Tuesday, January 31, 2012

What the fuck?

After all that Mallory has gone through, this is the ONLY thing I can say. Seriously WHAT THE FUCK?

A year ago we announced that we were pregnant with this beautiful little girl, Jillian was dressed adorably in her "Big Sister" shirt and a year later I am heart broken. Because I had pictured this so differently in my head. Another happy healthy little girl, perfect, so perfect. And not that she's not perfect but she's had to put up a tough fight these past 2 months and to get this shitty news all over again just re opens every single wound possible. It is stabbing a knife into my chest, I hurt for my little girl.

I know its crappy to talk "bad" and have negative feelings, try to stay positive, try to keep my chin up. But I cannot bury my little girl, I can't. But those feelings are ALWAYS ALWAYS ALWAYS in the back of my head. That she could die, that I could lose her. That someday her cute smiling face won't be there.

FUCK YOU CANCER FUCK YOU.



I know we haven't run out of options, but of course we hit a road block, of course we might fall into the 10% of kids that don't respond to treatment, of FUCKING course this would happen to us.

I know we don't have all the answers, I know that there is a chance that this it is working but its a teeny tiny chance. Neuroblastoma you are a BITCH and we HATE YOU!

My daughter has suffered through 2 chemo treatments that have made her super sick, that have kept her regressed to a newborn. She can't eat, she can't sleep, and she just feels down right crummy. I just cannot take it, I can't do it. I can't hold it together, this is a load of crap.

WHAT THE FUCK?

excuse my language, I don't normally talk like this. but this is how I feel, this is what I'm feeling.

Now we get to play a waiting game, while my stomach is in knots for another week or two, while we figure out whats going on. In the mean time we wait on treatment which is just another chance for this stupid cancer to get bigger, to grow, to make my kid even sicker.

HOW IS THIS FAIR? HOW IS THIS POSSIBLE?













No news is not always good.

Mallory's CT showed that her Adrenal Tumor is getting larger. This could mean that the Nueroblastoma is not responding to treatment or that as it's dying it's getting bigger and pooling with blood.

We do not know anything right now. This kills us.

Her doctor is currently waiting for the surgeon to get back to him to let us know if it's possible to do a biopsy on the tumor. We are waiting on this phone call right now.

He also explained that there is some activity in the liver, what this means we are not sure but they will be watching it carefully from now on. Treatment is on hold until we are given the consultation with the surgeon on where to go from here. Which will include more waiting.

The more waiting that we do the more sick to our stomachs we get. Our poor girl has been through ENOUGH and this just adds more tests, more chemo, more everything. Seriously? Seriously? Why? Why? Why?

The only good news today is that Mallory finally rolled all the way over. She's getting bigger.

Monday, January 30, 2012

Say a little prayer for our sweet girl

This morning we go for Mallory's follow up CT to see if the Chemo is working. I just hope for her sake she does not have to go through this much longer, you can just tell the days where she doesn't feel well. Where she is just not herself. I just want her to be better. I know we will have 2 more rounds of Chemo, but to get some more good news is what we need.

These 2 rounds have knocked her down, make her feel just icky. Her eyes get red and puffy and her skin gets super pale. The weird part is that she finally gets back to feeling better and we just have to repeat it. So back into the cycle we go.

We start Round #3 of Chemo this Thursday, a 3 day hospital stay. She gets Etopocide again which is the Chemotherapy that made her really miserable the 1st round. She would start SCREAMING the minute it got into her system, they had to give her benadryl to calm her down. My poor poor sweet girl, she just doesn't deserve any of this.

The hard part is enjoying her being a baby. We LOVED LOVED LOVED Jillian when she was a baby, every little milestone she hit we celebrated. And It's not that we don't love Mallory as a baby, we just wish the next 2 months away, not because of her. Just because of what she has to go through, what she has to put up with, what she has to fight. It's been hard, she doesn't sleep good, she doesn't eat good, and she just has really bad days. As a parent that's hard to watch, and I wish it away. I am obsessed with her pig pudgy cheeks, and her round bald noggin, and her chunky thighs. Seriously she could make anyone even on there darkest days smile. How can you not smile when you look at her? She has the strength of a full grown woman (I was gonna say Man but we all know how they are deep down, wussies! Especially when they get a cold!).

So Proud of my Little Girl, SO SO PROUD!

