"Dear Madeleine" song by The Antique Toys

http://itunes.apple.com/us/album/dear-madeleine-single/id499281563

Benefit Donation Fund For Madeleine Vazquez

The friends of Veronica and Jeff have opened an account for cash or check donations for Madeleine and her family. Checks can be made to Veronica Aguas, Jeff Vazquez or Madeleine Vazquez. All donations made through this site via Paypal are also deposited to this Benefit Donation fund.

Our hope in setting up this fund is to help alleviate the overwhelming financial burden for Madeleine's parents so they can remain at her bedside. 

Madeleine currently has insurance through her mother, however does not yet qualify for CCS or Medi-Cal.

Please email Shawn at s_n_coffey@yahoo.com to obtain the account information if you wish to make a direct donation.

Jeff and Veronica sincerely appreciate all of the love, prayers and financial assistance they have received so far and are humbled and thankful for all those who have reached out to show their support.

A HUGE Update

Madeleine's first cycle is two+ weeks down and she's doing extremely well! We were transferred to Children's Hospital on Sunday in order to be ready for the pheresis when her counts are exactly where they need to be. They explained that sometimes this process takes 2-3 days, depending on the number of baby bone marrow stem cells they are able to collect. The target for this trip is 7 million. Well, our little overachiever! On day 1 of aphaeresis they were able to collect 18 MILLION stem cells! The process includes having extra blood so as to not affect her total volume and side effects thereof, so after her procedure on Monday Madeleine felt like a million bucks :) She had a bath and stayed up to play, bounce in her chair and eat a little.

Tuesday morning we began with another aphaeresis in the event that something should go wrong with the first harvest or to have extra on hand for the future, i.e. she should relapse and need another transplant later in life. Tuesday's harvest was nothing shy of ridiculous - the harvest was done in less time than Monday and they collected 38 MILLION more cells! All of her counts have also come up to normal, which we are thrilled about. Her platelets have been pretty up and down, so she is going to be having another platelet transfusion today. Her oncologist, Dr. Davidson called us this afternoon to discuss her transfer back to UCLA and her current status. Once she gets back she'll have another MRI that will tell the doctors how effective the chemo has been so far in shrinking the tumor and if she is ready for the resection surgery. If surgery cannot be scheduled, her next cycle of chemo could really begin earlier than we originally planned - as in next week.

Madeleine needs to have all her counts up, be eating on her own and off IV nutrition and pain control before we can all go home for a few days. That has been the plan all along, but considering how well Madeleine is doing, it may actually be in her best interest to keep the forward momentum going and begin chemo to really get this tumor out! Her Doctor of course wants us to have that time at home for all of our rejuvenations, but in the bigger picture of things, we can rest a ton when she comes home cured. So that being said, we could push through and begin chemo by about February 8th or so.

In other exciting news, our friends The Antique Toys released their song "Dear Madeleine" on iTunes this afternoon! It's such a beautiful song and we feel it really does justice to her. The song will also be available on Amazon, Rhapsody and some others, it just takes a little longer for them to get the song up on those sites. We'll post the update when it gets on those sites as well. If you feel so inclined, please listen!
http://itunes.apple.com/us/album/dear-madeleine-single/id499281563

From our friend April

Fundraiser for Baby Madeleine over!! Proud to say we made a little over $400 for Jeff and Veronica! Thank you to all of the generous donations and for my wonderful family for all of their help! If you still would like to help we are also selling Celebrating Home Candles in which 50% of the proceeds go directly to Baby Madeleine. The candles are $11 plus tax. 

One more special thank you for you help and/or donations for today: Pat Steinmetz Michelle Gill Blount Jean Turgeon Jennifer Tokatlian VoskeritchianHelen van der Kruk-Fonti Andrea Perre' Sydney Perre Tyisha Smith Martha Ortiz Mr & Mrs. Williams, The Escobar Family, Aliyah, Tiana, Bryana, Lauryn & Bryan, little and big, Lucille Padilla Bell, Jena Ortiz, Martha & Jess. I feel so blessed to have such selfless people in mine and my childrens lives...you are all the true meaning of behind hope and faith! Love ya!

THANK YOU APRIL!! For the kindness in your heart and your efforts - God Bless you and your family

Fundraiser This Saturday in Montclair, CA

Our friend April is a SuperMom: she has 5 children, finished nursing school while pregnant and completed her final exams just days after giving birth to her beautiful baby Brooklyn! and is constantly looking for simple ways to teach her children character, generosity, compassion and integrity.

