Birthday Pictures (by her lovely Mom!)

She's come a long way

(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!)

Life is Good

Mal is going to be 1 in 16 DAYS! WOW WOW WOW!
Seriously, our little sunshine is going to be 1!

She is the most sweet, kind, and laid back little girl I know. Jillian was pretty laid back too, but Mallory takes the cake on sweetness.

Ohhh how blessed are we, we get to have a big big birthday bash for her. We've had over 60 people RSVP for her Birthday Party which is going to turn out to be an amazing event! I just ordered 250 Cards to put on balloons, we are going to rent a helium tank, and put together a TON of balloons for the party to send out for our big balloon launch!

If you can't make it to the party and want to be a part of the big launch print off these and attach them to balloons and email a picture of them to us! (Ashley Wiersma <---- on facebook).

(2)

In the next few days we spent majority of the time snuggling our sweet ray of sunshine. The difference between a child an adult having surgery is incredible, Mal bounced back the very next day. Although when she woke up from surgery she lost her little baby cry, we also gained a very very big brave little girl. It took days for the swelling to go down, she gained almost a whole pound from the surgery alone. We received news that day that Mallory had NO CANCER IN HER BONES! One little piece of the puzzle, we had to wait on the pathology from the tumor, and also the MIBG, and bone marrow to know exactly what we were dealing with. After much reading and research, we knew what we wanted, no neuroblastoma in the bone marrow or bones, we wanted favorable histology, and no m-nyc amplification for the best possible news. The waiting game was the worst.

They prepared us for going home by showing us how to change the patch on her chest (which we had to do every 4 days until she was 6 months old), flush her lines with VCH every morning, and she would be started on many different medications. At the time I felt a huge pain of disapointment at the fact that they could not remove the other tumor. I know that the surgery would have put her at risk, that she would be on medication for the rest of her life, but there are very few cases of double adrenal tumors. And we just wanted our daughter to live, we would deal with whatever life gave us but knowing that they were leaving a significant sized tumor in her little stomach was huge to us, but you have to learn that you are there to love, and they are there to take care of everything that involves her health.

She received her first blood transfusion the day after surgery, her hemoglobin was quiet low, although she did not lose a whole ton of blood during her surgery even a little bit for a child weighing 11lbs is a lot. I'll never forget the little syringe of blood that they used, this was the first of many transfusions she would have.

We had a hard time through a lot of this with our friends and family, we tried to be as upbeat as possible. And yet when someone would walk through the door there hearts would sink, in the beginning it was the nurses that kept us going. They hugged us when we cried, they laughed with us, they've seen the best of the best and the worst of the worst. It was tough and at one point I came right out and said it's ok to cry, it's ok to laugh, it's tough for us to even begin to understand. This is our daughter and without everyone's support I honestly don't think we would have made it out as a whole.

We spent 8 days there, the longest 8 days of my life, Ryan stayed with us the entire time. We had our final meeting before we were discharged because I didn't want to go home without answers. I couldn't bear the thought of having a sick child, of having to take her home without knowing what they were going to do for her. We met with an oncologist (which I won't say her name but trust me I still hate the lady), our social worker, our discharge nurse, and two of our other nurses. We were told that the preliminary pathology report was showing no sign of n-myc amplification and favorable histology, this was not a for sure answer but from what they could see it was looking in our favor. I still didn't want to bring her home, honestly you had us a big pile of SHIT and expect us to just "deal with it", the oncologist said to me "If you can't take care of her, I'm sure we can find someone that can". At that point I wanted to reach across the table and punch that lady in her face. I remember saying to our social worked "DO YOU HAVE A KID WITH CANCER? KIDS DIE FROM CANCER" and he in his sunshine and lollipops attitude says to me "We don't like to think that way". Well of course you don't, it's not your kid.


We got to go home for 1 day after that, I had a bad taste in my mouth for some of the people we had worked with but when they gave us our Oncologist I was pleased. We have Dr. Axtell, which some of the people I've talked to don't care for him, but we LOVE him. I told him straight up that we didn't want the "whole package of reports", when they got information we wanted it good, bad and ugly.. He is a no bullshit kind of guy, he is incredibly smart, and from the 1st time we met him we had nothing but respect for him.

We spent our first day at home, feeling like new parents. New parents with no "manual" for what to expect. Our expectations where no longer there, we just wanted her to live.

The Mallory Story (Part 1)

We had our perfect little wedding last week August 25th on Saturday.

