Radiation Complete

Each morning for the last 6 weeks Madeleine's nurses would almost race to see her first, to have Madeleine exclaim "hiiiiiiiii!" at them and seemingly make their day. They frequently took turns carrying her, playing peek a boo or letting her bang away at the computer keyboard on their lap. Not always playtime but enough down time waiting for our turn for all the nurses to get their "baby fix." Really- so cute.

Last day of radiation

This morning was Madeleine's final radiation treatment, and as usual she stole the hearts of her nurses who are happy she's completed and sad to see her go. She was presented with a Certificate of Excellence, a gold medal and some cute new toys. =)

Tomorrow we have regular check up in the clinic with labs and Madeleine is done for the week on Friday when she finishes up this last chemo dose. She has lost a tiny bit of weight from the loss of appetite and the little bit of nausea and vomiting she's had; she has been a Crabby Patty the last week and sleeps a little more- all to be expected, even sooner than when these symptoms showed up. We do expect all these to improve and quickly. She will have weekly checkups provided she is doing well without fevers or colds until January 10, her next scheduled MRI. She will go a full 30 days without any treatment so on the 10th they'll be checking to see if this treatment is successful. We of course are remaining prayerfully hopeful. It's one of those huge, huge things- extremely faithful people say turn it over to God, do not carry that burden; for the most part I think we do that. It's the extremely difficult part of knowing in your mind what reality is and Madeleine is in fact a recurrent patient, even if her protocol calls for radiation and we had to forgo it initially. Other babies on this protocol are about 6 months and 8 months older than Madeleine, were treated later in their little lives than she and immediately after stem cell rescue, and are to date both evident disease-free. That's the hope we're holding onto. There aren't any guarantees with this monster, other than how truly awful and devastating it can really be.

12/10/12 commercial kid =)

An Aunt of mine explained Madeleine's happy and adventurous personality as she knows and trusts in God that He is keeping her in the palm of His hand so she's not scared. In heaven or on earth, our babies are safe and trust in God. It's all the rest of us who are not as close to Him that fear. It's so hard to take a lesson from them!! But that's our age and time in this world... there is something truly amazing about their innocence. Sometimes it's very difficult to remain positive when you know other children with the same tumor are losing their fight or have lost. Two little girls called to heaven last week. That's just two too many. I don't allow myself to think about what if for Madeleine; she needs our positive vibes more than anything. However especially late at night my heart aches for these little children, their parents. Last night I was leaning on my elbow as I was reading a blog and about funeral arrangements, and finally realized I physically felt like I was being pushed into the chair with tremendous pressure, forceful almost. Whether it was the self-imposed weight of these catastrophes on myself, or truly the devil leaning upon me to infiltrate fear into my heart, it did not work. I felt like a true knight guarding her with my sword from the devil, she will not be taken or harmed on my watch, I'll be damned. Though I did go to bed with a heavy heart for my new friend I've never met in Texas who has valiantly come to peace in her heart over the cancer that invaded her precious 4yr old daughter and claimed her Thursday night. I saved one of her pictures last night so I can pray for her each time I see it.  I've thought about creating a photo "bouquet" of the angels we've known of along the way as part of everything else I'm saving or creating for Madeleine's journey in the effort of teaching her just how precious her life really is when she is old enough to understand. Most parents look forward to milestones so far into the future like going off to college & wedding days; we are keeping the hopes very high just to see her start kindergarten and have First Communion.

Please say a prayer for the mothers of little Kaylynn (California) and Hayden (Texas) as they grieve their princesses.

