Tuesday, March 27, 2012

Stem Cell Rescue #1

Madeleine's doing well, she took her morning nap after the stem cell "infusion;" that's more like what it really is than a transplant.  Her transplant went as scheduled, nothing major, it looks like a blood transfusion. She's had a little bit of nausea and vomiting the last couple days but that's normal for chemo and she's sleeping it off mostly. Madeleine's vomiting is really not bad, maybe only twice especially compared to the 1st cycle, that was bad. That was so sick. She'll be on 24-hr monitoring though for blood pressure and heart rate mostly as a precaution. They're mostly looking for a reaction to the preservative which is actually making me extremely nauseous, I had to go outside a couple of times because it's overwhelming me. Its a very specific odor that emits from her breath and urine. It smells like freezer burned or fermented creamed corn that stinks. Jeff hardly notices it. I asked the nurses to keep an eye on her so I could get fresh air. We're exhausted, we were up at 7:30a and she didn't go back to sleep last night until almost 3am. She's having a little bit of trouble sleeping any real length of time today so hopefully she'll sleep all night tonight. I'm sure she'll get up one more time to nurse tonight and then turn in. Fingers crossed :)

Monday, March 26, 2012

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...    

Sunday, March 25, 2012

Hope for Madeleine Benefit in 2 Weeks

From our friend and organizer, Shawn:

Hello Everyone!!! We are two weeks away from this Fundraiser and I am really hoping to make it very successful for Baby Madeleine and her family. I will be out and about fundraising again this [Saturday] afternoon. Looking for a few more silent auction items and hopefully some additional food donations. If you would like to donate an item or gift certificate towards this event, please let me know. We have been so blessed already by some very generous individuals.

If you woud like to pre-buy tickets for $12 before the event you can do so in the following ways:

Locally, you can pick them up at Day Tripper Gear, Atelier Salon, and Alta Sierra Fitness. You can also purchase them online through the donation paypal button here on Madeleine's blog. Please include a note in your donation that it is for tickets for the fundraiser. You can then pick up your tickets at the check in table the night of the event.

Ticket prices will go up to $15 when purchased at the door.

If you plan on attending, please respond to the [Facebook] event invitation as soon as possible, make sure to include the number of people attending. It's very hard to plan for food without this information :) [You can email Shawn at s_n_coffey@yahoo.com if you're not on Facebook to RSVP]

Please keep Miss Madeleine in your prayers this week as she has started another round of chemo. Pray that her tiny body remains strong an is able to withstand the horrible side effects of this very necessary treatment!


Please note this event is taking place at the Grass Valley Elks Lodge in Grass Valley, CA

Saturday, March 24, 2012

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

Cycle 3 Begins: Rescue Transplant Chemotherapy


The last week has been such a blessing, and we're so appreciative of our privacy and time at home with our little family. To be home with our girls together was a happy and special time. Madeleine is a month older than the last time she was at home, and in baby months, that is huge: she was so curious and busy taking in her "new" and stimulating surroundings she didn't nap at all during the first 2 days; she has discovered her feet and that she can lift them while laying on her back; she is laughing again, and screaming with her new louder voice; and she has reached a stage where the girls can interact with each other, having full baby conversations on their own. It was so heartwarming to watch them talk and play together!




Madeleine completed cycle 2 and the last of the induction chemotherapy last week and was discharged to go home last Saturday. We really wanted her to be 100% healthy when beginning chemo cycle 3 which was scheduled for Monday, 3/19. However, it was really in her's and Annalise's best interest to wait until later in the week so we were admitted on Thursday afternoon after morning clinic. Clinic is where we begin the day when Madeleine has checkups before beginning chemo and we're not yet admitted to the hospital so the treatment schedule isn't impacted.
A word on the different chemo-therapies:
While induction chemo is very high-dose chemo aimed at quickly attacking the tumor and eliminating the cancer, the next phase of her treatment has been called rescue chemotherapy, or transplant therapy, and over the three cycles she will receive more of the chemo medication total in smaller doses, making it more effective and safer for her. The doctors believe this is the best course of treatment to give Madeleine the best chance at eliminating the cancer completely and it never coming back. These three cycles will still be ugly days of the chemo infusions as these medications completely knock out the patient's stem cells; it's called rescue therapy because she will essentially receive her own bone marrow stem cells (autologous) through a transplant in these cycles. She will not have to contend with the possibility of her body rejecting the cells like the traditional bone marrow transplant patient. Rather, receiving her own stem cells should help her to recover more quickly from the chemo side effects.  These last three cycles are still planned as 28-days each.


