calling in extra prayers!

Madeleine's condition is not improving as well as we had hoped. The ileus - slowed or stopped GI movement - is creating really bad belly distention. She looks like a watermelon with legs, it's terrible. Many of the nurses have told us they haven't seen it this bad before and we're worried about an internal rupture. The doctors are carefully managing the details of her lab work, urine output, volume intake and vitamin levels and we're now asking them to look at the broad strokes: her girth is up almost 5 cm in 5 days, 1.5cm just today, and her weight is now 8.9 kg when she was 7.2kg on Thursday. Her belly cannot get any bigger, the fluid and air are running out of places to go. We're also concerned that the hydrocephalus will present again by increased pressure in the brain as a result of the excess fluid from the brain not having a place to drain to, as her eyes are slightly bulging when she's awake.

We've laid hands on her and prayed for her bowels to begin moving and the pressure to decrease dramatically - please keep this prayer continuing! 

Score for Madeleine! Broomball Charity Event

 Jeff's cousin Loren is a stem cell research biologist at Cedars-Sinai Medical Center and one person we reached out to help us understand the stem cell transplants that Madeleine would eventually undergo as part of her therapy since Loren experiments with and leads research on induced pluripotent stem cells, i.e. she's really friggin smart! http://www.cedars-sinai.edu/Research-and-Education/Institutes/Regenerative-Medicine-Institute/Cores/RMI-Induced-Pluripotent-Stem-Cell-iPSC-Core-Facility.aspx

Two months ago, 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've 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! Here is the information for the benefit taking place SUNDAY, MARCH 11th  open to the Cedars community and anyone who can come and play! This information will remain on our Fundraisers and Donations page as well. 

In the Thick of It

Today is Monday and we were transferred back to the Hemo/onc floor late yesterday with stable vitals but certainly not without extra care; Madeleine has an assortment of issues we're trying to manage and balance. This round of chemo had really been going so well, it seemed only a matter of time before the "gotcha" moment. To somewhat recap, Madeleine spiked two fevers, displayed a distended belly and went into septic shock prompting the emergency response team to take her to ICU. There they focused on stabilizing her, determining the cause of her distention, the source of the infection and keeping her comfortable.

Her blood infection is nearly under control with antibiotics and the hard, melon belly she has is now the priority to help prevent her from getting a worse infection in her bowel. Her belly is also pushing upwards on her ribs and lungs making it much more difficult to breathe normally. Also without fail, the mucositis moved in Friday with minimal effect initially until the blood infection blew everything out of the water, so her pain escalated quickly; we awoke about 4am on Saturday in ICU to a screaming baby in excruciating pain and needing an urgent dose of morphine. Today our hemo/onc team confirmed she has what's called Ileus, where her bowels simply don't want to move from being sore and infected and become very slow, causing her belly to swell large and hard like a melon. These next few days were already expected to be the lull in her recovery time and the infection and ileus have exacerbated the situation. We're truly in the thick of her recovery where no news is a result of not having good news to report: this is very painful, she is extremely uncomfortable and often inconsolable when she is awake. At least now we can actively assist in improving her condition and making her feel better. Madeleine won't really start feeling better until her counts consistently come up, maybe by Wednesday or Thursday, and that will improve so many things: help her to fight off the infection, the mucositis sores will start to heal in turn making her gut feel better and improve functionally, and her breathing will improve as the gut does it's job and decreases the distention back to normal. In about a whole week she could be closer to normal, and until then, we just keep talking to her to ease her discomfort and support one another as it's increasingly hard on us. We give her medicine, it takes two to change her diaper right now by lifting her bottom gently, and understanding all the info coming from the doctors, to name a few. I read an article today on UCLA's website (the home page when you log into their wifi) about the strength of marriages. If anything has solidified our relationship, it is the illness of our child and the support we have for one another, day in and day out, without fail. For this reason, as well as all the others, I can't thank our family and friends enough for providing us with the support we need to stay together for Madeleine.

Till we can provide better news, please continue to keep Madeleine at the forefront of your prayers every day.

