12 hours of Christmas

We Hope that everyone had a blessed Christmas

This year I was SOOO Ready for Christmas, this time of year has become one of my favorites. Thanksgiving, Christmas, and then Jillian's birthday all right in a row! To be honest I used to hate this time of year, the cold, snow, stress of shopping. But having kids makes you relive the magic that we used to have when we were little.

I had my tree up before Thanksgiving this year (Ryan laughed at me!) and 5 days later my sweet baby was diagnosed with Cancer. This changed everything, I did all my Christmas shopping via the internet from Helen Devos Childrens Hospital room # 913. And was only able to buy the girls things because of all the sweet people that helped us out this year. It was truly difficult to get in the Christmas Spirit, for a few different reasons. 1 being that we have spend 1/2 of December at the hospital, all of our time has been focused on the girls (Having 2 under 2 is NOT easy let alone having a child that is sick and needs care all the time). 2. We were not able to focus on any of the holiday traditions, making cookies, listening to Christmas music, seeing Santa, drinking hot coco and snuggling, our time at home was spent filling out forms, taking care of Mallory's needs and reading up about Cancer.

Mallory does not sleep very long, she still only eats 2 ounces, she only sleeps for 2 hours at a time still. It's not getting any better, nor is it getting any easier. I am exhausted from the time I get up to the time I go to bed.

She finished her first round of chemo on Friday, they did a blood transfusion and we were home at 6 pm. I came home to a messy house, dishes in the sink, and toys scattered everywhere and somehow in someway this seems so petty to me. I just don't have time to be a perfectionist, I don't have time to worry about something maybe I'll get around to in a few weeks.

I just had no time to get in the "spirit" this year, that changed this morning at 9 am when Jillian finally woke up. She opened her first gift and would NOT put it down, she played and played and played. Finally we decided that we were just going to let her play with it and we'd open gifts later on. So off to the shower I went, got Jillian to open a few more presents, took a break played and played and played. Jillian and I headed over to my moms for a little bit to say hi and grab the gifts they had for the girls and came home. Ryan and I made dinner (which was SOOOOOO YUMMY, we have been blessed by the take a meal website since we just did not plan on having to stay home and usually we go to our parents houses for Christmas Eve and Christmas day but some WONDERFUL people made a nice Christmas dinner possible for us this year and we cannot THANK you enough!)

We spent 12 hours opening gifts, we took our time, laughed, and just had a riot. It was nice to spend the entire day focused on our family. We are strong and although we missed out on a lot, this Christmas will be etched in the back of our minds forever. It's been a tough year, but this was a great way to end it. We are welcoming 2012 with open arms, we are praying everyday that we continue to be strong, that next year will be better.

Merry Christmas Everyone

-Ashley

Merry Christmas

Merry Christmas Everyone
Hope your Holiday is filled with Love, Joy, and Happiness.
May God Bless You All.

Love - Our Cute little Family

Guess who is 3 months old today?

MALLORY!
I'm unsure of how that much time passed by already. I think it had something to do with me having surgery (I had my gallbladder removed 2 weeks after she was born, 1st ride in an ambulance and a wonderful 4 day hospital stay), then Mallory spending almost 1/2 this month at Helen Devos.

It's hard to believe she is 3 months old still. It may also have something to do with the fact that still eats and sleeps like a newborn that's got me thinking she still is one. I will tell you one thing she is a VERY strong girl, she holds her head up like a champ (and thats pretty impressive when you have a head in the 97th percentile! Not ashamed to admit my girls have some big noggins), she NEVER stops moving and she knows what she wants.

I had preterm contractions with her for almost 10 weeks, they never really dilated my cervix though but I was still placed on bed rest to prevent that. So the month of August wasn't much fun! She was due on September 27th, 2011 (Also her Uncle Robb's birthday) and I had my last doctors apt was on September 22nd. I went into labor that night (My girls are very thoughtful when it comes to NOT being overdue). I never had regular contractions when I went into labor, 10 minutes, then 4, then 7, and so on and so forth, I paced my house for 7 HOURS before deciding to head up to the hospital. One thing my girls aren't so great at is making a fast appearance, 17 hours of labor with Miss Mallory and she was finally born on September 23rd @ 4:10pm. (and YES I totally had an epidural, when I was told I was being admitted I told them to get the anesthesiologist ASAP!). She was a PERFECT 7lbs 10 ounces, 20 inches long. Round chubby cheeks that were and still are ooooo sooooo kisssable :-) I promise not to post my labor story again till she's 1 hehehehe!

We are going HOME today! YIPPIE!!!! They are doing a blood transfusion this morning, her hemoglobin is at 8.5 and they usually do transfusions at 8 but her next clinic apt isn't till next Thursday so they just want to perk her up before then so she eats better. Babies who are anemic tend to be lazy eaters (which could be another reason why she doesn't eat very well anyways). So transfusion, pick up prescriptions and get out of here!

I was also informed that we do NOT have to do shots on her at home (these shots would have been to raise her white blood count). I was so nervous about this, I would totally do them if I had to but I am thankful that we don't. If she was 2 months or younger we would have had to but we escaped that by the hair on our chinny chin chin. HAPPY 3 MONTHS SWEET GIRL! You don't have to have daily shots!!!

One big bummer about Chemo is house arrest. We will not be enjoying any Christmas parties this year, no shopping trips, and pretty much staying inside for majority of the winter. Thanks to the many illnesses that strike during this time of year. We are being extra cautious of her right now, her blood counts have not dropped yet but will be on a steady decline the next 2 weeks and we will not be taking any chances of her getting sick. So I am really bummed to miss out on our families gift exchange and not seeing all of our adorable nieces and nephews opening all the AWESOME things we got for them (yep I rock at gifts!) but I know they are thinking of us and Miss Mallory and will totally understand why we can't be there this year.

So Ryan is dropping off all of there presents to them, picking up a Pizza on his way home, and I will be lighting a bunch of candles like we do every year at his parents on Christmas Eve so we can still keep up the tradition even though we can't be there.

Christmas day will be totally full of snuggles, Christmas music, and playing. We're gonna make the best of it even though we can't be a part of my family's party. So Christmas this year is going to be different but it definitely will be memorable.

Hope everyone has a WONDERFUL Christmas.
-Ashley

HDVCH

Helen DeVos Children's Hospital (HDVCH) is really quite amazing.

It isn't the fact that the hospital is one of the leading pediatric centers in the nation that makes this place amazing, but it certainly helps.

It's oval-shaped, all-glass-exterior, 14 story building in the heart of downtown Grand Rapids Michigan is a breathtaking piece of architectural genius, but that isn't what makes this place amazing either.

It isn't the fact that the hospital's hematology, oncology and bone marrow transplant program received the American Society of Clinical Oncology Award for the program's work to improve cancer care through clinical research (one of eight hospitals in the U.S. to receive this recognition), but that is also very impressive too.

Above all else, it is the people here that make this hospital what it is. We have met dozens of consummate professionals, all of whom walk around with a sense of mission- a sense of a higher purpose. There is a buzz in the air, and people are excited to watch cutting edge pediatric medicine in action. The hospital is yet to turn a year old, and it is impossible not to feel like a pioneer at this place because everyone around you is so eager to perform the mission.

Take, for example, one of our oncology nurses. She has been an amazing blend of professionalism and empathy through many of our nights here at the hospital. Tonight she shared a powerful story with us: her own cancer survival story. What an amazing gift to this hospital, to have an oncology nurse who is ironically a cancer survivor herself. She shared her story, and could relate to what our Mallory must be going through. She is quite possibly the one person that can most effectively empathize with what Ashley and I are feeling, and the ride that Mallory is taking. This means the world to us, knowing that our care providers can directly relate to our situation from every angle.

