Dear Maid

I know you really wanted to service my room today, but as you can see I put up the "do not disturb" sign, I really did just get 15 hours of sleep. There is empty beer cans, towels, clothes, an unmade bed and junk food wrappers everywhere. I promise when I leave tomorrow I will pick everything up but for now I am off duty as a Mom. I am ignoring you request to come into my room and clean. I even signed into the hotel under a "fake" name so that no one can find me. (Ok so it's under my sisters name because she paid for it, but I am pretending I am someone important so that everyone leaves me be). Thank you for understanding.

-Ashley

They totally make cookies that taste like the girl scout coconut ones now that you can buy at the grocery store, I won't share with everyone how many I ate but just know they are AMAZING and are made by keebler! :-)

Time to throw on my bathing suit and sit in the hot tub, and I forsee a nap in my near future before Ryan gets here. (That lucky boy got his wonderful Mom to watch the girls tonight so he could spend some much needed time with me).

You make me laugh when I want to cry

So since the birth of Mallory I have not had a moment to "think" about Ryan and I's relationship, We've pushed it to the sideline, and we have just been coexisting. We knew that this would happen, that babies cause stress, an imbalance, and it takes time to readjust but throw in Cancer and it takes an even bigger tole on a relationship.

Tonight I arrived at the Baymont Hotel room at 5:30, by myself, with a heavy load on my heart and mind. It's time for a Momcation. A Momcation is where you just step back, be selfish, and relax. Something I have not been able to do in a few months, the stress of the last month and a half has been overwhelming.

I love my girls with all my heart which is why I am stepping away for a few days, so I can rebuild my strength, feel better, and get on with life again.

I hit the point where I couldn't sleep but needed to, couldn't eat but I needed to, couldn't stop crying but needed to. I felt myself falling apart, I felt like I just could no longer be a good Mother, a Good person, or a Good Wifetobe. So here I am checked into a hotel, because I need a much needed break.

The guilt of being a bad "Wife to be" is horrible. I have been short, snippy, and just a miserable person to be around and unfortunately most of this gets thrown at Ryan. He asks me "How I am doing" and somehow I find this offensive, I find everything offensive. I haven't given him any credit lately.

Let me tell you something about Ryan.
He is a good Dad, no let me take that back He is a GREAT DAD! These girls are the luckiest girls in the whole world because they have Ryan.

He is my best friend.

And I do not give him enough credit.

Ryan is the type of person that puts other peoples needs in front of his own, he is what has been keeping me together. He makes me laugh. He makes me a better person. This Man is AMAZING.

Life has thrown us a curve ball, and it sure doesn't feel fair. But we will make it Babe, we will.

So here I am, feet up in a king size bed, I've already taken a shower, ate dinner, and relaxed. And the only person I can thank right now is Ryan. Because he is truely amazing, because when everything is falling down around us he stands tall. He takes care of us. And I love him so much. He has been so supportive, he loves his ladies, and by giving me a break this weekend he understood that I needed it, that it was the only way to get me back on my feet. Girls be jealous because I am NOT giving him up, EVER, EVER, EVER!

I love my family and I miss them but for the next 2 nights I am going to work on me, feeling better, and get myself back together to help Miss Malibu kick this cancers ass.

I LOVE YOU FEF, BOOGEY, AND PUNKY!!!

Happy Friday the 13th :-)

Lets see Mallory has had a great day so far

• 3 blood draws (1 the lady messed up and they had to come back for more blood)
   
• She has high potassium which is why they took blood, it could be a fluke or it could be signs of problems with her kidneys. Obviously we are hoping for the chance that its a "fluke"
   
• She all of a sudden developed a rash around her Broviac and under her arm pit. They gave her a dose of benadryl to hopefully calm it down.
  
• She also has a wicked rash all over her lady bits.
  
•  I thought she was getting a tooth, but she's starting to get mouth sores so nope my 3 month old does not have a tooth.
  
• After careful documentation the nurses have informed me she eats every 1-1.5 hours.
  