Friday, January 27, 2012

We LOVE Nap Time

Today was one of those days where I desperately needed nap time to work, but it did not pan out that way.

Jillian is required to spend 1 hour of quiet time a day, if she naps great, if not ohhh well. We switched her to a toddler bed at 18 months old so that we could get the nursery set up for Miss Mallory. Low and behold Mallory has only taken 2 naps in the crib, *smacks self in head* I should have left Jillian in hers for a LONG time. I just did not want to buy 2 cribs.

So after a few months she started getting out of bed, playing, and running a muck all around her room. We super child proofed it, if she wasn't going to nap she was certainly going to spend some down time. And it works out perfect, she reads books, plays with her stuffed animals, and sometimes manages to fall asleep. I try to keep all the LOUD toys out of there just so she has to quiet.

Today was no exception no nap for Jillian except Mallory would not nap either, instead we laid in bed and she coooo'd and giggled at me. She is sooo smart, she is so ticklish on her right cheek and every time I kiss it she pulls her shoulder up, closes her eyes, and lets out the biggest heart melting laugh. I could just eat her up.

After an hour we went and got Sissy out of her room, I changed Jill's diaper and she says "Ohhhhh Noooo" and I said "what?" and for the next 20 minutes she repeated to me "WHAT? WHAT? WHAT". Seriously how can anyone NOT love this age? Yes she throws tantrums, does naughty stuff, makes a mess, but seriously how cool is it when they start learning to talk? I get the tantrums, you try wanting a banana and not being able to tell someone that's what you want, I would throw myself on the ground too. Totally makes sense to me.

Pretty much EVERY DAY we jump in my bed, we have a king size bed and it is AMAZING. Not only to sleep but to jump on! (Ok so I don't jump but Jillian DOES!). So Mallory and I lay on one side and Jillian bounces her little butt off. Today inbetween bounces we were counting Mallory's toes, I had Jillian count for me and she says "Ooooone, TU, TREE, *insert long pause* SSSSIIIIIII-X, Sephen, Eigh, TEN!". I was a little concerned not only for the fact that Jillian missed a bunch of numbers that maybe just maybe Mallory was missing some toes. But nope there's 10 cute piggies on those feet, 10 perfectly perfect toes that are ohhhhh so amazing and never stop wiggling. Someday we're going to have to invest in another king size bed to put next to ours so that we have enough room for ALL of us to jump! :-)

These girls amaze me. I don't talk enough about Jillian on here, I know this is Sweet Baby Mallory's page. But my 2 year old is incredible! She is sooo sweet, sooo funny, and so much more than I could ever describe. She has a constant soundtrack playing in her head, she dances everywhere she goes, in the middle of the store, at home, at her Grandparent's house. She is starting to say the FUNNIEST things. She has adapted so well to Mommy not being home as much, to me having to spend a lot of my time taking care of Mallory. I have not had a job since I had Jillian and that was a little over 2 years ago, and I am so lucky that I get to spend all my time with them. She can have off days, where she throws tons of tantrums, does naughty things and does not listen but that's what makes her "HER!" and we LOVE it! Jillian just morphs, she continues to grow, she continues to be the whimsical child that she was as a baby, and I am SO lucky to have a child like that, who can go away for a couple days and have it not effect her. She just falls right back into her routine and its so special. She is just AMAZING.

I have decided I have the best kids in the world. Jillian and Mallory you ROCK!

Thursday, January 26, 2012

Relay For Sweet Baby Mallory

May 11th - May 12th get your walking shoes on and come join us at Lamar Park!
Join Team "Sweet Baby Mallory"



Mallory and I have had a LONG LONG week, we have had to do nuepogen injections since Monday and she's been so fussy. The nuepogen makes her body recover quicker from chemo, but can cause bone pain. Of which I am almost positive she's having her ANC is 14,000+ the highest it's ever been is 4,000. So on top of that the poor girl's white blood count was out of SIGHT at clinic today, so she's fighting some sort of cold.

She projectile vomited all over the playroom (talk about YUCK). She does NOT have the flu, she just had not eaten at all last night and I think she was being a touch gluttonous. But one glorious thing about last night was she did NOT take a bottle all night, so hopefully it sticks and she starts sleeping through the night (although I am NOT getting my hopes up at all).