We have a thing about Fridays: so far throughout this journey, Fridays seem to be synonymous with bad news or hard days. This Friday was different. We began chemo this morning and Madeleine has been doing well all day. She did receive a blood transfusion after the chemo to get her started off on the right foot, not as a result of her body getting sick. And we finally met some new friends: Akop and Melanie from Cedars came with Madeleine's cousin Loren to visit. These are our new friends who had it in their heart to welcome Madeleine into theirs and put their efforts into raising money to help our family because, "it was the least we could do."  Let's just say "the least they could do" is truly the most, because it will help us for months! Thank you so much to our family & everyone who participated in the Score for Madeleine Broomball event, and Cedars-Sinai community who gave to help us. You are forever in our hearts and thanks!!!!! 

Saturday, March 17, 2012

Day 73 - End of Cycle 2

A busy, busy week. Madeleine got everything completed on her checklist. Here are the results:


Smiling at Daddy
* MRI's of her brain and spine - we were SO HAPPY to report on Monday evening that the MRI came back without ANY evidence of disease or spreading. For all intents and purposes, she is cancer-free!!! That was really the biggest news and happy dance of the week.


* Another lumbar puncture - She did amazing on Thursday. We found out Friday afternoon that the tests all came back negative, a huge plus is the right direction.
Sitting on her own looking at her puppy
* Audiology test for hearing - this may be the next biggest news of the week: at this juncture of treatment the doctors were expecting that Madeleine would have more hearing loss into the speaking levels of hearing. Well, last month she had signs of high pitch hearing loss, and Thursday's test showed NO HEARING LOSS AT ALL!! As her Nana says, "when God heals, He doesn't half-way heal! He is going to heal her completely!" We were surprised and overjoyed we're not picking out hot pink hearing aids just yet ;)
* A surgery to replace her CVC, the line in her chest - removed from the left side of her chest and reinserted into her neck on her right side. Because of this re-positioning, it's not likely that she'll have the same problems as before with the line moving out of place, difficulty drawing blood, etc. She's been a little bit sore on both sides of her chest and back but that should heal up quickly.
Notice the leg lifts! 
* Be completely off the morphine and IV nutrition - she's off the morphine as of Thursday and has her last wean from the IV Saturday morning, if necessary! So far into the night they have NOT put her back on it!   
* Be 100% recovered - just about! She's been getting back into the swing of things eating and a recovering belly and gut certainly doesn't help. We have to feed smaller amounts more frequently again, so that has been the focus of her recovery since Thursday afternoon. As long as Madeleine can take in enough calories by nursing, she will be discharged Saturday morning and we'll get to be home for a couple of days as a family. This weekend is supposed to rain, so it's just our kind of weekend: crock pot meals, movies and staying in! :) Annalise will be happy to be home too with her stuff and her bed. She sometimes has difficulty being home for just an afternoon, she doesn't want to leave to go anywhere thinking we're dropping her off and going back to the hospital. So we are all really looking forward to the weekend.
Playing independently with her toys
Today is day 73 inpatient, and many more to go, but right now we're all doing pretty well and gearing up for chemo again next week. Looking forward to the weekend :)

Thursday, March 15, 2012

Grass Valley Breakfast Benefit THIS SATURDAY

Amazing People coming out of the woodwork for Madeleine! She is touching so many people with her story, I can't thank people enough for caring and loving her...

Mr. Bob Tonnies is the owner of Gold Rush Burgers in Grass Valley, CA and generously donated for the April 7 Grass Valley Benefit. He subsequently called Shawn and explained he is launching a Breakfast Menu for the restaurant and offered to change the event to benefit Madeleine. The employees have generously VOLUNTEERED their work time and 100% of the net proceeds are being donated to Madeleine "to make this a truly special event." 