There are amazing people on every level. The cleaning staff, the doctors, the security guards, the nurses, the people in the gift shop and cafeterias- all amazing. I would like to shake the HR director's hand, they have managed to put aces in all the right places.

Amazing goes all the way to the top. On Wednesday night, we narrowly missed meeting the hospital's namesake, Helen DeVos herself (we were getting admitted to the hospital at that time, and the scheduling just wasn't there).

I applaud philanthropic efforts of all sizes, but Helen DeVos and her family given gigantic support to this region and this hospital. Helen DeVos didn't just donate a pile of money just to get her name in 20 foot tall illuminated letters overlooking Grand Rapids. She could have accomplished that using a much cheaper route.

She did it because she is amazing. She cares about these kids, and about the mission. She cares so much that she threw a private Christmas party for the kids in the hospital. She handed out *very* nice gift bags to each kid, laughed and cried with the families, read some stories and made sure everyone was having the best Christmas possible.

West Michigan is blessed to have such a fine establishment. I hope none of you ever need to go to Helen DeVos Children's Hospital, but if you do, you will agree with me:

This place is amazing.
-Ryan

Metal Baby

For some strange reason chemo makes miss Malibu smell like metal. She's been pretty fussy since they started the etopocide so they gave her benadryl and it calmed her down for the most part.

They will draw her blood tomorrow morning and we will kknow then if she needs a transfusion or not.

She will be on a few meds when we get home. Including a shot we will have to give her everyday (yuck) to raise her white blood counts.

But we should be home tomorrow is what were really hoping for!!

That sweet sweet babe of mine

Mallory is totally snuggled up to me while I write this (Yep, I'd be jealous too!)

Last night went really well! Mallory had 1 really big episode that got to me where she was screaming her head off and could not be consoled. Luckily Ry had not left yet so he was there to comfort me as I tried to comfort Mally. It's going to be really hard on me to watch her get so sick, I am an emotional person in general (one of the cons to being a woman!) but We will get through it. After that though, 1 dose of Zofran (anti-nausea medication) and she was out like a light. She got up twice to eat and that was that.

Until the nurse came in around 6 to do her morning vitals and asked me if I wanted her to change her diaper, I said after she eats is fine. So I pick her up start feeding her and she is SOAKED, soaked through her diaper, onto her clothes, and then onto her rocker. Apparently my idea of "not changing diapers in the middle of the night" doesn't apply when your child is hooked up to fluids for 3 days straight. (Obviously I change her if its a #2 diaper)

Each week will be a little bit different with Chemo, this week goes :

Day 1 :
Carboplatin - 1 hour
Etoposide: 1 hour

Day 2:
Etoposide : 1 hour

Day 3:
Etoposide: 1 hour

She is being monitored 24/7 on her pulse and heart rate, Blood Pressure every 15 minutes while the chemo is going and every 4 hours after that, they take her temperature every 4 hours, and draw labs every morning to check her blood counts. They run saline ALL day long to keep her hydrated. They give the Zofran every 6 hours to combat any type of nausea she might have.



So far she has reacted pretty well but this is not something that will completely affect her right away, next week around New Years weekend is when she will be at her lowest blood count wise and when she will feel the worst is what they've told us to expect.

After yesterday everything started running more smoothly and we just need to get through these next 2 days and just look forward to Christmas with our sweet sweet babes! :-)

-Ashley

Long Day

They forgot to mention that you might have to wait a REALLY long time to be admitted as in like almost 7 hours we sat in Limbo waiting for a room. If they would have mentioned this maybe at least once before we arrived today I wouldn't have gotten so aggravated, but sitting in a tiny room in a very uncomfortable chair was NOT much fun.

They had administered her 1st drug (Carboplatin) and are just putting in the 2nd drug (Etopocide). They treat them for nausea (Zofran) every 6 hours and stay on top of it, if they are feeling nauseous in between they can treat her with another anti-nausea med (Benadryl). So thankfully they keep her as comfy as possible. It is obviously too early to tell how this will effect her but since we were admitted to the room things started running smoother and we've seen quiet a few familiar faces to the last time we were here.

Mallory's hemoglobin is on the low end of the scale so they are guessing she will need a blood transfusion at some point to raise her numbers before we get home. Right now I am not getting my hopes up for being home on Friday, but as long as we can spend Christmas Morning as a family the rest can just be up in the air. Not planning on making any of the Christmas Parties this year, but if we do then great, if not ohhh well. We're not really in the Christmas Spirit this year anyways, it's hard to get into it when you've spent 1/2 of December admitted to the hospital.

I did however figure out why Mallory will NOT eat at home and thats because at the hospital they use the ready to feed bottles with the throw away nipples and she LOVES them. So they are giving us TONS to take home with us. She has been fighting me to eat since we got home from the last hospital stay.

We will see how tonight goes, at least if it doesn't go well my lovely sister is bringing me coffee in the morning!!

-Ashley

Chemo Day #1

We haven't left yet for the hospital (we have to be there at 11). But Mallory and I devised a super secret plan and we thought we would share it with everything (so shhhh don't tell Cancer we're letting you in on it!)

My little punky got her first hair cut, bittersweet but I'm ready to get this whole cancer crap behind us. So today our little girl will be starting her first round of Chemo with a little less hair but a whole lot of spunk!

 

So this is my little peanut, she's got a BIG heart I can already tell. I would do anything for her, I wish I could trade places with her today but she's a fighter and she's going to do GREAT! So I am totally savoring every moment of her 1st year even though there are parts of it I wish I could erase but this is what is going to make her later in life. This fight is going to MAKE her a stronger person, we all could learn a lesson or two from Children that are Sick. That NOTHING stops then, they are resilient, When the world is falling apart around us they keep on moving along heads held high and smiles on there faces.

This is Mallory's scar from surgery, it stinks that she's so little and has to deal with this.
But It's Mallory's Story, It's who she is, It's what she WILL overcome!

I am OBSESSED with taking pictures with my girls, I am SOOOO in LOVE with them! So please all you Mommy's take time out of your day and snap a silly picture with your honey's they will appreciate it later in life!

-Ashley

Chemo starts tomorrow.

 I've spent my day, packing, kissing boo boo's, rocking Mally, changing diapers (2 in diapers = A LOT OF DIAPERS, it also equals lots of messes because sometimes I forget to change 1 of them! Bad Mom, I know.), and basically running around like a chicken with its head cut off. But I did manage to sneak in some photo's with my sweet sweet babes!

Any picture I get with my girls together looks like this, Jillian LOVES her little sister but will NOT hold her, so I totally take what I can get. And I LOVE IT! My girls are pretty cute, Boogey (Jill) and Punky (Mallory) are their NEW nicknames! Yes I am awesome like that, if you're around me enough eventually I will come up with a GREAT nickname for you too!

Tomorrow starts Chemo, 3 day hospital stay. Hopefully we will be home on Christmas Eve. I have google'd and yahoo'd what to expect with a baby on chemo but there is absolutely no information about it. And they give you a general idea nausea (feeling sick), vomiting (being sick), diarrhea, hair loss, increased risk of infection, bruising and bleeding, mouth sores, and tiredness. But what does this mean for a baby? How does this affect a baby? I am not sure what to expect, but 1 thing we know for sure our girl with the cutest little tuft of hair is getting a hair cut so we can save her baby curl before its gone. I pray that God hold her in his hands through this, keep her and our family strong.

One thing Ryan and I have discussed is that we will be putting ourselves in type of therapy. This blog has amazingly helped us so much but there are going to be many years once this is said and done that we will still need help coping. We are open to discussing our situation with everyone, but we think this will give us a HUGE step in the right direction. It will be nice to just have a random stranger to dump all of our feelings and emotions on. 