Radiation half way done

Madeleine has had two full weeks of radiation clinic- no eating 6 hours before the treatment, getting up before everybody and silently leaving the house, westside traffic, find parking, fight for a spot in the elevator, wait for anesthesiologist (sometimes), carry our precious girl into the Linac, then hold/play with her till she feels the sedation medication. (If you've ever had the unfortunate experience of holding a small pet being put down, this is very comparable; no matter the frequency, it still feels & looks the same). I rarely watch her face as she goes under just because I literally feel sick to my stomach. I gently close her eyes with my hand give her a kiss and place her little body up into the head pieces made especially for her, and leave, heading back to the exam room. She's usually out of my sight for about 20 minutes until I hear the heart monitor coming down the hall. Then sit and wait another 20-30 minutes for her to wake up from her induced nap. Madeleine wakes up quickly, even moreso than the average afternoon nap- she usually manages to get her knees under her and her face on the sheet in 7 seconds and the Nurse or I better be quick to stabilize her before she rolls to one side as she comes to. She then will nurse before we leave, sometimes falling back asleep in the comfort of mommy.

On Tuesdays our day is 3x as long; after radiation clinic we go upstairs for hem/onc clinic and labs. And that's a whole other story of hurry up and wait. By the time we get home Annalise is usually out of her bed and in mine, waiting for us. She comes running to say hello, "you're back" and give us hugs and kisses, one of my favorite moments, though typically short lived. As a family we're all getting adjusted to yet another new normal, before it changes again in December.

sisters 11/8

Dr Lazareff came Friday morning before treatment to look over Madeleine. He said he's really not concerned about the few things we have noticed, such as her eyes wide open or tilting her head backwards to see. She also still has the minor paralysis on the right side of her face. It's not terribly noticeable unless you know it already. There's a discrepancy over what's causing it, though we've talked it over and decided it's of little significance and best to let it lie until after the treatment is over. She is showing signs of irritability, moments where she is really ticked and not even us holding her relaxes her. She has just recently started eating less, both solids and nursing, though it's something we've expected, the loss of appetite. She started the anti-nausea med last week and that has totally controlled her vomiting. 

The hardest part of this treatment is probably the lack of patience we all have for the necessary parts of our every day. It would seem as though the day would be easily planned: radiation in the morning, drive home,  clean the floors, get everybody fed, clean up kitchen, naps (if we're lucky), clean the floors, prepare for dinner and maybe some sort of laundry or other cleaning. Instead, radiation is always dependent upon the group of patients rather than the individual; waiting on the docs; patience in the traffic (405 is a nightmare), etc. Each of Madeleine's feedings is a production that she and I both have little patience for, though I think we're both trying. She hates taking her medicine anymore, the chemo must really taste yucky even though it really doesn't smell. She has been experiencing itchiness all over her face and rubs quite a bit even with moisturizer as well as during meals so we basically bathe twice a day = more time. Saturday and Sunday she gets a break from the chemo and seems to be when she is the sleepiest and most fatigued; she must be catching up from the beat down during the week, though she really has been handling it well. I think all the time how much harder this could be if she could sit up and yell at me what's bothering her, how everything makes her feel, etc. 

We've got another 13 treatments. Not sure yet exactly what the plan is after that. Keep praying to God this treatment works.

Radiation #1

What a day.... for many reasons not directly related to Madeleine's treatment! Lately Madeleine has been waking very early each morning, anytime between 3am and 7am (just for perspective, this is not particularly a family of early risers; we typically begin our day around 8:30-9am).

playing at 6am

The morning after Halloween and getting to bed around 11:30, she awoke hungry at 3am.....and didn't go back to sleep without a vibrating bouncy chair and baby Einstein until 7:30. 7:30!! I was afraid to go back to sleep and miss the alarm.

We finally got to the clinic and I carried her into the Linac  and held her in my arms as they prepped her for the sedation. She talked and stared inquisitively at the therapists chatting with them as the anesthesiologist began administering the propofol. The second she feels that medication she practically jumps off the table clinging to me and vocalizing whatever it is she feels. Her head begins to roll a little bit, her eyes get heavy. Her mouth slightly hangs open and she squeals just a little. As her eyes roll backwards with her head movement, there is something very difficult to put into words. In the past we have not accompanied Madeleine into the procedure room to see this happen. Now in radiation, I've seen it twice, and it is hard to witness. 

