Sleepy Sunday

Madeleine is making little moaning sounds in her sleep right now. She fell asleep eating and I haven't managed to convince her yet that she's finished. She woke up around 11am to get her medicine, then took a nap. She's only woken up 3 times all day to eat. Don't worry, I already called the nurse to come out for an exam and discuss again how she's doing. Her heart rate and breathing are still both very steady, a very good sign. Her skin stays cool though she stays wrapped in a blanket and she's slightly pale, but overall doing pretty well. Her belly has some definite roundness just under her ribcage not unlike when she had the ileus which has us slightly concerned. The nurse is thinking that it could be one of the tumors pressing in her spine causing it. Dr Davidson will come here on Wednesday to see her so I'm sure she will also let us know what she thinks at that time. Madeleine has also starting using her right hand again mostly because she figured out that if her fingers on her left hand are unable to grasp, she can use the outside of both hands to pick things up. She is so smart.
Madeleine had several visitors on Saturday that also could have taken a lot out of her causing her to be sleepy. Annalise too spent most of the day in bed and not eating too much. That kid is always going 100 miles a minute so we know she's really not her best when she voluntarily spends the day in her bed. After a little Tylenol and cold medicine this evening she's back up and playing Minnie Mouse on the iPad so she must be feeling better. We took it all as a cue to stay in sweats today, hang around the house, doing laundry, loving each other. I love my family.

She Laughed

Daddy's birthday wasn't exactly a celebration but we were together with only family, no visitors or medical people. The best part really aside from sleeping in way too late was Madeleine was happy and comfortable. She made noises at Mickey Mouse, one of her faves, she smiled! And she giggled in her Mimi's arms while looking at pictures of Daddy, Mama and sister. Completely warms my heart to see her true spirit shine through her disabilities. Our girl is amazing!!!

Christmas Part III still to Come

The last few days have been good and challenging. Madeleine is doing ok; as we mentioned she has a different challenge every day but that seems like business as usual. Her main complications are with her digestion. Now that she has a regular routine of medications and a laxative and a stool softener are included, she's managing to do her business more regularly but not without discomfort or trapped gas pains also regularly. Thank goodness for heating pads. A new part of our daily tasks is to keep her tummy warm and massage the gas out, including Christmas morning and Big Sister was very good with her patience until we could open gifts. We felt so blessed to be able to give them so much this year, so much in fact that they weren't able to open them all! Annalise got stuck on a favorite toy and Madeleine fell asleep, so the gift unwrapping continued on the 26th :) super blessed. Oh, and they still aren't done- hoping to wrap it up by Friday, Daddy's birthday.
We also met with the hospice nurse finally. Jeff and I feel like we've managed Madeleine's care well on our own and because of our resolve to keep life normal, we're keeping it together surprisingly well, which we conveyed to our new support team. We have told them that our primary objectives for hospice really include on-call assistance for the just-in-case situations and ensuring Madeleine is comfortable by most means necessary; psychological assistance for Annalise, and the professional support when the inevitable occurs. We are extremely realistic about what's going on and because of that, we also quite certain we will fall apart when it happens.
It's the absolute strangest sense of existence, the unwelcome anticipation or unknown of "when," where life is almost suspended in the air like an acrobat. Yesterday was a good day mostly, and that is mostly defined by Madeleine being comfortable and happy. Unfortunately one of the first things to go has been her personality so we absolutely revel in her talking noises when she's feeling better. This morning she had a great deal of difficulty picking up her pacifier that she allowed to fall from her mouth and it truly upset her. We're pretty confident she's smart enough to know what she wants to do and is truly frustrated that her body cannot do what she wants. Since last week her right side had already begun to go loose, though she had good control of her left side. This morning's episode was her left hand now starting to lose control of. At least the hospice nurse is able to check her over and assure us that as of her exam, her breathing and heart rate are steady; while other things may be affected right now, we don't expect her to stop breathing tonight so to speak. In all honesty, we're praying for a peaceful, serene experience for her rather than something abrupt, traumatic or painful. This is the extent of our "preparation." We're just not ready to go there until we have to. While we will always believe in miracles, we acknowledge what we see before our very eyes, hold her close every night to keep her warm and feel her breath, to make her feel our love for her, to reassure her that we trust her, and look forward to the day we see her happy, healthy and pain free. This is truly a debilitating yet beautiful existence these days.

It's a Wonderful Life

We feel like George Bailey.