From each detail of the wedding, to the ceremony, to the reception, it couldn't have been any better.

This past year had its good moments, its bad ones, and now we're onto the amazing ones.

 

I think back to last year, I was around 38 anxious weeks pregnant with our 2nd beautiful daughter. I had a rough August with being pregnant, between pre-term contractions and absolutely 0 sleep, I was so ready! It amazes me how much life changed the day she was born. She was such a sweet little girl, with big chubby cheeks, the smallest newborn whimper, and everything couldn't have gone more perfect with my labor and delivery.   She was a perfect 7lbs, 10 ounces and 20.5 inches long! And in my opinion she looked so different from her big sis. I can't believe in a little over 2 weeks we're going to be celebrating this beautiful little girl's Birthday. Little did we know that she would have one hell of a 1st year.

When she was 2 weeks old, I fell asleep on the couch she started to whimper and I went to nurse her. I then said to Ryan "Please take Mal, somethings not right". I put my hand on my stomach and experienced some of the worst pain of my life, so bad that after 3 minutes Ryan called an ambulance. When I arrived at the hospital they did an ultrasound and found that I had gallstones and pancreatitis on top of it. I spent the next 3 days on antibiotics and had surgery to remove my gallbladder. We stayed with my mom for a week following surgery.

Mal and I hit a big bump in the road when it came to nursing. She would wake up every hour or less to nurse, it seemed like she was never going to eat more. Believing it was my supply that caused this issue I went to her doctors office and was prescribed a medication to up my milk supply but instead I just walked around with way too much and Mal was still taking the same. After 6 weeks we then went in again and she was prescribed Zantac, thinking that possible it was because she had reflux (although she never puked, I had thought it may be just a bit of an upset tummy since her big sis suffered from extreme colic as a baby). After 7 weeks of fighting it, I threw in the towel on nursing. We went in for her 8 week checkup, at this point she was taking no more than an ounce of formula at a time, which was irritating but manageable. Her doctor then did her 2 month well child visit, checked her tummy, walked out, came back in and decided to do another check. He felt like there might be an enlarged kidney or spleen. I was told that we would be setting up an ultrasound at Helen Devos to check to see if anything was going on.She received her 2 month vaccines and we were on our way. I always call Ryan on our way home from these appointments, to let him know all the cute little statistics and such. For Mal eating so frequently even though it was a little bit at a time she was gaining weight like a normal child. I couldn't get the ultrasound out of my head.

When we got home from the doctors office Mallory started crying, and crying, and crying. Something I had never experienced with Jillian, usually she just took them like a champion, but then the little red flags started going up even higher. I had gotten a call from Helen Devos about setting up the ultrasound, we had 2 options to go in the next day at 7:30am or to wait for 2 weeks. Thinking that we didn't want the weight of this to hang over us for 2 weeks we would just opt for the next day apt. That night we did a google search about "enlarged spleen or kidneys" well the first thing that pops up is "CANCER". We stopped searching right away, we couldn't bear the thought. That night I remember balling and praying to God that our daughter would not have cancer. I snuggled Mallory all night long, I cried, and cried and cried.

The next morning Ryan took off of work so that he could be there for the ultrasound. We entered the room and the lady that was doing it was very sweet. She told us that they would call us with the results in a week or so. We had small talk for a little while, she started scanning Mal's left side and STOPPED TALKING, she got up from her chair and told us she had to have the radiologist look at these a minute. My heart started racing, I felt sick to my stomach and we were told nothing at all. She came back in the room and told us that she would be scanning her right side next, still never saying a word to us, she then left the room again and came back with the radiologist for him to scan some more. We were then lead to a different room and told to wait. Knowing that we would not be recieving any news in the next week, knowing that it was entirely possible that we had the kid with cancer was more than we could bear. We sat there for what seemed like an eternity when we were told Mallory's pediatrician was on the phone and had to talk to us.