We spent our entire day at clinic while they ran lots of fluids into her along with some zofran to combat and nausea she might be having. We also found that putting her priolsec into a bottle with some apple juice is the KEY to making her take it! FINALLY! Although I am totally against giving kids tons of juice, I am calling this the exception, I cannot handle 1 more vomit morning session. I had a breakdown and sat and cried in my laundry room after she got me, the floor, herself. It was so GROSS! I just cannot take anymore puke, this says a lot for a Mom to say this.

I am actually curious is our insurance will pick up the ticket to a good steam cleaning because Mallory alone has exceeded her "yearly" puke allowance on our floors. Why oh why did we buy a house with ALL carpet?

Monday is the big CT.

PRAY PRAY PRAY PRAY

We will have the results by Tuesday.
I am PRAYING so hard that the chemo is working, that all of that Mallory has gone through is making her better, that it is killing the cancer, that she will see many many many birthdays. That there is a light to the end of the tunnel, that we will be there very soon. That our little girl does not have to endure much more pain and suffering.

Sunday, January 22, 2012

Awareness

a·ware·ness [uh-wair-nis]
noun
the state or condition of being aware;  having knowledge; consciousness

Awareness in itself is a first step. What you choose to do with it from there makes all the difference.

We choose to be aware and we are going to do something about it.


The 1st step for us was adding ourselves onto the bone marrow donor registry. Very simple and easy to get set up, 4 cheek swabs and they add you to the registry.
You can do that here



The second step we made was by creating a blood drive in honor of Mallory and all Children with Cancer. The drive is February 25th at the Grandville Walmart from 10am - 4pm
You can sign up here!

the zipcode is "49508" and the sponsor code is "goodale"



One thing I wish we would have done is donated our daughters umbilical cord blood
. I know a lot of people that are pregnant right now or trying to get pregnant take a moment out of your day and sign up NOW to have them deliver a kit to your house to bring with you to the hospital.
For more information go here! 



There are many MANY MANY organizations you can donate to! Every SMALL amount helps, even if you can only give 5$, every little bit gives these foundations a better shot at making a difference.

The Children's Neuroblastoma Cancer Foundation 


The Sierra Rayn Children's Neuroblastoma Foundation
- This foundation was the first one to contact us to add Mallory to there Little Hero's section. 


Children's Leukemia Foundation of Michigan



Get Well Gabby Foundation - they are in the process of filing paperwork. Gabby is a beautiful girl who earned her Angel wings on September 11th, 2011. She passed away 12 days before Mallory was born, I believe that she is personally looking over our little girl. Her story is the first one I read when Mallory was diagnosed, although Gabby was taken from this world her legacy continues on. This family is making tremendous strides in making a difference, they are our hero's, our inspiration, and although we have never met them they have changed our lives. 


Beach Haven
is dedicated to serving children diagnosed with cancer and their families by providing retreats and other charitable services designed to help them connect with one another as well as with other families facing similar challenges.


St. Baldrick's Foundation -
You can be a hero for kids with cancer by organizing a St. Baldrick's event in your community, shaving your head, involving your business or organization or volunteering at an event. This is an amazing program that focuses on finding a cure for cancer through public awareness, they raise money many different ways but the most profound way is by doing shaving of the head events!

St. Judes Children's Research Hospital



There are also MANY other ways to help. 



 1. Sitting down with your children and creating cards for the children at your local hospital. 



2. Finding a family and sending words of encouragement, offering help, and being supportive. As a Mom of 2 small children and 1 that has Cancer, time is not on my side, all of the help I have received through volunteers working with me emotionally, doing small bits of housework, bringing us meals, holding Mallory and just being there in general has been so wonderful. I don't think I would have kept it together as well without those people. 



3. Donating New toys to the the Hemotology, Oncology Floor. Each child at Helen Devos gets a "poke" prize every time they get poked. Toys can vary in range from 0-18years old. Anything you find on clearance, anything helps. Helen Devos Childrens Hospital is wear Mallory is treated.



4. Be conscience of other families. If you or your child is sick I cannot stress over how important it is to keep them at home. I realize that yes we all get colds, runny noses and coughs, although there are situations where you HAVE no other option but to go out but use proper hygiene and common sense. Cough into your elbow, don't wipe your nose on your arm, and wash your hands after using the restroom. Do not bring your child grocery shopping, birthday parties, church if they have a fever, are throwing up, or are not feeling well (They call it Motherly Instinct For a REASON!). This is a personal pet peeve of mine even before Mallory got Cancer (now I am overall way more cautious to the point where if you have a runny nose you are to stay at least a mile away from her). By making the choice to stay home when you or someone in your family are feeling under the weather you can prevent spreading this illness to other families.