We've been home two full days now, and it's been nice. It's good to be home. Saturday night after discharge we had a wonderful surprise: dear, sweet friends of ours drove clear across town with armfuls of gifts for our girls. Just showed up on the doorstep, gave hugs, kisses and well wishes. We are truly blessed beyond our comprehension. Sunday Daddy went out in the crowds and finished Christmas shopping for our little lambs, while Annalise helped me take care of sister. We all climbed onto my bed and we talked to her, sang to her, made her smile, and tried not to squish her under great big hugs. 

Life is normal to Annalise, and we've been saying more prayers throughout the days. I want her to have a concept of heaven before the inevitable takes place. Our greatest concern next to Madeleine is how Annalise will feel, think, act and question. For both the girls we feel very strongly about life being as normal as possible and giving them the best Christmas ever as if we did not have the knowledge that we do have. We have had so many people reach out to us with prayer, well wishes, tears, offers to help- overwhelmed with support really, and we appreciate it so much. And we have also tried our best to remind everyone that Madeleine is still with us and continues to bless us, and we do not cry (try not to anyway) or mourn her now- there is a time and place for that and it isn't now. She is still our Madeleine Sunshine and continues to bring us so much joy, despite any physical effects we see, medications we give, extra things we must do for her. She's still our baby girl.

This morning we discovered she had stopped urinating, something we are aware could happen soon. She also hadn't had a BM since Thursday morning, both from the tumor in her lower back and the constant morphine. We got out the heating pad and began massaging her abdomen, something we had been doing sporadically anyway that was now quite necessary if we wanted to avoid the emergency room on Christmas Eve. Within minutes she had both movements, and we decided to get her into a nice warm bath to comfort her. I took her in the tub and held her between my arms and legs where I could still massage her belly in the water. After about 10 minutes, her system finally kicked in and like a tube of toothpaste, I was able to massage most or all of her blockage from her belly. Thank God our remedies worked! After a nap she had another BM and another nap, most of the afternoon in fact. The doc says she's ok just likely so tired from all the discomfort. When she finally woke up late and Daddy changed her diaper: SHE STOOD!!!!!!! After several days of not crawling or standing from the inability to do so, she stood. Jeff called to me from the bedroom to hurry, and I ran to see it with my own eyes, and I burst into the happiest tears in a long time. I hugged her and stroked her hair, and balled my salty tears all over her cheek telling her how proud I am of her. She is so amazing!!!

My very best friend also came today bringing items to help us and bless us, most notably her very good camera to help us capture what are soon to be very cherished memories. Our Christmas is shaping up to be exactly what we hoped for: precious, happy time alone together.

May God bless you and your family this Christmas.

A Speeding Train cannot be stopped

We sat chatting, I was nursing Madeleine at her bedside when Dr Davidson returned; she had already gone home for the week.
The worst is reality.
The spine MRI shows that while we were radiating the original tumor bed, the disease metastasized to her neck and spine, the spread splattering like paint. Much of the disease is below her waist and compromising her lower body. In effect it's wrapped around get spine and can slow or stop her swallowing or breathing, her bowel movements, leg mobility, etc.
Just two weeks ago she was pulling herself up at the coffee table or on my pant leg. She followed me around the house for the last month demanding to be carried. Today, tomorrow, next week I will not mind so much.
No more surgeries, it's too hard on her and wouldn't cure her. No more chemotherapy, it's too toxic. No more hospital, she deserves to be home with her sister in the comforts of home. We're taking her home for her one and only Christmas and making it the best in all of history. We will cherish her and "squish" a lifetime of our love for her in a few short weeks, if we're lucky.

Back in the Hospital

Last week when Madeleine finished treatment I mentioned to her doc that she had just started to get really crabby- something we expected. What we didn't anticipate was a chain reaction of all side effects in just a few days making for a very unhappy baby and a serious test of patience.
The biggest of these has been Madeleine's inability to rest at night. It started just waking maybe twice through the night and has progressively gotten worse every sequential night to now waking every 30-60 minutes over an 8-10 hour period. This has been happening for the last 7 nights in a row, which are typically manageable for babies. However, Madeleine awakes in a fit, whimpering a little, then crying and kicking or rolling, and ear piercing screaming. It's gut wrenching.
We took her to the ER Tuesday afternoon; after 7+ hours they ruled out hydrocephalus complications but still offered no solutions to the crying baby we felt was clearly in pain. Two more nights and in clinic today they moved us straight over into the hospital for tests ASAP.
I'm beyond exhausted at this point:
Worst case scenario- the AT/RT disease spread or a new tumor in a new place causing these neurological symptoms.
Slightly worse scenario: a rhabdoid tumor found in her kidney causing the pain & elevated blood pressure.
Best case scenario: residual pain and discomfort, possible swelling in the brain from the radiation. This can be treated at home with medication.

