Sorry I haven't really been in the mood to update or talk to anyone. Although it sounds very silly to say or admit, the environment has a big impact on me when we're here, and I think on Madeleine as well. For people who have not been able to visit, the ped oncology unit is a long hallway of mostly private rooms. Towards the front door is the doctors' conference room, all of the utility rooms & staff lounge and a very busy nurse's station so it's NOISY; the rooms in the front section of the unit have thinner walls and a god-awful view of the building 50 yards away - you can't see the sky. 

Room 3515 has not been good to us; this is where we spent our very first chemo cycle when Madeleine was so sick, and again we came back to this room when she was transferred back from PICU during her sepsis episode. This room has bad vibes to me. It's also unfortunate that there are three babies, including Madeleine currently being treated, in 13, 15 and 17 that all set each other off when one of them cries because the walls are so thin. So needless to say, Momma has not been in the best of spirits. I've asked to change rooms. The second half of the unit has windows that see out to the front of the hospital, where there's sunshine and you can't hear all the nonsense in the hallway and the neighbors. It puts us all in a better place psychologically. It's hard to be upbeat or keep a positive attitude when the hate I have for this place - meaning the whole cancer thing and actually having to poison my daughter to make her well again - stares me in the face when all the little things get to me. I'm relieved a friend is coming to visit this afternoon and give me a hug.

But this isn't about me!!! I keep having to remind myself, this is all for and about Madeleine. Her chemo is officially OVER!!!! We now just ride out the symptoms and side effects as her bone marrow is completely wiped out and her body slowly recovers. The first 2-10 days are the hardest because she has contact precautions and we're not supposed to have skin-to-skin contact with her to protect ourselves from the chemo toxicity. Yea, explain that to a nursing infant who hasn't yet got solids down and is lip-locked against taking a bottle. (For moms that I thought either weren't trying hard enough or were exaggerating their kids not taking a bottle, I apologize for ever doubting you! Madeleine vehemently refuses!) Her vomiting is not quite yet under control so we're modifying her meds little by little so hopefully she's not feeling too bad. It's all manageable but anyone with kids knows that when your little one is sick, all you want is to make them better.

My sweet angel

Chemo is officially over, just resting and getting through the symptoms and side effects now. Seeing her at peace like this gives me peace as well.

Admitted today

This morning we admitted Madeleine for her final chemotherapy cycle/stem cell transplant! Ready to get this show on the road. Been a busy day but all is well, should get chemo hung this afternoon and be onto the countdown. More to come.
Sent from my Verizon Wireless BlackBerry

watching cartoons in the jumper

Life at Home

Madeleine does so amazing each time she's home. I'm so proud of all that she has accomplished! They warned us in the beginning that it was very likely that Madeleine would not be able to meet her milestones or do a lot of the things healthy kids her age would be doing - and look at her! Playing on her tummy, bringing her legs up preparing to crawl. Take THAT cancer! And I know I say it every time, but she really is in love with Sis. She squeals now at Annalise, and they have their own conversations. They are learning to play with each other's toys, something more difficult for Sis but she's getting better about not getting mad and sharing. Madeleine is also so much more sturdy sitting up on her own, although we have to be very careful about making sure she doesn't hit her head on our tile floors so we surround her with pillows when they play on the floor. She's also getting more acquainted with her jumper that totally freaked her out the first few times she was put in it to jump and sit herself upright.

Late afternoon nap after playing all day

At clinic 5/22

The last 10 days have been at home. We're so grateful for this time, even though we have days still completely swallowed up by Madeleine's medical care. In 10 days we've spent 3 of them back at the clinic getting labs drawn and check ups. Although some of Madeleine's counts are within normal range, some of the most important, her ANC, is still teetering around 500 (0.5) - she needs to be above 1,000 (or 1.0) in order to begin her 5th and FINAL cycle of chemo. She's been within the 0.4-0.6 range for almost 2 weeks. Dr. Davidson has told us that each conditioning chemo is harder on her body and even though she's getting her cells back, her bone marrow is completely beat up and having difficulty recovering. Dr was hoping to begin her final chemo today, Friday; but without counts, we're forced out into next week. 