April's 2 eldest daughters recently had a popcorn/lemonade stand to benefit their soccer team and had such success, they asked their Mom if they could do it again, this time to help Madeleine. What angels!! April will be hosting a Yard Sale with Popcorn/Lemonade stand in Montclair, CA (30 minutes east of Downtown LA).  A number of people have generously donated many different kinds of items for the yard sale - it should be a great selection!

SATURDAY, January 28 - Montclair, CA

Yard Sale, Lemonade & Popcorn - 8:00 am to 1:00 pm

9825 Amherst Avenue, Montclair, CA 91763

Thank you very much for stopping by! We so greatly appreciate everyone's participation and supporting us and these children's efforts!

THANK YOU APRIL EGLAND!! :)

Up out of bed after bath

We've officially been residents at Mattel for one month.

The last few days have been tough on Madeleine. Her counts have dropped and dropped again, leaving her in pain, sleepy, irritable. The side effect seeming to affect her the most is mucositis, an inflammation in the form of canker sores from her mouth to her bottom throughout her GI tract - ouch! It prevents her from nursing or having her pacifier, causes persistent mucous drool and stomach acid reflux. Poor baby! We were finally able to balance her pain medicine to make her comfortable and she's been sleeping off most of her symptoms. 

She received another blood transfusion as well as platelets today that will hopefully help her to feel much better as they have in the past. They've explained to us that this period of time is her "rock bottom" and could last 7-10 days, or through the end of the month before she even BEGINS to feel better and her counts start to go up. 

Once that happens, Madeleine will be transferred to Children's Hospital Los Angeles where they will take 2-4 days inpatient to harvest her baby bone marrow stem cells from her blood stream through pheresis (CHLA has more experience with this process on children under 10kg). Her stem cells will eventually be given back to her in her "rescue" chemo treatment(s) after the surgery removes most of the tumor - when we get there. It's still a long road, but it feels promising to be nearly half way done with the first cycle (February 11) and to see that she's doing relatively well under the circumstances. We constantly remind ourselves and everyone who wants to cry about her pain and symptoms that IT COULD BE WORSE - THANK GOD IT'S NOT. She still has moments where she smiles, she coos at Momma or Daddy, or she "sings". Our baby is a strong little angel.

Our precious angel sleeping this morning. We pray she's able to sleep & rest comfortably through her hardest days. The doctors & nurses informed me this morning that her cell counts have plummeted (they expected it) and it's more important than ever to protect her from germs that could give her an infection. At least until her body starts to recover.

A Week in Perspective

We're officially 8 days into Madeleine's 28-day cycle and looking back, she's doing so much better than the "worst case scenario" the doctors conveyed to us in order for us to be prepared for anything. She has had a few days during the infusions where she really didn't feel good; her emesis has been pretty persistent but in spite of that she continues to show interest in feeding which is a good thing. Right after her blood transfusion she was truly rejuvenated which actually threw the doctors for a loop - they weren't expecting that at all. Our little girl is really showing what she's made of and amazing us all with her resilience. 

We are getting ready for her to hit rock bottom and hoping that, relatively speaking, she does as well as she has this last week. As her counts go down and her immune system crashes, they expect her to have pain, get sores, not want to eat, and a host of other possible side effects. She is now on IV nutrition to ensure she stays healthy and is receiving various vitamin-type fluids to help her body recover from the chemo. In some ways, we thank God she is as young as she is because she won't remember this part of her life like we will, and it's so hard on parents to feel so helpless when your child is sick. This morning she was still her smiling, laughing self and by this afternoon, you can see it in her face that she's starting to feel sick and she wants to sleep. This afternoon, we both just feel beat up. It's not easy every day. In fact, it's rarely easy - you just deal with it. It's been a roller coaster week.

Help from an Angel Doing God's Work

Two weeks ago, after Madeleine's story was shared with extended family and friends through the blog and Facebook, a woman with a big heart "doing God's work" reached out to us, sharing our blog with a cancer foundation she's a part of, and asking friends she already knew were attending a makeup class to further her business to bring donations to help us. We still have not had the pleasure of meeting but I know God has sent her to renew our faith in strangers listening to God reaching out to us. Thank you Clarisa Martinez! Here is the information for the event Clarisa is hosting THIS SATURDAY

SATURDAY, January 21 - Hacienda Heights, CA

Night of Beauty & Charm - 4:00 pm to 8:30 pm

please send email at beautycharmartistry@hotmail.com to RSVP for exact address! 

FREE makeup class by professional makeup artists! Shop/purchase manicures, makeup, jewelry, candles - fun stuff for women. visit the Facebook event for more info:

 https://www.facebook.com/events/268334719895885/

THANK YOU CLARISA MARTINEZ :)

Work in Progress

Last night's chemo compounded with the previous three nights made for a long, uncomfortable 12 hours. Today Madeleine received another blood transfusion and a vitamin infusion that will help her recover from this last chemo drug.