The Thursday before Christmas 2011-December 22- is when this nightmare began. Oh, the irony... In some ways Jeff & I both had an intuition about this. But we're also extremely hopeful that this too shall pass and our little girls get to have Christmas together in our home in our pj's. Praying the docs figure it out quickly and give baby girl the pain relief she needs so we can all sleep at home. She's hooked up to an EEG tonight to rule out seizures. Praying for the best for Madeleine. Xoxo

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.

New Power Port central line

What a full Thursday!!! But luckily everything came together beautifully for Madeleine's surgery, it was just the 18 hours leading up to it that were pretty tough on all of us.

Nighttime in the hospital just isn't what it used to be. Madeleine made it very clear she knew it wasn't home and her bed. She fought hard to stay awake most of the night after little power naps between people waking her. 4:30 am I was finally able to get her into the crib and lay down myself. By 8:45 we were heading to radiation. Thankfully we kicked up enough dust the day before that we got the call while she was under RT that the surgeons were ready for her (this was about 9:30). Awesome!! Even better was that our clinic nurse and the anesthesiologist elected to help us by transporting her while still under sedation through the tunnel back to the hospital and up to the surgery floor - so, so cool of them because they really didn't have to do that and it's very likely we could have lost that add-on spot if they hadn't. I turned her over about 10:00 (see how fast it happened!?) and grabbed a coffee to wait. Around 12:30-1ish we got the call she was moved to recovery and we spent over an hour with her in the PACU until the docs could confirm the line placement was not having any effects on her heart. They later came and explained that the end of the line is slightly deeper in the left atrium and that it will allow her to grow with the line, though at the same time they have to make sure the lung is safe and the line is not causing irregular heartbeats or bothering her in the least. Everything appears to be a-ok. She was released to the floor and then discharged by about 5pm. We hurried to pick up sister and go home to relax. Mama, Daddy & Madeleine are all exhausted, and poor Sister is a ball of energy!! It's a bit difficult for her to understand why she has to be gentle playing with Madeleine because she is likely sore across her entire chest area. They removed the double lumen from her right side and installed the port back on her left where the very first CVC was. So 7 surgeries in 11 months - our baby girl is amazing!

We still had to wake up for radiation Friday morning and they used the new port without any issue. I also got to see it when they removed the needle and it looks like nothing :)

This afternoon she has been playing more and chatting away so it's likely she's not experiencing any pain. It's raining today and most of the weekend so we'll spend most of it resting, recuperating, baking and watching movies in our jammies - these are the weekends memories are made of, spending quality time together as a family.

Surgery Thursday?

Waiting in admissions today

It's still a little bit up in the air; Madeleine is an add-on to the surgery schedule, and we did everything this afternoon to plead and demand that she be put on tomorrow without question. It turns out there was a pretty big miscommunication. There is absolutely no reason for Madeleine to be inpatient. This kind of surgery is almost always an outpatient procedure, unless of course you're already here for other things. They decided to admit her in order to get her in the operating room faster than scheduling her for outpatient, except that she's not scheduled! We went round and round with this, down to us basically saying we're leaving today if she's not guaranteed a spot Thursday since Friday's schedule is already overbooked. We may be difficult, but ultimately we will never apologize for being Madeleine's advocate. It is completely unreasonable for a 13-month old infant/toddler to go all day without eating to accommodate a coordination schedule. Period.
We have urged surgery to please take into consideration her age and the fact that she couldn't eat a double cheeseburger before fasting as a means of making her the priority add-on case to get her in as early as possible. Please pray they are able to do this for her. When a baby's entire life is to eat, sleep and play, and all of these things are disrupted, it's disappointing, frustrating, all around upsetting. We are definitely keeping our fingers, legs and toes crossed we've pleaded our case enough that they want to make Madeleine a happy baby tomorrow.

