Sunday, September 23, 2012

BALLOONS BALLOONS BALLOONS!

Let us know where they LANDED! :-)  They were let off from Wayland, MI!
-Leave a Comment Below! (or email us at sweetbabymallory@gmail.com)

1. West Farmington, Ohio

Here is a map of the reported balloon findings!
Google Maps (1 balloon recovered so far).


















Saturday, September 22, 2012

Dear Mallory,





 

Dear Sweet Baby Mallory,

Last year at this time we were anxiously awaiting your arrival. Tonight I've been in and out of tears, so thankful that this year is done for you little girl. It was tough, you fought like hell, something no kid should ever have to do.. You mean the world to us. Look at what you've accomplished not only kicking cancers butt but you made an impact on so MANY MANY people and you're only almost 1 (I can't say 1 because it's not "Official" till 4:10 tomorrow!)! You amaze us each and everyday with your spunk, laid back attitude and perseverance. I look at your scars, I look at everything you've done and you are our hero little lady. We are looking forward to this year, to watching you hit every single milestone, to helping you through everything. There are reminders from people that someday you'll be a teenager and I say "BRING IT" because at more than one point this year we didn't know if you'd even hit 1 (but please take your time getting there, we want you to "just be a kid" for as long as possible). We want to be there to watch you succeed, to help you through failures, when you're happy, and when you're sad. When you fall we'll be there to catch you. We don't care as long as we get to keep you forever and ever. You've taught us things that we never knew we'd have to do. Who would have thought I would have been strong enough to keep my head up when you were sitting there snuggling me and you would get so ill, when we would have to give you shots everyday at home, when we would run to the hospital at a moments notice because we wanted the very best for you. We just want the best for you because you deserve it. The love we have for you is in no way able to be expressed because our love is bigger than we even know. The day we met you my heart got bigger, your little tuft of blonde hair, those adorable big chubby cheeks, you had such a sweet charm about you from day 1, and you remind us everyday (That sweet charm is going to be tough to say "no" to). From Day 1, I couldn't imagine my life without you, and I never want to.

HAPPY BIRTHDAY DEAR SWEET BABY MALLORY!
And to many many many more.

Love Forever & Always, and to the moon and back.
-Mommy & Daddy.

Thank you Lord for allowing me to have a big enough heart to love not only her, but Jillian and Ryan also. Thank you for showing me even through the bad times that this family is a rock, that no matter what we will continue on with life with a new beautiful perspective, that sometimes you have to fall to learn how to walk. Thank you Lord for blessing us with this beautiful baby girl, a little girl that we love with all of our hearts. Thank You for watching over her and keeping her safe, we pray Lord that this will be the first of many many birthdays for her. We put all our faith in you to carry us through life no matter the obstacle, no matter the mountains we have to climb.

Thursday, September 20, 2012

ALK GENE IS

NEGATIVE!!!!!!!!

We've only been waiting 8 months for this news and we got the news we wanted.

BALLOON LAUNCH!


This Sunday our Peanut is TURNING ONE!
WOW! Where did time go?
Well the first 8 months of her life went really slow, the rest of it, not so much.

We will be having a MASSIVE 1st Birthday Party for her!
You are all invited to join from across the world
We would love to see pictures if anyone does a balloon launch on the 23rd, make sure you take pictures! Even a <3 Sweet Baby Mallory sign would rock!

Please Let Us know where Our Balloons Landed, leave a message so we know!

You can email it to :  sweetbabymallory@gmail.com
MUCH MUCH LOVE FROM EVERYONE!! WE CAN'T THANK YOU ENOUGH!

Friday, September 14, 2012

After the intial diagnosis.

We started her first round of chemotherapy on the 21st of December. This weighed heavily on our hearts because Christmas was just days away.

We had time before chemo to go Christmas shopping, something that we had totally put on the back burner. We were very fortunate to receive many donations so the girls could have an amazing day. That month was tough for us, emotionally & financially.

Ryan was going to switch jobs, he had a job offer that payed very well, the day before she was diagnosed he accepted their offer and put his two weeks in. The job he was at he loved, he had been there for a long time. There were a few hitches when Mallory was diagnosed, one huge one was the benefits were rocky and he would have no vacation time, something when you have a sick child YOU NEED. The place he was and is still working at came back and offered him a better position and exceeded our expectations, something we always be forever grateful for. A few of his coworkers donated vacation time to him as well, seeing as it was the end of the year we had already used up all of his. Looking back on it, we are entirely blessed that he works with good hearted people and we are glad they made it work with us.

We bounced our Mortgage on top of everything that month. When you end up spending 8 days in the hospital unknowingly you need EVERYTHING you can possibly thing of, between food & clothes, and driving back and forth, and down to socks and underwear, our normal income wasn't cutting it. Thanks to everyone that helped us get back on our feet quickly, without you we would probably still be digging out. 