I remember just breaking down when he said "They found 2 large masses on Mallory, we're going to figure this out, we'll be praying." My heart sank, it shattered, it fell to pieces. We had no idea if it was cancer, but there were masses, what else could it be? We were introduced to a slew of nurses and an oncologist. They had given us contrast to give to her so we could get a CT in, I held her down as they attempted to put an IV in, which failed to work, I just remember the blood from that alone. How could I take anymore. We were escorted to the 9th floor which is the Hemotology / Oncology inpatient floor of the hospital. By now we had assumed she had cancer, no one could say for sure at this point. Mallory then had a CT scan done, a urine check, and an echocardiogram. We were introduced to Dr. Kurt a pediatric oncologist and Dr. DeMarco who was working with us the whole day. Our families were sitting with us when they broke the news. Mallory had a tumor the size of a baseball on her left adrenal gland and a slightly smaller one on her right side. They were pretty confidant that it was Neuroblastoma because of where the tumors were located and the fact that her catacholomine levels were very elevated. We had never heard of Neuroblastoma. I remember skimming through a chapter of "What to expect the 1st year" and in there it states not to worry about childhood cancer, it is EXTREMELY RARE. The day she was diagnosed all bets were out the window that we no longer knew what to expect. All of our hopes and dreams of our perfect family of 4 just weren't going to happen, our winter of baking cookies, drinking hot chocolate, and doing anything normal just disapeered.

That was the 1st time I'd ever seen Ryan cry. We both felt completely helpless.

The next day we were bombarded with different doctors. One of them is one of the top leading Neuroblastoma specialists in the field, at the time we had not known this, but she had papers for us to sign so that they could use any left over tumor tissue, extra blood, or urine to use for research. Ryan and I never 2nd guessed ourselves and signed them right away. If there was any hope that someday they'll find a cure we would do anything we could. We also met with an endocrinologist to go over the removal of both of Mal's adrenal glands and tumors, we were told that she would be placed on steroids for the rest of her life. Everytime she would get sick she would have to take more, every time she gained weight they'd have to adjust her meds. At this point we would do anything just to give us time with her, even if it meant a lifelong medication. We then were told that Mallory would have to have another ultrasound because they feared that her right adrenal tumor was connected to her Inferior Vena Cava. After the ultrasound we were told that in fact it was, that they would not removed this tumor at present time because it was a) very risky b) they believed with chemotherapy they could neuter the cancer where it sits not leaving her adrenal insufficient meaning she would not be on any sort of medication. The adrenal gland would grow to take the place of the one they were removing. She would still be placed on steroids so her body would not go into shock from the removal, but then she would be gradually weaned off from them in a few days. Ryan signed papers that allowed them to give her a blood transfusion if necessary.  This was a huge thing for both of us, a blood transfusion? She recieved her MIBG injection

We then met with Mallory's surgeon who had given us more explanations to what he would be doing. We had hoped and hoped that they could do a laproscopic surgery verses an open abdominal. But because of her sizes and the fact that the tumor was so large that would not be possible. He had hoped that because the tumor was so large that it did not begin to infuse to her stomach and from what the CT had showed it looked like it was just pressing into it. They would also be putting in her central line Broviac, honestly this scared the hell out of me. They explained it to us, we didn't have another option because her size she could not receive a port, and this would prevent her from many pokes. She would also have a bone scan and a bone marrow biopsy to rule out any more cancer spread.

I remember reading Ryan's prayers 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.

To this day, my heart still hurts when I read this.

The next day was the big surgery December 1st, we were lead into a room with Mallory's anesthesiologist, she was a warm hearted person and as the tears floated down our faces she too began to cry. She told us that "I'll be the doctor when we go back, but I'm a mom too!", quiet frankly this was something we will never forget. The love from a person we had just met, that she was taking care of our little baby. They then began to take her back, I held on tight, we all kissed her, and kissed and kissed her. The prayers from around the world started flooding in, for our sweet girl. They were putting in several IV lines in case of her losing too much blood, the thought of never seeing my baby again was heart wrenching, it was the worst feeling in the world. Knowing that she might die was devastating. The took her back at 2:15, everything went flawlessly, the broviac placement and the tumor and adrenal resection. It was not infused in her stomach and when he removed it there was little spillage of tumor cells, a lot of the tumor appeared to be already dying although they could not confirm anything right away. They were able to do the bone scan but not the bone marrow, that would be done when they did her MIBG scan.

She looked nothing like our sweet little peanut, she was swollen, she no longer had her little baby newborn cry. She wallowed in pain, her stomach was covered in bandages and we felt the stab as well. Watching our daughter go through immense hell, and there was nothing we could do about it. We just had to sit and wait.

(to be continued)


I have never fully written out the full story of Mallory's diagnosis, treatment, and remission. With this month being Childhood Cancer Awareness Month and Mallory's Birthday I thought it would be an appropriate time, I plan to elaborate more and more but for now is my rough sketch.

Some more Wedding Pictures :-)