Lost during Sacrifice.

I know I have been posting about Brain Tumor Warriors, but today I honor those who gave their lives intentionally. 

Last August, I got the privilege of taking my kids along with my dad to Arlington Cemetery. It made my heart proud and heavy to see the acre after acres, row after rows of service men and women laid to rest there. They gave the greatest sacrifice in courage to assure my freedom and the freedom of my kids. Don't let today go by today without giving them the honor they deserve. (This is a picture I took of the "Changing of the Guard" at the Tomb of the Unknown Solider....God knows his name and he maybe unknown to us, but not forgotten)

and sometimes the war keeps going after the battles

Sometimes the battle against brain cancer doesn't just last in your childhood but follows you into adulthood as well....

Today's Brain Tumor Warrior

Ethan Mjolsness 

In April of 1999, at the age of 8 years old, Ethan's family began their journey into the world of cancer, and more specificly, the life I know of Ependymoma. Ethan had began vomitting in the mornings. He'd stay home from school, sleep for the morning, return to school after lunch and carry on a full day. This began to increase, until it was a daily occurance. His pediatrician ordered an MRI which showed a tumor in the 4th ventrical of the brain, a very common place for Ependymoma. Ethan had surgery followed by radiation, did well, thrived, and moved on with his life. 

His MRIs came back clear every year for seven years until December of 2006. Ethan had been having back problems for a number of months. The family visited with a number of doctors. They were informed that there was a tumor in his lower spine. Ethan then had surgery December 20, 2006 to remove the tumor in his spine. (The same day that Ivee was having her first brain surgery for brain cancer). Again, he had radiation to his lumbar region and began taking Temodar (oral chemo).

In November 2007, a followup MRI revealed a tumor in the T4 region (between his wings). He did not have any signs of it previously. Ethan once again had surgery to remove the tumor on Nov 30. By Dec 2 he was released and was able to celebrate his birthday at home! He received chemo infusions and radiation.

In April 2010, a followup MRI revealed two small nodules in the lumbar area of his spinal roots.  On May 10th he had surgery to remove tumors from L5 and S1.

In July 2011, a followup MRI revealed a nodule at L5. Surgery was performed on August 17 unsuccessfully. The surgeon told Ethan's famliy that he was unable to verify what was tumor, what was scar tissue (from previous surgeries) and what was nerve root.  In fear of doing damage to nerves, he did not want to try resecting anything.  The family appreciated this decision, however they were very saddened.  This means he was unable to remove the tumor(s) that are there. He received 3 treatments of stereotactic radiation that November. 

Almost a year later, August 2012,  a followup MRI reported clear spine! There is an area in the lower right backside of the brain that they had been watching and it clearly appeared to be a small tumor.  Surgery was performed on October 16 where the tumor was removed.  Partial vision loss in both eyes has slowed Ethan's recovery.

October 2012- MRI revealed a small tumor in the brain.  Surgery came shortly after and Ethan lost (temporarily) his peripheral vision on the left side.  After, he was monitored by an Ophthalmologist.  Either his brain has overcompensated for the lose or he truly gained vision back.

April 2013. MRI done April 3rd.  MRI reveals a new tumor in the spine – L1 area. It had returned very quickly – 3 month time frame. Surgery will come later for this due to another tumor at the base of the neck, where the spine and brain join.  Doctors do no feel that surgery on this tumor will be very successful due to intertwining with nerves, but doctors move forward to perform surgery anyway.

Today at the Age of 22: May 20, 2013. Ethan arrived home last night after 6 days in the hospital following brain surgery to remove the neck tumor. His tongue is about 2 1/2 times it's normal size and is affecting his speech. As you can imagine it is stressing him out a bit.The incision is the shape of a large C from the middle of the back of the head, around his right ear and down his neck. Skin grafting from his right leg was done this time. They removed the drainage tube from his leg to remove any liquids. He has been in quite a bit of pain, but he was anxious to get home. The family is managing well. I'm praying the tongue swelling begins to go down soon. Now  for 3 months of recovery at home, and praying for complete healing. 

Ethan has never let cancer stop him. He will, by the grace of God graduate this Fall from college! He is a fighter and champion in showing the world that it is up to you to do what you will with your circumstances. You can get knocked down, but it's up to you to get back up again! Please, pray for healing and wisdom for Ethan as he is recovering today! 