PICU Update

I apologize, I posted an update on Facebook and moved on to diaper changing duty. We are still in the PICU and Madeleine's vitals are stable. As of now the doctors are confirming a bacterial sepsis, it's a bacterial infection in her bloodstream which is consistent with her chemotherapy treatment, i.e. they expect it. This is a good thing because they've seen it plenty of times that there's a proven recipe how to treat it. A few other tests are pending and will likely be resolved by Monday I imagine. We're hoping her counts will begin to come up during this next week that will help her fight it off and feel better in general. Madeleine's symptoms include a distended belly, which is very uncomfortable for her. basically her belly looks a bit like a watermelon. Late tonight she was given a medication to help her pee to see if that helps to alleviate some of the discomfort and pressure. Her diaper area continues to be of concern and we're trying diligently to keep her as dry as possible. The good news is, she's resting now; bad news is, Mom and Dad are still very awake at 2am. It's hard to rest when your little one is so uncomfortable and we need to be on our toes, even with a nurse dedicated to only her and one other patient. Thanks to everyone for your prayers, please keep her in them as long as it takes to clear out the infection, our main priority. She has some other issues also pending that are not critical to her overall health but still important to her therapy that also still need to be worked out over the next 1-2 weeks. I'm going to try to get some sleep now and try to talk Daddy into doing the same thing. thank you for your prayers...

CALL FOR PRAYERS

Madeleine spiked two fevers this afternoon within a 5-hour period and very quickly became septic. She's been transferred to the PICU for closer observation until they can figure out exactly what's wrong and how to treat it. Right now Madeleine needs prayers to clear this infection ASAP! She's doing much better since being transferred but as we saw this afternoon, that can change quickly.
Sent from my Verizon Wireless BlackBerry

Ash Wednesday

Happy ash Wednesday! I just got my first ashes, and I'm super happy!

Sleeping Angel

After Madeleine's morning feed she was so comfortable in the position where I changed her I didn't have the heart to move her...

Round Two a success so far

I know I have a propensity to overreact when it comes to my girls. What can I say, Mama bear is instinctive. The first night of chemo when they gave her that medicine was a blessing in disguise! We switched to a different med that could be administered through the IV and WHAT a difference! We've had ZERO emesis to deal with and Madeleine still has an appetite and is still nursing like normal! We're so pleased with those improvements. It could also be the fact that the bulk tumor disease is gone and helping her body cope much better. Either way we're happy.
So we finished off the methotrexate without a hitch for Madeleine on Saturday night. Mom & Dad were literally up all night till 5am watching over her trying not to jinx it. Its pretty nasty stuff but evidently hugely popular at combating childhood cancers. The foley catheter placement did not go so well Saturday night so as a result Madeleine has to be changed every 30 minutes to protect her skin from chemo-infused waste. Hopefully this measure will prevent any skin infection when her counts really drop later this week. We've seen a slight drop in platelets already but nothing too drastic yet.
Otherwise, baby is doing awesome. She's resting, eating, and playing. She managed to completely roll over from back to tummy last night! :D I was so proud of her. She doesn't let anything stop her. She is teaching me the true meaning of strong-willed.
(special thank you to cousin Talia for making Madeleine's quilt, only her 2nd ever and it came out beautifully)

Getting Daddy love

Our humble thanks and stolen grace

Grace: Elegance or beauty of form, manner, motion, or action; a pleasing or attractive quality; favor or goodwill; a manifestation of favor; mercy. 

If you personally know Jeff; if you personally know me, you know that we are independent and strong-willed; at times even stubborn. We both have managed to provide for ourselves throughout our adult lives and never made it a point to ask for much, if anything at all. Knowing that we could not in good conscience "ask" for help, this blog was created as a gift from caring friends wishing to provide an avenue for prayers, communication, and gifts of kindness to help us stay by Madeleine's side throughout her treatment of this life-threatening disease. 

We have been overwhelmed, humbled, and literally brought to tears and prayers of gratitude by the generosity and kindness extended to us by friends, family and complete strangers. After so many years of remaining steadfastly independent, it has been a true testament of modesty to accept these gifts; because without them, we could be broken: broken in spirit and focus for Madeleine's needs. I believe with all my faith that our daughter is surviving this disease because of all the prayers near and far, and because we her parents are here, every moment of every day to show her love, support and comfort. When she doesn't understand what is happening to her, she understands her parents are here to hold her and love her.