So THIS SATURDAY, March 17th - St. Patrick's Day - you can make a reservation for your party in the 8:00, 9:00 or 10:00 slot by joining the Facebook event, RSVP'ing on our blog home page, or calling in to Shawn at 913-2732. We appreciate and love our Grass Valley family so much, and can't thank Shawn, Jordan, Michelle, Angela, and Amber enough for all their VOLUNTEERED hard work to help our family. Much love!!

Saturday, March 17
Gold Rush Burgers & BBQ
8:00am to 11:00am
108 E. Main Street, Grass Valley
(530) 272-8080 Restaurant
(530) 913-2732 Reservations for this event ONLY
https://www.facebook.com/events/319519748108929/

Tuesday, March 13, 2012

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!  

Monday, March 12, 2012

THE TUMOR IS GONE!

In recovery after surgery & MRI's
WE RECEIVED THE BEST NEWS IN THE WORLD TODAY ~ THE TUMOR IS GONE! Thank you GOD for protecting our baby! For healing her thus far and for giving her the strength, patience and  perseverance to continue on this ever increasingly challenging journey... 

Madeleine's day began with surgery to replace the central line catheter in her chest. This is the IV access directly into her heart and bloodstream to receive her chemo. It was previously on the left side of her chest and for a variety of reasons the line inside was able to migrate out of the main artery and was making it difficult to draw blood for her daily labs. In addition, the bacterial infection pretty much guaranteed the line had to be replaced. Surgery and anesthesia took about 2 hours before she was moved downstairs into the MRI room. This MRI, unlike those in the past took about 3 hours because they were carefully imaging her brain and spine looking for evidence of the disease and tumor. On the MRI last month after the brain surgery, they found a small remaining piece of tumor and we entered into this second cycle fingers crossed hoping and praying that the chemo would reduce, or better yet, dissolve what was left and our oncologist, Dr. Davidson practically ran to the neuro-radiologist to read the MRI when it was completed to find out the results. We all couldn't be happier and prouder of her!!!!!!!

It's important to celebrate this milestone: it is such a huge victory for Madeleine!! And the children without the bulk tumor from the beginning have succeeded in beating this disease. It's unfortunate that removal of the tumor does not mean "cured" so it's so important to celebrate now, have peace, have love and joy, and be ready to continue the fight through the remaining cycles of chemo so we can put this all behind us and MADELEINE CAN MAKE HISTORY! 

Surgery & MRI Today

Madeleine has been up since 7am very happy & cheery! Now that she's calming before transport comes to take her for the CVC replacement surgery, I opened my daily devotional: again, I received Psalm 27:14, as well as, "After all; The Lord is good to those whose hope is in him, to the one who seeks him;  ( Lamentations 3:25 )"   and concluded with " Now Veronica, in the name of the Father, andthe Son, and the Holy Spirit, may the Grace ofthe Lord be with you, and grant you peace! Amen."

Yes, indeed: Amen!

Sent from my Verizon Wireless BlackBerry

Saturday, March 10, 2012

Madeleine is Well Again

The last week has been a slow and steady recovery and Madeleine is doing much better. Her white blood cell count is now within normal range, red blood cell is a little on the low side, and her platelet count is up and down but considered stable. Her belly has reduced down to normal and 12 centimeters have come off her waistline. Her ileus is almost completely resolved as she is passing gas rather than trapping it in her bowels, and we're just waiting for another stool or two before they will clear her to breastfeed again and reduce or discontinue her IV nutrition. Believe it or not, I'm still pumping several times a day in order for her to continue breastfeeding. Last Sunday I mentioned she had a checklist to complete before going home:


Heal with her belly and gut Ã¼ 
Clear all the fluid from her lungs without further ailment Ã¼
MRI's of her brain and spine - scheduled for Monday, 3/12
Another lumbar puncture - scheduled for Thursday, 3/15
A surgery to replace her CVC - the line in her chest - scheduled for Monday 3/12
Be completely off the morphine and IV nutrition - we started weaning off the morphine yesterday, 5-6 days process  
Be 100% recovered - ALMOST THERE! :)


The MRI's on Monday will examine her brain again for the remaining piece of tumor, the size of the ventricles, other markers of her hydrocephalus and evidence of disease to serve as yet another baseline going into the next cycle of chemo and to determine the safety of the next lumbar puncture. The LP will be done next week as well to ensure that the chemo is working and the disease has not metastasized through the cerebral fluid.  They will check her kidney and liver functions as well as her hearing all next week (One of the main side effects to the chemo is loss of hearing; Madeleine will very likely need hearing aids as she grows up and into adulthood). 


