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.

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.

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.

Day 9- New Years Eve

Thank you everyone for your texts, emails and calls to check on Madeleine, we truly appreciate everyone's concerns and wanting to hear the news. Of course our first priority is always the baby and speaking with the doctors and care providers before anything else.

The surgery on Thursday went phenomenally. Our neurosurgeon came out immediately afterward to confirm and reassure us that she was doing absolutely beautifully. It took some time to get her back upstairs and comfortable, even though she mostly slept off her anesthesia and we had lots of visitors, including our Dr specialists. She's a little uncomfortable with the healing incisions on her head but is handling the discomfort very well. We continue to watch over her very closely, snuggle her every opportunity and try to reassure her that we won't be in this place forever.

She looks amazing. This child has shown so many people what courage and strength look like. She is handling all of her procedures very very well, all things considered. Each day we set a goal whether it be resting, feeding, whatever and have met all of our daily goals over the last week. Madeleine is truly a strong little survivor in my opinion. She is doing so well, they've moved us Friday morning (at 2am) to the pediatrics floor out of ICU, and we've just learned that unfortunately due to insurance red tape, they're going to keep us the duration of this weekend and next week instead of sending us home so as to not jeopardize Madeleine's investigative tests prior to her chemotherapy. Apparently insurance won't cover the admission for her tests next week because they are considered "outpatient". :( so what's another holiday in the hospital....

It's too early to have the confirmation on the type of tumor she has; they think it's a malignant germ cell tumor of the pineal gland, which turns out to be not very common in people her age but does have a very high success rate of treatment. We do not expect to hear that it has spread to any other area of her body but they want to do a spinal tap to make sure. Over the next week-10 days, the specialists will perform the tests they need from the biopsy, prepare their recommendation for therapy, put in a central line access in preparation for her treatment and she will likely undergo a few more mini procedures such as another MRI and the spinal tap (mini considering what she's already been through). We are preparing emotionally & mentally for her to undergo inpatient chemotherapy, at least that's what we expect them to tell us, that could last 4-6 months. They've advised us that chemo could essentially begin immediately after the central line and spinal tap are completed. Our plan was to go home today and be re-admitted Wed or Thursday evening in preparation but have just learned that's not possible unless we have boo-koo bucks to pay for those tests they need. bummer!

As part of her chemotherapy treatment, Madeleine will likely need blood transfusions. She and I are an exact type match of A- so my first appointment to direct donate here at UCLA is Tuesday and I will continue to donate throughout the duration of her treatment as often as they let me. If you would like more information on how to donate blood for Madeleine, the website is www.gotblood.ucla.edu. I'll have more info on that after Tuesday.

Many of you have asked how Annalise is doing. She is coping much better; she fully understands that sister is sick and she is very concerned for her. Any of her confusion and frustration has been directed towards us, which we can certainly handle and are learning from the child development team here ways to help her communicate. She has been able to come and visit every day.

Please rest assured that although Madeleine has not kicked this thing yet, she is doing very very well. Our updates may become once a week and really appreciate your continued prayers. Hopefully by Annalise's 3rd birthday in June Madeleine will be 100% tumor free or at least cured as much as possible for us to have a much needed family vacation together. Until that day, please keep our baby girl in your thoughts and prayers.