Right before leaving the office today I received an email from my sister, Debie (our Chicago host in a couple weeks), which she received from a friend of a friend from work. I joked that it was the "Six degrees of Brock" at work. Here it is (sorry for the small font):
Dear Neighbors, Friends and Family,
Your prayers, positive thoughts and constant concern have been a welcome blessing for Rosie and for all of us during the past life-changing week. So many of you have questions and concerns for and about Rosie. We hope this detailed e-mail helps you to better understand her condition, care and recovery and answer the questions you have.
As many of you have heard, Rosie was diagnosed with three brain tumors last Friday. Her diagnosis came as a big blow and a shock, but at the same time a known possibility of her Neurofibromatosis (NF) disease. Unfortunately, there is no cure for NF at this time.
There are two small and one large, all inoperable tumors deep in the brain. The Neurology, NF and Oncology Specialists are certain that all of the tumors are benign (although we are still waiting for two additional "stains" or biopsy results to come back.) The largest tumor has caused complications for Rosie by creating a condition called Hydrocephalus. Hydrocephalus is an abnormal accumulation of cerebrospinal fluid (CSF) in the cavities of the brain called ventricles. Because this tumor is an optic nerve glioma (connected to the optical nerves of both eyes) removing it would cause blindness, so this is not an option.
Last Friday (9/7), we went to Children's Memorial Hospital for an outpatient CT scan or (CAT scan) were Rosie had to be sedated for the procedure. We learned of the largest tumor and Hydrocephalus. It was too dangerous for us to leave the hospital because the cerebrospinal fluid (CSF) had built up in Rosie’s brain and was at dangerous levels, the pressure she was feeling was what was making her so sick and if left untreated could cause brain damage or worse.
Instead of returning home we were immediately admitted to CMH--located in downtown Chicago . She was put on medications to try to reduce the swelling and more testing began. She was again sedated for a MRI to give us and the specialists a more detailed picture of her brain. With this test we learned of the two additional tumors. The doctors are not too concerned about these smaller tumors, since they are not disrupting the brain at all and are the kind of tumors they typically see in kids with NF.
She was scheduled for Neurosurgery on Tuesday morning. During the surgery a shunt was put into Rosie’s brain to permanently re-route CSF into the abdominal cavity where it will be absorbed. We moved to the Constant Care Unit (like ICU) of the 3West Neurological floor so that Rosie would receive a higher level of care.
After Tuesday’s surgery Rosie did not bounce back as expected, and her condition worsened to a critical state. She was rushed into emergency surgery around 10:30 p.m. on Wednesday for another brain surgery. Unfortunately, Bella had been visiting when things got bad and she went to pre-op with us and had to watch her sister being rushed off to a second surgery, until her Uncle came and got her. After a long and very scary night, we returned to her room around 2:00 a.m. where we continued to watch all of her vital signs on the monitors.
Again, after the second surgery, Rosie was expected to improve. She again did not respond as quickly as expected…the doctors said that we were still not out of the woods and the next 12 to 24 hours would be critical. They kept saying this was not the typical case and the tumor was in an atypical place where they hadn't seen it in past patients before--it was "presenting itself differently"--the large tumor looked "different to them", it sits in the third ventricle of the brain--taking up the space were CSF would normally be draining through the brain cavity and is "quite large".
The nights were the hardest, the longest, but luckily, on Thurs. night she turned a corner around midnight and asked for food – a welcome sign (Rosie had wanted to eat during the day, but had been unable to keep any food or liquids down). Unfortunately, we couldn't allow her to eat until they did another CT scan (un-sedated as she’s gotten used to them now). In the morning the scan showed a huge improvement and the scan looked great! She was talking a blue streak--we hadn't heard her speak more than a few words for days. The fluid in her brain was returned to normal and the pressure was relieved. We had avoided a third brain surgery!!!
We moved from Constant care to the main floor of 3W on Friday 9/14 and after a physical therapy evaluation we got released to come home around 5pm Saturday (9/15). We are now Home Sweet Home after 9 days at CMH!!
Rosie is still very weak and is starting to walk on her own, she is beginning to recover--as she gains weight and strength and begins to keep food down she will get stronger and stronger each day. In the next few days we will have more follow up appointments and yet another surgery at CMH to get an implanted venous device or "port" which can be used during chemotherapy, used to draw blood, and give IV fluids and medications.
Rosie will be working with a physical therapist to start walking again. We will be at CMH weekly for chemo and working closely with the Neurology, NF and Oncology Specialists.
Please feel free to call us, as talking helps to relieve the stress and worry. It also helps to process all the information and internalize it! We will need your continued prayers and support as we face chemotherapy and continued treatment.
The shunt will need to be monitored for shunt malfunctions and adjusted if the balance of fluid or pressure changes in the brain. CT scans will be a required often. The port will need to be flushed monthly and blood tests will be needed often to keep an eye on her blood cells counts. Shunts do require replacement and shunt revisions as she grow but can often last for years with no problems. Chemotherapy will be weekly for about 6 months.
