Look who's 2!

THIS LITTLE GIRL IS!!!!!
Happy Birthday to our daughter Jillian, you have been a light in our lives since the day you were born. We are so excited for this next year. You make us smile everyday :-) Can't believe how fast these 2 years have gone, it feels like just yesterday we were at Metro waiting for your arrival. You took your sweet time arriving (27 hours of labor) but you have somehow kept up that passive go with the flow attitude that we love so much. We love you Boogey!!

Mallory joined us in the celebration this morning, she has no teeth to eat cake with so she just looked stunning in a birthday hat :-) (Jillian wouldn't wear it anyways so I'm happy someone did!)

Mallory's 1st clinic apt after Chemo went well. Her numbers have dropped which is to be expected, luckily her hemoglobin is just slightly under normal so she did not need a blood transfusion. She is severely neutropenic meaning her body would not be able to fight off an illness so we have to be extra careful right now. So no birthday Bash for Mallory (but we were not planning on bringing her anyways). We have an apt next week Thursday as well and Chemo again January 12th. This time different chemo drugs so hopefully she will tolerate them the same as this time around.

All in all this family is doing GREAT!!
-Ashley

You don't know how strong you can be until you have to be.

They admitted us to Helen Devos Children's Hospital a month ago. This is the book they broke the ice with to tell us that our precious little girl had Cancer. It seems like we've been going through this for a lot longer than that. That whole first week is what breaks me down, it's what makes me want to curl up into a ball, its what brings back the tears.

It still doesn't feel real. I watch this little girl as she fights this horrible cancer and she is the reason why we are strong, she's the glue holding us together. She's the reason why I get out of bed in the morning. Because this girl has been through so much and yet here she is 6 days out of her first round of chemo and she's still smiling, she's even giggling all the time, and starting to attempt at rolling over. Not even Cancer is going to hold her back!

2011 has been a rotten year for us minus a few GREAT things that happened.

In January we found out we were PREGNANT! And used Jillian as the official announcer!

(She was just a tiny nugget in January!)

 February was the last month of trying to get Jillian to actually wear glasses. As you can see a 1 year old in glasses = hard work getting her to actually look through them!

Jillian started WALKING in March!

In April, Jillian had to start wearing an eye patch, you have to admit it was pretty stinking cute :-) Surprisingly a LOT easier than making her wear glasses!

May was a GREAT month for us, we found out that we were having another GIRL!

Trust me, we LOVE our girls in this house!!!!! :-)

Jillian had her eye surgery in June, its probably bad to admit that a little part of me misses her crazy eye. It's a good thing she's kept up her silly attitude without it though! Our kids did NOT win the jackpot when it comes to vision in our family. (SORRY GIRLS!)

July was a fun month too, Ryan and I celebrated our 6 year anniversary! I was 7 months pregnant, and we had an amazing 4th of July!

August was NOT so much of fun month for us. Besides Ryan's Birthday (He turned 31 and we celebrated with a lopsided angel food covered in pink frosting, a wonderful tradition). We spent several nights in the maternity ward because I kept having preterm contractions, I was put on bed rest for the majority of the month and had to spend a lot of time away from Jillian so I could rest.

 

 

September was GREAT. Miss Mallory Aleda joined us on September 23rd at 4:10 PM! (And Yes I really do look that great after having a baby, thank you EPIDURAL!)

We are not one of those families that has a cute picture of us all smiling, looking perfect, but that is totally our life. We are blessed to have such a wonderful, chubby, cute baby to add to the chaos of our life!

November changed our lives. Mallory was diagnosed with Neuroblastoma. It was a heavy blow. Our family hit rock bottom on November 29th, Our world was turned upside down. This sweet pudding of a baby of ours had developed 2 tumors in utero.

December was a very hard month for us. Mallory had surgery to remove the larger of the 2 tumors, we spent 8 days in the hospital learning how to take care of her at home. We came out of room 913 with more than just Cancer, we came out better people. This hit us hard and we never expected it. She had her 1st round of Chemo this month and has been a trooper. She keeps on smiling, she keeps on giggling, she keeps on going even when the world is crashing down around us. She's a strong little girl and she's got all the right stuff to fight this! 

Goodbye 2011!
WELCOME 2012!

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