• Her broviac is still plugged up, they are not going to remove it yet, just continue with regular blood draws in the arm (OHHHH THE JOY!) because it still flushes. I'm a little pissed at this, I really do enjoy holding my baby down when you send an amateur person in to draw her blood and it takes them an hour to get it.
  
  Pretty much Today can be over with, I want to go home and once I get home I'm packing my bags.
  

Pause

They have to do another CBC to check Mallory's potassium levels so my "Momcation" might be on hold. Please PLEASE let this be a fluke and have the next blood test come out fine!

Momcation

I seriously HOPE we can get out of here today. Mallory's broviac still will not draw so she most likely will have this one removed and another one put in. So another surgery is probably on the agenda. I just hope they schedule it for next week outpatient instead of trying to fit it in this weekend.

I am in need of a Momcation, a weekend away from my kids, away from Cancer, away from the Hubstobe, just me myself and a few bottles of wine in a hotel room. Relaxing, recharging, and regathering myself. And I am taking that weekend this weekend if we get out of here at a decent time today.

Daddy will have a fun filled weekend with his girls. :-)

To be honest I have had a breakdown in front everyone in this hospital. I just can't get a grip. I'm pretty sure that they have a big red sticker in Mallory's file that says "MOM IS CRAZY". I was having a hard time accepting defeat, I hate leaning on people for help and support, so this is tough. But I am officially calling it "I am Ashley, and I am not capable of doing this on my own". So there, I'll stop being stubborn, I'll start asking for help, and we will survive this.

I get why some parents do go nuts. I hate it but I'm there and I'm calling a time out. I can't sleep because I'm always worked up about how little sleep I know I'll be getting. It never fails Mallory is always waking up around 5-6 and stays up till 8 when Jillian gets up. She doesn't go to bed till 12-1 (sometimes on an unlucky night 3am) and I get up every 1.5-2 hours with her to feed her. She only eats 2 ounces at a time, I've been cat napping for 3.5 months now. My mission this week is to set up a schedule with people to come over and watch the girls for a few hours everyday to take some of the weight off of my shoulders. I cringe every time she cries, I don't want to pick her up, sometimes I lock myself in the bathroom and pretend I can't hear her. That's not how a Mother should feel about her baby, and It hasn't always been like this, I love her so much, Mommy just needs a break.

So I am hoping, praying, and pleading with them to let us go home today. I will be turning off my phone, checking into a hotel room and sleeping for 3 days straight.

Round 2

So we waited a long time today to get admitted but that was for different reasons.

Mallory's broviac was plugged AGAIN! It's plugged so they cannot draw labs from it but they can put medication into it. Its has a blood clot at the end of it that is preventing it from working correctly. So they are hoping by running fluids into it throughout her chemo treatment it will hopefully open up the lines. If not we go in for another surgery to replace this one. That took 5 hours alone to get figured out, they did a dye study to figure out where the problem was (which only took 15 minutes) but we tried the anti-clotting agent again before they did that.

We saw her primary doctor, a nurse practitioner, a physician's assistant, and a few nurses. All in all they cannot fully explain to me why her stomach will not hold much food, there is no way they will do anything until after Chemo. Especially since she is gaining weight, she's a chunk at 13.5 pounds! They did change her from Zantac to Prevacid to see if maybe reflux is causing her feeding issues. (KEEPING MY FINGERS CROSSED THAT ITS PART OF THE PROBLEM!).  So we wait, I will remain sleep deprived and in a Zombie state for the next few months.

A lot of people have asked how they can help us, honestly meals are great (I was just saying how I have no energy to make even mac n' cheese). Coming over and playing with the girls would help me also. And seriously Mallory snuggles are pretty amazing and Jillian can totally keep you up to date on apples and the Sun on her Magnadoodle. hehehe.

