A Letter to Madeleine

We miss you so much Precious!!
We talked about you a lot today. Sister told me more than once that she needs you. I told her I need you too. I can't listen to the audio on these videos.... I literally can't breathe if I do. It still just hurts too too too much. But that's ok; I would live with this pain forever and ever if it meant you did not hurt ever again. And I know you don't. We got a new special book that sister and I read together. It's called Mommy Please Don't Cry, there are no tears in heaven. Sister likes to tell me that when she sees I'm sad. I appreciate her help more than ever now. She helps me to get up and get on with each day. One day she will understand how she saved me during this time of missing you. I miss you baby, I love you so much. I can't wait to get to you. Love you my Sunshine. kiss kiss

Everything's Gonna Be Alright

When I first fell in love with Jeff, I "gave" him this song for our first Valentine's Day - there was a lot happening at the time and I felt like it expressed how I felt he was there for me.

This song has a new meaning for me: this is my song for Madeleine. Especially when, for whatever reason, people forget what she's really going through - it's a good thing to not focus on the big picture cause it's too emotional - but I hope not easy to forget the MAGNITUDE of her accomplishments. It completely hit home for me when a doctor (thankfully not one on our team) told us that Madeleine would not survive. And we politely told him you can say whatever you like, we know she's going to be alright.

I just want you close
Where you can stay forever
You can be sure
That it will only get better

You and me together
Through the days and nights
I don't worry 'cause
Everything's going to be alright
People keep talking they can say what they like
But all i know is everything's going to be alright

No one, no one, no one
Can get in the way of what I'm feeling
No one, no one, no one
Can get in the way of what I feel for you, you, you
Can get in the way of what I feel for you

When the rain is pouring down
And my heart is hurting
You will always be around
This I know for certain

You and me together
Through the days and nights
I don't worry 'cause
Everything's going to be alright
People keep talking they can say what they like
But all i know is everything's going to be alright

Thank You to Cold Springs Middle School for "Madeleine's March"

Madeleine's March it was to be called, a coin drive in honor of our Madeleine and a way for Veronica's 11-yr old sister Jordyn and her classmates to understand pediatric cancer. How hard it has been for parents and adults to understand why Madeleine was diagnosed with a brain tumor and would have to go through several surgeries and chemotherapy, we can only imagine how much harder it has been for middle school kids to grasp the idea and thought of her journey. "She's only a little baby" was something that has frequently been said; "I hope she doesn't have to be in pain," the kids wrote in sympathy cards to Jordyn that she shared with us. For kids, cancer is just as scary. For Jordyn, I think she immediately feared the worst when we found out the diagnosis: her best friend's mother had been taken by cancer in 2008 when the girls were just 8 years old and those memories and love for Cindy have never faded. I wasn't sure exactly how to explain to Jordyn what was happening and why. She had come to visit Madeleine when she was "still healthy" around 8 weeks of age when life was normal. Christmas would take place early last year so that my mother could come to Los Angeles to support us and be with us for Madeleine's biopsy surgery. Jordyn had a lot of questions and was so very concerned about Madeleine, she went to school and began to share her thoughts and feelings with her teacher Mr. Hurley and her classmates. And from the wave of concern and desire to help, Madeleine's March was born.

For March and April Jordyn spearheaded collecting coin donations from their classrooms and she sold "Madeleine's Journey" wristbands for $5 each; Mr. Hurley passed out candy bars at lunch breaks to students sporting their wristband, and the commitment from their teachers that they would do something embarrassing if their classes chose to participate in the fundraiser. The school principal mentioned to my mother that these kids really have heart; they are frequently eager to help others less fortunate and want to do charitable works for people in the community as they've demonstrated through numerous other fundraisers, visiting seniors in nursing facilities, having a can drive at Thanksgiving and others. The kids raised over $1,200 of their own money in the coin drive, over $350 in wristband sales, and another $200 at the assembly this morning (May 9th) in under 5 minutes for the opportunity to spray their principal with silly string. Two local news channels featured their effort on the evening newscasts! I think it's so important to positively reinforce kids when they show tremendous character, and we couldn't be prouder of Jordyn and her classmates. Thank you so very much to Mr. Hurley, the Cold Spring MS administration and all of the students for their efforts in bringing awareness to pediatric cancer and for being a part of making Madeleine well again!

Jordyn's interview on Kolo Channel 8
Students Win Bet With Teachers


KRNV Channel 4
clip can be seen with 1:10 left on video

More Antibiotics

The last few days Madeleine has been successful in keeping her fever away. Once she spiked that last fever the docs put her on two very general antibiotics that are heavy hitters to basically knock out anything that could be causing the fevers as a precaution, and then as the samples get sent in and the tests come back, they adjust the medications to treat exactly what the tests reveal.

This morning we saw a small little jump in her white count and her blood cultures continue to come back negative (basically the blood they drew when she had the fever is put into petrie dishes and they wait to see what if anything grows for bacteria, etc so they can treat it). They will watch the cultures and clear her if they come back negative for 5 days. Her stool samples however came back this afternoon positive for C. diff, a bacteria that causes diarrhea and is not uncommon for chemotherapy patients but is less common for babies. Anyone with an infant knows that babies poop all the time, sometimes, skip a day... it's all normal and individual. It's very likely that Madeleine initially got her fever as her stem cells were doing what they were supposed to do in regenerating her immune system, and that the blanket antibiotics she was given to safeguard her from a potentially worse infection is the actual cause of the C.diff - greaaaaaaaaaaat. =( So now she will be on a medication to treat the C.diff for at least 10 days. This diagnosis potentially explains her shortened feedings and how she was arching her back at times when feeding - she is likely having some pain in her belly from the diarrhea. All manageable symptoms though, I assure you. 

She has moments of discomfort but overall she's still happy, still playing, still sitting up, etc. The C.diff also will not prevent her from going home either because we can easily take the medication home. So tomorrow we'll talk to the docs about the going home plan: she still needs the monthly kidney and hearing tests scheduled and completed before she can be discharged so hopefully they can get those done between Wednesday and Friday. What a great Mother's Day gift to be home with both of my kids.

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!!!!! 

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!