5. WEAR GOLD! GOLD RIBBONS! Childhood Cancer Awareness Bumper Stickers, Magnets, T-shirts! Or for ANY cause!

GO HERE!

We will be updating this in the spring with events you can join to help us raise awareness! There are many foundations, causes, and things you can do to make a difference. And we encourage EVERYONE to do SOMETHING!!!

Saturday, January 21, 2012

Mark your Calenders and Schedule your appointment TODAY!

We were able to book 2 buses for the Sweet Baby Mallory Blood Drive! Please sign up for a time! I would like to see all of the time slots booked before the drive even starts! Lets make this a HUGE success everyone! This is a drive that will not only benefit my daughter but SO many others. So many families that I have met on floor 10 of the children's hospital have been there for blood transfusions, so many of them NEED your help.
This is personal to our family, never in a million years would I think someone I know, let alone my OWN daughter would receive a blood transfusion. Last Thursday marks #3 for our sweet peanut.
You are not only helping my child, but you are helping other people's children, mothers, fathers, siblings, grandparents, you are helping ALL of these people by attending. I just cannot say how IMPORTANT this really is.
Ryan wrote this the day before her 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."
I know I have posted this before, but this truly describes how we feel. It is worded perfect, it is the raw truth. They had blood on hand for our peanuts major abdominal surgery that could have potentially saved her life. This hits home for us. Every time Mallory goes through chemo we have a 50/50 shot of her needing a transfusion, both rounds of chemo ended up with her getting a transfusion so far and we have at least 2 more rounds to go, she had another one the day after surgery because she lost some blood (not a lot but for a baby a little is a LOT!)

I will be the first to admit to being naive about donating blood, I have only done it twice in my life, that's NOT enough. It's not acceptable, I will be lining up every 56 days to have my blood drawn, I hate needles, I HATE THEM! But I will be down there EVERY 56 days until they tell me I can no longer donate. You can donate every 56 days, this equals out to be around 6 times a year, which is 32 times in 5 years. This is 32 people that you can make a HUGE difference in there lives by doing it. So please if you have a heart, if you have blood pumping through your veins, if you qualify, I beg you to please help someone, you truly could save a life. You can make a difference by taking a small step and EVERY step counts no matter how small it is!!
The blood Mallory received was from Michigan Blood the same blood drive that you will be attending. All blood donated will go to West Michigan Hospitals. THANK YOU THANK YOU THANK YOU!!!!

https://donate.miblood.org/portal/. Use 49508 as the zip code & "goodale" as the sponsor code to search for the drive (it's labeled as "Wal-mart") and then schedule your appointment.

This is the first SMALL step we are making towards Childhood Cancer Awareness, it is the first small step that is going to lead to very big steps, and once our feet are off the ground we are going to RUN!

Friday, January 20, 2012

TGIF


Jillian : *Giggle* HEWWWOOOO
Mallory : (What the heck?)

Gosh I LOVE my kids! Seriously could they be any cuter? I think not!
Mallory loves her bouncy seat, she totally is not down with the whole sharing it thing.


Mallory had a HUGE milestone last night, she only got up 1 time to eat! I knew, knew knew that blood transfusion would do her some good (I mean seriously look at those pink rosey cheeks, I wouldn't blame you if you were tempted to kiss the screen right now) but really 1 time? REALLY? I know that it's going to still be rocky through chemo but hey, I'll take it! One night is a step up from NO nights! On average I get up at least 3 times a night but usually more like 5-6 times.


Although my girly never had much hair, I decided to share some of mine. Not so sure brunette is her color though. I remember watching a skit on Saturday Night Live about baby wigs, I totally think we may need to get her one (ok so more for the giggles than it being in anyways shape or form practical). She rocks being a bald baby, I love her soft smooth round noggin, I can't stop kissing it all the time. I thought it was going to be tougher because my dear little Jillian had a LOT of hair when she was born but nahhhhh both of my girls are SO different, personality and with looks. 