So next week is a big week; this weekend she'll continue to rest and recover her bowels and hopefully eliminate whatever pain is residual from the mucositis and ileus. I hope to get home for a day and spend some quality time with Annalise while Madeleine is doing well and Daddy can care for her without me. We'll also be praying and keeping our fingers crossed for next weekend at home all of us together, our cherished little breaks away from the hospital. 

Tuesday, March 6, 2012

Latest fundraiser: Don't Worry Be Happy!

Created to spread the message of hope, happiness and love!
When Kevin Carlberg was diagnosed with brain cancer he donned his “Don’t Worry Be Happy” shirt and wore it everywhere. He explained his life’s philosophy, “I’m happy and I want to make other people feel happy too, and know that you can survive this.” Embodying this simple mantra, he miraculously thrived, six years longer than ever expected. He inspired dozens of news stories, and helped raise millions of dollars for cancer research. This powerful message asks you to realize that “worry” over a future that may never come causes disease. Embrace the present, and choose wellness by being happy. Wearing this shirt will uplift you and those around you giving hope to those who need it the most. Surround every survivor with this message. Be the spark of hope and light that creates a miracle as it did for Kevin.  

This fundraiser will raise funds to help cover the medical expenses and genetic testing for Madeleine and our family to give the doctors more information about AT/RT and how to help the future of our family. There are LOTS of styles, sizes and merchandise! Please check it out at your convenience and remember to include "Madeleine Vazquez" in your Note to Seller. Much love!!

http://dwbhshirts.com/fundraisers-2/madeleine-vazquez/

*Cash or online Donations through the www.dontworrybehappyfoundation.org are 100% tax deductible and 100% of your donation will directly benefit Madeleine
*Purchase of "Don't Worry Be Happy" t-shirts & merchandise is not tax deductible and approximately 40-50% of the proceeds will directly benefit Madeleine

Blood & Platelet donations

WOW, this little girl has inspired a full blood drive it seems! I am amazed at the response from so many far and near, it is truly amazing. THANK YOU!
Coincidentally we had a meeting with a blood bank supervisor Monday after I made the post on Sunday; she assured us that with the student population as well as the healthcare professionals and incentives to employees, the blood bank is rarely out of available products to supply the needs of the patients in the hospital. What I intended to convey in our Sunday post was that we personally know only one direct donor, i.e. all of his donations are reserved specifically for Madeleine. She has by no means run out of blood or platelets to date. Up until we met with the supervisor, I was concerned about the availability of those products. We welcome any directed donations for Madeleine, and thank you for your time to do this for her!!

So, for everyone who has asked specifically how to DIRECT DONATE for Madeleine:
*Best way is to donate here at the UCLA Blood and Platelet Center: 1045 Gayley Avenue, Los Angeles (between Kinross and Weyburn) 
*They accept walk-ins and appointments by calling (310) 825-0888 or make an appointment via their website: http://gotblood.ucla.edu/body.cfm?id=50
*On the back of the questionnaire there is a place to write in for Direct Donation: Madeleine Vazquez
*To be sure your donation has been reserved for Madeleine, YOU personally need to call the donation center a few days after your donation to inquire due to confidentiality policies.  
*Blood donations take approximately 10-15 minutes for appointments, or 30 minutes for walk-ins to complete and are good for 30 days.
*Platelet donations (and what Madeleine needs more often) take approximately 2.5-3 hours to complete and are good for 5 days.
**Madeleine will be in need of these products each month until approximately June/July, so it is not imperative that we have numerous donors now in March, but over the next several months.

Compatible blood types, all CMV-neg:
A-neg: blood or platelets
O-neg: blood
AB-neg: platelets
any other: not compatible

*Out of town donors/non-UCLA donations
Not all donation centers screen for CMV. 
Each donation center has policies about whether they will ship out donations or not. 
Please note: I cannot provide Dr.'s orders for you to ship to UCLA
There is likely an added cost to ship to UCLA from your donation center if they allow it
You need to call the donation center at (310) 825-0888 to get complete instructions if you're able to get past these hurdles. If you can't, please donate anyway!! Because of community donors, Madeleine still has been able to get the blood and platelets she needs.