It is with a very heavy heart that I acknowledge that some people would seek to destroy that grace, to utter words that would imply we are exploiting our circumstances or taking for granted what people have done for us. Because this burden is so great, we have friends who have offered to assist us with extending thanks on our behalf; not because we don't wish it ourselves - simply because there aren't enough hours in the day or emotional capacity at times to personally thank every single person. PLEASE, if you follow our story and have uttered a single prayer or contributed a single dime to help us - WE TRULY TRULY THANK YOU FROM THE BOTTOM OF OUR HEARTS. We will forever be indebted to you for your caring, generosity and kindness that we will forever seek to repay - because that is who we are. I personally have been taught that by not accepting a gift from someone who wants to offer that gift from the kindness of their heart that you in turn are robbing that person of a blessing, of those feelings of doing something nice for someone else. I believe that thoughtfulness and kindness are qualities and I wish to teach my daughters that giving is the right thing to do. At the expense of some people's sensitivity, I will not quit providing this blog. I humbly thank every person who reads this, prays for us, sends us a kind word or gift, or wishes us well and will personally do so even if it takes me years to reach everyone. Because I cannot allow negativity to penetrate the faith and strength that we have built; IT IS NOT FOR US - IT IS ALL FOR MADELEINE. I know that Jeff or I could never forgive ourselves if we did not do everything possible to try to save Madeleine, and right now that means not leaving her side - to go to work, to do fundraisers, to do anything. At this moment, she needs us here. If/when this changes, we will be the first to admit it and to hurry back to our employment/income responsibilities. In the meantime, we truly thank each and every person for everything. God be with you, God bless you, and I thank God for touching you by Madeleine's story.

Chemo: Round Two

The weekend and early part of the week were great. To be home with both of the kids and relax is the recharge we so graciously appreciate. Madeleine was readmitted Wednesday afternoon to begin cycle two  of 5 total. We expect to be inpatient again for the full cycle, planned for 28 days yet projected to be within the 21-28 day recovery as she did last time, also considering there is less tumor to battle now.

Wednesday night's infusions went off without a hitch and she was still a very happy, expressive and hungry baby all day Thursday. The bummer is that hour 0, or when the chemo has to begin each day, is 12:00 midnight :( so needless to say the first 5 days of treatment are the longest because we don't get any sleep. Thursday night was a roller coaster; we began as usual at midnight with the day 1 drugs, however day 0 drugs had already started kicking in, beginning the dry heave coughs. Going back to cycle 1, it seemed to hit her a little faster than last time. Naturally, that is because some nurses have been doing this longer, and some nurses just know what works better and best for some kids: last time, our nurse made a recommendation of prophylactic measures to keep ahead of the nausea/vomiting whereas this cycle, our nurse did not and the doctors had not initially written for all of those measures. 

At 2am Madeleine was up heaving and hungry. I had asked that they look back at the orders from last time and give her something to help her rest, as I recalled we were successful with that last time. Sometime between 2 and 4am the resident figured out what to give her and a fill-in nurse was trying to gingerly talk Madeleine into swallowing 7cc's of medication! This is basically a decent-sized syringe full of awful tasting stuff. Turns out this particular drug is very common and THEY RAN OUT of the IV drug and were having to give her the same anti-nausea medicine by mouth. Now I may not have a medial degree, but it didn't make a whole lot of sense to us to give a 4-month old baby a mouthful of yucky medicine when she's nauseous that she could potentially throw up. Why not explore another option of a similar drug that could be given through the IV? Of course she coughed up a portion of that medicine but that was after the fact we were made aware of the circumstance. And an hour later she was due for the other medicine to compliment the anti-nausea med - another issue with the timing. At 5:30am I was still up talking to our night charge nurse (who we LOVE) and trying to figure out with pharmacy what they weren't going to "run out of" on a holiday weekend....

The thing about chemo is that certain recipes work for a reason, and deviation from what works can be a heart-wrenching experience for the child as well as the parents trying to comfort that sick child. This is the frustration we have as her advocate; of course there will be things out of our control and we have to roll with those punches. Despite last night's challenges, I had a comforting discussion with the attending physician today. I feel comfortable knowing that they are aware of our expectations and how we most definitely feel a part of her care team and are not reluctant to speak up in order to have particular attention paid to one aspect or another. With this new medication she's receiving, she's now finally getting some of the rest she needs and she ate a little earlier today. Hopefully this med will work a little better to alleviate some or all of the wretching and heaving she had last time, and maybe even help her keep her appetite a little more. We're taking it one day at a time.