I have a history of Postpartum depression, something I am very open to discussing, it really bothered me with Jillian that I felt so disconnected from my little girl but admitting it, dealing with it and treating it has put me in an amazingly good place. And a month after I had Mallory I was back on medication and I can honestly say that I am thankful that I decided to do that because I am holding it together a lot better than I would be had I not done that. I still have rough days, don't get me wrong, there is NO miracle to treating depression but it makes the days a lot brighter even when the clouds are so heavy.

Someday we will be the rocks for another family and it gives me hope.

This Friday My little Miss Malibu will be 3 MONTHS OLD! Crazy, time just flew by (thats most likely due to spending so much time in the hospital and at doctors apts)

(She's a total and complete goob!)

And Next Friday my Little Miss Jilly Bean will be 2 YEARS OLD!!! Seriously how did my girls get so big so fast?

(Any good Mom would wipe the cheesy pringles stain off there kids face before taking a picture. But this Mom just doesn't have time! Plus its kind of cute in my opinion)

Hope Everyone has some great days leading up to Christmas! I know we're gonna make the best of it with the cards we've been dealt. :-)

-Ashley

1st Graders Send Lots of Cards for Miss Malibu

I hope you get better from Emma

I hop you get beter, I hop you get a lot uv presens for crismus love conor

I hope you fill better soon terry uewnum
I write a card for you

I hope you get to filling beter. By Madesto

Happy Hooladay I hop you get to feeling betre. Azlyn

Mallory I am sorry that you had to get surjry. I am sorry you can't play. And I hope you have a grate Chritmas. From Emma

Just a few of my FAVORITES! They Did such a GREAT Job!




I decided to hang up all the cards we have recieved, the stack was HUGE but now my wall is full of hope and support and I look at them everyday for guidance. A HUGE thanks to everyone for all the amazing cards! We will be keeping them on the wall until Mallory is in remission so we have your words to guide us through this rough time in our lives. 

-Ashley

Kitchen Set and Our Big Helper!

Mallory totally helped us put together the girl's new kitchen set (shhhh, it's there big present for Chrismtas). It's a good thing Mallory doesn't remember much, I've already told her over and over again to NOT tell Sissy what we got, so far she's cooperated pretty well.

-Ashley

1st ER Trip

Went to flush Mallory's broviac this morning and we could NOT get it to go, so off to the ER we went. 2 hours spent at the ER for a 2 minute fix that we could have done at home if they would have just explained to us before they sent us home or in clinic. But we got it fixed thankfully!

The nice thing is because she is an oncology patient we do not wait in the regular waiting room, they get us right to an exam room.

3 more days till we are admitted again for chemo, between now and then we have to make an apt to get Mallory's 1st hair cut (yes we are cutting off the tuft of hair so we can keep it before she looses it all).

Unloaded

Unloaded.

That's how we feel today, after having our big meeting with Mallory's doctors.

Unloaded as in, the weight has been lifted. We can finally stop holding our breath; we can see light at the end of the tunnel.

All of our collective prayers have been answered: Mallory's official diagnosis is Stage 2B Neuroblastoma, Intermediate Risk. This is way, way, way better than the guesstimates that we received from the oncologists at the beginning of all of this. We were told she would likely be a Stage 4 patient.

The difference is in the details. Mallory developed two tumors simultaneously, while in utero. Had she developed one primary tumor and if it would have spread to the other adrenal gland, we would have a Stage 4 case. It would be Stage 4 because the cancer would have developed, and then spread to another region of the body. This is bad because the cancer would have moved via blood or lymph nodes or marrow to develop in the other region. This would complicate the treatment protocol, prolong her treatments, and raise unanswerable questions about her long term prognosis.

But instead of all the difficult roads that could have been on the table, we now have a very clear path to recovery!

The doctors no longer want to remove her right-side adrenal gland. Instead, they think they can kill the cancer tumor on the adrenal gland, and leave the functional gland in place. This is huge, because missing both adrenal glands means a lifetime of hormone replacement drugs, constant monitoring, constant maintenance, psychological issues, and other ugly complications.

Mallory is scheduled to undergo four rounds of chemotherapy, lasting about two months in total. They are expecting that those 4 rounds will "neuter" the cancer. Another thing we learned today- it is possible to neuter this type of cancer cell, and render it as a harmless benign cell. They call the remainder cells that have been neutered "ganglioneuroma" cells. The ganglioneuroma tumor will remain in Mallory's body, but it will not have the capacity to spread or cause any other harm. It will just be a benign mass that someday will freak out the the ultrasound technician when Mallory is someday pregnant with our grandbabies! (Someday....like in 30 years or something!)

Oh, we can see the light at the end of the tunnel, and it is a warm and glorious light. It is God's light. God showed us that he will see us through this difficult time, and we will endure.

Chemo starts next Wednesday. They are going to keep her at the hospital for a few days, but she should be home by Christmas.

We're not exactly thrilled that we have to isolate our daughter during the holidays, but make no mistake about this:

This is by far one of the best Christmas presents we have ever received!

Merry Christmas to all, and God Bless!

-Ryan & Ashley

It's FRIDAY!

This week took FOREVER, it dragged and dragged and dragged. I honestly did all my laundry, and for those of you who know me, also know my laundry room looks like a tornado went through it most of the time. Knee deep in clean clothes that I just don't have the motivation to fold. (Quite Silly when laundry is NOT in anyway difficult).

Jillian and I have been working on a gingerbread house, SUPER fun but really difficult when you have an almost 2 year old sitting on your lap trying to take apart everything that you've put together.

(Jillapino)

Getting in the Christmas Spirit has been really hard this year, this whole thing with Mally has brought a new light to Christmas though. I am inspired by everyone that has paid off people's layaway. It's just amazing to see random strangers helping out strangers. My family and I decided that instead of my parents buying us presents that we would help out a family that did not have anything, and I hope those kids have the BEST Christmas EVER! This is a tradition that our Family intends on doing from now. It's just an incredible feeling to know that 7 kids are going to have a good Christmas because of our family.

(Mallisaurus)
Today is the big meeting, when they give us all the finalized reports, explain things more, and tell us treatment. I am nervous, anxious, and excited to get the ball rolling so that Miss Mallory can get done with this and move on so we don't have to worry about anything but her being a kid. This is a HUGE thing to me, I want my kids to remain kids for as long as possible, there are so many unfair things in life (for example CANCER) and we don't want them to have any burdens.. So for now Ryan and I will carry the weight for as long as possible and allow them to enjoy things that are appropriate for there age for as long as we can.

I hope everyone has a blessed day and we will have lots of news to share this afternoon with everyone.

-Ashley

And the final test is in!

Bone Marrow came back CLEAN!

Mallory is going to kick this cancers BUTT!!!!

2 weeks ago changed my life

If you would have said to me 2 weeks ago that they were going to find a tumor on my beautiful 2 month old I would have laughed. 2 weeks later here I am doing a happy dance that she only has 1 cancerous tumor left. This has been a roller coaster of emotions.

Ryan and I were discussing over the phone how much joy we got with this news. No child should ever get cancer, no child should ever have to go through treatments. No child should ever be sick. It is crazy how this has opened our eyes, how we were naive to think that this couldn't happen to us. But unfortunately this was decided for us.

In a way cancer has been a blessing, it has opened our eyes to life. It has made us cry, it has made us laugh, but when it comes down to it it has shown us that we need more active with our lives. We still have a long road ahead of us, but this has made us appreciate life much more. We have seen so many people come out of the woodwork that are routing for our little one, that are praying for her, that have helped us out in so many ways.

If we could give you all a big hug we would!

It is what it is, we are going to fight this. Our little girl is a FIGHTER!