Curve Ball- Surgery this Week

A few weeks ago, Madeleine had some "muddy water" under her clear dressing cover, indicating something wasn't quite right and we did a course of antibiotics and changed to a gauze dressing to prevent infection. Over the last few weeks, we've continued to change her dressing every other day. The problem is, the little girl is on the move! - you can't hardly contain her long on your lap or in any one space, she has to find her way to her bedroom from the living room, from her room to the kitchen - she's always exploring (side note: Jeff and I don't exactly believe in "babyproofing;" of course we make the house safe but we don't put up baby gates and confine the kids to any one area...though I think we might be changing that soon...) As a result of her mobility and activity, as well as being picked up and/or trying to wiggle out anyone's arms, the cuff that was previously under the skin holding the catheter of her central line the last 8 months slipped out last week, and as of this weekend, is all the way hanging now and the catheter itself basically slides in and out of her bore hole in her chest, not making for the most sterile of situations. In clinic yesterday the docs and nurses took a look and debated all afternoon: she needs the line replaced. It's just far too vulnerable now.

double lumen catheter

Mama will take Madeleine into radiation tomorrow morning and wait for the call from the office. Most likely the insurance will authorize the surgery and she will be admitted sometime on Wednesday and have the surgery on Thursday. If all goes well she could be discharged Thursday or Friday, all the while still attending her radiation therapy sessions and receiving the chemo. They are also strongly considering switching to a port instead of the double lumen that she has now, very similar to a Broviac, which is most common. This is probably the best photo I have of her line after it was placed.

March 2012

This surgery will be Madeleine's 3rd central line; the first one was placed last January on her left side and was removed after the sepsis; the current and 2nd central line replaced the "dirty" one she had and they moved it to her right side and into the jugular vein; I'm not sure exactly where this next one will go. The benefits of the port seem to be much better than the double lumen in that we don't have to clean it every single day, it will be under the skin and she can take a bath (yay!) and not worry about it getting wet, and be a more "normal" kid. Bummer it has to happen now but ultimately probably the best thing she could have if she has to have it at all. So what's a few more days in the hospital after everything else? Piece of cake. Which we'll actually be missing since it's her Nina's birthday on Wednesday :( but I guess we can just make up for it this weekend. More info to come.

Madeleine doing work

Sent from my Verizon Wireless BlackBerry

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.

All's Well

After the antibiotics on Friday, we were allowed to go home because Madeleine's ANC is perfect- meaning her immune system looks good and is fighting the infection so she isn't sick. This course of antibiotics will give her the extra punch she needs to fight it off and keep it from getting worse. She is very happy and active like usual. It was an extremely stressful day on Friday though, thinking we might have to admit her to the hospital and working with the insurance company and the home health. For now, all is well and we're taking it one day at a time. Today the nurse came, cleaned her site and changed the dressing again (this is typically done once per week; she's had 4 dressing changes this week) and gave her the antibiotic infusion. We had a friend over this morning to play.

She will have another dose of antibiotics tomorrow, and if the dressing is messy, we keep changing it. We're back to the hospital on Monday for Radiation treatment #3 and Tuesday she'll also go to clinic for labs.

Thank you to everyone who prayed for little Ian Adams. His family posted the following update.

getting better~! by friendsoftheadams Ginger reports: "Ian's viral panel came back positive for the flu virus. They have discontinued antibiotics and will observe for 24 hours to make sure the fever doesn't come back. The plan is to discontinue fluids tomorrow. Ian & Papa Steve He is still off the oxygen and Papa Steve (who was with him today so Joey could go to work) reports that he is eating well, napping well and happy!" Thank you everyone for your prayers and encouragement!!

Quick Update

This morning's radiation #2 went fine, exactly as planned. However, her central line site looks infected - major bummer. We've been stuck for blood and site cultures, dressing and cap changes, and a 24-hr antibiotic infusion. Hopefully the insurance comes through for us and we can get home infusions over the weekend. If they can't, or if Madeleine develops a fever at any time, we have to be admitted. Praying this antibiotic works and prevents her from getting ill!!!!!

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.

Prayer Request for another family

please pray for my friends the Adams family

friendsoftheadams posted: "Ginger wrote last night: Ian spiked another fever this afternoon and cough got a bit worse. His lungs also started sounding more congested, so they switched him to a different antibiotic and then added a second antibiotic on top of that and ordered ano" Respond to this post by replying above this line New post on supporttheadams Ian's getting worse by friendsoftheadams Ginger wrote last night: Ian spiked another fever this afternoon and cough got a bit worse. His lungs also started sounding more congested, so they switched him to a different antibiotic and then added a second antibiotic on top of that and ordered another chest x-ray which was done this afternoon. They also sent a viral panel which tests for more types of viruses than the limited panel which was already done. Even though I really don't ever want to be in the hospital I now feel like Ian is getting sicker and it is safer for us to be here with them closely monitoring him. They are doing vitals every two hours right now. Just now they checked his oxygen saturations and they were in the low 90s and upper 80s, which is not good. I am feeling such dread, please continue to pray for Ian. (And me because i am worried) friendsoftheadams | October 31, 2012 at 9:34 am | Categories: CHOC, Ginger Writes, Prayer Request | URL: http://wp.me/p26vr9-mJ Comment    See all comments Unsubscribe or change your email settings at Manage Subscriptions. Trouble clicking? Copy and paste this URL into your browser: http://supporttheadams.com/2012/10/31/ians-getting-worse/ Thanks for flying with WordPress.com