This is baby Jillian (same age as Mallory), so sweet, so kissable. Mallory is way CHUBBIER, she has a sweet smile and she only shares her big smile once in a great while. Mallory's nose is smaller and so are her eyes. Jillian is whimsical, goes with the flow, and is a total ham. Mallory is strong, knows what she wants and won't give up till you figure it out, and is outgoing and loves everyone. I believe that my kids came in the right order, Jillian has the personality to get her through anything, and Mallory has the personality to fight (I am also assuming now this will equal her being a tough kiddo but that's totally fine, we can manage!).


Thursday, January 19, 2012

Whatever it takes

Today was a GOOD day.

Mallory had clinic this morning, low and behold they went to attempt to draw blood from her broviac (they always try before the draw it through her arm) and it WORKED! I only can hope that it continues to work for the rest of treatment. Having to hold my baby down while they draw her blood breaks my heart, this just makes it much easier.

Her labs were within reason for just being done with chemo (on the low scale but thats what chemo does) except her hemoglobin. It was at an 8.2, typically they do transfusions at 8.0 but this being said they were going to wait till Monday to do it, but I told them I wanted to get it done and over with. We could wait till Monday but that would mean Mallory would still feel crummy, she would be lethargic, and be difficult to feed and get to sleep. So now my baby has regained her color, she looks great, and is feeling much better. Each transfusion takes 3 hours once they get the blood up to the floor. It takes an hour or so for them to get the blood up to the floor so it took quiet awhile to get going but once we did we relaxed, Mallory snuggled up to me for 3 hours straight and it felt great.

Another thing I found out was the blood Mallory received today was from a blood donor through West Michigan Blood http://www.miblood.org/

So if you've donated recently and had A+ blood you could have helped her out!!! I am super excited about the blood drive, they are trying to come up with 2 buses for the event so more people can donate!!!

Please make an apt at
https://donate.miblood.org/portal/ the zipcode is 49508 and "goodale" as the sponsor code to sign up so we can get 2 buses going!!!

One thing I did today that I was extremely proud of was I gave my daughter a shot of Neupogen. Now I am not happy that I may have to give my daughter daily injections but if you would have asked me a month ago if I could do it, I would have said no, absolutely not, no way. And today I did it. I know that this will help her body recharge faster, and the more chemo she has the more often she will need these injections. After round 3 they are predicting she will need them everyday so I HAVE to do them. And I can. It's not fun, I don't enjoy it but I am going to do whatever it takes to help my daughter win this fight! Even if that includes injections into her sweet chubby baby thighs on a daily basis. She is strong, she's such a trooper, through all the poking and prodding this little girl is resilient, she still laughs, giggles, and melts your heart.

We now go from appointments every thursday to every Monday and Thursday while she receives the neupogen. So yes I have plans every Monday and Thursday for the next 8 weeks. On top of that we have Scans, more tests, and other appointments for Jillian (2 year check up and her eye doctor apt).

I will be consulting with her pediatrician because they believe she may have torticollis. Mally favors one side of her head and she is developing a slight flat spot on one side of her head, so hopefully they can correct it with physical therapy and some neck exercises to fix the problem. (Just what I need MORE APTS! lol)

I also would like to inform the general population that it is RUDE to park your vehicle so close to someone elses that they themselves CANNOT get into there own car without getting in on the passenger side and have to lift a baby seat over another carseat. So needless to say I am not apologizing for the note I left on your car if that was you.

Hope everyone had a PLEASANT DAY! :-)

To my Dear Friend

A lot has changed since November of 2010. There was a  baby shower was for my friend Jessica, she was a childhood friend that we lost touch with over the years, her family was a HUGE part of my life growing up, I remember so much about them. And let me tell you they are STILL amazing people to this day, although we lost touch we're starting to rebuild our relationships with there family. Through this whole ordeal with Mallory they have been there for us, they have truly just stepped up to the plate and have given our family their hands and hearts. We adore them, Thank You Nancy, Steve, Jess, Ryan and Little Landon. You are little lights to us.

God did something miraculous through Jess's baby shower, he introduced me to one of many Great people. One of them being this adorable cute petite blonde haired girl, Her name is Erika. Let me tell you something about this girl, she is AMAZING. We talked at Jess's shower about our little girls and low and behold her daughter Kylynn is only 9 days younger than our Jillian. Little did I know that this small conversation would escalate into a friendship that has developed so much since then. 