When they walked into that room with a childhood cancer book, I wanted to run away, I wanted to run away and never come back. I actually said to Ryan that I didn't want to be a Mom anymore. But when it comes down to it, I am a mother, I am strong, and I have to be strong for these girls. I will hold there hands through life and hopefully guide them to be good people. I am blessed with these 2 little ones, they have taught me things about myself that I never imagined possible, they are my rocks.

-Ashley

MIBG

I am crying my eyes out. Some more great news.

MIBG showed the Cancer did NOT spread to any other organs!

PRAISE THE LORD! 

(we have not gotten the bone marrow back yet though, that is the last piece of the puzzle!)

It only showed the tumor on the right side, we will still have some rounds of chemo and another surgery but a HUGE WEIGHT has been lifted!

THANK YOU EVERYONE FOR YOUR PRAYERS!!!!
I honestly don't know what to say to you all. THANK YOU THANK YOU THANK YOU!

-Ashley

Holding Pattern

All the tests are done; we now wait for results. Tick-tock-tick-tock.... the waiting is the hardest part.

We might hear something as early as Monday or Tuesday. If not, we have a case review with the doctors on Friday. That is when they will layout all the test results, and discuss with us her treatment protocol.

In the meantime, Mallory is doing great! She's all smiles and giggles. Her positive attitude is inspiring.

Thank you all for the support and prayer!

-Ryan & Ash

Christmas Shopping here we come (yes Ryan is SOOOOO excited to go!)

So excited to get out of the house just Ryan and I this morning. (Now if only he would stop trying to snooze me, and actually get up so we can go!)

I am impressed by Mallory's eating habits. I used to get soooo frustrated at her for not eating much, she seriously only ate 1.5 ounces most meals (at 8 weeks old) this is one of the major red flags that I had. I thought she had reflux or colic. She got up every 1-2 hours to eat, during the day it was more like 45 minutes. I now know it was because she had a baseball size tumor pressing up against her stomach. She went from 1.5 ounces to 3 ounces almost right away after the surgery, now she's up to 4.5 ounces!

She was always a healthy weight but thats because she was eating round the clock, all the time. She had just started to lose a little weight 2 weeks prior to us finding out she had cancer. She is almost back up to 12 pounds again and we are adding rice cereal to her bottles to get her a little bit more plump before chemo. They will be increasing the concentration (Mally is on liquid formula) if she is not eating enough.

(This is Jillian at the same age)

(our little beans look SOOO much alike!!!)

Miss Jillypie has a runny nose now too. Dear life, CAN WE CATCH A BREAK PLEASE?

I am still waiting for Ryan to get in the shower, that whole "girls take longer than boys" to get ready, is NOT true in this house! I am always running downstairs and telling him to hurry up, get in the shower, stop playing on the computer, I really should record a typical morning in our house. I'm sure most people would find it highly amusing.

MIBG and Bone Marrow

(This picture is from the first night we brought Mallory home, it totally makes me smile. Jillian loves her little sister but she didn't know what to think at first!)

Mallory did AWESOME today, for not eating all night she was a champ. As soon as the sedation wore off she was ready for some food!!

They were able to do a successful bone marrow aspiration. So they should have the results for that hopefully by Tuesday or Wednesday. The MIBG results we should know by Monday at 10am. So this weekend is all waiting and huge knots in our stomachs.

We were able to see Jillian today for a few, she is such an amazing little girl. We miss her so much, we can't wait for next week when we have a small break until Friday.

Friday is when we get the game plan on how to treat Mallory's Neuroblastoma. This will for sure entail chemo and another surgery. But we have no idea when it will start, what meds she'll be on or what to expect.

I really just want "normal" life back. So tomorrow Ryan and I are picking up Christmas Gifts for our girls, some good friends of ours gave us money just for Christmas and we are forever grateful. There was no way we were going to be able to do it without them. We <3 You guys!

Ryan and I did EMERGENCY Bath tonight, Mallory threw up ALL of her bottle, it was soooooo gross. We haven't given her a full bath since her surgery so it was super nerve wracking but we did a GREAT job!

For life not really going the way we planned it, we are trucking along and taking it day by day.

-Ashley

Big Day

MIBG and Bone Marrow are today. Mallory will have to be sedated for both tests and we will be there most likely all day. Please pray that they are able to get some bone marrow to test, on babies this test can be tricky because of how soft their bone marrow is.

For not eating for 8 hours Mallory is still smiling at me this morning  (not near as much as normal but I don't blame her) and went back to sleep. Hopefully she sleeps away the morning .

I totally had her giggling like CRAZY last night, I was singing my horrible song (be warned I sing when I haven't been getting enough sleep and they are usually TERRIBLE songs and I am NOT a good singer) called "Radioactive Baby" to her. She liked it, so I guess making a fool out of myself is totally worth some deep belly baby laughs.

All in all Ryan and I are taking it one day at a time, one thing we can say is that this sucks, we still haven't been able to fully process everything. It is a journey, and because of it we will be stronger people and so will our children. I will go to the end of the earth for my kids, and not that I wouldn't have before but it has been an eye opening experience. So hug your babies, give them too many kisses, be a role model, and count your blessings EVERY DAY!

Addresses

I am asking that everyone leaves me there address for Thank You cards. I understand that everyone says that they do not want one. But that is NOT an option.

I will have time during clinic visits, chemo treatments, and waiting room times and this will give me something to do.

Now if you do NOT send me your address be warned that you are causing me more grief because first I will a) look you up in the phone book and b) find out where you work and follow you home. So Please just do me the favor and give it to me.

I love you all and appreciate all of your love and support and this is the ONLY thing I can do and I need to. So If you have even just said a prayer for us please give me your address.

Either Facebook message me or email me
ashleycrandle@yahoo.com

-Ashley

Our daughter is radioactive

Mallory was injected with radioactive isotopes this morning, which was interesting to say the least (yes that is the sign that was on the door). They keep the injection in a leaded glass syringe, which had a tungsten sheath over it. All of this was inside a lead box. It took all of 2 minutes. (We now get to wear gloves when changing her diapers till Monday).

Her new nickname is "radio"

We got to meet the clinic nurse, super sweet. Thankfully everyone we have dealt with through this process has been amazing. They state it well "We are a family that you never want to belong in".

Originally they had stated that they would not tell us anything until next Friday. We were informed this morning that that is NOT true and If I don't get a call by Monday at 10 am, to call myself for the results of the MIBG scan. We should get Bone Marrow results by Tuesday or Wednesday. Praying for good results from both. We do both tests tomorrow, she will be sedated so most likely we will be at the hospital all day long. (Good thing they discharged us, huh?)

Everything is going smoothly at home, now If I could just get stuff unpacked.

My mom is currently at the doctor with Jillian, she has a horrible barky cough that they are going to take a look at. I REALLY want her to come home so life can return to normal as much as possible.

Thank You all Again
-Ashley (My new nickname is Momma Bear, I have officially found my bitch bone. Excuse my language but its the only way to explain it lol)

In My Arms

Plumb - In My Arms

Your baby blues
So full of wonder
Your Curly Que's
Your contagious smile
And as I watch
You start to grow up
All I can do is hold you tight
Knowing

Clouds will rage in
Storms will race in
But you will be safe in my arms
Rains will pour down
Waves will crash all around
But you will be safe in my arms

Story books
Are full of fairy-tales
Of kings and queens
And the bluest skies
My heart is torn just in knowing
You'll someday see
The truth for lies

Clouds will rage in
Storms will race in
But you will be safe in my arms
Rains will pour down
Waves will crash all around
But you will be safe in my arms

Castles they might crumble
Dreams may not come true
Cause you are never all alone
Cause I will always
Always love you

Hey I
Hey I
Will love

Clouds will rage in
Storms will race in
But you will be safe in my arms
Rains will pour down
Waves will crash all around
But you will be safe in my arms

In my arms

Home Sweet Home

We made it home! It sure is nice to relax at home, even though we need to go back tomorrow and Friday.