Pumpkin Time

Pumpkin Patch 2011

Look at this photo; we didn't have a CLUE...how our lives would change.

This family loves October. Pumpkin cream cheese, pumpkin lattes, pumpkin pies, pumpkins! We even made pumpkin pancakes for brunch and pumpkin muffins (thank you Trader Joe's). Looking at our photos from last year at the pumpkin patch makes me sad; some days I wish so hard we could go back and live our lives like it never happened.

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.

Mobbed by the JoySquad

Amidst everything that was going on in September, I never really had a chance to share an amazing story.

In September, being Childhood Cancer Awareness Month, the Jessie Rees Foundation posted a daily challenge on their Facebook page to inspire, educate and support child cancer warriors. My mom Kathy (to the girls she is "Mimi") went to their website and requested a JoyJar & a t-shirt for Madeleine. She had noticed that there was also a way to "nominate a courageous family"- a child battling cancer and their family for the difficult journey cancer brings to families. Up to 500 children would have their family name placed on a golf ball and at the Foundation Annual Golf Tournament, those 500 golf balls were dropped from a helicopter above the green; whichever ball ended up in the hole was the NEGU Ball Drop Winner. (you can read about the golf tournament fundraiser here.)
What do you know, Madeleine won!
So this afternoon, we had the wonderful pleasure of hugging and meeting face to face Jana & Cheryl from the Jessie Rees Foundation and spending almost two hours sharing our girls and Madeleine's story with them. They mobbed our girls with more toys than ever! It was like Christmas in October!! :) We were smiling ear to ear to see both Madeleine and Annalise so excited and overwhelmed at all the goodies. We feel like they deserve it, and so much more than we could only hope to give them. As the evening has progressed on, both the girls are having so much fun playing with their new toys; Daddy also got a new toy- a new TV! Which of course he set up this evening, and the girls also got a TV in their room for their Disney collection. Blessings all around. Jana & Cheryl brought goodies for Mama too- a mani pedi gift certificate, a paid appointment for a housekeeper! and a great tall NEGU acrylic cup for my iced coffee I will proudly take to Madeleine's radiation treatments to help spread the word about this wonderful foundation.
Every good and perfect gift is from above, coming down from the Father of heavenly lights, who does not change like shifting shadows. -James 1:17

Erik Rees, the foundation's founder in his daughter's name, has inspired Jeff and I since the beginning of this journey. Jessie Joy Rees was a beautiful and inspiring young lady of 12 years who also fought two brain tumors. For 10 months she fought for her life, all the while focusing on how she could help other kids overcome the fear and loneliness of the hospital and cancer. The days leading up to Madeleine's diagnosis, before we knew the pathology of her tumor, we learned about Jessie. I couldn't believe how incredible this little girl was, so beyond her years. Sadly, Jessie earned her angel wings January 5th; it scared me to death that Madeleine might have the same tumor as Jessie. The very next day I distinctly remember asking Dr Davidson before she had a chance to tell us the pathology if it was the same as Jessie's. Ever since, I had felt a special connection to Jessie, and her parents. It has been unbelievable to Jeff and I the motivation and grace they have showed and how the foundation has grown exponentially partially out of their grief. What an amazing angel Jessie has become; I thank God for Madeleine's angel, Jessie.
Please consider this foundation in making your annual charitable donations to inspire child cancer warriors and spreading awareness. www.negu.org

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.