God sent me Erika, he somehow knew I would NEED her. It's all in the big picture. She facebooked messaged me about a play date with girls, and as a mom you are always hesitant about introducing your children to other kids, what if this mom doesn't agree with the way I parent? what if our kids don't get along? what if its awkward? I had only talked to her 1 time before driving up to her house for our first play date. Needless to say it took maybe a whole whooping 4 minutes to get over the nerves of mustering up the guts to start talking, and ever since then we haven't stopped. I spend more time on the phone with her than ANYONE else. We can talk for hours on end.

She relates to me, and I relate to her. We don't judge each other, we don't judge each others parenting, we help each other. We've laughed together, we've cried, we've had a great time. So what we lose our temper with our kids, we let them watch too much TV, we let them run circles around us, so what. They are good kids, no parent is perfect and we have both come to accept it. There is no "book" that teaches you to parent, our girls are totally different and in someways totally the same, and it's fun. We compare our girls, but it's not to put each other down its to celebrate there differences. Because they are different, no 2 children are the same, we accept that, we love our girls. I love Kylynn as if she was my own baby. I could give her tons of hugs and kisses because she is an AMAZING little girl.

Last night I called her while I was on my way to pick up some diet coke (no surprise there) from Family Fare, and I knew she was having a few rough days and wanted to surprise her with a bottle of wine. Her husband just changed shifts and is now on 3rd shift, making it impossible for her to get out of the house, and I'm sure if your a Mom you can image how exhausting it can be stuck in the house with a needy 2 year old for days on end. So we had some wine and we talked.

I finally figured it out, God sent me Erika to restore my faith in him. To restore my faith in religion. A lot of people have said to me that I need faith to get through these difficult times but its hard to keep faith when your child is ill. But it wasn't God or religion that made my baby sick, it was the world, it was something far from God that did this to my baby. I question my faith everyday since this has started. I am far from perfect, I do not go to church, I do not discuss religion on a daily basis, I don't acknowledge God's presence in my life. And life isn't black and white, and there is a reason why we are going through this. Erika made me realize this, that God has a plan for our family. I think this battle with Cancer not only affects my child, it affects us, it affects Jillian, and it affects my friends and family around us.

I have been brought to my knee's, I need to change. I need to have faith, I need to keep faith, I need to believe in faith. We had the path of life decided for us, our baby has Cancer. So now we have to have faith, we need to keep it, and we have to believe in it. That everything in life does in fact happen for a reason. Cancer is not what defines us as a family, it's just the beginning of what amazing things life has planned for us. This happened to our family because God knew we were strong people, that we could make a difference, and although its been a tough road, we are going to make it.

God gave me Erika because he KNEW that I would need her, he knew that she was the right person to help get me through this. That she would be the PERFECT shoulder to lean on, that she would love our family unconditionally, that she was the one person that could make a difference.

So Erika G. just so you know you are amazing, I cannot thank God enough for putting you in our life. For being a great person, for helping us through this, seriously I am a better person because of you. I am excited for the years ahead, I am excited to see what life has in store for us and our girls. Thank You Erika, Thank You.

Wednesday, January 18, 2012

Chemo makes . . .

Miss Mallory feels CRUMMY!!!

I have fought her over and over and over to drink even a small amount of food yesterday. I thought she was getting better at eating more at a time but that is not the case now. She looks pale, doesn't want to sleep, doesn't want to eat, won't let me put her down, and she just doesn't feel great.

Its horrible to watch her be so miserable, we can't give her tylenol (they don't want you masking any fevers whatsoever because it can be a sign of an infection). The Zofran doesn't seem to help.

I just wouldn't be surprised if her hemoglobin tanked and she needs another blood transfusion tomorrow. She has the cutest biggest rosiest cheeks I have ever seen, and now she looks so so very sick and it's just breaking my heart.

She slept a total of 4 hours last night (broken up with a feeding in between), and now she's been sleeping since 7, so hopefully she takes a NICE long nap so that she feels a little bit better.

I am having a hard time trying to decide what is "normal" baby and what is the effects of the chemo. Is she just clingy because that's how she is? Or is it because she doesn't feel good? Does she bird feed because of the cancer? Or is that how she is? Is she teething? There is no book on "infant" cancers, its not like they can TELL you whats wrong.