Tomorrow, Mallory gets her MIBG injection. The injection solution is a combination of radioactive isotope Iodine131, and metaiodobenzylguanidine (MIBG). That unpronounceable chemical will find and cling to specific forms of cancer (neuroblastoma included). Since the radioactive stuff is bonded with the special chemical, we now have radioactive tracer exactly where we have cancer. The radioactive component then is visible on a scan using a sophisticated scanner (this happens on Friday). This will give the docs a clear picture of how much cancer is in Mallory, and exactly where it is located.

The MIBG injection is custom made. They manufacture the stuff hours before it is needed, and they fly it into Grand Rapids. From there, it is flown the the hospital via helicopter, where it will then be injected into a waiting Mallory.

Before any of all that happens, we have to give Mallory heavy doses of Iodine (super-saturated Potassium Iodide, or SSKI).  Since the human thyroid is a natural sponge for Iodine, we need to give her standard (read: not radioactive) iodine, so that her thyroid will "fill up" on the good stuff. Then, tomorrow, when she is injected with radioactive Iodine131, her thyroid wont absorb the radioactive stuff, since it is already full of iodine. Same procedure for nuclear fallout; they handed out Iodine tablets around Fukushima Japan when their nuclear reactor was spewing Iodine131 into the air. The only difference this here is that instead of a exposure from a gigantic accident, we are intentionally injecting the stuff into Mallory.

Pretty sure that last paragraph is one that I never, ever wanted to have to write about anyone. Certainly not my daughter. Just sayin'.

-Ryan

Life did NOT give us Lemons.

I am having an all around rough day (I did have 3 AMAZING visitors). I am laughing, then crying, then laughing then crying and so forth and on and on all day long. We are being discharged tomorrow which should be GREAT news but we have hardly any information. My heart aches. I just want to know exactly what is wrong with my baby and how are we are going to deal with this.

The not knowing part sucks.
Cancer Sucks.

We have to come back thursday and friday to finish up some of the last tests. Then hopefully they will give us the answers sometime next week.

I can barely breathe anymore. I am putting on a brave face (which includes a lot of makeup to cover up the huge ugly bags under my eyes, and I will possibly need to start dying my hair since I can feel the grays starting to show).

I hate this.
I hate this.
I hate this.

I need visitors this week, I will need them for months, I need you guys. So please come keep me company. I need you. Thanks to everyone so far, you have touched our hearts, you have kept us going.

-Ashley

Tuesday's Update

Tuesday came and went, and we still haven't gotten the pathology report yet. We did have a sit-down with one of the oncologists, and they only had "preliminary information".  The waiting is the hardest part.

Based on preliminary information, it is Stage 4 neuroblastoma, with "favorable" N-MYC amplification.

The staging number isn't really an indicator of prognosis. Stage 4 is a scary number, because that's as high as the scale goes. But it is really just a description of her overall state. The devil is in the details, such as N-MYC amplification. Hers being "favorable" based on "preliminary" information is a small glimpse of joy for us.

Trust us, we will explain all of this once we get our data, and once we can understand it and put it into our own words.

There still can be a wolf in sheep's clothing somewhere in this mix, and that's why they made sure to mention over and over that this is preliminary information.

They are telling us now that next week Thursday they will have all of the information, and will have already met as a board of oncologists to plan her care. They will then reveal all of the information and her course of treatment to us.

On to the better news, we're being discharged tomorrow (Wednesday)! Mallory is recovering very nicely from her surgery, and we can do the rest of the tests in outpatient care. It is hard to leave before we have more information about our daughter, but it will be very nice to be able to relax at home.

We love you all, and thanks for the ongoing prayer and support!

-Ryan & Ash

Who has two pink ears and is still smiling?

THIS GIRL!


Thanks to Christy K. for the amazing photographs!

Yes, I am a crazy Mom.

Mallory ended up getting a dose of morphine last night, she just could not calm down. She had this terrible cry that I have never heard in my life. It just broke my heart. She slept really great after that 3-9 which is the longest she has ever slept.

We also went over with the doctors about the dreaded word "discharge". They brought up how we might go home today, Didn't you just say my baby had cancer and your talking about sending us home? I pretty much had a breakdown everytime someone would come in. I finally just said, there is NO way I am thinking about going home until we get the pathology report, the MIBG scan and the bone marrow scan are complete. I want a game plan of everything before they even THINK about discharging us. We are not even close to being comfotable with the broviac, changing caps, flushing the lines and changing the dressings on it.

We would LOVE LOVE LOVE to be back in our own house, with our chatty 2 year old and our obnoxious never ending meowing cat but I have to be prepared, we have to be comfortable. I'm glad I finally got the courage to portray how I was feeling and express it with words. But tonight we are totally working with the nurses and they are going to get us to be pro's before we get home.

They are currently setting up the homecare system which will include our medical testing supplies and also a nurse that will come and help us out also. Which I am so VERY thankful for.
Still waiting on the pathology report which is the HUGE report that will tell us exactly what we are dealing with here. I hate waiting, this is the worst part, not knowing. We were also just informed that Mallory will start iodine (to protect her thiroid) on wednesday, then the radioactive isotope injection (and no she won't glow because of it, yes, I totally asked) on thursday and the scan on friday. Also bone marrow will be friday as well. (I was off on the dates, we've been told so many different things)  So we have a week of waiting, Ryan returned back to work this week so I have full day of visitors tomorrow and some on wednesday but I am looking forward to having company! Thanks Everyone!

Ohhh and we hit 10,000 views! WOW, Just WOW! Thank you everyone for your continued support!

-Ashley

food / blood / marrow

We have been asked by TONS of people if they can bring us food, to make this a simpler process my friend Christy set up this site to keep it organized!

http://www.takethemameal.com/meals.php?t=RDIA2421

We also will be updating this site with information about a blood drive that our friend Heather is putting together. Our darling girl had to have a blood transfusion the day after her surgery and we are very thankful for whoever gave our little girl their blood. We just want to encourage everyone to donate! If everyone that has supported us this far donates there blood then they will be donating to parents, siblings, grandparents and children of other families and children like Mallory. (and we promise to keep the vampires away)

Ryan and I also added ourselves to the The National Marrow Donor Program. We are going through a lot right now but we are determined to make a difference in the future! We want to raise awarness for childhood cancer and cancer research.

We are so thankful for all of our friends, family and the complete strangers that have helped us out. You guys mean the world to us.

-Ashley

Easy like Sunday morning

Mallory is a champion.

This little girl is acting like normal. She isn't acting like she just had major abdominal surgery; she isn't acting like there is still a tumor inside of her. She's happy and carefree. She's a bright light when times are tough. I know this sounds funny, but Mallory is making this experience a lot easier on Ashley and I.

Today was a rest and relaxation day, here at Helen DeVos Children's Hospital. No tests, no reports today.

We got to see our *almost* two-year old daughter Jillian today! That was very refreshing. She likes the revolving doors in the lobby! We miss her so much!

 Tomorrow is supposed to be the earliest that we can get the pathology report back. The wait is draining me; I just want to know the exact level of what Mallory is facing. On top of that, I'm trying to figure out when to go back to work. Family does come first, and providing for my family is part of a huge part of taking care of my family. Having a crystal ball would be really nice right now!

---

On a completely unrelated note; I just signed up to be a potential bone marrow donor! The National Marrow Donor Program runs the "Be the Match" registry. You sign up, they will send you some swabs for your mouth and you send them back. It's that easy!