Madeleine's choice of sleeping spot

Sent from my Verizon Wireless BlackBerry

Long

In PACU after surgery

It...........has...........been......the........LONGest......... weekend.......ev.......ER.............. Time has literally crawled by since Friday morning. Hurry up........... and wait.
 Friday was the longest day ever.
Both Jeff and I were a silent mess, though we both reiterated that as long as Madeleine is safe they can take all the time that they need. Take all day, just come back with good news.
We spoke to Dr Lazareff around 10:45 though surgery didn't actually begin until around noon; we turned her over about 8 am, and we were finally able to join her after 4 pm as she awoke from the anesthesia. Her surgeon indicated the tumor was removed in pieces, and that the whole area is very delicate. We were cautiously optimistic that everything was removed. Her last brain surgery was in February and we couldn't help but constantly compare her behaviors and reactions between them. The good news is with her age (and/or experience) she has been recovering beautifully. Each day she has noticeably progressed with her movements and activities. Friday evening she was hooked up to several IV's and monitors that kept her pretty immobile as well as cranky; she did not like it at all and seemed to be crying to me as if to say, "why aren't you picking me up and holding me?"

Saturday morning

She went back to sleep after her last feeding at 6 am and I awoke to her around 9 am Saturday playing quietly in the hospital crib by lifting her toe with the pulse ox light so she could see it and gradually lifting her other ankle wrapped in gauze hiding a peripheral IV on the side of the crib just a little higher each time. I gave her a few of her favorite toys and she remained quiet and entertained herself with them as I watched. She was still NPO (hospital speak for nothing to eat/drink) in anticipation of the MRI, which still wasn't actually scheduled; there was a chance it wouldn't happen, pending having a pediatric anesthesiologist. Eventually around 11:30 they took her downstairs to imaging and I was able to stay with her in the MRI room as they prepared her for sedation. This MRI would show us if the surgery was successful in removing the whole tumor. I left her in their care and waited in her room for her return. By afternoon most of her extra monitoring was discontinued; she got a bath and all the lines were removed, allowing for us to pick her up. Did I mention how the day just dragged on? dragggggggggggggggggggged on super slow it seemed, just waiting for someone to come tell us news, good or bad. We prayed for good.

We didn't hear anything the rest of the day, and Jeff let me go home and get some rest since we didn't really sleep more than 3 hours Thursday night before the surgery, and I had only about 3 hours solid sleep Friday. He stayed up all night watching over her and apparently she was hungry enough with the steroids that she very willingly took a bottle from him twice throughout the night. whew!! I was able to sleep a solid 8 hours before I jumped up realizing it was morning and hurried back to the hospital. In Sunday morning rounds, the neuro-surgery team came in and finally gave Jeff the MRI results: they got it all. The doc showed him the MRI from last week and the one from Saturday, and Jeff said he's seen with his own eyes, what once was there is now gone. In an instant, the weight of an elephant is lifted from our shoulders. Now we focus on getting her well and recovered. The rest of Sunday we noticed more improvements in Madeleine; she began verbalizing some of her favorite words and responses, trying to pull herself up by herself, and managing to balance her torso so she could sit up unassisted. Although she was doing these things easily before, it was a huge deal she was doing these just days post-OP. She continued to nurse well and humored solid foods a little. Again, the day just dragged as we tried to figure out if they would discharge us as she cat-napped throughout the day. I helped give her another bath and we took turns playing with her. Sunday Annalise stayed home with my mom, and Sunday night Jeff went home earlier to have dinner with her and play before bedtime. We all talked on the phone several times: Annalise to Mommy & daddy during the day, I to my mom; in the evening Annalise, Mimi and Daddy all talked to Madeleine and she insisted on standing on her bed while resting her head on my shoulder and holding the phone so she could listen. Precious moments indeed.
It's now Monday morning and the docs are saying we can go home. They'll discharge M after they remove the bandage with the remaining dose(s) of her steroids given orally, since there is really no reason to keep her . Her vitals have been amazing, she's breathing without any issues, her heart and blood pressure look picture perfect, all good things. Likely this week we'll meet with the pediatric neuro-radiology to discuss radiation options available to us based on Madeleine's tumor area, her age, etc. I guess this week I'll be an A+ student learning brain anatomy. I want to understand as much as I can about what areas of the brain control what so I can ask informed questions about what throughout Madeleine's life could potentially suffer as a result of the radiation to the tumor area. What we do know is that without radiation, the tumor will surely grow back. With radiation and another chemo treatment, we're hoping to nip it this time. The probability of it coming back a third time is still probable, unfortunately. We'll keep praying that it doesn't. I'll say though that me & God are having some pretty difficult heart-to-heart talks though lately. I'm upset and my faith has suffered. I had faith she would be ok, and the tumor came back. She is ok; I'll give Him that. But our little girl shouldn't keep having to have her skull sawed open with a jackhammer and undergo these extensive and tedious surgeries for the greater good of men, or whoever is worked into this plan. I'm very upset about that. I've asked Him to minister to me to help get me back to a place where I can have unyielding faith that He IS protecting my baby, not just allowing her to get well to suffer again. I can't take that. I quite literally say the Serenity Prayer over and over each day, because I question what I can accept as part of this journey. Thank you so much for the continued prayers for our family, we definitely still need them.

