Day 129 - a few more weeks

5th Cycle: 
Day 11 of chemo/Day +7 BMT

They are two different things though the same; Madeleine's protocol included induction chemo at the beginning so our cycles did not start at Day -1 for instance. Bone marrow transplant cycles do begin that way; conditioning chemo is scheduled as Day -4 and day 0 is the day of the transplant. 

Madeleine is kinda both. For the purpose of making an educated guess when her counts may begin to rise, they use the BMT day 0. The attending physician this morning said that an educated guess would be that given today is Day+7, she could likely be discharged between week 2 & 3, which would be the week of the 18th. And this is assuming Madeleine can continue without infection, fever or other incident. Our beloved Dr Davidson is getting married next weekend and we have missed our daily visits with her as she is ridiculously busy. She did come by this morning though to reassure us that although she may not be showing her face in the unit every day, she is constant contact with the attending physicians and follows along on Madeleine's charting daily. 

Things have been pretty uneventful & that's a good thing. The only thing to really report is that we finally got a hold of the emesis with the meds so she's not throwing up several times a day. We are feeding a little more frequently in smaller amounts to help with that as well. Madeleine seems to be feeling really good despite her counts being near bottom because she would rather stay up and play all day; her naps have been reduced to no longer than an hour and a half for both morning and afternoon naps. The last few days she's gone to bed earlier as a result. She's then sleeping lightly when they come in at 4am to do vitals and the kid is awake for at least an hour. Mom looks like this: x_x

I can't bring myself to fall asleep when she's awake, just in case she starts coughing up mucous I worry about her choking on it or aspirating. I'm having a hard time feeling rested because I can't catch up on sleep. And this cycle I think I mentioned I'm pretty much chained to the hospital since M has refused a bottle completely, so no chance of sleeping at home at night for me either. She's also been a little stubborn in trying cereal and food, so any bright ideas, please feel free to let me know. 
We're starting to get ready for life at home. Today Madeleine began her physical therapy assessments in addition to her regular therapy. We're taking advantage of the PT orders already written for her to give us a good idea after treatment so there's no significant lapse in time before she'll begin therapy once she's discharged pending all the insurance paperwork, etc. Looking forward to a quiet weekend...

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.

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"

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.

Stem Cell Rescue #1

Madeleine's doing well, she took her morning nap after the stem cell "infusion;" that's more like what it really is than a transplant.  Her transplant went as scheduled, nothing major, it looks like a blood transfusion. She's had a little bit of nausea and vomiting the last couple days but that's normal for chemo and she's sleeping it off mostly. Madeleine's vomiting is really not bad, maybe only twice especially compared to the 1st cycle, that was bad. That was so sick. She'll be on 24-hr monitoring though for blood pressure and heart rate mostly as a precaution. They're mostly looking for a reaction to the preservative which is actually making me extremely nauseous, I had to go outside a couple of times because it's overwhelming me. Its a very specific odor that emits from her breath and urine. It smells like freezer burned or fermented creamed corn that stinks. Jeff hardly notices it. I asked the nurses to keep an eye on her so I could get fresh air. We're exhausted, we were up at 7:30a and she didn't go back to sleep last night until almost 3am. She's having a little bit of trouble sleeping any real length of time today so hopefully she'll sleep all night tonight. I'm sure she'll get up one more time to nurse tonight and then turn in. Fingers crossed :)

So Far So Good

This morning I was reminded how lucky we are.

This morning

This morning we talked, we laughed, we nursed, and Madeleine fell asleep in my arms and I got to hold her and kiss her in my arms and thank God for her. Everything is just as it should be if we were not in the hospital, with nurses and doctors checking in on us; and if Annalise was with us to also smile at Madeleine and for me to hug both my girls. We are so blessed and at times I forget that because we're not home and I miss my other baby terribly. I know she's in good hands, it's just I want her in mine.

For the last 2 & 1/2 days we had limited physical contact with Madeleine as a result of this new chemo she's getting. Something from it excretes from her pores that is extremely irritating to the skin and toxic to us. For those 2 & 1/2 days we bathed her every morning and every night and kept the temp up in the room so her little naked body wouldn't be cold. Even the friction of the diaper fastened to her could cause "burns" - it feels like itchy rug burn - to her skin so she stayed naked without anything on her but a little blankey lightly draped over her torso and no skin-to-skin contact from us. For a breastfeeding baby, that is punishment. Like a good girl she really tried to take milk from the bottle and she got enough to take the edge off, though not nearly as much as she would normally eat. It was even hard for Daddy who wanted so badly to kiss her and pick her up. Late Sunday night we bathed and dressed her to get her up out of bed to play, talk and shower her with cuddles and kissies. We enjoyed her smiling face and cooing for a little while and it wasn't long before she wanted to nurse and go back to sleep.

Today [Monday] Madeleine will get her stem cell transplant!! The big show won't be happening until the end of the day, after 5pm, as close to 48 hours post-chemo as possible. So sometime this evening I can give another update how that goes, though everyone is telling us they expect it to be pretty uneventful but with lots of people for all the necessary precautions. By the end of the week we can expect her to begin feeling ill and counts to drop as a result of the chemo, though Dr tells us she should recover a little better with the stem cell rescue. Again, a lot of wait and see...    

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!!!!!