Emma's Fight

$26,155 of $30,000 goal

Raised by 335 people in 30 months
Cheryl Rarog
on behalf of Cheryl Rarog
At the age of 12 years old, Emma Ostrowski was diagnosed with Gastrointestinal Stromal Tumor (G.I.S.T.),  a rare cancer in children. This cancer is found in the stomach.  The only reason this was found was because Emma was in severe pain from one of the tumors that had started bleeding into her abdomen .  The blood filled her abdomen and caused severe pressure.   Fortunately the doctors at Beaumont's Children's Hospital were able to drain the blood and somehow stop the bleeding.

The cancer has  already spread to other areas including her liver.  By the size of a couple tumors, ( there are several) the cancer has been there for  a while. Emma has never been in pain prior to the tumor that started bleeding.   There are only a few hospitals in the country that are experienced with this cancer in kids, since it is mostly found in adults later in life. These hospitals are not in Michigan.  Emma's oncologist has had only 3 cases in children, prior to Emma, in his 32 years of practice. 

Cheryl Rarog, Emma's mom, is my neice.  Cheryl and Emma's dad, Doug Ostrowski. were told Emma had cancer a little more than a week before Christmas 2015.  Her biopsy and other tests were sent out of state to a hospital that has more experience in dealing with G.I.S.T. in kids.

 Specialists in  cancer research  are reviewing her case.  Information is being sent to the University of Michigan, St Jude:, Johns Hopkins ,  Karmanos,  The National Cancer institute and many other places with any experience with this rare cancer.

Multiple medical bills,  gas,  food, lodging and taking a leave of absence from work are some of the things Cheryl is worrying about.  Cheryl and Doug have 2 other daughters ( ages 11 and 14), who may also need to be tested for this disease.  

It is not likely that Emma will be treated in Michigan. They will know more in the next few weeks.  Because of the Holidays, things have been delayed.  Cheryl and Doug are waiting anxiously to find out when and where treatment will begin.  Emma's  2 siblings are very close to her and are extremely worried too.

Cheryl and Doug will have many expenses associated with getting Emma where she needs to be for her treatment.  We are are all very worried about the entire family.  It is my wish to make things a little easier for them.  I am hoping to alleviate some of the financial worry so they can focus on Emma and their  2 daughters, Jamie and Camryn.

Cheryl and Doug are extremely grateful for any help they receive.  (They are already concerned about how they will pay this forward in the future. ) They are very kind, thoughtful and loving parents.    If you would like to join Emma and her family in their fight against this rare childhood cancer,  any donation would be greatly appreciated.   Help Emma  beat G.I.S.T.  Thank you.
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Today is the 2 year anniversary of Emma being diagnosed with Wild Type GIST. I remember that day, that whole horrible week actually, like it happened yesterday. So much has happened this past year. Once Emma recovered from the surgery she had in August 2016, the focus has been on her liver. What was visible 2 years ago at diagnosis, a spot or two, has now turned into over 20 tumors, some measuring over 2 inches.
When we heard that the tumors were growing and multiplying at the beginning of this year, I took the news pretty hard. I asked if surgery was an option or a liver transplant could be something to discuss. Neither option was a consideration. The tumors are all over her liver and she wouldn't be a candidate for a transplant because of the type of cancer she has and how it invades everything in her abdomen, which would infect the transplanted liver. What I heard was "that would be a waste of a good liver". Emma was given a second type of chemo pill at the beginning of the year and when they did her MRI, they realized it wasn't doing anything to help her except effect her white blood cell count so she was taken off the drug after 2 or 3 months.
Emma spent the 2 days after school ended in June, in the hospital because of severe stomach pain, which we happened to be in Traverse City, so I had to driver her straight to U of M after doctors okayed me transporting her. She also had to be transported by helicopter over Labor Day weekend from Sandusky, OH to U of M because of severe stomach pain. She spent the last 2 days of the summer in the hospital also. Fortunately, she had obstructed bowels both times, which we were told after her surgery last year, could happen. Never a dull moment with her. It's very scary to take her any where.
Emma's case has been presented to many tumor boards here and in Boston. Everyone is in agreement that there isn't anything they can do that will help her but they keep trying things for our sake. One doctor at a U of M tumor board meeting wanted to try embolization, which works on liver cancer. ( Emma has cancer in her liver, not liver cancer). It's a relatively easy procedure where a chemical with microscopic beads are injected into her artery of one liver lobe. The idea is that the tumors suck up the blood faster than other parts of the liver so the beads would follow the path into the capilaries feeding her tumors, block the capilary with the beads and stop the blood feeding the tumors, killing them. Her doctors in Boston weren't familiar with this being done in kids because kids don't get cancer in their liver, like Emma has, so they were skeptical at first. Emma's dad and I were excited about the procedure because it has been so successful in patients with liver cancer. Why would it work differently in Emma? We ended up having the procedure done in July after softball was over. It was an easy procedure, one night in the hospital, no stitches. 6 weeks later, Emma had an MRI and the procedure didn't work on Emma like people with liver cancer. It stopped a couple of the larger tumors but it didn't effect the small tumors, which are still growing. This was not the news we wanted to hear, yet it worked a little so that should be better than nothing.
The U of M doctor didn't think we should do the other liver lobe since it didn't show much improvement. Right before the procedure, Emma was started on a 3rd different chemo pill. This one helps people with kidney cancer, again just trying things to try things. This medication takes the pigment out of skin and new hair growth. Except for a thin brown line of hair, because Emma had to go off this pill for a month for the procedure, Emma has about 2 inches of new hair growth that is white. Her eyebrows have turned white, as well as her eyelashes. She has also lost her sweet freckles. While she doesn't feel sick, to those who haven't seen her in a while or meet her now, she looks sick.
Emma is still her active self, though I think she is affected from this pill physically sometimes. Her teenage attitude seems to be magnified, but I'm sure that's my brain blaming what is regular teenage life on this chemo. UGH!
Emma started high school in September. She played on the freshman volleyball team and was invited to play a JV game at the end of the season. She finished soccer in October, takes a catchers clinic and had a couple games with her new softball team this fall. Emma will play on the high school softball team this spring. Emma's group of friends are AMAZING. She has a very nice boyfriend and she is taking drivers training with her best friend since kindergarten, Hailey, tomorrow!!
We have spent counless hours in the hospital and at doctors visits this past year. Emma will end the year with embolization on the other liver lobe on December 27th. Her doctors in Boston are happy with the little good it did on the first half so they recommend the other half be done. This is definitely not the way she would like to spend a couple days the short vacation they have until the new year.
I wish this wasn't happening to my Emma. I wish this wasn't how Emma had to spend her teenaged years. I spend many nights crying wondering how long it will be before her liver can't take any more tumors. Which holiday will be her last one. Is this the last time we spend Christmas together? My brain won't shut off. When we received the MRI results after the chemo pills were started and after the embolization, Emma looked at me with hopeful eyes and always asked, "Did it work this time?" I hate when I have to tell her "No, but we aren't giving up."