At clinic 5/24

Yesterday Madeleine received a shot that helps boost her white blood cells with the hopes that by Sunday/Monday her count will be high enough to get admitted. Daddy is not very happy that, due to the holiday weekend the outpatient lab does not employ an RN that can draw blood from her central line, the lab phlebotomist will have to poke her to draw blood :( to check a white blood count that may still not be high enough. Also, because the timing is so critical with the cell transfusion, the only other time next week to begin is Thursday/Friday. So we'll see. It's been difficult to lay and wait on this day, that day, not knowing exactly when to be prepared to go back, especially with 2 small kids and all of us really preferring to be home. The general consensus is that Madeleine should be readmitted by next Friday, June 1. We also have to expect that her last transplant will take her the longest to recover, both inpatient and afterwards, but she will get a bigger bag of stem cells this last time to give her the best opportunity at a full recovery. 
Last week I read a beautifully written article published last year in the New Yorker by a man who's 9-month old daughter had also been diagnosed with the A.T.R.T. I felt like so much of what he was able to truly capture in words was our experience exactly; until I got to the last page of the article. Isabel didn't make it. I couldn't even read the words much less finish it. I slammed my laptop shut and grabbed up Madeleine so quickly holding her to my chest and praying over, kissing her head. I would say that lately my fears have been giving me anxiety, keeping me up at night, though I can't bring myself to write them. I'm afraid they would come true. Madeleine has walked a tightrope since January. June signifies the other platform. That's all I want to envision in my own head, her reaching that platform and waving with her glorious smile that brings joy to my heart and tears to my eyes. As our dear friend told me, she has the strength of soldiers.

Happy girls

Morning checkup 5/18

Watching cartoons 5/16

Sisters Reunited

Day 117 - Discharged!

We're finally walking out the door!
This morning Madeleine had to repeat the kidney GFR test (done last Friday) due to inconclusive results. She also received a 3hr blood transfusion to top her off for our time at home.
We'll be back Friday for labs & a check up. Until then, we're so happy to be going home!!!!

National Nurses' Week

There was so much happening last week, I forgot to complete this post, and it's important because Madeleine's success is made possible by so many that we are forever grateful to.


Last week was National Nurses' Week and we have what they call a Continued Care list of nurses who care for Madeleine week after week that have really grown to love her and are becoming friends :) 
We are so proud and grateful to thank our Continued Care Team: Jaclyn, Katie, Laurin, Lyndsey, Annette, Nancy S., Selina, Fariba, Kristen V., Janet, Rebecca, Cathy, Caroline, Jett, Kelly, Joe, Mina, Lauren B., MaryAnn, Maricel, Debbie, Melody, Kathy (PICU); Valerie, Nery, Joe Joe, Christie M., Danielle; LaVette and Berkeley. These wonderful people have made our "every parents' nightmare" into an experience we won't soon forget. Our zero tolerance for incompetence is not even a shred of an issue with the 3rd Floor team, and we love them and hope they will continue to be a part of ours and Madeleine's life for years to come.

Mother's Day

This morning I have been a yo-yo. 

Big sister on Mother's Day

I woke up to a precious, sweet little voice over the phone who so perfectly said "Happy Mother's Day," "I love you," and informed everyone she saw that "I'm talking to my Mommy." =) She put the biggest smile on my face! It has been 21 days since we've seen Annalise and I was holding onto every thread that we would be discharged today so I could run to her sweet, laughing smiling face when she opened the gate and exclaimed "MOMMY!!" like she did the last time I went to pick her up. Awh!!!!!!!!!! those memories break my heart wide open with gratitude and love. I miss her terribly.

The resident doc came by while Madeleine and I were talking to Annalise over the phone: her ANC has come up to 500! but we need it to be 1,000 before you can go home. I was crushed. I was quiet. I didn't even look at her as she gave me the rest of the morning report (all good news) and asked if there was anything she could do. She even apologized. I am (much to the chagrin of my sweetheart) an open book; I wear my emotions on my sleeve, or rather, all over my face. I can't help it, it's just who I am. Unfortunately everyone knows when I'm upset and it isn't the first time that the doctors or nurses have responded to simply the look on my face. The resident must have mentioned something to our nurse because she too came in ready to comfort me, apologizing. I felt justified in my tears and my silent anger - the reason they are keeping Madeleine is to wean her from one of the medications since that can't be done at home; but of course I was focused on the ANC number - her counts can come up at home - if that's the only reason it's not good enough.

Dr. Davidson and the fellow came in a short time after that and were very empathetic; too much almost. Because instead of being grateful and appreciative that Madeleine is not sick, does not have a fever, does not have an infection, does not have something more serious than a low ANC - I was bellyaching about not going home. This Mother's Day could be so much worse!! What in God's name is my friggin problem! Yes I miss Annalise terribly, but she's doing great and she's healthy and she's going to have a lovely day dressing up like a little lady and whatever the grandparents have in mind for the family she is going to enjoy. Our Madeleine is doing great, albeit her recovery is slower than last cycle and we're so incredibly sick of being stuck at the hospital - but she's well. The all, most important thing that matters in our life: she's well. 

Lord, please forgive me of my selfishness and for initially taking this day for granted. Thank you for two healthy children, their laughter and smiles, and for my rock, Jeff. Lord, thank you for blessing our family. Please continue to be with Lisa and Lucas; send your guardian angels to protect him and embrace his mother with your love that she would have no hesitation in putting all her faith in You to keep her son safe. In Jesus' name!