One Step Forward, Two Steps Back

Friday was Madeleine's 5th MRI. This one was to confirm the success of the tumor resection. Within two hours of completing the MRI, both the neurosurgeon and her oncologist were in our room to share the news. By most standards, the surgery would be considered a complete success with 100% removal: we learned there is a very small 1cm x 1cm piece of the tumor left in the cavity. Needless to say we were very, very pleased that Madeleine came out of the surgery just as she went in and had zero adverse effects from the surgery. The fact that there is still a small piece of tumor remaining does not discourage us and we are moving forward with the next cycle of chemo and counting on it to shrink/dissolve it based on the success of the first cycle. We were discharged late Saturday afternoon and she is now resting comfortably at home for her post-op period before we go back Wednesday to have her sutures removed and begin chemo. 

The second bit of news is that as a result of the rarity of the AT/RT diagnosis, Madeleine's tissues were sent to Children's Hospital in Philadelphia where they are leading the genetics research and testing. After several weeks, we learned the outcomes of her test. Madeleine is positive for a genetic mutation, the INI1 gene, which has been associated with rhabdoid tumors of the brain, kidneys and abdomen. This gene is apparently for tumor suppression in the body; it keeps the body from allowing abnormal cells to develop and grow. Madeleine's gene does not protect her. As a result of the mutation, Madeleine is predisposed to these tumors. Right now while she is undergoing chemotherapy for the tumor cells in her brain, it is not likely that she could have new malignant cells growing. Even after this nightmare is over, she will continue to be under very close observation every 2-3 months and 6 months until she is 5 years old to catch any new rhabdoid cell growth. After 5 years old, she should be fine, until she is an adult and is making family planning decisions.

This news is awful. I can't begin to describe how we truly feel about this. I feel that if we understand it and  come to terms with what we have to deal with, not unlike the prognosis given, we cannot dwell or even really talk about it. By not acknowledging this fact with words, we are protecting her; what does not come out of my mouth does not become reality. 

Today Madeleine is so much more like herself. She's had to be on a steroid since the surgery to control the swelling in her head that ridiculously increases her appetite and the nurses tell us is extremely mood-altering in older children, explaining her incessant irritability - this is her equivalent to throwing fits. She's nearly done with that medication and it will take some time for her blood pressure to come down completely as a result. She also had to be on an antibiotic that gave her diarrhea in every single diaper, poor thing. As of this morning, the wound protectant they gave me to use as diaper rash cream is working and she's not nearly as miserable from her raw bottom. Today she is talking and laughing, following your face better and staying awake for longer periods without being fussy. I hope the next couple of days at home she will eat like a horse and go back with some additional weight before chemo and be the happy baby we want and see. 

Surgery was a Major Milestone

This past Wednesday Madeleine underwent brain surgery to remove the decrepit remains of the shrunken tumor. The preparation by anesthesia and the OR nurses exceeded that of the actual surgery time! Our surgeon Dr. Lazareff was very happy with the surgery and indicated to Jeff that he had time to explore the surrounding tissues and he believes he was able to resect all of the tumor. She has been doing phenomenally well in post-op recovery these last 36 hours. The MRI to confirm the surgery's progress and serve as a new baseline for chemo was unfortunately not completed yesterday and is scheduled for this afternoon. The new MRI will tell us exactly how successful we have been.

So what does this mean? It has taken me some time to wrap my head around the concept that if the tumor was life-threatening, and now it's gone, what's the purpose of having her undergo additional cycles of chemotherapy? It's not unlike breast cancer where the tumor can be removed but the patient still requires therapy to ensure all of the tumor/cancer cells are destroyed. It's exactly the same with Madeleine. Right now while the tumor cells are responding favorably to the chemo, we need to "knock 'em dead" completely... or risk the tumor coming back AND resistant to the chemo protocol. The disease is what is very aggressive, in turn the tumor became aggressive and grew extremely fast. So while the surgery has been a huge success and huge milestone achieved, Madeleine still has a considerable journey ahead of her. However, because there is less disease and less "bulk" to combat and break down, her body should be able to handle the rest of the chemo treatments as well if not better than her first cycle. We are still very hopeful and faithful in her positive outcome of beating this disease! We are still looking at another 4-5 cycles of chemo and bringing her home in June/July free and clear and healthy.

Today Madeleine will have the follow up MRI and it appears the plan is then to discharge tomorrow allowing her to fully recuperate at home. Perhaps by the end of next week (Feb 18) or beginning of the following week, we will be readmitted for the next 28-day chemo cycle. Until then, we all get the break being home all together, life as usual :)

From Daddy

Good morning everybody! Just want to let you know that we slept like a champ last night. Our vitals have been perfect. And we're eating as much as our sister, if not more. And on vomiting at all!