We were admitted around 5, they administered her Zofran and a steroid medication to hopefully combat that nausea a little bit more this time around. So far SO GOOD! No big reactions like she had with the Etopocide (Mallory had MAJOR issues with the Etopocide and growing devil horns the minute it reached her little body). THANK HEAVENS!

She received Carboplatin, Doxorubicin, and Cytoxan today.

The bigger she gets the higher doses she gets, so the Carbopatin was actually in a bag today instead of an itty bitty syringe. She received this drug last time we were here for Chemo and did really well with it then. The main side effect from this drug is low blood counts and nausea.

Cytoxan was the 2nd drug given, this drug they are extremely meticulous about, they check her urine to make sure it is diluted enough so it does not sit in her bladder for long and cause any damage. The main side effects of this medication is hair loss (which Mally only has a touch left in the back now), nausea, vomiting, loss of appetite, and low blood counts. This medication cracked me up a little bit it came in a HUGE syringe, I even asked for a souvenir one I thought it would be a good keepsake. So they gave me one to take home, adding that to the baby book will prove to be a challenge :-p (I promise to upload pictures when we get home)

Doxorubicin is the 3rd medication she got today. It came in an itty bitty syringe and it was BRIGHT RED, they warned us her pee might turn red for a few days after receiving this so not to be alarmed at all.  This is one of the main side effects along with hair loss, nausea, vomiting, low counts, and mouth sores (Luckily we haven't noticed any of those from Chemo yet).

Now I listed the most common side effects obviously there are more than just those they include kidney damage, heart damage, hearing loss, sensitivity to light (good thing its WINTER and we don't leave the house unless were going to the doctors!), and diarrhea. They do monitor these VERY closely even though they are not that common.

Chemo is given to destroy cancer cells by interfering with the cancer cell's growth cycle. So basically they are killing all the bad cancer cells but unfortunately that means they have to kill some of the good cells along with them which is why she gets low blood counts, needs transfusions, and is monitored so closely.


The doctors were concerned that her ANC (her ability to fight infections) would not be high enough to do Chemo this week, so on Monday she received a Neupogen Injection to raise her numbers. We were hoping they would reach about 750 instead they are at 4,700!!!!!! Which is a GREAT number to start chemo at! We are hoping that since she reacted so well to just the one injection that she will react the same way if she would need future ones and hopefully we would not have to give them everyday.



This round of chemo is a VERY short one, it involved the three medications and we just have to stay 1 night and will hopefully be home early tomorrow.

They will be scheduling another CT scan and catocolomines test (they can detect Neuroblastoma cells in her urine) to make sure the chemo they are giving her is working in the next few weeks. They do not want to give her these meds if they are not helping destroy the Cancer. We have been given great statistics and this treatment works 90% of the time, so we just pray that she is part of that 90% of kids it works for.

All in all I have consumed mass amounts of diet coke all day long (Mallory and I only got around 4 hours of sleep last night, she was FUSSY FUSSY!). Chemo went great, one more round down! And praying for good news in a few weeks!!!!

Thanks EVERYONE!!!!

There is good days and then theres bad.

I am on the clock 24/7, I take care of my 2 year old, and my 3 month old with Cancer.

Today was another bad day. I think once I make it 3 days on little to no sleep the 4th day is always the worst, it's the day when I reach my breaking point, where there are tears streaming down my eyes and I just don't want to get up. I want to give up, commit myself to an institution and just say "I'm DONE".

Because I knew going in having 2 kids so close in age would be rough, exhausting, and draining. But lets just through a hole pile of shit (aka Cancer) at our family to make it even tougher and see how long one can stay mentally sane.

We went to clinic yesterday and Mallory's ANC was still low, so they gave her a neupogen injection to raise her counts. Which is great, fine, dandy but then not give her ANYTHING to make her feel better. I love having a miserable child that I can't help. It makes one feel AMAZING that they cannot do anything to help there own baby. All I can do is hold her, cry with her, and pray that the next few months will be over. That I can just wake up from this stupid nightmare called Cancer. They sit there and tell me that there is nothing they can do for her because she is so small, because she should be fine. But really? How many kids go through chemo feeling great? How many adults? Just because my child cannot speak does not mean she does not feel pain, that she doesn't feel sick, that she's doing just fine. Because you trying living with Mallory, she's a miserable child since this all started. It's like she knows, and I know she loves us, she knows we're doing this to save her.