The great thing though is we are 1/2 way done with treatments (as long as the CT shows the cancer is shrinking) so that means hopefully 8 more weeks left of her feeling crummy. Our next rounds of chemo are 3 day impatient rounds, and they are both in Februaryv (So mark you calenders friends because I'm going to need some visitors to chit chat and keep me occupied, I can only check facebook so many times!). So there is a little light, but can we please fast forward to March already?

I packed away Mallory's 3 month clothes the other day, and I was so sad when I packed away her newborn clothes, but this time I wasn't sad. I was glad, that was just a small sign that we are making it, she is getting through it, growing, and thriving.


(Ok and seriously is this NOT the cutest picture ever! Mallory mid sneeze, it cracks me up!)

Monday, January 16, 2012

Big Girl Mallory!

 Mallory's FIRST Cereal feeding by Spoon!
(We are trying to mix her medications in with the cereal to make it easier on her and on us!)


First bite not so bad!


Not so Good


REALLY NOT GOOD!

TAKE #2
Getting Pumped up!

Pretty ok!


DELICIOUS!!



ALL DONE!






Hello Monday!

So this morning has been interesting in every way possible.

I went and picked up bagels from Panera (YUM) on Sunday and decided that we would have them again for breakfast, so I load up the toaster, grab the butter and cream cheese out of the fridge turn around and my toaster was SMOKING and Flames were shooting up from the bottom. Needless to say I grab the toaster, knocking over 1/2 a can of formula and threw it out into the snow. (One of the nice things about living in Michigan, hahaha). Luckily it didn't damage anything, usually I take time to change Jillian or Mallory's diaper or use this time to go to the bathroom but this morning I was in a Zombie State so I stayed in the kitchen THANK HEAVENS!

Ryan and I's nightly routine is to spend at least a half an hour talking (which we have ALWAYS done, I think making sure you take time out of your day to spend talking with no distractions helps any relationship) before we go our separate ways, this poor boy has been stuck sleeping on the couch for 6 months now. (I had preterm contractions with Mallory had a TERRIBLE time sleeping for months). Last night we were discussing how lucky we were that Mallory got the cancer that she did and they found it as early as they did. The hardest part of it for us is they are leaving a tumor in her, they can say that they've killed all the cancer but it will be so hard for us to accept the fact that she is "cancer" free when she has a supposed dead tumor still inside of her.  Obviously the oncologists know what they are doing but still it will be hard to accept.

I met a beautiful little girl at clinic. She is just sweet as pie, she is turning 3 in March.She has Neuroblastoma Stage 4, the cancer was found only a few weeks before Mallory was diagnosed but this girl is not as lucky as Mallory. She has already had surgery to remove a tumor and lymph nodes, it is in her bones, in her bone marrow and in multiple places. I pray for this little girl, they will be doing heavy doses of chemo, radiation, a stem cell transplant and antibody therapy. They will be inpatient in the hospital for months and months. She holds a special place in my heart and I have only met her 3 times.

Yes we are going through a terrible situation, but there are many children that need help. We have met a few different families that I pray for everyday. That these little kids can be healed and that there family stay strong throughout this nightmare.

Mallory had clinic today, her potassium was back to normal so no signs of any kidney damage from the chemo. But the poor girl has to have blood draws from her arms because her broviac is not working, our nurse said we were going to try to make it through the next 2 rounds without having another surgery. Which means blood draws from now on, and the poor girl has so few usable veins and the ones she does have our blown from being drawn so often.

Mallory is also doing better since we started the prilosec, she is drinking bigger bottles less often for the most part. Today she has not wanted to eat much, but that's partly due to the chemo making her less hungry and her blood counts falling again. Hopefully in a few days she'll be back to normal. We are going to try adding her medication to rice cereal and spoon feeding her (her 1st BIG girl meal!) to see if this helps her keep it down. She's been refusing to take it lately or vomiting it all over us.

All in all its been a pretty good Monday, my Momcation helped me recharge and I'm feeling better.

We also hit 30,000 VIEWS! That's 30,000 people that have read about our baby girl and her fight. 30,000 people that are now aware of Childhood Cancer, 30,000 people that have been thinking about Mallory, 30,000 people that CAN make a difference. Thank you to the 30,000 visitors that have supported us through! Mallory and our family THANK YOU ALL!!!