I had a hell of a time trying to get her oral chemo medicine while she was in procedure. I went back to the clinic, knowing she would be finishing up, to find her already out. One of the nurses was checking her over, and noticed the dressing on Madeleine's chest covering her central line insertion site looked a little like muddy water- a potentially very bad thing. The next 20+ minutes, between the two nurses and I we removed the dirty dressing, cleaned the heck out of it and replaced the clear covering. Unfortunately that was not the end of it; Madeleine was sent to see a doc as well as a chest x-ray to ensure the central line has not moved inside her body. Tomorrow morning we'll change her dressing again while she's still sedated and replace it with a gauze dressing. There are pros and cons to this: the site will air out a little bit and we'll watch the skin very closely to see if the irritation clears up, gets worse or what. If she comes down with a fever or shows puss from the site, it's fairly guaranteed we'll be admitted to the hospital for possible infection management. The bad part of this dressing is that the site is more susceptible to infection and has to be cleaned and changed every other day. Madeleine hates having her dressing changed, as do most children. We finally left the hospital about 3 hours after scheduled, extremely tired. We came home, had some lunch and played with our toys before taking a good nap.

Friday is radiation treatment #2 and we'll stop by quickly to see her doc before the weekend. All next week she begins around 7am, and has her check-up and blood work next Tuesday.

Radiation & Halloween & Emotions, oh My!

I have yet to finish a post- I have three drafted, none completed. Some days it is impossible to be "poetic" or strong, or inspiring. Some days the pressure is just too much and my thoughts are not comprehensive. We have reached that point in time where our real thoughts and feelings do not leave the confidentiality of our home because it's constant venting: anger, frustration, despair, bitterness, fear. The "why us," the "It's not fair," the "enough already!" 

Many things have happened that I should share, I just haven't had the patience or filter to share with all of the emotions involved. I will catch up, I promise. The most important thing is Madeleine's upcoming treatment. For whatever reason, it took nearly two full weeks to get the plan decided and moving.

Beginning Thursday, Madeleine will have radiation therapy every single weekday for a minimum of 25 sessions. She will also be on an oral chemotherapy I will give her each day when she completes therapy. Praying to God we can actually have a Christmas this year....

The facts are that Madeleine is doing really well; she is healthy and strong, happy and incredibly mobile. All great things going into this next phase of treatment. She has healed rather well from the surgery, and all that is left is a half-shaved head and some minor facial paralysis that Dr Lazareff believes will heal itself with time. 

She is still too young for radiation. The target age is 3 years old, and 5 years is better. We knew from the very beginning that radiation could be the worse thing for her; however, it's also the best weapon against the tumor. So what do we do? The fact remains that Madeleine is now 12- almost 13 months old- and in terms of development, she older and more developed than she was at 4 months old. The older she is, the better. The docs never want to do radiation on children this young, because no matter how you look at it, you are still destroying a portion of the brain that otherwise would continue developing into the wonderful, beautiful mind. However, without radiation, the tumor would grow back. Quickly.

Like good students we've researched on our own and put questions and challenges before our doctors to provide us with comprehensive recommendations. We have decided to move forward with photon IMRT radiation and an oral chemo called vorinistat, which they think is synergistic with radiation therapy. We'll begin with a standard dosing and special suspension form and watch her very closely. Her "planning session" was on Monday, and she had a CT scan of her brain so they can set up the consistent radiation therapy model. She will have at least 25 sessions, Monday through Friday, and be sedated for each and every one. She has to remain perfectly still in order for it to work, so they'll sedate her to ensure precision. This is obviously not Madeleine but it does give perspective to how she will look going into the therapy every day (which I do not see; it's traumatic for parents). 