Thank you for your continued support. Have a great holiday and new year.
Love the Emma Ostrowski family.


5K night run for cancer with friends
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It's been 4 months since Emma's last MRI update. She started on a pill that is used for kidney cancer in hopes to slow the growing of the tumors in her liver. The chemo had a low amount of side effects for her, the biggest one was lowering her white blood count gradually for the past few months. While Emma didn't notice a difference, her dad and I could see a slight, gradual change in her energy. Emma has slowed down to about 95% of her normal energy level, where as this is still 150% of a normal person's level. Her doctor is still amazed she is still doing as much as she does. I say this a lot, but Emma is Super-Human.

After school volleyball ended in March, Emma joined the track team. Practices were every day after school. Though she didn't commit to any one event until the last couple weeks, she did it for the exercise and she became really good at shot put, throwing farther than some of the girls who have done it for a couple years.

Emma is almost done with soccer games and softball practice started over a month ago. Softball games will start in a couple weeks. She hasn't slowed down with her passion for sports.

Emma had an MRI last week. The results did not come back in our favor. The tumors in her liver are still growing at the same rate. There are multiple (maybe 20 or more) tumors in her liver, but none of them are new as of the MRI 4 months ago. This news is definitely devastating us, though we aren't giving up the fight. There will be some doctors meeting this coming week to discuss another treatment to try. While there isn't a medication or cure for this, we will exhaust all options. We know that surgery and transplant are not options at this point.

Thank you for continuously keeping us in your thoughts. Emma starts high school next year. She's very excited and will be trying out for high school sports. She hasn't decided which ones yet, but softball is definitely on her list.
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Hi from Emma and family. Everything you have done for Emma, through donation, prayer, cards, good thoughts and hope hasn't gone unnoticed. Thank you. We appreciate you.

For the past 6 months, emma has continued To receive care at U of M Mott's Childrens Hospital by having an MRI every 2 months. The results have been the same after each scan. The tumors in her liver are growing. Continuously. While 1mm a month doesn't seem like a lot, the largest tumor is over a half inch now. She has several in her liver that are growing.

It's been an agonizing 6 months since her surgery knowing that this is an organ that someone can't live without. She is not a candidate for a liver transplant and there isn't a drug that will shrink the tumors. Yet.

Emma has been sailing along 8th grade, playing indoor soccer until the spring, playing volleyball with her friends at school and softball is starting soon. Nothing is stopping her. She talks of the days she is a grown up and what she wants to do in life and how she wants to be a nurse. Emma is always smiling and she is teaching herself how to cook. Her love is our dog Nemo. She doesn't know the fear that her dad and I know.

We have decided to try a chemo pill that may slow down the growth of the tumors. It works on the adult version of this cancer. There isn't proof it works on Emma's cancer. We can't sit around and not try something. Anything.

Emma had some tests done today. She will start the pill next week. Side effects are similar to any other medication or chemo. Emma wasn't effected by the chemo pill she had last year. She may not have effects from this one.

Time will tell. We will have to wait about 3 months from right now for her next MRI. This will show us if the tumors have stopped growing or slowed the growth. In the mean time, Emma will be monitored once she starts the chemo, which means several trips to the hospital again.

Emma told me she knows that the doctors can't help her. She said all she wants to do is play her sports and not worry about cancer. I thought my heart had been stomped on by a million elephants. We won't give up.

I've said this before but it definitely still describes Emma and her attitude.

Emma has cancer.
Cancer DOES NOT have Emma.
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Here is a fun event for everyone! This is my cousin. He will be helping Emma's Fight during this event. Stop by and see the Stanley cup! It will be fun for everyone.
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$26,155 of $30,000 goal

Raised by 335 people in 30 months
Created December 20, 2015
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5 months ago
Bruno Molin
5 months ago

Merry Christmas

6 months ago
Rosemary-Nancy Collin
6 months ago

Daily prayers and love ❤️ !!

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