Meet Dillan

Today's Brain Tumor Warrior

Dillan Foster

My family heard about Dillan through the grape vine from a relative. He was post surgery at our local children's hospital. Dillan was at school with his mom and fainted in the hallway earlier that week. He was rushed to the hospital to see if he had a concussion from hitting his head. The CT scan showed a mass in the fourth ventricle of his brian, and immediately Dillan was given an MRI. Within days, surgery was performed and 99% of Dillan's tumor was removed. After the surgery Dillan had Posterior Fossa Syndrome or Cerebellar Mutism, which causes one to not be able to talk or swallow. In a few days time they received Dillan's diagnosis. Ependymoma Grade II. (The third Ependymoma to come through our hospitals doors here in Mobile, Ivee being the first and the second just a couple of months before Dillan) 

When Emmett and I heard Dillan's diagnosis was Ependymoma, we couldn't get to the hospital fast enough. Turns out, Dillan's dad, Tim, had worked with Emmett years ago at the Olive Garden. We shared our hearts with them about our journey, and a few days later, the Foster's made the decision to transfer Dillan's care to St. Jude Children's Research Hospital. 

Dillan's family began their visit to St. Jude the same week Ivee was scheduled for scans. I texted his mom and dad and let them know when we had arrived that night. They had a long first day of appointments and meeting doctors, but to my delight, I ran into Tim in the cafeteria of the Grizzly House. He had this amazing look on his face, and began to tell me what had transpired that day. They met with Dillan's new oncologist and were told some amazing news! Dillan's tumor was not an ependymoma after all, but his diagnosis was actually a Pilocytic Astrocytoma which, if you can say this, is the best kind of brain cancer you can have! It is slow growing and requires no sort of treatment, radiation or chemo. It just requires observation and watching to see what happens. 

Dillan is doing well, and getting back to his old self, playing, fighting with siblings and everything!! 

Kids aren't the only ones who have brain tumors!

Today's Brain Tumor Warrior is different from the others I've posted about. He was not a child, but the father of a friend of mine. Adults get brain tumors too! My friend, Sharra, was kind enough to answer my request and type me a letter about her dad. I don't want to change her words, so you will be reading from Sharra's heart today! 

Today's Brain Tumor Hero

In Memory of
Joe Mattingly

The Words of Sharra Wilson about her dad...

My dad, Joe Mattingly, was diagnosed in early 2000 with a glioblastoma multiforma brain tumor after severe headaches took him to the ER. He fought valiantly for 29 months before an aggressive recurrence took him from us. Our family feels blessed to have had so much time with him after his diagnosis and learned so much that we try to pass on to other friends struggling with their own battle. 

Here are some lessons learned: 1) Don't take your first prognosis as gospel! Seek 2nd & 3rd opinions if you can. We were told by the top neurosurgeon in Dallas that my dad's tumor was inoperable & nothing could be done. We immediately followed up with a 2nd opinion, which leads to our next lesson…2) M.D. Anderson Cancer Hospital in Houston, TX is a research hospital that accepts self-referrals! Another doctor does not have to refer you for care. Since it is a research hospital, they want people of all nationalities, social, & economic backgrounds. Once we sent dad's MRI to them, they called the next day & asked how quickly we could get there. Research hospitals are doing things that regular doctors don't even know about. Sometimes they still may say nothing can be done, or they may say "what your doctor has recommended is the best course of action," or they may inform you that a certain treatment is possible but you have to decide if it is worth the risk, difficulty, or if it is too extreme for you to accept. 3) Your (or your family member's) records are yours! Ask for copies of tests, diagnosis, treatments, medications, and any films, & X-rays. If you go for another opinion or are able to travel, having these records will save you time & money - especially since your insurance may frown on duplicate tests within a short period of time. 4) Keep organized records! As soon as my dad was diagnosed, my mom bought a huge binder with divider tabs. Inside, she organized insurance information, disability paperwork, doctors' records, test results, insurance claims, receipts, medication dosages etc. She carried this with them wherever they went. 5) Attend a support group & any therapy recommended! A brain tumor support group was great for my mom & dad because it helped them not only in how to deal with the disease & its effects, but practical advice for dealing with insurance, daily issues, pros & cons of various medications. It also reminded them that they are not alone - others are right there in the battle with them. Cognitive therapy was great for my dad in helping him use the parts of his brain that were affected. Puzzles & other activities helped him know that he was actively fighting against the cancer. 6) Hospice is an amazing ministry! If it comes to this stage, do not be afraid to talk with hospice. For us, they made the last stage bearable by helping us communicate with the hospital & sharing wisdom with us that gave us the assurance that dad was comfortable.