Annabella has been a wonderful big sister – but it has been very difficult to be apart each night. She has also seen a lot for her young eyes as she visited almost daily at the hospital. She has been bounced around a bit the past 10 days and could use an extra smile or hug when you see her. Mark has been running back and forth daily as he tries to be home for Bella each night, get her to school in the a.m. and be at CMH for Rosie and me each day.
We are all exhausted and are so glad to be home! Your prayers, thoughts and offers of help have come in an overwhelming response of compassion and concern for our family. Knowing that we are blessed with such a wonderful, caring community of friends and family has given us great strength and support. This life-changing event continues to put all things into perspective. It is the people in our lives, like you, who make all the difference. We thank God for each and every one of you and feel so blessed to live and work with friends like you! We are thankful for all of the talented nurses, doctors, specialists and staff at Children’s Memorial and feel we couldn't be in better hands or a better hospital.
We thank you again for all of your support! It will be so much easier to ask for help from time to time knowing all of you have willingly come forward to assist us at this time of need, now and in the future.
As Mark returns to work and begins to travel it will be difficult for me to handle all the appointments for Rosie and get Bella by 2:25 after school Trying to keep her in her Kindermusik program and swimming lessons, trying to keep life as "normal" as possible for her. I know I can't do it alone, and as many of you know I am not always one to ask for help, but I know I will have to. I know there will be some nights when I will need some help getting a meal on the table or picking-up a gallon of milk from the store--I will start using PeaPod!!
We have received so many wonderful heartfelt cards, adorable balloons, soft and cuddly stuffed animals, which Rosie has been squeezing with love and that have help her through the tests and needle pokes. We even received a bouquet of cheerful sunshine cookies--that made us all smile! Rosie's room has been brightened and cheered by so many of your generous gifts. Thank you!!
Many of you have asked what you can do to help now…there are many opportunities to make a difference for us, Rosie and so many other kids who struggle everyday in the many rooms at CMH.
Please celebrate Rosie's life and fight by helping to find a cure for NF. Please consider sending a gift or donations to help with NF research in Rosie's honor to:
Attn: Dr. Listernick , NF Clinic
Children's Memorial Hospital
2300 Children's Plaza, Box 16
Chicago , IL 60614-3394
Make all donations payable to Children's Memorial Foundation and in the memo area of your check write "For NF Research--in honor of Rosie! Or simply drop your donation off to Rosie at our home and she will deliver it in person!
You can also drop off new toys, games, books, small prizes, stickers to our home to be donated in Rosie's name for the play area at Brown Family Life Center . We will be making a delivery each week when we visit for chemotherapy, as visiting the Brown Family Life Center was the highlight of Rosie's hospital stay. They really need more games for ages 3-5.
We are more committed than every to hold our annual fundraiser to support Children’s Memorial Hospital’s Brown Family Life Center where Rosie got to play with her first toys away from her bedside on Friday afternoon. But our main goal is to raise money for NF research. We want to donate as much as we can this year to CMH's NF clinic to further the research they do. Rosie’s NF doctors at Children’s are some of the most talented and foremost researchers of NF in the United States . We also support the Children’s Tumor Foundation (CTF).
Our annual fundraiser, Shop & Share for Rosie will be held on November 9th & 10th Please mark you calendars!! We can’t pull this off alone either--we will need your help!
This year, the benefit will be held at St. John's United Church of Christ in Arlington Heights . Special thanks goes to Rev. Jeffrey Phillips, their pastor, for getting the space donated. We will need people to bake for the bake sale, we will need people and businesses to donate items for the Silent Auction. We are looking for baskets and new items to put in them. Gift certificates from local restaurants, spa's, body shops, wine, etc. We are looking for corporate sponsors to help with the costs of running the event. We are looking for entertainment--magicians--Santa will even be visiting this year!! We want to reach our goal of $10,000 this year for NF research!!
Rosie's Website www.researchforrosie.com will soon be updated where in the future you can check up on us and her progress. To learn more about Neurofibromatosis please visit Children's Tumor Foundation at www.ctf.org.
There’s a poem or saying I always remember and it goes something like this…
It’s not the car you drive or the clothes you wear.
It’s not the way you look or the color of your hair.
It’s what you do and how you act that people will remember when looking back.
Thanks for keeping us in your thoughts and prays and for thinking of Rosie today!!!!
With a great sense of love and community!
Jo, Mark, Bella & Rosie Colucci
Contact us at: firstname.lastname@example.org or call 847-705-8456 Please forward this to anyone who would like to pray for Rosie or help in anyway--Thanks!
After reading this , I went on a silent run for Rosie and Brock, praying for recovery and a quality of life that we runners take for granted.