If they ever match you up with a someone who needs bone marrow, they will contact you for further information. You don't have to even leave your house to register and it's free. And someday you could save the life of a little cute kid. So why not do it?

HERE IS THE LINK TO THE NATIONAL MARROW DONOR PROGRAM, DO IT NOW!



Thanks for love and support everyone!

-Ryan & Ash

PS: We have received many requests for a way to send donations. Please read this for more information.

Roller Coaster

Mallory was totally kidnapped by the nurses here, I think all 3 girls have some serious baby fever and wanted to cuddle her all night. So Ry and I finally got 8 hours of sleep. (some how it just isn't enough to bring me out of zombie state).

I had a breakdown last night. They changed Mallory's dressing on her broviac yesterday and it took 3 of us to do it, she was crying the entire time and we had to cover her face with a mask as well to keep her from breathing on it. They want to prepare us for taking care of everything when we get discharged. We have to change dressings, clean end caps, and flush the lines as well. I don't know what happens but every time they talk about this stuff I get the feeling in my stomach like I am going on a roller coaster and I am stuck falling and my heart is just on fire. I know I am strong enough to get it eventually its just right now I am so overwhelmed. Not even a week ago my daughter was diagnosed with cancer and there already pushing to prepare us for when we go home. I still want to curl up in a ball and cry my eyes out.

We are staying strong for our little girl. I know some days are going to be worse than others, yesterday was probably just one of those days for me.
-ash

Nurses

Our nurses totally stole our baby, and refuse to give her back until we get some sleep!

(okay, they didn't really steal her, they begged to watch her!)

Nighty night.

-Ry & Ash

Quick Saturday Note

Nothing major going on today; just watching Malibu smile and wiggle. She is eating good and sleeping good. She's doing great!

It appears like the next milestone will be getting the pathology report back. Once we get that, we will know what our immediate future will look like.

Until then, it's fun to just watch her sleep :)

-Ryan

Uplifting day

"Honestly we are coping, we are moving forward heads high and smiles on our face. This floor of the hospital is so promising, these children are amazing! So if you come visit us all we ask is for big smiles and laughs! " - I will repost this here because I totally 100% believe this.

I love my beautiful Mallory, we all do, but she needs us all to be in good spirits as well. I am so thankful for my hubstobe Ryan for being the "funny" guy, because this is a horrible nightmare and without him it would be so much worse. He has got me smiling, laughing, and totally keeping up with good vibes for our little girl. Mallory and Jillian have the worlds BEST dad.

He is an amazing man, we have been together for almost 6.5 years now. For those of you who don't know us very well we have our wedding planned for this Summer on July 7th (1 day shy of our 7 year anniversary!). We're really big procrastinators and this whole wedding planning just was looking pretty stressful and not much fun, although I am looking forward to being Mrs. Wiersma the whole idea of it really didn't sound apealing. So we totally compromised on the wedding and decided Sweet and Small was the way to go. I actually went dress shopping on Sunday with 2 of my bridesmaids and my little neice Emily and picked out the PERFECT dress for the day. I was going to call back on Wednesday and pay for it but obviously some things came up and that didn't happen. But I have it picked out at least. But back to Ryan and less about our wedding, he is my best friend, and he is my rock and he has been such an amazing part of my life. We have a beautiful house, 2 beautiful daughters, and we have a relationship that so many people envy. We have been through so much together but thats what makes us so strong as a couple. I love him with all of my heart and hope someday our daughters find a man to marry just as good as there Dad. I <3 You Fef! (I should warn everyone now I am notorious for giving everyone ridiclous nicknames!)

I forgot to mention Miss Malibu ROLLED OVER! Now she did it for the 1st time on Wednesday and we were both so EXCITED! But I totally figured out how that little stinker did it tonight, we missed it the first time, just came back to Mally on her tummy. She totally took her left arm, hooked it on the right side of the playmat (it has a little tiger with one of those links hanging off of it) and swings her left leg over her right one and bam she's on her stomach! I am totally counting it as rolling over because you've got to be pretty smart to figure out how to do it that way! So impressed by Mallory, 1 day after surgery and she's smiling  and attempting to roll over.

Another fun thing about today was Nana, Papa, Uncle Eric and Jillian came up with Christmas Decorations! Mally's room is totally decked out for the holiday's, Christmas tree and all! And I promise to post pictures here soon (Yes I have been taking lots for all of you that were curious and follow my facebook. I am still a photoaholic. I just havent had the time yet to go through and resize them all). If you've ever been to Helen Devos you know that they have the COOLEST lobby, Jillian totally went CRAZY for the interactive video wall, she was jumping, running and squealing with how much fun that was! It was great to see her again today, she is a little rockstar as well!!!

We are meeting with 2 families this weekend that have gone through this same ordeal. So hopefully they will be able to give us some insite on what to expect more. Excited to meet some wonderful people that can give us some hope.


In all today was a "Good" day for all of us! Hopefully they will give us some more updates about the genetics of the tumor in the next few days so we will have a better understand of what exactly this Cancer is and a better understand of how to treat it.

We LOVE you all!!!!

Good Friday

Today was a good day.

Today was a good day, even though we have a child with cancer. " A good day" means something different than it did last week.

Last week a "bad day" was when work didn't go so well, or if I had to go grocery shopping (I hate grocery shopping), or something else just as mundane.

Good day now means we didn't receive any terrible news. Our daughter didn't need life altering surgery, and generally things didn't torpedo into a nightmare scenario.

Rather, we actually received good news today; Mallory's bone scan test came back clean! This is an awesome thing! It means that the cancer didn't spread to the bones. So, she has still has cancer, but it isn't in her bones too.

The doctors do two different tests involving the bones. They did a radioactive dye test to see if the cancer was in the solid portion of the bones. That test is done, and that's the one that was clean. We still have to wait for the bone marrow test. This will test the internal tissue of the bone for cancer.

She still has many more tests to undergo. The marrow test is one, and the MIBG scan is another big one. If any of these scans come back irregular, we have issues. If not, we have a clear roadmap to success.

So that's what we have so far. We have clean bones. We'll be thankful for that. We're thankful for that because it's the best news we've had since Tuesday.

That is the moral of the day; be thankful for what you have. Ashley said it best on Facebook: Please, all you parents, go give your kids an extra hug tonight. Because you never know when life is going to hit you with something heavy.

Today was a good day.

-Ryan

More Good News!

So we received word that the Bone Scan is CANCER FREE!!!! This is just one more big thing we were super worried about, and we can check it off the list. PRAISE THE LORD!

Mallory is currently receiving a blood transfusion, her hemoglobin was pretty low this morning. But thankfully with the broviac it is making this SOOOO much easier, no more constant pokes for her. So she hasn't been too terribly fussy at all. She gets to eat finally also, she CHUGGED her first bottle. They will be giving her a diuretic to flush out some of the extra water weight from all of the fluids they've pumped her with. She weighed 11.7 lbs yesterday and she weighed 12.4 lbs today so she has gained a TON in fluid. So we're interested to see what her weight will be after all that fluid is gone and now that the tumor is out.

We are hoping to have more visitors up next week since there won't be much testing or invasive procedures until Thursday. (Ryan is possibly going back to work so I'll be here during the day by myself). I am thinking the times we will do will be from 10-12 and 6-8. We do have a friend that is going to set up a website since I know a lot of you have been asking if you can bring us food that will help set up a schedule so we are not trying to figure it out ourselves. She is going to set it up this weekend and I will post more information as soon as we get it all set up.

We cannot thank everyone enough for all your generous donations to us, we are meeting with a worker from the hospital today to try and figure out some stuff. But it has helped SOOOO much! We are on a tight budget with Ryan not working and with just our general bills. We hate to be in this situation and to rely on so many people for help but you guys are the reason we are staying so strong!

