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Marissa Jean Monroe - Born on July 10, 2005 - Angel wings on June 13, 2008
big sister: Makenzie
little brother: Mason
On November 27, 2006 Marissa was diagnosed with stage 4 high risk neuroblastoma. Marissa's only symptom was a black eye that appeared out of the blue & wouldn't go away.
Marissa relapsed on October 19, 2007 with a spot on the MIBG scan on her skull above her left ear.
Neuroblastoma is a form of cancer that occurs in infants and young children. It is rarely found in children older than 10 years. The cells of this cancer usually resemble very primitive developing nerve cells found in an embryo or fetus. (The term neuro indicates "nerves," while blastoma refers to a cancer that affects immature or developing cells).
After several tests, two tumors were found in Marissa. One in her abdomen and one next to her left eye. Cancer has also spread in to her bone marrow. A biopsy of the tumor was sent to Los Angeles and the results are as follows:
Dr. Shimada's evaluation of the tumor biopsy: HIGH RISK
MYCN GENE: amplified / unfavorable
DNA PLOIDY: favorable
Shimada Classification: unfavorable
7 rounds of high dose chemo- Bronson Hospital
stem cell rescue/collection (10 million stem cells collected)- U of M
remove tumor in abdomen 3/26/2007 - U of M
3F8 Antibody therapy-Sloan Kettering NYC (so far, 5 rounds of 3f8 and HAMA)
a second stem cell collection (7 million stem cells collected)-Sloan Kettering, NYC
14 rounds of radiation, 2 times/day with sedation-Sloan Kettering, NYC
6 rounds of retinoic acid (Accutane), 2 weeks on, 2 weeks off- home (5 rounds completed)
8 rounds of lower dose chemo (Irinotecan and oral temador) NYC & Kalamazoo
12 rounds of radiation to her entire skull
Many scans and bone marrow biopsies
Marissa relapsed on October 19, 2007 with 3 spots on her skull. This cleared after full skull radiation and 8 rounds of Irinotecan/Temador. It took 6 months for the spots on her skull to clear. On April 10, 2008 after her MIBG scan we found that Marissa now had a new spot of NB in the marrow on her spine between L3-L5. The NB is also in her bone marrow, but is microscopic. There is question if the NB is in her spinal fluid. On April 21, 2008 Marissa started more high dose chemo. On June 5, 2008 we were told that the cancer had spread everywhere in her body and there were no more treatment options. Marissa was sent home from MSKCC on hospice. Marissa became one of God's Angel's on Friday, June 13, 2008. She is forever loved and missed. Marissa was laid to rest on Tuesday, June 17, 2008.
www.lunchforlife.org Giving tree code 24348. Donate in Marissa's honor, proceeds will benefit new treatments.
****People have been asking what they can do to help us. We have a savings account set up in Marissa's name at FNB in Three Rivers, Centreville, Mendon &Constantine. Donations can be made under "Marissa Monroe". All of the money donated will help with travel expenses & medical expenses. Another idea would be to purchase Visa gift cards & mail them to us. The gift cards can be used anywhere that Visa is accepted. Thank you all for your help. We couldn't get through this without all of the amazing support that you have provided.
I don't think that I've ever really talked about the day Marissa was diagnosed and the few days after, so here's part of it:
Today marks 8 years since Marissa was diagnosed with Neuroblastoma. It's so hard to believe. One doctor's appointment changed everything...one mysterious black eye...one sweet, innocent 16 month old baby girl. This year the 27th falls on Thanksgiving Day. I remember Thanksgiving day in 2006. Little did I know that it would be our last "normal" Thanksgiving Day. I remember Marissa running around trying to keep up with her big sister and her cousins. I also remember having a conversation with my family about her mysterious black eye. And how Randy took her to the doctor earlier that week and they said that it was nothing to worry about, she must have bumped it on something and it appeared to be healing. We knew they were wrong. We knew that she didn't bump her eye on anything and it most certainly wasn't healing. Parental instinct? Our persistence drove us to the doctor's the following Monday. I remember Makenzie, Marissa and I playing in the doctor's office. Marissa's hair was in a little fountain ponytail on top of her head like it so often was. I remember her smell....kissing her head full of hair. We read books. The doctor came in and did a thorough exam on Marissa. Looking at her left eye, pushing on her stomach, pushing more and more on her stomach, pushing deeper into her stomach, leaving the room, coming back in...telling me that he thinks it might be Neuro...something? I couldn't repeat the complicated name, besides...it wasn't, right???? Not our child. She was healthy. The doctor left the room to call the hospital to set up an ultra sound. The girls and I waited, drawing pictures. Marissa colored a picture with a purple crayon (go figure, her favorite color) and I traced her tiny hand on the backside of the picture and made her hand into a turkey. The picture is now laminated and in our hope chest. I'll never forget that. The doctor came back in and told us to head to the hospital...still trying to sound positive. He knew...he knew, he just wanted to make sure that I could get the girls and I to the hospital safely. I stopped at Kmart to pick up extra diapers and an umbrella stroller. I hadn't planned for a day at the hospital with a 16 month old and a 4 year old. I called Randy at work to let him know what was going on. He asked me if he should meet me at the hospital and me being me told him "no, I'm sure it's nothing serious, we'll manage". Then I changed my mind and said "well maybe you should, I might need the help". I was on the phone with my sister on the way to the hospital, crying because I began to give it more thought..and started thinking the worst.