My dad was a very successful engineer, and unfortunately, was never able to return to work. But the blessings that we all received were abundant! He was able to spend an extra 2 1/2 years with each of us in valuable time spent talking, sharing, and saying the things that we needed to say. Because of the extra time, he took more walks with my kids, spent time teaching the boys to whittle, coloring and playing with my youngest daughter and niece who were only 3 years old when he passed away. But, they remember Pepaw as fun and taking time for them, not sick. When my dad's last recurrence was beginning to make him feel like "something just wasn't right," our whole family, mom, dad, my sister & her family, & my family with all 4 kids were on a Disney cruise. We have great memories and pictures! I'm glad that before he became a "trailblazer" for our family to heaven (as he told my kids, being the hunter & outdoorsman he was), he chose to fight for more time. We miss him & love him, but more than anything, are thankful that because of Christ in our lives, and his, we will one day be reunited! 

Blessings!

Sharra Mattingly Wilson

From my town to your PC

Today's Brain Tumor Warrior

Carlin Davis

I want you to meet Carlin Davis, avide country girl. She loves chickens, camouflage and hunting turkeys! Carlin and her family live here in our small home town. She is one of, I believe, 8 kids from our town that is fighting cancer or has fought within the last few years. Carlin's parents tried for many years to have a child, and Carlin was their miracle IVF (test tube) baby. She was their "impossible dream". 

Carlin, who is 12 years old, was diagnosed with DIPG on August 23, 2012. About a week before school started her parents noticed Carlin's left eye would not turn to the left. What they thought would be a quick fix, going to the eye doctor, turned into their worst nightmare! That afternoon, they ended up at Women & Children's Hospital in Mobile. The doctors did an MRI scan and told them she had an inoperable brain tumor. 
She was referred to St. Jude Children's Hospital, one of the only hospitals in the world that will try to treat this incurable cancer. Carlin did well post radiation treatment and oral chemo. The tumor seemed to be shrinking and stable. In April, however, there was tumor progression and she was no longer able to follow the protical she was on. They are now trying new treatments with chemo to try to give Carlin a chance at life! Praying that God works a miracle in Carlin's Life! 

You can follow Carlin on FB at Carlin's Courage. 

*All of the children I have written about have websites to the left on my page! 

Met "O-Livi-A"hhhh

If you have never seen the show Olivia, about a very smart and somewhat pushy little piglet who loves the color red, then you don't know why I have to sing that name anytime I say it!

Today's Brain Tumor Warrior

The Thriver

Olivia Bell Shroades

Just seeing this little girls face makes me so happy and just makes me want to giggle. Olivia is not quite a month older than Ivee. She was diagnosed with a Grade 2 Ependymoma just before her first birthday. She and Ivee's birthdays and diagnosis are so close together, that in my mind, I sometimes think of them as sisters...sisters of the cancer world. Due to her brain surgery, Olivia has had a tracheotomy  a peg feeding tube, a Hickman port, 30 radiation treatment, lots of therapies, and numerous spinal taps, CT's, and MRI's.

Today, Olivia as NO trach, No feeding tube, No port, and is thriving and surviving. 

She is continuing to improve and amaze everyone each minute, hour, and day. She gives me hope that one day, Ivee will no longer need her feeding tube. Today is Olivia's MRI and check up. We are praying that continued healing, growing and NO SIGNS OF CANCER!!!

She is not only a survivor - but a THRIVER!!!!

My Favorite

     So, I saved my favorite brain tumor warrior until today. Why would you not put her first or last you may ask? Well, May may be brain tumor awareness month, but more importantly for me, it is the month we celebrate Ivee's life.
     Today my baby girl is seven years old. I can't believe it has been only seven years with her. It feels like a lifetime. Emmett and I were conversing yesterday and I stated, "I can't really remember life without her. So much has happened that it feels like she has been here all the time." So, today I celebrate the life of Ivee!!! Since so many of you know her story and I don't really have to bring you up to date, I'll celebrate her with just a few pictures!

Today's Brain Tumor Warrior

Ivee Isabell Foley

Seven years old

Days before the fall from the grocery cart 

The Day before first brain tumor removal 

After five hour tumor surgery 

Going through Chemo and trying to learn to sit up (wouldn't accomplish this for 7 more months)

First birthday celebrated in the hospital while battling infection from chemo and low white blood cells.

At home on a good week watching daddy play video games. 

1. Living at St. Jude. (Right eye turned in drastically).  2. At the zoo in Memphis . