Follow up 11/12/10:
Today we rejoice, if you are the family of Madison Schafer, if you are a friend, or even if you are a stranger who came to know her story, yesterday the Schafer family found out that the Cancer has finally left Madison’s body. With a few months of not knowing what will happen the family can finally rest in peace knowing that Madison will survive. Miracles do happen, they happen everyday, we just have to have a little faith, a little positiveness in our lives, a little prayer and Miracles do happen. The survival rate for CNS tumors is around 60%, Madison beat those odds and we are so grateful and happy for Madison and her family. Today the Schafer family celebrates that Madison is now Cancer Free! It will still be a year of chemo and radiation, to be sure all or any lingering cancerous cells are wiped out, but the 9% brain tumor IS GONE… and the year 2016 is still the date.. because they say she has to be 5 years after her last chemo without any signs of cancer to be claimed “cancer free”…
(Schafer). You will pull through Madison you are a strong, beautiful little girl. We will keep you in our thoughts and in our prayers.
Following up 10/19/10:
Madison has had a very long day and has been so good. She had 2 of the chemo’s injected into her spine and a spinal tap this morning and is now having 2 of the chemo’s through her port, one of which will be 72 hours long. The Doctor has lessened the strength of the chemo by 45% so her body will be able to handle the dosage better. Her white blood count has dropped rapidly as she started out the day at a count of 12 and is now down to 2.2. Pray for her body to be able to fight any infections.
Due to the nature of her immune system, Chris and Susie ask that she receive no visitors in the hospital at this time. Hopefully, by the end of this week, she will be back home building back her strength and recuperating.
Madison did continue to eat solid foods while she was having chemo, which is an excellent sign. And she made her daddy’s day when she ate one of his birthday cupcakes!!! So far, she seems to be handling the chemotherapy, but she still has 3 more days to go.
PRAY! MAD LOVE! ~Written By: Madisonsstory.com~
“Celebration time.. come on!” Yes, Madison is home and we are so so very happy to have her home with her family. And we can tell, just by her face and body language that she is so happy too!!! What a difference it makes to be in her familiar surroundings and see her bah-bah Colin and mommy and daddy and Nona and Angel and Grammy all together. Popop had to deliver their dog, Charlie to our dear friends house who will take care of their dog until Maddie is better, so Popop will get to see Maddie at home soon.
Madison came home to balloons and roses and a HUGE “Welcome Home Madison” sign on the front lawn which was printed by Vivian and her husband… what a special surprise for us all. I think I have heard Susie and Chris repeatedly say “It is so good to be home” … probably at least 20 times so far. Everyone will sleep good tonight. Nothing like a fresh shower at your own home. Madison had a nice warm bubble bath when she got home and everyone took a turn holding her. She hasn’t fallen asleep yet, because I don’t think she wants to miss a thing. Her Aunt (Titi) Claudia arrives tonight, so she will have plenty to keep her busy.
She gets one whole day off from treatments and chemo. Friday she will be back to the hospital for a spinal injection of chemo and some other tests, so it might be another long day as an out patient. Physical and speech therapy will begin and daily shots at home will start and then a regular routine of out-patient chemo therapy. It is still a long road.. but it will be a ROAD TO RECOVERY. We have faith that God has a plan and Madison will be healed. The power of prayer is awesome and we can’t thank you enough for continuing to keep Madison in your prayers, as we know this is only the beginning of Madison’s Miracles.
All our love, the Schafers and Navas.
I am so happy that Madison is finally home with her loving family. This family is extremely strong and I think they will pull through this just fine. My prayers will continue for Madison and her family & I hope that you will do the same.
Remember you can help donate to help pay the medical bills or help send gift cards for food etc. to Madison Scahfer.
Below were earlier updates and what is going on with Madison
Update: 09/21/10 – This is the condition that Madison has:
Central nervous system atypical teratoid/rhabdoid tumor is a disease in which malignant (cancer) cells form in the tissues of the brain.
Central nervous system (CNS) atypical teratoid/rhabdoid tumor (AT/RT) is a very rare, fast-growing tumor of the brain and spinal cord. It usually occurs in children younger than three years of age, although it can occur in older children and adults.
About half of these tumors form in the cerebellum or brain stem. The cerebellum is the part of the brain that controls movement, balance, and posture. The brain stem controls breathing, heart rate, and the nerves and muscles used in seeing, hearing, walking, talking, and eating. AT/RT may also be found in other parts of the central nervous system (brain and spinal cord).
Update: September 18th – DAY ONE CHEMO: Written by Diane Schafer
Today has been a long and difficult day for Maddie. She had about 4 procedures done this morning, including cat scan, all kinds of base line tests, blood, eyes, hearing, vital signs etc. Then she had a spinal tap and then 30 minutes of chemo. She was brought back up to the room and actually looked great. She was wide awake and smiling and responding. But then after awhile she threw up twice, but then she was ok. She hasn’t napped but looked pretty tired… duh… who wouldn’t be. Now she is getting a ultra sound on both legs because the morning cat scan showed a spot on one leg, which might be a clot. She is such a trooper and only cries when a nurse comes in the room to do more tests… she is smart too, cause she knows they are up to something. They are going to do 8 hours of chemo next and then tomorrow they will do 24 hours of chemo, then a day of rest (ummmm it’s about time) and then 72 hours of chemo. The adage,” life is not fair” comes to mind when I see all that little Maddie is going through… no parent should have to watch their little child suffer. But I know there is hope in her future and many more daily victories in store for the Schafers. I am so appreciative of the many messages I am receiving from other parents who had a child with cancer and are now celebrating 5 years of cancer free life. I even heard from a mom whose child had the exact same rare cancer as Madison and had the proton treatment and had such encouraging words of hope as her child has fought and won the battle and is cancer free. Please continue to spread the word of Madison’s Story, and in 2016 we will pop the champagne cork and throw a huge party… because that is when the Doctor said Madison will be cancer free!
Madison’s Grandmother Diane, sent me a beautiful thank you note on Face-Book for posting about Madison on my website.
Her strength that she portrays in her writing is remarkable. It amazes me how people can be so strong and have such faith in God to pull us through, it is not only an inspiration but an eye opener to people who think their world is falling apart around them. In times of hardship we sometimes close ourselves off and we forget that there are people out there that care, there are people out there with compassion and understanding. Today I wanted to post the update on Madison that her grandmother Diane posted from her facebook.
UPDATE on Madison:
As most of you know either from us directly or through facebook, our grand-daughter, Madison, 20 months old, was diagnosed with a cancerous brain tumor. She is the daughter of our son, Chris and wife Susie and has a 5 yr. old brother Colin. One of the questions we are asked most often, is how or why did we know to check for a tumor? Or what were the signs?
Briefly, Madison was just fine until about a week ago when she started showing signs of a cold, cranky, slept a lot and cried a lot, which definitely was not her personality. Susie had taken her to the pediatrician and he said it was a small ear infection and 4 new teeth were coming in…. take antibiotics and it will be fine. But after a few days it was getting worse, so they took her to an Urgent Care emergency and they said the same thing. Thursday morning, Ethel (Susie’s mom) had Madison and she looked worse and lethargic and her eyes were “rolling around” in their sockets, and she looked dazed. Ethel said this isn’t right and took her to Baptist Hospital ER. Fortunately the ER doctor saw the signs of the eyes rolling around and said she should have a CAT scan and that is when the very large tumor was seen in her brain. Almost 2 1/2 inches in her tiny little brain. Everything from that point on was fast and she was rushed to an MRI for a 3-D image of the tumor and by 10:00pm that same night she was undergoing 7 hours of brain surgery. They were able to remove 90% of the tumor, but the final 10% could not be removed and is cancerous. Tomorrow, Wednesday, they hope to get back the results as to what kind of cancer it is and how aggressive, so they will know what type of chemo treatment she needs. Tomorrow they will do a 3rd MRI to be sure there is no other cancer in her spine or other parts of her body, and they will also do surgery to implant a port for the chemo.
Needless to say, our world has been turned upside down, but by the Grace of God, she has shown remarkable progress in her recovery. We truly believe God has been with us every step of the way, as there have been so many “Godinstances” of things just falling into place to make things happen; like the ER Doctor being on that shift when he wasn’t suppose to be there because his daughter had died of a tumor one week earlier and knew to request a CAT scan because of what had just happened to his daughter, and the newly hired neuro-surgeon who had already done 3 brain surgeries that day and was suppose to go home, but was still there for Madison at 10:00pm. There are so many more stories, but God knows each and everyone of them and we just praise him.
FINALLY, I would like everyone to share this link with everyone else they know and spread the word. Madison’s pre-school, “Kids for Kids Academy”, has set up a link on their website for support and updates about Madison. Please click the following link and leave a comment for Chris and Susie.
(Story above written by: Diane Schafer)
You can help donate HERE.
When I read about Madison all the small problems like worrying about school, or a little neck ache don’t compare, it reminds me to stop complaining and to just deal with life, because there are worse things that can happen. Like poor Madison who is only 20 months old, diagnosed with a brain tumor that is cancerous. There are always worse things out there, we just have to remember to take the bad with the good, have faith, remember that god is there for us and that he will pull us through. I truly believe everything happens for a reason, I don’t think that a child or family should have to suffer this way, and I don’t know why the reasons are what they are, but you have to be grateful for the small things, like Diane said the ER doctor wasn’t even supposed to be there because his own daughter just passed away from a brain tumor a week prior, yet he was there, and he noticed the signs that his daughter had, and if it hadn’t been for him, maybe another doctor would have diagnosed Madison with the same thing the other two doctors had diagnosed her with (teething and an ear infection). If he didn’t order that CAT scan… (well we don’t even want to go there), and the Surgeon who was already there, ready to go home after 3 surgeries, how he pulled through and continue to do what he does (save lives). These are the kind of the doctors we have to be thankful for, thankful to god for putting them in our world to make it better. God bless you Madison and my prayers are with you and your family.
Update: 09/17/10 – Madison’s Grandmother wrote on her Face-book wall: I’m aware now!!! Madison was diagnosed with a very rare cancer that affects only 1% of cancer patients, called AT/RT. she begins Chemo tomorrow. (Written 09/16/10)
More Updates as I hear or see them …. God bless