The girls and I arrived at the hospital, parked and went to the ultra sound. They got us in immediately. The tech started the ultra sound and found "something". She left and got the pediatric oncology doctor. Somewhere in between her leaving and getting back with the doctor Randy showed up. Kenzie was doing such a good job of entertaining herself in that room and Marissa was being so brave. When the doctor told me there was a mass I looked at her, with tears in my eyes and said "but it can still be nothing, right?" She put her hand on top of mine and didn't say a word....I knew that wasn't good and I lost it at that point. We were whisked up to an inpatient room quickly. Marissa was NPO (no food, no breastfeeding, etc) until further notice. I had to hold her down so that they could put an IV in her hand. They had to do a urine catch and it's not fun when it's a child that isn't potty trained, in fact, it's almost barbaric. They attach this very sticky bag (for a lack of a better description) to her private area. When they take it off...well let's just say I wanted to kill someone. Marissa learned quickly to pee in a hat. Marissa's main comfort was to breastfeed....something that I couldn't do for her at that point. She had to remain NPO just in case there was an opening for the bone scan and ct scan...she would have to be sedated for those. As the night went on, I held Marissa, walking and bouncing with her. For the first time, she had to fall asleep without me nursing her or Randy giving her a bottle. Thank goodness she loved her silkies and paci's. Makenzie went home with her cousins that night...the very first sleep over she'd ever had. We had never been away from our kids overnight...ever. Makenzie was still so little too, the age that Mason is now. She had to grow up so quickly. Marissa finally had scans the next morning and then it got worse.....bone marrow biopsies and aspirates....4 of them, 2 in front and 2 in back. The first of many scars. It seemed surreal. Every time they told us more about her cancer, it got worse and worse. 30%, that was the chance of survival...and that was after all of the terrible treatment, scans, surgeries, antibodies, etc that she would have to go through. Then we found out that if a relapse occurs that 30% chance goes down to a 5% chance. Not to mention the harmful effects of treatment and secondary cancers that some children get from the treatment.
And so it went....Marissa handled everything amazingly well. She was always so happy. The sickest that she was through treatment was when she got the stomach flu. The decisions that we have to make for our children as parents are so difficult. Marissa liked the hospital for the most part, Kenzie too. They were spoiled rotten by the staff and loved the toy room. Marissa would run through the halls of the hospital at Bronson with us chasing after her with her IV pole. She always had to have long "tubies" so she could run. I'm not sure how her broviac managed to stay in! Bath time changed. She couldn't submerge in water fully for almost a year, not until her broviac came out and her port went in. Dressing changes were torture. At first Randy and I did them together, then I became good at doing them myself. Trips back and forth to the hospital. A fever in the middle of the night meant that all 4 of us loaded up and headed to the hospital. Makenzie missed most of her preschool year and most of her kindergarten year at school and gymnastics....but we were always together with the exception of the night of Marissa's diagnosis, the 2 nights of Marissa's stem cell collection at UofM (I remember how broken my heart was when Kenzie called us homesick for us, wanting us...and we couldn't be there for her. Her world was turned upside down too.), the couple of nights when Marissa had to have her tumor removed and we were in ICU and then another night when Kenzie just needed a break from the hospital. I can't say enough good about our hospital for letting us all stay in Marissa's room together. We were together and that was so important. Especially now, after losing Rissy. After about 6 months of treatment we started traveling to NYC for treatment. The best Neuroblastoma hospital and team in the world. Being inpatient there sucked...bad! But the pediatric day hospital was great. The Ronald McDonald House was great. Again, we were together. I think we spent about 7 months in NYC, that was during Kenzie's kindergarten year. At 5 years old she had gone through and seen more than most people. A little small town girl could get us around NYC. The girls loved it there and so did we. Again we were together and the girls got royal treatment.
I just want to say that I'm thankful today. I'm thankful for my children. I'm thankful for my husband. He was my rock and although we may drive each other crazy at times, he's still my rock and he would go to great lengths to protect his family. I'm thankful for all of the love and support that so many of you have shown us through the years. I'm thankful that I'm Marissa's mommy..and Kenzie and Mason's :) I would do it all over again in a heartbeat just to be their mom, even if it's just for a minute. So not too many of you probably know this, but Randy had a vasectomy after Marissa was born. He had a reversal to have Mason, then another vasectomy after Mason...for me, for us, for Kenzie and Rissy. I really struggled with having another baby. Marissa always wanted me to have another baby....she loved babies. I just wish that she was here with us physically to enjoy her siblings.
I know I'm rambling on, so I'll stop. I've had coffee tonight/this morning, so I could probably keep going. The memories are just flowing right now.
I hope that everyone has a good Thanksgiving. We love you and miss you Rissy Roo.