I wish this year away more than anything.

The nurses keep telling me I'm doing a great job, that I can do it, that I can make it. But I'm not so sure. I'm slowly withering to pieces, I'm breaking down, I'm falling apart.

Blood Drive

We have made our first step in Cancer Awareness we are hosting a blood drive at the Grandville, MI Walmart on February 25th from 10:00am - 4:00pm. This is just one small step that we would like to accomplish through this journey. We are not only doing this for our Beautiful Daughter but for everyone's Mothers, Fathers, Grandparents, Siblings, Daughters and Son's that might need one at some point in there life.

I bring myself back to the day Mallory had major abdominal surgery to remove the tumor and adrenal gland on her left side, I just remember them taking blood to find out what blood type Mallory was so that they could prepare themselves in case she lost a lot during surgery. The anesthesiologist went over protocol for how she would take care of our baby girl in case of an emergency, 4 different sites for an IV, one for medication and 3 for if they needed to do emergency transfusions as fast as possible. My heart hit the floor, the possibility of my daughter bleeding out, dying, I had only known her 2 short months but trust me when I say I have been in love with that Girl since the day we found out we were pregnant. This was the hardest part for me, the fact that my child could die without this blood. Praise the Lord that she did not need it during the surgery, the prayers from around the world were heard that Day and God held our little girl in her hands during that time and protected her.

Ryan wrote this the day before "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." And it gives me chills. Mallory did need a transfusion the day after surgery because in a tiny baby losing a little bit of blood is actually a LOT, so that was the first time. The 2nd time she needed a transfusion was because her hemoglobin was so low after Chemo therapy so they did another one. We have a 50% chance of her needing one every time we go through Chemo.

This is HUGE, never in a MILLION years did I ever think to myself that Cancer patients would need transfusions, this didn't even cross my mind. Within the 2 months we've been going through this I have met many families many of which are at Clinic for this purpose. There are many other reasons why people would need transfusions as well and we want to make a difference.

We have an event on facebook and I pray that each and every person that RSVP's will come, that's 72 people that can make a difference to a whole bunch of people. And for those people I am grateful. They are helping my baby and a WHOLE lot of other families.

We have another clinic apt this morning to check Mallory's blood counts to get her body ready for Chemo. Her ANC was still pretty low at the last check up so she may be needed a Neupogen Injection to raise this number so her tiny body is ready by Thursday. Thursday Marks the 2nd round of treatment, after this treatment we will schedule a CT (to make sure the tumor is shrinking), a catecholamine test (checking her urine for traces of cancer), and an echo cardiogram (this is to take a look at her heart because the Chemo she is recieving can sometimes damage it). For us this is a BIG step, we are just getting closer to the finish line.

I am nervous about them leaving a tumor inside my child, I know that this is the best possible option for her to lead a normal life. It just freaks me out, did they kill it all? Is it going to come back? What are the chances? I know she needs to have it left in so she isn't on medication for the rest of her life from having both Adrenal Glands removed but this still scares me. There is absolutely NO way they can remove just the tumor they would have to remove the adrenal as well. So this is our BEST option, I will take it obviously but still it freaks me out.