MRI Results & Update

Thank you for your patience. We have been selfish over this weekend by not sharing the results of the MRI from Friday so we could spend as much quality time with the girls as possible.  

We waited nearly all day Friday to receive the word on the MRI. The attending doctor for the week indicated he thought the tumor appeared to be "a little smaller" which didn't resonate with me initially although Daddy was very optimistic and happy to hear that bit of news. Shortly thereafter our doctor came to give us the good news: the tumor which initially looked like a healthy, living, large organ now looks like a shriveled slice of dried apricot! It no longer appears to be connected to any of the surrounding brain tissues and is small enough that the neurosurgeon is confident he can go in and remove what's left of the tumor.

Getting this news, we were absolutely overcome with tears and emotions of joy, relief and happiness. It felt as though this whole last month we've been holding our breath, afraid to breathe and now we could finally exhale. It was so emotional! Even our oncologist is amazed at how quickly the tumor shrunk and was bringing members of our support team to see the MRI pictures. We were then discharged about 5pm on Friday and have spent the last 3 days home and with family.  

Tuesday morning we are taking Madeleine back in to have her labs drawn and we could be sent home the rest of the day or admitted for the surgery that is scheduled for sometime Wednesday. What we initially thought would be a shortened treatment plan as a result of having the surgery earlier turns out is not the case: Madeleine will still have to endure another round of induction chemo and then up to three cycles of the transplant therapy. This was extremely disappointing news. Of course we want her healthy as soon as possible and we understand if this is what she has to go through to ensure the cancer cannot grow back, then so be it. We were just under the impression that the surgery would in effect replace some of those chemo treatments by removing the tumor.   

Trying to sit up by herself

Since being home, Madeleine is overall a happy baby. She really enjoys sitting up, looking at faces and talking to you. After being in a hospital bed for so long I can't blame her. We all seem to be sleeping much better at home in our own beds too. She is having a little bit of trouble essentially "re-learning" how to eat. She gets frustrated very easily with not being able to get comfortable or latch properly and has taken to crying more than what we're accustomed to. It's important that we're monitoring her eating and urine so she is not getting dehydrated so it's been a challenge for Mom, especially when she's just as frustrated with and basically refuses a bottle. One day at a time.

So the plan: Labs Tuesday morning/Admitting sometime Tues or Wednesday/Surgery Wednesday/recovery 1-2 weeks likely inpatient. We hope to provide an update Wednesday after the surgery. 

Please continue to pray for Madeleine! We know she has angels watching over her and we know and trust that God is working a miracle in her by shrinking the tumor so quickly and by her strength and endurance. Her journey is still a marathon and we all need endurance to prevail.

February 2 Madeleine's 4-month birthday

A quick note...

We came back to UCLA around 12:30 a.m. on Wednesday. Madeleine's pediatrician Dr. Shapiro came by the hospital about 9:00 to check on her and talk with us about how things have been going so far. Remember she was our doctor that initially asked so many specific questions about the size of Madeleine's head that tipped us off to Jeff research and discover her condition. She has been great through this whole process being very supportive to us. She was very pleased to witness how well Madeleine controls her neck sitting up and looking around and how she's actually meeting some of her milestones early! =) She's already clasping like prayer hands and really wants to roll over from her back: that will take some time because we never get time on the floor being at the hospital so far but even with her tubes connecting to her central line on her chest, she's trying to roll over those lines. 

The best milestone she just reached this week: she can laugh :D I'll try to catch that on a video in the next couple days. It's absolutely adorable!

We also got to visit Annalise last night for the first time in 12 days :) We all missed her so much and she missed her baby sister and us. She's getting so tall! Her vocabulary has expanded leaps and bounds. She's been talking in full sentences and now with more topics. I'm so proud of her that she's really so intelligent and picks up so much around her from all us adults. We were ready to start her in school to be around more kids and that plan changed when Madeleine entered the hospital since preschool is a germ cesspool. We have to remember regularly that this journey is temporary and eventually our life will get back to normal, the hospital and sister being sick has become a temporary new normal.

Madeleine has a few tests today including her MRI and we might be able to go home today or Friday but it would be for just the weekend if we go. She has done so well this cycle and has recovered faster than we planned for; her cycle was "scheduled" to be over on February 11th. Considering that her oncologist has recommended that we begin cycle 2 next week rather than waiting. We look at it as that's 7 days sooner that she could be completely well again. We'll update again once we know the results of the MRI. Let's hope it's a game changer for the better! Much love to all <3