No two children are exactly the same, which make funding for research even harder to come by. We are in old ancient Greece where inferior children were cast away and individuals with the best genes may leave the most offspring, or so the reasoning must be for these children - they are not worth saving. Well, not anymore. September is Childhood Cancer Awareness Month each year and I hope to be able to share everything I have learned and am learning about how to Support, Hope, Research, Fund and Thrive for these kids. I want my Madeleine forever.

please, please pray for little Eric James Baron battling ATRT at NYU  in the ICU, he is very sick.

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

Day 134

I'm sitting here on what could very well be our last night spent in the hospital for Madeleine's treatment.

WOW, WE'VE MADE IT...

And this evening, it became so incredibly clear to me how exponentially harder this journey would have been without Jeff physically by my side every single day. With very important appointments happening today, Annalise spent last night and most of the day with Daddy at home and they came to visit us in the afternoon. We haven't seen her in over 2 weeks and after 6 months of this, it has definitely taken it's toll on her too. We had so much fun, just smiling at each other laughing, playing, hiding in the closet. After a few hours it was time to go, say goodbye. Kissing them both bye bye, watching Daddy lean over sleeping Madeleine to kiss her nose and whisper good night, I walked out of the room and watched them walk down the hall hand in hand - and it hit me like a ton of bricks - I really don't know how parents and families make it through this being splintered. I'm choked up now thinking about how much harder it all would have been to do this night after night after night. I realize now why Jeff tells me that just by me being here with him brings him peace. Because to be without him I do not feel complete; I feel anxious and a little bit lonely, and like I said this is only the 3rd time in over 6 months we've spent the night apart with the kids.

There is another family I follow, the Adams family, going through something very, very similar. One of their sons underwent the surgery in order to be his brother's bone marrow donor. WHOA. They've also lost their daughter to the same disease for which they are currently treating their son. UNBELIEVABLE. I try to remember Ginger in my prayers every day because I know what I'm going through and I can't imagine being in her shoes. In their blog posting tonight she so candidly wrote about how awful hospital living is (she's right), how much she misses her other children (it rips a mother's aching heart out), the sight of her son's blood on his shirt and how frightening that can be (I nearly convulsed into a panic seizure when Madeleine did it after her tumor resection surgery) and about the difficulty of not being with her husband. Again, this resonated so heavily with me because they are fighting their son's disease together yet apart, something I feel that I would surely fail at had that been our only choice. Thank God our intense journey was only 176 days long. Somehow God provided for us to be together. And it has made all the difference in the world. For us. For Madeleine.

Please say a prayer for the Adams' family.

UCLA Welcomes Madeleine for Cycle 4 (Transplant #2)

April 13

Good Morning! For our loyal followers, I apologize for the online hiatus over the last two weeks, though I think you'll forgive us in knowing we got to spend 12 whole days at home as a family! Madeleine was discharged late in the afternoon Monday April 9 and she was admitted Sunday afternoon April 22. Coincidentally, she's beginning Chemo Cycle #4 on the same date as last month, the 23rd. I like this because my calendar-focused brain can very easily see when we could likely go home again. Monday Madeleine received both a blood transfusion and platelets to get her started off "with a full tank" in preparation for the chemo that began around 6pm and will run for 6 hours Monday and Tuesday evenings, a break on Wednesday and Thursday, and she will receive her stem cells late Thursday or likely Friday morning. There has to be sufficient time after the last chemo infusion and the stem cell transfusion to ensure the cells are able to do their job. So far she's exactly herself with no adverse effects; the only lasting effect has been some vomiting since the last cycle. She has been on an anti-nausea medication called Zofran since last month and had to stay on it while at home or she vomited without fail, it was very strange. But if every six hours she needs a little medication to keep her food in, so be it - it was very manageable.