My Mother's Day gift

Daddy has said it on so many occasions: there's going to be a lot of "do-overs" next year. He's right. Yes, we've missed out on all of our holidays (the important ones and the Hallmark ones) but it's temporary and it's for good reason. We're saving Madeleine. 

(In your prayers today, please pray for Baby Lucas and his mother Lisa. We know each other by 6 degrees of separation. Lucas is undergoing his first cycle of chemo after having his second CPC brain tumor removed, and he's currently in the PICU fighting an infection & fever. Lisa is enduring her greatest fears that I know all too well; please pray for them both.)

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

Day 112 - latest update is good

Madeleine's  having a really great day; days like today make me realize in retrospect how icky she must have been feeling earlier in the week. That C.diff has been causing lots of gas pains in her belly and her feedings decreased because of it and she was cranky, though I can't blame her. She was also anemic. Now that she's had the medicine to treat the C.diff for two days and a blood transfusion this morning, she's in much better spirits, talking a lot more, feeding better, and sleeping better. 
I've kept forgetting to mention that she has put on weight! This is a pretty big deal because since her septic episode at the end of February, she struggled with gaining weight -in April she was measuring 85% percentile for her height and only 10% for her weight. She was tall and skinny through March and most of April. She's now back over 7kg (16 lbs!) gaining over 2 lbs in the last 2-3 weeks. And despite the conditioning chemo and stem cell transplants, her eyelashes and eyebrows are slowly starting to grow back :) 
Her kidney GFR test is scheduled for Friday (tomorrow) and if her counts are high enough, she could be discharged over the weekend and come back as outpatient for her audiogram scheduled for Monday afternoon. If all goes according to plan, she will begin her 5th & FINAL cycle of chemo/BMT on Thursday, May 24! On that schedule we will be home just in time for big sister's 3rd birthday. I think we can finally see the light at the end of the tunnel, the finish line, when we can start to put the stress behind us and move forward with a new awareness and continued care plan for Madeleine to continue growing up healthy and beautiful.

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.

The fever broke

Thank God for antibiotics!

It was a little bit scary when her fever peaked at 38.9C even after Tylenol (that's 103.6F). She was visibly not feeling well and she was burning up. Jeff asked if we had to be concerned about seizures, one of my worst fears. But it broke within a few hours and has stayed gone! She had a low grade fever (37.9C) earlier in the day and the Dr went ahead and ordered the blood cultures so now we're just waiting for those cultures to come back, which they will watch for 5 days. Evidently it's VERY common for stem cell transplant patients to have fevers; in fact they expect it. Of course I didn't know that at the time; I was planning for us to be home by Friday. It's possible she could still go home by Friday but it could be best to not have those expectations and just let the cycle go as it may. In any event, she is finally resting this morning, her temp is way down to normal and she is comfortable. More to come when the cultures come back.

Madeleine has a Fever

My fear is being interrupted by Madeleine's laughter playing with her Daddy.
These times suck. There's no other way to put it.
I cannot fear this; "Walk by faith, not by sight"

7 months old and 4th chemo cycle

Our sweet angel had her 7 month birthday Wednesday!! I think most parents celebrate these monthly "birthdays" with their first child and every subsequent child usually gets a little lost in the lovely chaos of life. Just a few months ago we didn't know if we'd get to this day - but God has proven how great He is! and Madeleine is kickin butt and stealin hearts along the way! She's a rockstar in the heme/onc unit - everyone asks how she's doing right before they tell me "I hear she's doing great!" and these are nurses, doctors and staff that aren't taking care of her for the day. It makes us feel good that these we've entrusted to make her well care so much about her and many on a personal level.

Thursday is 9 days post chemo and Day+6 on the BMT schedule. All things considered she's doing pretty well. The nausea and vomiting is a delicate balancing act; Monday was fraught with some wretching and vomiting and by evening we changed the dosage again. Tuesday came and went without incident until evening and Wednesday was mixed in terms of frequency and volume of the vomiting. I know that any adult would be groaning over the inconsistency of medications and unpredictable vomiting and she handles it with such stride. She continues to keep her lovely smile for us and everyone who comes to see her, and she's playing and baby talking. She doesn't appear to be too inconvenienced by it all. As of Tuesday her counts are totally down and she got platelets.

And last Friday morning (4/27) she was sitting up all by herself!! Her physical therapist has been working with her to help her sit up but she's definitely Jeff's daughter - stubborn! As well as mine - she has to enjoy tummy time on her terms. So some days she sits up better than others on her own, but she definitely prefers to sit or stand (with support) more than lay on her belly and/or roll. We've started putting her in the corner of the plush chair to help give her support when she loses balance and this gives her the independence to play with her toys or read her books. She's even getting testy when she's on her back, so I have a feeling she'll be determined to sit up on her own consistently very soon :)