Resting Now

THANK YOU LORD, for protecting our baby!! She's resting comfortably since coming out of surgery around 4pm, much later than expected but we're "cautiously optimistic" that all of the tumor has come out. She will have an MRI tomorrow to confirm. For now, tonight she is under the watchful eyes of the PICU team at Mattel Children's Hospital and Mama. Hopefully we can all get some much needed rest after this long and dreadful day we have survived. Thank you everyone for your prayers!! ♥

Longer Than Expected

Time has never gone by slower.
We turned Madeleine over to the anesthesiologists around 8:15 this morning after we accompanied them through the halls to the OR area. Although her surgery was scheduled from 7:30-11:30, they can essentially take as long as they need to complete the procedure. Around 10:45 her surgeon, Dr Lazareff came to the waiting room to let us know that they had just finished prepping her for the surgery itself and he would be joining her then. We are praying diligently, nonstop for her safety and protection.

Surgery Friday

Madeleine will be admitted around 5:30am on Friday for her 3rd craniotomy. The tumor is much smaller and appears from the MRI to not be connected to any of the other soft tissues - all good things, considering it's a BRAIN TUMOR...

The procedure is to be approximately 4 hours, and I'm happy to post updates as they become available throughout the morning. Please remember Madeleine in your prayers as she goes back on the OR table. And most importantly, please pray for Dr Lazareff and all of the medical team who will be attending to her in surgery. With God on her side, she will be safe.

As a follow up, Madeleine did not have the bone scan this week. Dr Davidson reviewed the MRI closely with the neuro-radiologist and they agree that what the images show is consistent as predicted with her chemo treatment. She also mentioned that this kind of tumor typically does not adhere to actual bone, so that was very relieving news.
We also learned that the cytology from the spinal tap was NEGATIVE FOR MALIGNANCY, a huge relief for us. We know now that the tumor is again localized to just the pineal area of her brain and the cancer has not spread. Again, all things considered, this is the best position we could be in to fight for her this go-around. As if her first fight was not hard enough, each subsequent relapse lowers her chances even more as the tumor cells grow more resistant to treatment. I share this information to help people understand what we are dealing with and by no means to lower anyone's spirits, but rather to remind anyone who thinks of her or prays for her to plead for those thoughts and prayers daily, hourly if you can. Thank you, God Bless

FIRST BIRTHDAY

MADELEINE IS 12 MONTHS

12 months of courage

12 months of hope and faith

12 months of wishing we could take your place

12 months of achievement
12 months we will NEVER take for granted

12 months of bravery

12 months of love, devotion & prayer

12 months of thankfulness & grace

LORD GOD, PLEASE GIVE US 12 MORE MONTHS WITH OUR BABY GIRL

"Before I formed you in the womb I knew you, before you were born I set you apart..."-Jeremiah 1:5

New tumor: updates

We are overwhelmed with the amount of emails, messages and phone calls we have received expressing your shared grief over the new tumor news. I cannot thank you enough for that support for my family. Please forgive us if we have not returned your call or message individually, as there are too many to count at this time and we must stay focused on our kids, decision-making, coming to terms with the news, etc. We will certainly try, though I really hope everyone can use the blog as the source of info for a while at least. We appreciate your understanding, and most of all, your prayers.

Thursday was one of the worst days of our lives. The best way that I can describe how I felt is that it was as if my heart had literally been ripped from my chest and I was bleeding to death. I felt lightheaded, cold. As though I was outside of my body it hurts so bad.

Today is a new day, and I for one awoke with a new understanding: we are beaten, but alive. Yes, it hurts, but we can heal. God has granted me the serenity to accept what we cannot change, and the courage to change the things we can. We can keep fighting. We can love and support Madeleine and make and do the best we can for her.

-  This morning's ultrasound was quick, and subsequently we learned NORMAL.

-  This morning's spinal tap was quick even though we waited for hours. There are two results from the LP, the cell count and the cytology. The cell count is performed in the lab and indicates whether or not they can physically count the cells in the fluid. If there are no abnormal cells counted, it would be very unusual for the cytology to come back with any bad indications, though still possible. We received a phone call late in the afternoon that her cell count was ZERO- it's very likely the disease has not metastasized, ie. spread through the fluid. We'll know for sure next week.