Tonight she's doing amazing! She's kicking A LOT, and playing :) looks like she's trying to roll over from back to tummy! Daddy & I were saying how we can't believe some of her exciting milestones such as rolling could very well be here at the hospital if not delayed. Another indication she's feeling better is that she wants her pacifier. The last few days either it didn't taste good or her mouth hurt but she didn't want it at all which is unusual for her.

The kitty she's holding is a gift from the local Evelyn Grace Foundation, a foundation that provides an "Evie's Bundle of Joy" basket of age-appropriate toys and goodies that have been VERY useful. Please consider them for your next tax-deductible charity!!

After Bath

A happy baby

We're almost done with chemo infusions and Madeleine is doing really well. The medicines are working, the last and yuckiest of them will be infused tonight. Daddy has been our rock, helping us both cope with her flu-like symptoms day and throughout the nights and reminding me that as she experiences the side effects, the tumor is getting a good whooping as well. The Drs have said her counts are better than they expect for this stage of treatment & she will likely be getting her first blood transfusion tomorrow. We continue to pray for her constantly, that the chemo shrinks the tumor faster than anticipated and she can have the surgery sooner than later. As of today, Madeleine is resting now & feeling okay. Thank you baby Jesus!

First night of chemo treatment

It's a Good Day to begin Chemo

Our day has begun good. Momma received a daily devotional that completely addressed the negativity trying to infiltrate our positive and faithful attitude. An excerpt:

When You say, "I can't go on."

God says: "My grace is sufficient." ( 2 Corin 12:9 & Psalm 91:15 )

When You say, "I can't figure things out."

God says: "I will direct your steps." ( Proverbs 3:5-6 )

When You say, "I can't do it."

God says: "You can do all things in Me." ( Phil 4:13 )

When You say, "It's not worth it." 

God says: "It will be worth it." ( Romans 8:28 )

Daddy too started off on the right foot. On his morning walk, he bumped into his First Lady: the honorable Mrs. Nancy Reagan! He greeted her with "Good Morning, Mrs. Reagan," his smile and a head nod. She smiled back at him and returned the "Good Morning." Made his day ;)

Today we begin Madeleine's chemo treatment. The ATRT is an aggressive disease, and therefore must also be treated aggressively. She will receive infusions for 5 days, beginning her total 28-day cycle. We expect a very sick baby. However, her fighting spirit and demonstrated ability to bounce back gives us reassurance and faith that we can help see her through it. Until the medications begin to really kick in, she should continue to eat well and be in good spirits. 

Madeleine will remain inpatient at minimum for this first cycle to carefully watch her counts and how she responds to the chemo. She will need blood and platelet transfusions during these cycles so we are still hopeful for additional donors - blood types A- and O-,  are compatible - and an anticipated schedule to donate over the next 6-7 months. The treatment plan currently includes 6 cycles of chemotherapy, at least one short stay at Children's Hospital Los Angeles to undergo an aphaeresis procedure, and another brain surgery when the time is right to resect as much of the remaining tumor as possible. This disease MUST be completely removed in order for her to be cured. And that is the goal.

posting comments

Thank you for keeping up with the blog and those who want to post comments, we appreciate your comments, although unless you sign your name, everything comes out "anonymous." Thanks!

Some Good News!

This morning's surgery went very well and quick. Madeleine's central line was placed and the lumbar puncture (spinal tap) was completed and tests fast-tracked. She woke up happy and talking to Daddy with a little pain discomfort but she's been resting comfortably this afternoon. 

We just received the news that she tested negative for malignancies! This is excellent news! It means that the cancer has not spread through her cerebral fluid, it is completely isolated to the tumor in her brain. This is very positive for her treatment plan. Chemo is likely to begin tomorrow [Thursday]. Tears of relief :)

Thank you baby Jesus!!!!

Heading back to UCLA

This morning we're being readmitted for Madeleine's kidney tests today, and the surgery tomorrow morning for installing her central line in her chest & the spinal tap. These procedures will ensure the cancer has not spread and in preparation of her treatment. This is the child we want to bring home at the end of her next cycle - happy & spirited. Thank you for your prayers! Please keep her in them continuously

The blog is live!

Wow, we are amazed and overwhelmed at the support we are receiving from so many far and wide! Thank you!
I appreciate everyone that has reached out to us. Feel free to post a comment or ask a question that I can address.