Sunday, January 15, 2012

I'm Moving On

I have had a complete Mind, Body and Soul recharge, that was the goal. I am going home with a level head, a lighter heart, and an open mind to what the next few months entail of me.

I have had time to think, and I now know what I need to do to make this go as smoothly as possible.
I have decided it's in my best interest to ask for extra help.

Mallory is a tough cookie some day's, she doesn't sleep fantastic, she doesn't eat fantastic, and she knows what she wants and when she wants it. Far from My little Whimsical Child Jillian who has always gone with the flow, done things at her own pace, and has been all around an easy kid (once she got over colic!).

Although Mallory can be difficult, I think its part of what is going to make her strong enough to fight this Cancer. She is strong willed, I can already see this. It is also what I love about her. From Day 1, you could tell this Girl was different. She took all those "What to expect" books and threw them out the window. As a parent I started from scratch, I thought I knew what to expect, how to do everything but Mallory changed the game.

There are many AMAZING things about both girls, I try not to compare them but sometimes its fun. Like Jillian was my tall lanky baby who took a long time to get any baby rolls and she also had lots of hair when she was born, and here comes Mallory so chubby, so petite, she looked like one of those perfect round Gerber babies! My Labors with both girls were SO different, I also had very different pregnancies. And they look a lot alike, although I did not think so at first, but now I see it all the time.

Mallory lights up at the sight of Jillian, there are many days when I'll have both girls snuggled up on my lap and she will just crack up just looking at her sister. It's the deep belly laugh, the one that just melts your heart and you just can see the pure joy she gets already from her Big Sister. I know we have years of bickering, fighting, and crying ahead of us (Trust me I KNOW, I had a Big Sister who was only a year older than me!) but for now I am going to savor the sweet sound of the deep belly laughs, the warm smiles, and the mass amounts of cuddling I get because someday they might get to big for them.

What amazes me the most is that Ryan from the day we found out we were pregnant with Jillian, stepped up to the plate, put his "#1 Dad" shirt on and has just adored these girls. You can tell that they love him so much. Most Men have a hard time with the "baby" age, but not him, he's a pro. We've gone through a lot in the past 6.5 years (ALMOST 7!!!!) but hey thats alright, that's how you know that we're gonna make it. That we are going to spend the rest of our lives together, because we've walked through wind, rain, and fire together and it hasn't torn us apart, it's what makes us stronger.

If you would have told me 7 years ago that I was about to meet the man that I was going to spend the rest of my life with I would have laughed, no way, no how. I was only 17. If you would have told me that he was going to be my best friend, we would buy a house together and have 2 beautiful children, I wouldn't have believed you. If you would have told me my 2nd child would have cancer, I wouldn't have believed you. That we would make it even though things at times have been rocky, I wouldn't have believed you. But we're standing tall, we've got a heavy load on our shoulders and We are STANDING TALL!

We're getting married on July 7th of this year (I know, confusing for a lot of people but hey I haven't looked forward to wedding planning so I procrastinated on making it official, I already call him my hubs). I bought my dress, booked the reception hall and church, found an amazing photographer, lined up a wonderful Pastor who has been apart of Ryan's Family for many years. When we found out that Mallory was sick and that the next few months were going to be rocky, I was ready to once again post pone our wedding. But then I realized something, none of the doilies, flowers, lavish expensive things are important. The only thing that matters to us is that on July 7th I am going to Marry My best Friend, that It doesn't matter what does or doesn't get done when it comes to wedding planning. I am going to be Mrs. Wiersma on July 7th. I am going to officially be his wife.  This is the ONLY important thing there is about that day, so no our wedding probably won't be featured in a bridal magazine, but I can guarantee that it's going to be one of the best days of our life.

So in all the past 7 years have held a lot of ups and downs, but looking at all the "ups" of life, we've had a pretty good run. Although Mallory has cancer, it's been stressful, I wouldn't change it, it's going to make her, us, and Jillian better people because of it. It's humbled us, made us realize that life sometimes isn't perfect, doesn't go according to plan, that we just have to keep moving on.

Saturday, January 14, 2012

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).




Friday, January 13, 2012

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.





Thursday, January 12, 2012

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!!!!

Tuesday, January 10, 2012

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.

Monday, January 9, 2012

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!)



Wednesday, January 4, 2012

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.



Monday, January 2, 2012

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.