Sunday, March 4, 2012

Weekend Update

THANK YOU THANK YOU THANK YOU for your focused and committed prayers!
I received an email from someone who I have never met, with Psalm 27:12-14 and "Release [my] expectations into His hands. The Lord is working on [our] behalf...while we are waiting, God is working." This spoke to me in many ways, as patience has truly been what has gotten us through the last 9 days. Saturday morning we were overjoyed that Madeleine had a bowel movement, the first one of the week and so desperately needed to indicate that her gut is beginning to heal. Her personality is also changing, she is happier I'm sure as a result of feeling better. We have to sit and wait to see how quickly she will heal. It is likely though that we could not get a break at home before beginning the next cycle of chemo. She has to first heal with her belly and gut and clear all the fluid from her lungs without further ailment. She also has two more MRI's of her brain and spine, another lumbar puncture, a surgery to replace her CVC - the line in her chest, be completely off the morphine and IV nutrition, and be 100% recovered. While we've called her the "overachiever," we are by no means pushing her to get well faster than she can; she is so delicate right now. WE ARE STILL VERY HOPEFUL that she will continue to do well throughout her treatment. We are suffering the "growing pains" of patience and having to have it whether we like it or not.

Due to her slow recovery, Madeleine has needed platelets nearly every day for the last week and a half. So far, there is only ONE PERSON who is a compatible direct donor for her, and we so graciously thank him for his continued donations. Even I cannot donate for her because she requires CMV-negative status blood products, which can only be A-negative, and the availability of her products I worry about. CMV status indicates exposure to a virus that does not affect the person who has it, but will affect compatibility in donations. About 80% of ALL people are CMV positive. Infants and especially low immune system infants require CMV negative products for their protection. If you have ever donated blood and been told you are a "baby donor," that is what it means. So, if by chance you are A-negative or O-negative blood type and know you are also CMV negative or want to find out, please let me know if you would consider being a blood and/or platelet donor for Madeleine. Turns out these people are few and far between.

Thursday, March 1, 2012

The good, the bad and the ugly

Thank you for all your prayers, I feel like they are finally getting through. This morning when I was up with Madeleine she seemed to have new life breathed into her, her fighting spirit renewed, like she herself was acknowledging she is just "over it," the not being able to move on her own initiative, having people rotate her to prevent skin breakdown, having the oxygen in her nose. Even though her morning labs do not support it, she truly does seem to be feeling better just through her personality. THANK YOU JESUS!

Our call for prayers this week has been nothing shy of desperation, feeling helpless in this situation. Jeff and I both strongly feel that Madeleine has come so far in this that we can't simply just sit and wait for her to get better. Or worse.
Through every true journey or endeavor, there is the good, the bad and the ugly. Cancer patients and their families know this all too well: Faith is essential, joy is sparing, disappointment a plenty, and patience crucial. For everyone outside the hospital room, we choose to predominantly share the good days and updates with everyone to keep the positive thinking and prayers coming. We share a little bit of the bad because it explains why we aren't answering the phone, why we aren't up to date on Facebook or our email, why we don't respond to requests to visit. Madeleine is not doing excellent every day, so it's best for us to share when she surprises us all. 

What has transpired since Friday night has been a mix of bad and ugly: this poor little girl has been slow to recover from all of the things that hit her all at once. We really just have to be patient and help her rest to promote her rejuvenation. These last few days, or week rather! have been so hard on us to watch her go through, and exponentially harder for her to endure. Her belly situation has not improved and the additional morphine she needed to stabilize her pain management made her skin itchy. They have condensed her fluids to give her what she needs into the smallest volume possible to help with her fluid retention. She is on oxygen now to help her absorb better quality oxygen through her compressed lungs; until her belly size reduces, her lungs are pushed up making it hard for her to take deep breaths or maintain rhythmic breathing. The ugly experienced this week has dropped us to our knees, pleading and begging both the doctors and God to intervene and prevent this child from meeting her demise from an infection and compounded issues when she has prevailed throughout every single tough decision in the effort to make her well. Last night in prayer several times I laid hands upon her belly and tried so desperately to keep my faith that God is listening. This morning I feel as though our prayers have been heard. She will be getting better, I know it.