So, the recap: Dr. Moore is the head of our Transplant Team (Madeleine has moved under the BMT group though her primary oncologist is still Dr. Davidson) and he has mentioned to us that autologous transplants are typically the easiest they see, where patients recover quietly and relatively easily considering everything else they've been through. There is still the conditioning chemotherapy where patients can have significant adverse reactions to; however, the stem cell rescue contributes wholly to the recovery. During the induction cycles, it took Madeleine about 9 days to really hit rock bottom with her counts and feel really crummy, and then another 10 days or so of being neutropenic before her counts began to rise, experiencing "easy" side effects like nausea/vomiting, to the really bad when she was septic. We felt as though after Cycle 2 she was really due for a good cycle. Cycle 3 came and went without a hitch! By day 14 she was really ready to go home, though we needed to stay for a few more days observation on her labs and for her follow up kidney function test (the kidney test is done every month to check the function of her kidneys that could be compromised as a result of the chemo). A few days after discharge we came back for an outpatient audiogram, which she also gets every month and requires her to be under sedation because little babies cannot hold still for the duration of the exam. To date, the doctors are amazed that she has yet to show any signs of hearing loss. This is truly AMAZING, considering they told us it was almost a certainty that she would have hearing loss in the speech range and likely need hearing aids throughout her lifetime. We're almost there... almost to the finish line where we can breathe a sign of relief that our baby girl is healed, is cured of this terrible disease and has won her most victorious battle! She is MY HERO.

The time at home was amazing =) the girls are so in love with each other that as a mother I can't express how much joy I feel to watch my daughters talk to one another, interact and play and LOVE each other. Annalise was SO HAPPY to be with all of us together. I burst into tears at random times just overwhelmed with emotions to reflect on how we have all sacrificed and endured this journey together at all expense, and Annalise is no exception to that. How I thank God that my children are young enough that they won't remember this hardest, darkest period of our life, yet will retain the love and adoration for each other that grows exponentially each time they are separated and reunited. Annalise wants so bad to help take care of her baby sister and she has those opportunities when we're home. Madeleine is incredibly captivated by Annalise that she follows her with her attention completely focused on her, she laughs at every little thing she does, and raises her baby voice and screams to express her own joy and happiness. It's nothing short of magical to witness.

Life, as it should be :) 4/11/12

So the days at home were spent relaxing as much as possible: we probably never turned off the TV! But it was great to have those lazy days in pj's together as a family. We had a few days of visitors, a few days at the Dr's office for follow up, lots of home cooking and baking, and plenty of play time on the floor learning to use our muscles. The days seem to fly right by especially with doctor visits sprinkled in, but we were all very happy to be home together, sleeping in our beds, and playing together.

Hope for Madeleine Benefit

Other updates: the Hope for Madeleine Benefit in Grass Valley was a HUGE success!! My mom, sister, grandparents and nephew all attended on our behalf on April 7th, and the amount of love and support within those walls for those 5 hours was tremendous. Over 60 businesses - yes, I mean SIXTY - businesses contributed to the silent auction and raffle. That's incredible!! I am so proud to be from the Gold Country, a place where the small town community still exists and children make get well cards for Madeleine and encouragement cards for Annalise. The event in total raised over $6,200 to help our family care for Madeleine. So humbly and graciously we thank the Grass Valley/Nevada City community and everyone who helped to make the event.

"Madeleine's March" turned into "Madeleine's March & April" at Cold Springs Middle School, and the administration has decided to hold a student assembly on May 8th to announce the fundraiser total and present my mother with the proceeds (they don't do this for every fundraiser the students organize and participate in so it's to be a very special event). I am so proud of my sister Jordyn, who has become very competitive with her classmates to see who can raise the most money, but at the heart of it, their intentions are good and we have received MANY get well cards from the students and even comments on the blog that they are thinking of and praying for our Madeleine.