Our first experience with chemo was rocky, it took 7 hours to actually get a room. Which looking back on it now was not that big of a deal but at the time, I was completely irritated, annoyed, and upset. I just wanted to start the process of getting her better, a few hours didn't matter but it was still frustrating.

Mallory received 2 chemotherapy drugs over 3 days.

During these days she was also put on IV fluids that ran non stop to prevent any chemotherapy from sitting on her bladder and kidneys for too long.

At the hospital they give Zofran every 6 hours to prevent nausea which is a common problem with these medications.  She also was on constant heart monitors and oxygen as well to make sure she was holding good. We never had a probably with any of these through this round.

Carboplatin: which did not effect her much while she was receiving it.
Etoposide: this chemo PISSED Mallory off, the minute it would hit her system she would be inconsolable, after speaking with some of the nurses about this they informed me that some kids feel like there noses are burning. It also made her smell like metal (one of the weird side effects).

Luckily we figured out quickly the Etoposide was the one that was going to effect her the most so every time she had it we would give her benadryl before to help calm down what she was bothered by.

She had another blood transfusion before we left, the 1st of many chemotherapy induced ones to come.

Honestly we had NO idea of what to expect when we got home, we just knew we would be on house arrest with it being Christmas that was REALLY tough. Having to deliver the bad news of our absence of presence from seeing our family. We really didn't know what to do so we did what we thought was best, the less exposure to people the less likely she'd get ill. It was one of the most AWFUL things we've ever had to do, we missed it, we really did.

All things considered, we skyped with Ryan's family, it wasn't the same but at least we got to see them!!

Christmas Day for us was wonderful, Mallory was feeling a little crummy but not too bad yet. So we seriously opened gifts for 12 hours straight. We let Jillian lead us, if she wanted to open a toy and play with it then we'd let her, then an hour later she'd pick another one, so on and so forth. We had an amazing dinner donated to us that was so so great, I would haven't been able to pull off doing that myself at all. Jillian and I ran to my moms house to pick up the gifts for my girls and drop off the gifts we had picked up for them. So it wasn't the Christmas we had in mind but it sure was nice to spend all day enjoying out little punkies.

The worst part about this Christmas was it wasn't "normal" for us, it hurt, this Christmas hurt us more than anything. To not be able to spend some of that time with our parents, brothers, and sister and all of there amazing kids was the worst. This Christmas will be much better. I had looked forward to baking cookies, bringing Jillian out into the snow, and none of that stuff was accomplished.



Saturday, September 8, 2012

(3) The Parts of Offical Diagnosis.

We waited and waited and waited to hear the news that could change the rest of her life. Mal had to be sedated again to have her bone marrow biopsy and MIBG scan.

The MIBG Scan, the bone marrow, and the pathology report from the tumor resection would give us all the information that we need to see what the next step for Mallory was.


The sad thing is we've become pro's at scans, blood draws, and sedation's. The first time is always the hardest after that you have to learn to stay strong so that your child can stay strong.


The things they were looking for and we had our fingers crossed that would come back in our favor were:




Staging
We knew already that she would be not a stage 1 because she had 2 tumors. We had assumed that she would be placed in the Stage 4 Category because of the fact that her cancer moved past the mid line of her body. They had already told us that Stage 4S would most likely not be an option for Mal since she had 2 major organs effected by Neuroblastoma. We knew whatever this came back as wasn't the end of the world, since there were so many factors that go into prognosis and diagnosis.

  • Stage 1: Localized tumor confined to the area of origin.
  • Stage 2A: Unilateral tumor with incomplete gross resection; identifiable ipsilateral and contralateral lymph node negative for tumor.
  • Stage 2B: Unilateral tumor with complete or incomplete gross resection; with ipsilateral lymph node positive for tumor; identifiable contralateral lymph node negative for tumor.
  • Stage 3: Tumor infiltrating across midline with or without regional lymph node involvement; or unilateral tumor with contralateral lymph node involvement; or midline tumor with bilateral lymph node involvement.
  • Stage 4: Dissemination of tumor to distant lymph nodes, bone marrow, bone, liver, or other organs except as defined by Stage 4S.
  • Stage 4S: Age <1 year old with localized primary tumor as defined in Stage 1 or 2, with dissemination limited to liver, skin, or bone marrow (less than 10 percent of nucleated bone marrow cells are tumors).
Histology

Tumor histology is based on how the neuroblastoma cells look under the microscope. Tumors that contain more normal-looking cells and tissues tend to have a better prognosis and are said to have a favorable histology. Tumors whose cells and tissues look more abnormal under a microscope tend to have a poorer prognosis and are labeled as having an unfavorable histology.

We wanted this to come back as FAVORABLE



DNA ploidy

The amount of DNA in each cell, known as ploidy, can be measured by special lab techniques, such as flow cytometry or imaging cytometry. Neuroblastoma cells with about the same amount of DNA as normal cells are classified as diploid. Cells with increased amounts of DNA are termed hyperdiploid.