CCS is something that has come up. In California CCS is an insurance for children with chronic conditions - that is, IF you don't have an HMO. Because Madeleine is covered under an HMO, we have been denied for CCS assistance. Our case workers are coordinating with us to see if we have other options to help get her additional medical coverage and/or grants to help pay for her care. As of now, we can't qualify. Hopefully that changes! And when it does, I will share the blessed news with everybody!

We have enjoyed these last two days at home with our kids. Home is where your heart is! And it feels so good to be home, to sleep in our beds, to play with our toys, to be in the familiar and watch TV! We will be readmitted tomorrow [Tuesday]. Thank you again for your prayers, blessings, sharing Madeleine's story, and for your donations!!! I'm overwhelmed that there still are amazing, caring people :)
Much love to you all!

Day 15 - Going Home!

Yes, we are planning to be discharged sometime today (Friday) with the understanding that Madeleine will have to be re-admitted the night before her next procedure, which the doctors are coordinating for Tuesday or Wednesday next week. A few nights at home all of us together should be rejuvenating for us all. 

We have learned a little bit more; her tumor is "extremely rare" which is why the pathology and treatment plan is taking so long. It could be our 'Hope' for a germ cell tumor is not reality. We don't have any indication yet on the success rate of treatment. Not an easy thing to deal with as her parents. But, we persevere... 

So going home! What a blessing. Last week I had to clean out our refrigerator, we had food freeze & spoil. Considering we'll only be home for about 2 1/2 days, if anyone wants to help with foods easily frozen or with cooking we would really appreciate that. Sometime next week we can begin planning "our new normal" life to begin between home & the hospital, I would just hate to throw away more food. Thank you everyone who has reached out to us, prayed for us, visited us or brought gifts for our little girls. The love and support is overwhelming & humbling to us both. Thank you!

Day 14

We are now 14 days solid inpatient. It's unbelievable it's been that long away from normal life, and then we think it's really not that long at all considering the days and months ahead of us. The perspective we are reminded of is that Madeleine's treatment is not like some of the kids undergoing treatment for a year or longer, so for that we are grateful.

The last 5 days have been slow and a bit frustrating. We were really looking forward to having a break while we waited (at home) for the pathology results to come back. Needless to say, insurance restrictions kept us in the hospital for the doctors to coordinate everything they needed to prepare her for chemotherapy and ensure her safety. We still do not have a prognosis, which was initially hoped for on Tuesday. The lack of information we're getting is unsettling because it feels like a plan is developing but we're being excluded from the thought process and solution development - if you know me and Jeff, you know how annoying that is to us. Tomorrow she was scheduled for anesthesia to complete a spinal tap and install a central line port in preparation for the chemo; as of this afternoon, the type of central line was being changed/clarified and the spinal tap likely delayed because all of the pathology has not yet been completed. All of these unknowns just started to really get to us; we understand we are in for the fight of her life, we just want to prepare the rest of our life to accommodate as best we can the treatments, special needs, etc. we're facing. Tomorrow morning they will make the final decision to take her in Friday or next Tuesday, and we've been told Madeleine is likely to remain in the hospital another couple of weeks, minimum.

This morning neurosurgery removed the dressing from Madeleine's stitches from the biopsy surgery - it's a zipper about 4-5 inches from the base of her neck upwards. Her horseshoe zipper from the shunt above her right ear is also healing very well and she has little to no discomfort from that set of stitches. The back of her neck is still tender but she's handling it pretty well. Today she started standing up again in our lap and balancing her head much better like she used to do before she came into the hospital. We've also been successful in maintaining Madeleine's nutrition by breast milk and her little belly and baby chub is growing. There is a program here called Child Life that provides stimulation and age-appropriate toys for the children AND siblings; the brightly colored animal mobile they provided we placed in her crib and has been a source of joy for Madeleine. She's such a laid back personality anyway and the mobile she can track with her eyes and listen to for extended periods peacefully.

That's pretty much the update; Jeff and I continue to remain by her side at all times. We feel pretty strongly about not going home until we can also bring Madeleine home. We are coming to terms with the fact that the rest of life must go on, we have to make decisions about work and won't be able to keep this up indefinitely, which is difficult because we both recognize neither of us ever thought we could be strong enough to handle something like this, or alone. The balanced unit we are, and by God's grace, has given us the strength and patience thus far to be good, sharp parents making the best decisions we can. Please keep our family in prayer. Thank you!

A BLOG CREATED FOR YOU

I have created this blog for you Jeff and Veronica, so you can continue to keep us all updated on the little girl who has stolen our hearts. It is my hope that you use it often so that everyone who is out there praying for Madeleine can continue with her on her road to recovery.

Love you Both,

Shawn

Day 14 - Madeleine's stitches