-  We received a copy of the radiologist's report from the MRI; there is an indication of something on the bone itself in her spine. I should preface by saying that it is consistent with chemo patients to have lost significant calcium of the bones, including the spine and it is consistent with what her images indicate. However, it may also be a lesion or new growth. As a result, Madeleine will have a bone scan next week as well to determine what is showing on the MRI.

-  Madeleine's surgery, her third craniotomy and now 6th surgery, is scheduled for Friday, October 5th. Just three days after her 1st birthday. Dr. Lazareff, her amazing surgeon, called us while reviewing the scans. He said in comparison to everything she has already been through, this resection should be the easiest for her, the easiest for him. It does not appear that the tumor is attached to any surrounding tissues and he should be able to go in a scoop it out relatively easily. Please remember him and his steady hands in your prayers for Madeleine.

Given everything that has transpired, and the unknowns to come, we made an important decision this afternoon. In a private, informal ceremony after mass, Jonathan and Janine baptized Madeleine with the Church's special exception for us at Saint Augustine's. We all know she is a child of God, and this was ever so important for us. I'm hopeful that sometime soon we'll be able to have a lovely celebration of her baptism surrounded by everyone who loves her, just as she deserves. Just as I wish I wish I wish!! to give her a lovely birthday celebration. Nothing would make her Daddy happier than to give her everything. A unicorn if she wants it. She has earned it, this little love of ours...

More to come next week. Thank you for reading, thank you for praying, thank you for thinking of us.

RELAPSE

I am so tired.
I realize I have let our support network down.
At one point in time in June, I used the analogy of Madeleine's treatment as a tightrope walk, that I was so desperately looking forward to her reaching the other side, because it meant something larger than she or I or any of us. And that was true. But the tightrope walk is just one act. There are many acts to a circus, a whole program before everyone gets to go home.
I failed to fully communicate that Madeleine's treatment was not the end of the road, the end of her journey with cancer that would never affect her and our lives again. I realize that people- caring people - are trying to be supportive when they tell us that now we can go on with our lives, that we can begin to "'rebuild," (Jeff hates that one) or that it's finally over. Her treatment was just one act.

Madeleine has a tumor. Again.

I had faith that she would be okay, that she was going to continue to ward off this bleep monster. I understand the concept of unanswered prayers all too well. But this was not supposed to be one of them!!!!
I am angry!
There is no explanation as to why the relapse has occurred so quickly. We saw the scans from today and the one in June side by side - it happened with the snap of fingers. And I'm bleeping pissed!!!
So is Annalise. She doesn't know what's going on. She hears the words "surgery," "back to the hospital," "what now".... she lost it. She had a complete meltdown of anger- rage even. I can't say that I blame her. We are just dying inside to know how to comfort her, how to reassure her when none of this past year makes any sense!!!! We are overcome with guilt.
Do you know what it's like to live your life as if today could be the last day with your child?
Would you ever forgive yourself if you were not there on that day, God forbid?
Yes, she made it. Madeleine survived and we celebrated. But it was also a high price for our eldest daughter, who came to resent us for essentially abandoning her. It may be explainable to us, to you, but not to a 2 year old. And we simply cannot do that to her again.
We are lost. It's so early on in the relapse process to even begin to PROCESS the feelings, the emotions, the guilt, the anger, the sadness, the devastation, the fear, the worry, the what-are-we-going-to-do.
We are so desperately in need of prayer.

Madeleine will have a spinal tap and ultrasound Friday morning to hopefully rule out any other forms of disease in her belly, kidneys and spinal fluid. Those results must be negative if we are to have hope in continuing her fight. We appreciate your prayers so so very much. God Bless

MRI Thursday morning

Most of you will read this and Madeleine will already be under anesthesia.

9/27/12 at 6 am we check in for her 2nd post-treatment MRI of her brain and spine. 

We all feel really good about how she has been doing lately. I know I haven't done the best and didn't exactly meet my goals this month of childhood cancer awareness...there's a lot that has been happening. 

Nonetheless, Madeleine is doing great. 

She's weighing in at 8.5kg, she's grown a little taller, and is drinking better from a nosy cup.

She is SO HAPPY.

This face so truly illustrates how she somehow truly knows... 

as my Aunt said, "God gave her healing, she is going to make the most out of every minute of every day. She is a happy little girl."