(And thanks Sarah Dewey-Wind for the most amazing Diet Coke and Donuts EVER! And to your wonderful family!!!)

ashley.

Update of Ashley's post...

Correction, Ryan does not snore.

-Anonymous

Miss Malibu is a Rock Star!

Mallory did awesome last night, I couldn't bear to hear her whimper anymore so that sweet little girl has been snuggled up on my chest all night long. It's going to be hard getting used to working with all the things they have attached to her all the time, I am TERRIFIED I'm going to pull something out all the time. But the nurse assured us that we will get used to it and more comfortable as the days and weeks go by. The nurse kept asking also if I thought she was in pain, she whimpers a lot but how do you know and not know when your baby is in pain. They can't tell you whats going on, so I'm not sure if she is hungry or is hurting. But I have opted to give her medication as much as possible when she starts to wind up even a little bit. She hasn't eaten a drop in over 24 hours, her little tummy has got to be soooooo hungry! So we are waiting on the doctors to come in this morning and tell us when she can start eating and hopefully some other news.

They were not able to do the bone marrow biopsy, but that will be done next week along with the larger MIBG scan (again we will explain this soon as well). We should here about the bone scan sometime today though.

Ohhh and Ryan TOTALLY snores like crazy! I wish there was an easier way than digging my elbow into his chest to get him to knock it out. (I'm sure he will tell everyone he doesn't!)

ashley.

Asleep

Mallory was having a hard time with the NPO orders (can't eat or drink). She finally fell asleep, begrudgingly. Hopefully we can begin to feed her again in the morning.

She appeared to have some level of pain, and she had a fairly consistent whimper in between the full-on screaming. It really wasn't as bad as it sounds, but Ashley and I learned that we need to start growing iron stomachs to be able to watch Mallory go through the hard times. We felt entirely helpless. I'm afraid there is more where that came from.


Both Ashley and Mallory are sound asleep. I suppose I should go join them. 'Night.

-Ryan

a little update

They were not able to do the bone marrow biopsy, but that will be done next week along with the larger MIBG scan (again we will explain this soon as well). We should here about the bone scan sometime tomorrow though.

They are keeping Mallory as comfortable as possible. She is quietly whimpering, they are keeping up on her pain meds. We were also shown for the first time how to clean and prepare the broviac tube, we will be responsible for taking care of this when we get home as well. So they are going to demonstrate and go over it with us a million times so we are pro's before we have to do it on our own.

ashley

Amazing News!

‎1st surgery was a success! They removed a large (almost baseball size) tumor from Mallorys left side, there were absolutely NO complications, no blood transfusions and our sweet peanut is resting in her Daddy's arms as we speak. God is GREAT! He was certainty listening to all of our prayers today. We are still in for a long fight, but this 1st surgery has given us so much hope for our beautiful baby girl. You all have been so supportive and encouraging, please continue to keep us in your prayers as this is the 1st step in a long process to heal our beautiful baby.

We are praying that the bone scan, the bone marrow biopsy to come out cancer free. Next week they will be doing another test on the rest to make sure the cancer isn't anywhere else in her body. That is a very special test and we will explain it more as we get more information about it.

Tonight I will be hanging up pictures, some quotes we have already gotten and we are going to deck this Hospital Room out. It is our home away from home right now. We are so blessed to be surrounded by the best doctors, nurses, and staff. They have treated us like family and we will be forever grateful for them.

Step 1 complete.

Just talked to the surgeon; it went perfectly. No complications. This is the best possible outcome!

Tonight we rejoice, but tomorrow we continue onto the next stage.

Clinical Trials

We were sitting around the hospital room earlier today, Mallory was being a champ. She slept most of the day, even though we were not able to feed her after 4 AM. She had her moments in the morning, but then she just slept all afternoon.

In the early afternoon, a gentleman walked in the room and introduced himself. He is Spectrum Health Research Technician. His came up to us to talk about entering Mallory into a clinical research program.

Helen DeVos Children's Hospital is part of Spectrum Health. Spectrum Health is part of the Clinical Oncology Group, which is a consortium of hospitals around the United States. St Jude's is a COG hospital, and so is Helen DeVos.

Clinical research starts just with a team of doctors with a common goal. They focus on exactly one thing, studying a specific disease. They then present their idea to an independent review board, and the board needs to approve the study before it can be opened up for participation.

The gentleman works for Spectrum Health, but he was representing the COG. He was asking for permission to enroll Mallory into a specific COG Neuroblastoma clinical research program. Essentially the doctors are going to remove the tumor, and then chop off a portion and allow the COG to study it for research purposes. A small sample of her blood, and bone marrow will also be going with the tumor sample.

We know that research doesn't happen overnight, and we know that sending out samples won't influence the kind of care that Mallory is going to receive, but we hope it will help the next person. We hope it will help mold and shape the kind of treatments that kids like Mallory receive in the future.

It wasn't long after he left, a very nice lady entered the room and introduced herself as a research doctor working for the Van Andel Institute. Her entire career has been spent studying neuroblastoma. She is literally one of the leading experts in the world on the specific disease that Mallory has, and she came up to our room to see our daughter. She is running her own clinical research at VAI on neuroblastoma.

We approved both studies. We felt it would be selfish and irresponsible not to.

The next step.

They have finished the bone marrow biopsy, also the broviac is now in place and now we're onto the tough part the abdominal surgery. I am ready to hold and cuddle and kiss my beautiful baby girl. This day has been the worst of our lives. Waiting around is horrible, the unknown is horrible, feeling this helpless is horrible. She is in great hands and yet there is nothing that can help with the anxiety we are feeling. Our hearts are heavy, we are numb, we are praying like crazy for our baby girl!

Surgery Update 4:15 pm

"Malibu" has moved from the nuclear medicine to the operating room. They said the bone scan went on just like it is supposed to, and they are starting the hard part right now.

That's all we have for now!

Surgery Day (Ashley)

Mallory had her last bottle at 4:00am this morning, this little girl is a trooper, she spent majority of the morning and early afternoon curled up in my arms sleeping. She only made a peep when they had to do labs on her. She was even smiling and cooing at us in between falling in and out of sleep.

We met her surgeon this morning and I have to say this is an amazingly talented man. Dr. Robertson is going to be taking care of my baby and the lord has blessed him with the skills that our daughter requires in her extensive surgery. He decided to not operate on the right tumor and talked about how chemo treatment is going to be our best option to try and shrink the tumor and hopefully have it shrink away from the vena cava. If that doesn't work we will be exploring different options, he has dealt with children and adults with far worse tumors that intertwine in major arteries and blood vessels he just doesn't want to risk anything right now if the chemo treatment is successful.

They had a few different people come and talk to us about clinical trials. These involve any extra bits of tumor, blood and bone marrow that they take from her that will be put to use for further reaserch for Mallory and other patients with Neuroblastoma cancer. We opted to do this, everything they take from her will obviously be used to diagnose and treat Mallory first this is just the stuff that they have extra of. These are non invasive treatments, they will only take from things that she is already having done. We are thankful that they are continuing to do research and are finding other treatment options for children like ours. We are hoping that doing this will help the process with other families and other children going through the same thing.

We were very blessed to meet another woman going through a similar experience. Miss Lola, her daughter, is 5 years old and is fighting leukemia. Lindsey has reached out her hand through this horrible process and I have only chatted online with her a few times but she has given us hope, she gave us the biggest hug, and cried with us and we are so thankful to meet her. Even though our daughter is fighting for her life like her daughter is there are still no words we can say to them to make this process any better and vise versa. Its just wonderful to have someone to lean on, ask questions and can go to for comfort and support and knows what we are going through. God bless Miss Little Lola and we pray for her as well and for her family.

Surgery begins.