In infants, hyperdiploid cells tend to be associated with earlier stages of disease, respond better to chemotherapy, and usually predict a more favorable prognosis (outcome) than diploid cells.


We wanted this to come back as hyperdiploid cells.



MYCN gene amplifications


this one SCARED the shit out of us, we prayed and prayed and prayed this would come back NOT amplified. When a child has cancer cells it means that cells are dividing, this can mean only 3 cells or thousands of cells. Which is where the M-YCN amplification lies when the cells are dividing in mass amounts. To have a better diagnosis your chances of survival are higher obviously with low - no amplification of the cells.

After reading many many stories of other children, a lot of the stories we were seeing involved children passing due to that amplification of cells.
So we prayer and prayed and prayed that she would not have MYCN.


This is the "Risk" Categories

Low risk

  • All children who are Stage 1
  • Any child who is Stage 2A or 2B and younger than age 1
  • Any child who is Stage 2A or 2B, older than age 1, whose cancer has no extra copies of the MYCN gene
  • Any child who is Stage 2A or 2B, older than age 1, whose cancer has extra copies of the MYCN gene but has a favorable histology (appearance under the microscope)
  • Any child who is Stage 4S (younger than age 1), whose cancer has favorable histology, is hyperdiploid (excess DNA) and has no extra copies of the MYCN gene

Intermediate risk

  • Any child who is Stage 3, younger than age 1, whose cancer has no extra copies of the MYCN gene
  • Any child who is Stage 3, older than age 1, whose cancer has no extra copies of the MYCN gene and has favorable histology (appearance under the microscope)
  • Any child who is Stage 4, younger than age 1, whose cancer has no extra copies of the MYCN gene
  • Any child who is Stage 4S (younger than age 1), whose cancer has no extra copies of the MYCN gene and has normal DNA ploidy (number of chromosomes) and/or has unfavorable histology

High risk

  • Any child who is Stage 2A or 2B, older than age 1, whose cancer has extra copies of the MYCN gene and unfavorable histology (appearance under the microscope)
  • Any child who is Stage 3, younger than age 1, whose cancer has extra copies of the MYCN gene
  • Any child who is Stage 3, older than age 1, whose cancer has no extra copies of the MYCN gene but has unfavorable histology
  • Any child who is Stage 3, older than age 1, whose cancer has extra copies of the MYCN gene
  • Any child who is Stage 4, younger than age 1, whose cancer has extra copies of the MYCN gene
  • Any child who is Stage 4 and older than age 1
  • Any child who is Stage 4S (younger than age 1), whose cancer has extra copies of the MYCN gene

We had NO idea what Mallory would be in the "risk" categories, this determine her treatment more than anything. She would most likely not be Low Risk because her 2nd tumor would not be able to be removed. She would have to have chemotherapy, there was no way around this. We were looking at Intermediate Risk or High. We had hope that she would be in the Intermediate Category for many different factors but the biggest is the cure rate is MUCH MUCH higher.

Prognosis:


Children in the low risk category have a five-year survival rate between 90 to 95 percent.
Children in the intermediate risk category have a survival rate of 80 to 90 percent.
Children in the high risk group has a survival rate of 20 to 40 percent.

In 1960 the prognosis for children with neuroblastoma was ZERO!


Hopefully the world of medicine will eventually make this a 100%!


We received a piece of the puzzle on December 12th that the MIBG showed that Mallory's Neuroblastoma had NOT spread to any other organs, the only spot that was showing up was the tumor that we knew she already had. The MIBG scan lights up any active Neuroblastoma cells.


on the 13th we got the news that Mallory did NOT have any neuroblastoma in her bone marrow! Another great piece of the puzzle!




Friday December 16th Ryan Wrote this:


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

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


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


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


Mallory had NO MYNC AMPLIFICATION AND FAVORABLE HISTOLOGY!  PRAISE THE LORD!  

Her official Diagnosis was Stage 2B Neuroblastoma, Intermediate Risk.The stage 2b was very hard for them to place, the chances of having a child so young with a tumor that was on opposite sides of the body is very RARE, let alone having double adrenal tumors. They have only ever had a few cases of this.

We checked everything off
No Cancer in the bones
No Cancer in the bone marrow

No MYNC amplification
Favorable Histology

Hyperdiploid cells


I remember crying and crying and crying. And holding my sweet dear love. We would start chemo the week before Christmas. We didn't know what to expect, it wasn't going to be great, but to get her to the point where she needed to be we would have to do this. We would have to pump posion into our little girls body so that she could LIVE.
So that she had a chance at life.

Her prognosis was 90% cure rate. What a glorious glorious number to hear. No one should ever be given a number to determine what chance your child has at life.




(Mal's 1st hair cut. People looked at us like we were NUTS when we were getting her hair cut off, but she would lose it regardless so we thought we'd at least have a keepsake!)