Lastly, it seems that in the next couple of weeks we should be able to move forward with the labs for the genetic testing, thanks largely to the fundraising events organized on our behalf. Jeff and I will both have our blood drawn and sent to Philadelphia for the genetic testing experts for the INI1 gene deletion to hopefully make a determination that could change our lives. We're hoping that the testing will prove that Madeleine's gene deletion was a sporadic, random event and that neither of us carry any sort of genetic mutation or combination of our genes have caused the predisposition. Essentially we're hoping to hear that we can have more children if we desire that are not at any additional risk, and more importantly, that Annalise is at no risk at all. In due time we will have the information and Dr. Davidson has made it very clear that we have continued with Madeleine's therapy in the effort to ensure the disease CAN NEVER COME BACK; that is the goal, that is what we have been doing every single day since January - fighting the good fight so Madeleine will never have to endure this ever again. We appreciate all the continued prayers, at the very least until we can bring her home for good. But I have a very good feeling that this little girl that we have shared with the world will be in many people's prayers forever, like their own little angel who has made a difference in their life, one way or another.

So Far So Good

This morning I was reminded how lucky we are.

This morning

This morning we talked, we laughed, we nursed, and Madeleine fell asleep in my arms and I got to hold her and kiss her in my arms and thank God for her. Everything is just as it should be if we were not in the hospital, with nurses and doctors checking in on us; and if Annalise was with us to also smile at Madeleine and for me to hug both my girls. We are so blessed and at times I forget that because we're not home and I miss my other baby terribly. I know she's in good hands, it's just I want her in mine.

For the last 2 & 1/2 days we had limited physical contact with Madeleine as a result of this new chemo she's getting. Something from it excretes from her pores that is extremely irritating to the skin and toxic to us. For those 2 & 1/2 days we bathed her every morning and every night and kept the temp up in the room so her little naked body wouldn't be cold. Even the friction of the diaper fastened to her could cause "burns" - it feels like itchy rug burn - to her skin so she stayed naked without anything on her but a little blankey lightly draped over her torso and no skin-to-skin contact from us. For a breastfeeding baby, that is punishment. Like a good girl she really tried to take milk from the bottle and she got enough to take the edge off, though not nearly as much as she would normally eat. It was even hard for Daddy who wanted so badly to kiss her and pick her up. Late Sunday night we bathed and dressed her to get her up out of bed to play, talk and shower her with cuddles and kissies. We enjoyed her smiling face and cooing for a little while and it wasn't long before she wanted to nurse and go back to sleep.

Today [Monday] Madeleine will get her stem cell transplant!! The big show won't be happening until the end of the day, after 5pm, as close to 48 hours post-chemo as possible. So sometime this evening I can give another update how that goes, though everyone is telling us they expect it to be pretty uneventful but with lots of people for all the necessary precautions. By the end of the week we can expect her to begin feeling ill and counts to drop as a result of the chemo, though Dr tells us she should recover a little better with the stem cell rescue. Again, a lot of wait and see...    

Giving Thanks for Giving Back: fundraisers

March has brought us so many blessings!! It's overwhelming!! So many people make it possible for Madeleine's parents to stay with her every day supporting her and each other: our parents do so much for us every single day, from taking extra special care of our daughter Annalise to praying for us, encouraging us and doing "extra mile" things to help. Our extended families' constant positive thoughts, prayers, cards and phone calls keep us empowered and assured we are making all the best decisions for Madeleine. Our close, personal friends and strangers about to become friends in organizing events, prayer groups, donations and gifts who otherwise would not know us but are finding it within themselves to do something so special for Madeleine make it possible for our family to keep our home, our vehicle and our focus on getting Madeleine well to grow up into a beautiful, healthy little girl. I'm crying tears of gratitude as I write this, because I am at a loss for words to truly express how much every single person has touched our lives, both grand and small. In the simplest way, WE THANK YOU SO SINCERELY. <3

The Broomball and Cedars-Sinai Medical Center event was a huge success on March 11!