We just let the doctors take Mallory back. It was a powerful moment in the room; Mallory was being bombarded with prayers from thousands of people around the globe.

Even the Anesthesiologist got teary eyed- there was that much electricity in the room. "I'll be the doctor when we go back, but I'm a mom too!" It was amazing.

We appreciate all the love and support of everyone out there. It's between God and the doctors to keep her safe now.

We will update when we know anything more.

Thanks everyone!

-Ryan & Ash

This blog

This blog is now available at www.SweetBabyMallory.com, as well as the original address.

We figured it was easier to remember, so we registered the domain.

Day 3, surgery day

Do you get grumpy when you haven't had a meal in a while? I know I do. Little Mallory has to go 8 hours without food or water! She isn't very happy this morning :(

Our little peanut, the fighter!

Today is going to be a tough day. Mallory started fighting for her life even before she was born and today she is up against a lot. She had to stop eating around 5:00 this morning and will not be able to eat anything until her surgery at 1. Ryan and I were thankfully able to get some sleep, It didn't come easy but after these past few days we are burnt out, our mind and bodies have taken a huge hit and thankfully we both got around 5 hours of sleep.

There is no way we imagined this is the road that we would be on. We love our baby girl with all of our heart. I can remember the day she was born and my heart just growing that much bigger. Those round cheeks, that sweet cry, and her little tuft of hair. We've had her home with us for almost 9 weeks and I wish I could take her place, that I could take her pain, that I could go through this and not her. We don't remember life without her, she is a part of our family, and she is stuck with us.

Dear Mallory,
We are not sure why or how you got this sick. We wish that they could trade places with you, no child should ever have to go through this. You are what is keeping this family together, you are the glue that is helping us stick. We love you with all of our hearts baby girl, we are so very blessed to have such a beautiful STRONG daughter in our lives. Your sister Jillian just adores you too, you are the only one that gets kisses from her, she has just gobbled you right up since we brought you home. This road is going to be a tough one little girl but you are a fighter. We need more time with you, we need to see those beautiful smiles, hear those most amazing giggles and see you grow into a little person. We will be with you through every step of this process. Little Girl you are up against a lot today but just remember you are a fighter! There are people around the world praying for you today Mallory, just know that each and everyone of them even if they haven't met you love you too and they are rooting for you baby!
Love Always and Forever

-Mommy

Cancer Sucks! (Ashley)

I just want to clarify for everyone that this experience is NOTHING like Grey's Anatomy. Although they are working there hardest to get things moving for our baby girl, it definitely is a MUCH slower process than what they show on TV.

We have been introduced to many amazing doctors, specialists, nurses and staff. We are very blessed to be working with these talented and brilliant people. They have made this journey as smooth as possible for us (not that it has been any where near smooth) and Miss Malibu!

We are learning things that a family should NEVER have to go through. We were introduced to Chester today, this is a chest where they demonstrate and show us what a broviac central line is. Because this is a direct connection to her blood supply when we take her home they will teach us how to take care of it. During the surgery they will be putting in the broviac, this is so that they can draw labs, administer chemo and any other medications she may need without having to poke her every time. We obviously have a LOT to learn about this still.

Today Mallory has been a champ she pretty much slept through both the echocardiogram and the ultrasound, she had her little eyes half open and a silly little grin on her face the whole time. I am thankful that this little girl can still smile, giggle and be just such a joy to our lives and she has no idea of how sick she really is. We are thankful that she will hopefully never remember any of this agonizing process. This girl smiles even when our eyes are swelled up with tears, when are hearts are breaking for her she is giggling and cooing at us.

Our Little (but very BIG) Jillypie came up to see us today. We needed her hugs, kisses and stubborn "no's" today. That little girl is also a CHAMP! She is in her own world and for that we are thankful. Her life revolves around quoting the abc's (not in any specific order, right now "e" is her favorite!), taking naps and nothing to do with cancer. We are thankful that even for a few moments she takes our mind off of it and reminds us that we have to distract ourselves and still enjoy things even with all the bad things surrounding us currently. I don't believe that Jillian has ANY idea of what is going on, we could try to explain this to her but she still deserves to be a kid. We would like to keep her life as normal as possible for the circumstance. I am forever grateful for my mother and erika grala for taking her for us right now so we can focus all of our energy on Mallory right now.

I would like to state that "cancer sucks". It sucks worse than anyone could ever imagine. People have reached out to us from continents away, there are people that have contacted us that have children going through treatment and they have sent us nothing but encouragement and positive thoughts. These people amaze me, they have not let this run there lives, their children may be sick but they are just like any other family this is just a road bump. These people have shown me that it is possible to return to a "normal" life, it may not be the normal that we were used to but its a normal that we will get used to eventually. And as much as this journey is going to suck, we are not going to allow it to tear us apart, we will pull through this.

Day 2 (Ryan)

Here we are at Day 2. I woke up this morning, rubbed my eyes, looked around, and we're still in the nightmare. I wasn't able to sleep it away. Normally when I wake up, nightmares end, and I go about my day care-free. This one is here to stay. Dammit.

We had an echocardiogram (ultrasound of the heart area) today, and then later yet another ultrasound.

Lots of doctor meetings today. Helen Devos Childrens Hospital is currently forming a massive surgical team to give Sweet Baby Mallory a radical surgery. It is amazing watching multiple surgical teams combine efforts to provide Mallory with the best care available.

The echocardiogram this morning gave us good news; there does not appear to be a third tumor on the inferior vena cava. The bad news is that the stuff they saw was actually the right-adrenal-gland tumor pressing into the IVC. This is bad because the right-side tumor is more intricate than we had thought yesterday. The echo showed that the tumor was only pressing into the IVC, rather than growing into it.

The pediatric surgeon decided to order a third ultrasound to study the interaction between the tumor and the IVC once more, so off Mallory went for another test.

She is being such a trooper through all of this. The Facebook response has been overwhelming. We really, really appreciate all of the kind words and support from everyone around the world. There are reports of literally thousands of people praying for our sweet sweet baby, and I thank you all for each one. Those prayers are giving Mallory the strength she needs to ride this ride.

The third ultrasound gave us a bit of a stunner- the right adrenal tumor is actually growing into the IVC. This means they are becoming one, and separation becomes much more difficult.

Tomorrow is where rubber meets the road, tomorrow is surgery day. They are planning on putting Mallory under around 1:00pm tomorrow. She will first go in and get her bone-scan done to look for cancer spots in her bones. She will then get wheeled into the operating room, where she will have bone marrow drawn from her hip bone. They will then install a central-line (broviac) for use with future medicine delivery (i.e. chemo). Once that is all done, they will start open surgery on her abdomen. The plan is to remove the entire left-side adrenal gland, tumor included. At this point they are not planning on removing the right side tumor, due to the complications with the IVC.

We met with a Endocrinologist today, too. With the removal of at least one of the adrenal glands, she will likely be on permanent hormone replacement drugs for the rest of her life.

I'm continually reading articles on the Internet regarding Neuroblastoma, and some articles on being the father of a child with cancer. There are lots of good resources out there, and I hope to make use of as many as possible.

I can read-up plenty, but sometimes the little things catch you off guard. The nurse just came in and talked with me about tomorrow's surgery, and what I need to know. She then pulled out a consent form for blood transfusions. The hospital is currently getting a stock in of blood that matches her blood type. They are specifically ordering blood that matches my daughter. A lot of blood, and they are ordering it the day before a massive surgery.

Dear God, please be with the surgeons tomorrow. Guide their hands and their minds to do the best work possible. Please let them have a productive surgery, and let Mallory come out of this stronger than ever.  Oh, and please God, if it be thy will, please let the doctors leave all that extra blood on the shelf. They won't be needing it. Amen.