I have gone into survival mode meaning that everything I do as a parent is to get me to the next day. This includes the ways I parent. I not only co-sleep with Mallory but I put large amounts of rice cereal into her bottle to get her to sleep longer. As a 1st time parent, NO WAY would I have done this with Jillian, she was in her crib at 2 months old, she would only take naps with me in our bed, and she did not get any solid foods until she was 4 months old and it was only rice cereal and teeeny tiny bits of it at a time. I followed ALL the rules I had set in stone, when your 2nd child does not sleep as much as you need this whole "plan" gets thrown out the window. So here I am 3 months in, sleeping with my child in bed, feeding her huge rice cereal bottles before bed (I now get 3 hours instead of 2!). I am hoping this will slowly stretch her stomach so that she is able to eat more less frequently. The tumor was so squashed up against her stomach that she just has a hard time eating a lot, which is another reason why my chick-a-dee is such a chunk, she eats all day long, but bird feeds. I am curious to see where my parenting goes from here, I am pretty sure Jillian will be in diapers till she's 5, Mallory will be walking around with a bottle and sleeping in a bed with me until the day she gets married and moves out. (HAHAHAHA Ok, so I promise it won't be THAT bad, but it sure seems like it right now).

But seriously how can you say no to these sweet sweet girls?(I am in LOVE with this picture, Jillian conked out on the couch for the 1st time ever after her besties Birthday Bash and I had to use it as a photo op to get a good picture of my 2 cutie pies!)

Some days you just need to cry.

I hit my emotional breakdown point yesterday, yep the one where you throw all of your extra baggage on the parking attendant of the Children's Hospital. That poor, poor man.

I spent a few hours in the ER with Mallory yesterday, they couldn't give me any answers as to why she will not sleep. There is nothing else they can give her to make her feel better, sleep better, or to get her back to her happy self. She's gaining weight, slowly, but gaining so there are no answers to why she won't eat more and there is nothing I can. As a Mom this makes you feel like dirt, complete crap, and it just isn't fair that my baby has to go through this.

What I am feeling is normal, the way I feel is OK. I've come to terms with that. I've realized I am not SUPER Mom, I cannot do this alone, and I have asked for help. I need help. I have a history of depression and it's just seeping through my veins now, I am stuck.

I have wonderful parents who have stuck by me in every possible situation in life. Even myself being a naughty kid who banged her head on everything as a child (yep that's why I have a scar across my forehead), pushing my brother around, and I was defiant teenager (ohhhhh my the things they never knew)! Through Jillian's colic, teething, and eye doctor apts and surgery. Now through this with Mallory, There are NO WORDS that even come close to describing how THANKFUL I am for them. Without them I would have walked away, I would be curled up in a ball crying my eyes out in a corner on a daily basis, without them I wouldn't be who I am today. And I am forever grateful for them.

I am so in love with my silly girls. They are what keeps me going.

So this is just what life is going to be life for awhile, I've accepted that. I just have to get through it, just a few more months Ash, just a few more months.

Exhausted

I pretty much couldn't get off the couch today. I know we are all entitled to days like this but I am feeling overall just downright crummy.

Not a good way to start the year.

I cried today, I haven't had a good cry in a couple weeks. My baby has cancer, she's grouchy and doesn't sleep well. I am having a hard time with that, I love her so much and yet I can't help but not want to get out of my bed in the morning.

My daily routine used to be easier, a lot easier. Now I have to worry about medications, flushing Mallory's brociac, finding time to make breakfast and lunch for Jillian. Getting to apts on time. I can't seem to fit any type of housework or even a shower into that because I'm just too busy moping around, changing diapers, wiping boogers, and trying to stay sane.

Mallory all of a sudden is very irritable, its been soon difficult to watch her go through this. I have no idea if she's got an upset stomach, if she doesn't feel well, there is no magic cancer reader to tell me how to make her feel better. To tell me what's wrong with her. All I know is there are things I can try and they just are not working. She still doesn't eat much either. I wouldn't be surprised if she lost weight this week.

We have our next clinic visit this Thursday, then chemo round #2 next week Thursday. Then we will have another CT scan, ecogardiogram and catacolomine test to see if the chemo is working. I pray that it is.

I am having a hard time taking care of myself, let alone 2 kids and one of them that has cancer. For the next few months I am going to scrape by. I just don't know how else to make this a more manageable situation. I just don't know. I put on a brave face for everyone but I am falling apart. This is my baby girl and I can't do a damn thing.

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