UCLA Welcomes Madeleine for Cycle 4 (Transplant #2)

April 13

Good Morning! For our loyal followers, I apologize for the online hiatus over the last two weeks, though I think you'll forgive us in knowing we got to spend 12 whole days at home as a family! Madeleine was discharged late in the afternoon Monday April 9 and she was admitted Sunday afternoon April 22. Coincidentally, she's beginning Chemo Cycle #4 on the same date as last month, the 23rd. I like this because my calendar-focused brain can very easily see when we could likely go home again. Monday Madeleine received both a blood transfusion and platelets to get her started off "with a full tank" in preparation for the chemo that began around 6pm and will run for 6 hours Monday and Tuesday evenings, a break on Wednesday and Thursday, and she will receive her stem cells late Thursday or likely Friday morning. There has to be sufficient time after the last chemo infusion and the stem cell transfusion to ensure the cells are able to do their job. So far she's exactly herself with no adverse effects; the only lasting effect has been some vomiting since the last cycle. She has been on an anti-nausea medication called Zofran since last month and had to stay on it while at home or she vomited without fail, it was very strange. But if every six hours she needs a little medication to keep her food in, so be it - it was very manageable.

So, the recap: Dr. Moore is the head of our Transplant Team (Madeleine has moved under the BMT group though her primary oncologist is still Dr. Davidson) and he has mentioned to us that autologous transplants are typically the easiest they see, where patients recover quietly and relatively easily considering everything else they've been through. There is still the conditioning chemotherapy where patients can have significant adverse reactions to; however, the stem cell rescue contributes wholly to the recovery. During the induction cycles, it took Madeleine about 9 days to really hit rock bottom with her counts and feel really crummy, and then another 10 days or so of being neutropenic before her counts began to rise, experiencing "easy" side effects like nausea/vomiting, to the really bad when she was septic. We felt as though after Cycle 2 she was really due for a good cycle. Cycle 3 came and went without a hitch! By day 14 she was really ready to go home, though we needed to stay for a few more days observation on her labs and for her follow up kidney function test (the kidney test is done every month to check the function of her kidneys that could be compromised as a result of the chemo). A few days after discharge we came back for an outpatient audiogram, which she also gets every month and requires her to be under sedation because little babies cannot hold still for the duration of the exam. To date, the doctors are amazed that she has yet to show any signs of hearing loss. This is truly AMAZING, considering they told us it was almost a certainty that she would have hearing loss in the speech range and likely need hearing aids throughout her lifetime. We're almost there... almost to the finish line where we can breathe a sign of relief that our baby girl is healed, is cured of this terrible disease and has won her most victorious battle! She is MY HERO.

The time at home was amazing =) the girls are so in love with each other that as a mother I can't express how much joy I feel to watch my daughters talk to one another, interact and play and LOVE each other. Annalise was SO HAPPY to be with all of us together. I burst into tears at random times just overwhelmed with emotions to reflect on how we have all sacrificed and endured this journey together at all expense, and Annalise is no exception to that. How I thank God that my children are young enough that they won't remember this hardest, darkest period of our life, yet will retain the love and adoration for each other that grows exponentially each time they are separated and reunited. Annalise wants so bad to help take care of her baby sister and she has those opportunities when we're home. Madeleine is incredibly captivated by Annalise that she follows her with her attention completely focused on her, she laughs at every little thing she does, and raises her baby voice and screams to express her own joy and happiness. It's nothing short of magical to witness.

Life, as it should be :) 4/11/12

So the days at home were spent relaxing as much as possible: we probably never turned off the TV! But it was great to have those lazy days in pj's together as a family. We had a few days of visitors, a few days at the Dr's office for follow up, lots of home cooking and baking, and plenty of play time on the floor learning to use our muscles. The days seem to fly right by especially with doctor visits sprinkled in, but we were all very happy to be home together, sleeping in our beds, and playing together.

Hope for Madeleine Benefit

Other updates: the Hope for Madeleine Benefit in Grass Valley was a HUGE success!! My mom, sister, grandparents and nephew all attended on our behalf on April 7th, and the amount of love and support within those walls for those 5 hours was tremendous. Over 60 businesses - yes, I mean SIXTY - businesses contributed to the silent auction and raffle. That's incredible!! I am so proud to be from the Gold Country, a place where the small town community still exists and children make get well cards for Madeleine and encouragement cards for Annalise. The event in total raised over $6,200 to help our family care for Madeleine. So humbly and graciously we thank the Grass Valley/Nevada City community and everyone who helped to make the event.

"Madeleine's March" turned into "Madeleine's March & April" at Cold Springs Middle School, and the administration has decided to hold a student assembly on May 8th to announce the fundraiser total and present my mother with the proceeds (they don't do this for every fundraiser the students organize and participate in so it's to be a very special event). I am so proud of my sister Jordyn, who has become very competitive with her classmates to see who can raise the most money, but at the heart of it, their intentions are good and we have received MANY get well cards from the students and even comments on the blog that they are thinking of and praying for our Madeleine.

Lastly, it seems that in the next couple of weeks we should be able to move forward with the labs for the genetic testing, thanks largely to the fundraising events organized on our behalf. Jeff and I will both have our blood drawn and sent to Philadelphia for the genetic testing experts for the INI1 gene deletion to hopefully make a determination that could change our lives. We're hoping that the testing will prove that Madeleine's gene deletion was a sporadic, random event and that neither of us carry any sort of genetic mutation or combination of our genes have caused the predisposition. Essentially we're hoping to hear that we can have more children if we desire that are not at any additional risk, and more importantly, that Annalise is at no risk at all. In due time we will have the information and Dr. Davidson has made it very clear that we have continued with Madeleine's therapy in the effort to ensure the disease CAN NEVER COME BACK; that is the goal, that is what we have been doing every single day since January - fighting the good fight so Madeleine will never have to endure this ever again. We appreciate all the continued prayers, at the very least until we can bring her home for good. But I have a very good feeling that this little girl that we have shared with the world will be in many people's prayers forever, like their own little angel who has made a difference in their life, one way or another.