The students of Cold Springs Middle School in Reno, NV have spent all this month raising funds for "Madeleine's March:" an opportunity for the students to feel good about helping a family in need and the staff and faculty to teach about caring and giving. Veronica's 11-year old sister Jordyn, Madeleine's Aunt, attends Cold Springs, and her homeroom teacher, Mr. Joel Hurley has helped the students organize a month-long fundraiser to benefit Madeleine! A weekly coin drive has been engaging teachers with their students, and all the $5 wristbands sold out! As an added incentive, Mr. Hurley is offering candy bars to students sporting their wristband ;)

Friends both close and new have spent all this month collecting donations from local businesses in Grass Valley, CA for the "Hope for Madeleine Benefit Dinner and Silent Auction" taking place Saturday, April 7th at the Grass Valley Elks Lodge. Antonio Ayestaran Custom Catering has generously donated the main entree and preparation, and countless businesses in the Grass Valley/Nevada City/Lake Tahoe area have donated gift certificates for both the raffle prizes and silent auction. Shawn Coffey-Bryant is one of my oldest and closest friends for the last 18 years! She has spearheaded this Benefit for Madeleine,and I can't thank her enough for all of her time, efforts, networking and connections.

A special design was developed to honor Madeleine's strength and innocence by our creatively-talented friends behind the "Dear Madeleine" song by The Antique Toys.  Our friends Charley and Richard of the Scartissue Oddball Society have used their talents to personally express their empathy for our family as well as help financially. This design was made into a t-shirt now available online for $25.

And last but not least, we launched our Warrior fundraiser with the Don't Worry Be Happy Foundation. This foundation accepts tax-deductible donations on Madeleine's behalf to directly pay for medical expenses and offers the tax incentive for individuals and businesses wishing to help. In addition, they also offer an online store of Don't Worry Be Happy apparel merchandise for which approximately 40-50% of sales come back to help Madeleine, also for medical expenses.


Additional info on these and all fundraisers to help support Madeleine are saved on the Fundraisers & Donations page of the blog

Thank You to the Cedars-Sinai Community

We'd like to extend a very big THANK YOU to our family and everyone who attended the Score for Madeleine! Broomball Charity Event on Sunday!! Such wonderful, caring people sent home this beautiful gift for Madeleine with her big sister and grandparents. Unfortunately Madeleine's CVC surgery was early the following day so we couldn't make it, but I hear everyone was very excited to meet her big sister Annalise and Jeff's parents representing for us, thanking this wonderful group of people for doing something so remarkable for our family's baby.

I had previously shared that in January, Jeff's cousin Loren shared Madeleine's story with her friends and colleagues at work. One graduate student in particular, Akop, was so touched by Madeleine that on his own initiative, he and his hockey team  raised money to make a donation for Madeleine. As if that kindness and generosity wasn't enough, they spent February planning and organizing a Charity event to benefit Madeleine!! We still have not had the pleasure of meeting but again, I know that God is speaking through these kind and generous people who want to help our family's baby girl. Thank you Akop, Loren and the Graduate Student Association!  

Score for Madeleine! Broomball Charity Event

 Jeff's cousin Loren is a stem cell research biologist at Cedars-Sinai Medical Center and one person we reached out to help us understand the stem cell transplants that Madeleine would eventually undergo as part of her therapy since Loren experiments with and leads research on induced pluripotent stem cells, i.e. she's really friggin smart! http://www.cedars-sinai.edu/Research-and-Education/Institutes/Regenerative-Medicine-Institute/Cores/RMI-Induced-Pluripotent-Stem-Cell-iPSC-Core-Facility.aspx

Two months ago, Loren shared Madeleine's story with her friends and colleagues at work. One graduate student in particular, Akop, was so touched by Madeleine that on his own initiative, he and his hockey team  raised money to make a donation for Madeleine. As if that kindness and generosity wasn't enough, they've spent February planning and organizing a Charity event to benefit Madeleine!! We still have not had the pleasure of meeting but again, I know that God is speaking through these kind and generous people who want to help our family's baby girl. Thank you Akop, Loren and the Graduate Student Association! Here is the information for the benefit taking place SUNDAY, MARCH 11th  open to the Cedars community and anyone who can come and play! This information will remain on our Fundraisers and Donations page as well.