There is good to this phase: we will be on a set, consistent routine for probably the first time ever. I've read that routines are good for "extremely spirited" kids like Annalise. She continues to have challenges understanding all of the extra alone time and care that Madeleine gets, and for us as parents it's extremely difficult to give equally to the girls our time when once we put them to bed, we are alone with our thoughts and fears and frequently have trouble sleeping, as in, at least 3-4 times a week. Eventually it catches up to us and we are completely useless zombies at least one day out of the week. We're trying so hard to rest our minds and bodies so we can be better parents. It is a complete understatement to say this journey is challenging, as every parenthood is challenging. We appreciate the "you guys are so awesome" or "you're amazing parents" but the fact of the matter is no matter how amazing or awesome we appear to be, we still have a child hurting, struggling, frustrated. We had started the ball rolling on her therapy to help her deal with her extreme 3yo emotions that unfortunately took a side burner to Madeleine's surgery and recovery. With Madeleine beginning regular, outpatient therapy it could be the most opportune time to restart therapy for Annalise and introduce her to her social environment she seems to be craving and could be the piece of her confusing puzzle that will help her the most. Halloween is tomorrow, and I have nothing for the children. Call it laziness, call it last minute, call it just not in the mood to try to put on a celebratory face. We really are trying to figure out how to get out of this funk. Annalise wants to be a brown puppy dog, namely Copper from the movie The Fox & The Hound. I'm sure with a little resourcefulness I can throw something together for miss Madeleine, although one of my very good friends suggested she should really be her own superhero :) an idea I absolutely LOVED- of course until the new tumor showed up :( this roller coaster just doesn't give up sometimes.

Homework Time

Late at night. It's always late at night.
Tonight my mom flew back home to Reno, Annalise went to have a sleepover with Grandma. The last two days Madeleine gets up a little later in the morning, around 9, and she stays awake all day without a nap, crashing early and sleeping throughout the entire night. Out of character, yes; but it's as if she is fully "charging her battery" each night to live up every moment during the day. Before the tumor came out, her sleep was interrupted every night. She would cry. She was restless. She hasn't cried at all since the surgery. Not once. Coincidence....?

10/10/12

Tomorrow Jeff is coming with me. Dr Davidson will see Madeleine first to look her over, talk to us about the MRI, give us her initial thoughts on treatment, and hopefully discuss the pathology of the tumor. We want to talk to her first to lay the ground work in our own minds about what radiation means for Madeleine. In the afternoon we will meet with Dr Selch, the neuro-radiology oncologist for our first consultation. I've already told our hem/onc team that I want to know everything: what are all the options and why it is or is not a good option for Madeleine. I probably won't be able to sleep. I've been researching the different types of radiation I know other kids have received. But every story, every kid is different. There isn't anyone who knows Madeleine's story better than me and Jeff; I'm never going to know all the intricacies of those children's treatments and conditions, so there's absolutely no way to compare- just to get educated.

One of the hardest parts of this disease is that there is NO ONE WAY. Every single decision we make is a luck of the draw. There is NOTHING that proves whatever choice we make will be the right one.
Let that sink in for a minute....
Every parent we have come across with an ATRT child thinks they are making the best decision for their child. We are all the same. But our children are not. A little newly diagnosed baby just passed away this week; her parents were trying to avoid steroids and chemo because of side effects. Another child has been fighting unrelenting for almost 18 months. Her tumors- yes, plural- grow ridiculously fast; for some reason, her treatment isn't working. It. Isn't. Working!? I pray for that little girl; she's starting to give up. She's 4 years old. I write about this because these are my thoughts; it upsets me when people close to me don't freakin get it- they act like nothing is happening, like Madeleine's illness is not real. It hurts, so bad. the worst part- they don't get it. Just because my life has stopped and turned upside down, that doesn't mean yours does. I understand that. It still hurts.

Stitches 10/10/12

Madeleine is healing better than expected, slowly and surely. Each day we have seen progress. She really hated the hospital; she knew it wasn't home, she was not in her bed, the nurses had to keep bugging her. Once she came home on Monday, she slept most of the day and all night, catching up. Tuesday she was closer and closer to the baby we had Thursday before the surgery. Each day she is talking a little bit more, she wants to play on the floor, walk around holding your fingers, look at her books. She has now really learned to get around in her walker so she's getting into a little bit of trouble getting into things but it's pleasant and I chuckle a little taking things away from her or watching her reach into her diaper bag and pull out her toys. Her dressing began coming off with all of her moving around and it looks really, really good. These stitches look better than the previous surgeries.
We are only 6 days post-op, so we don't have extremely high expectations of her getting back to the baby she was, although we hope it's sooner than later.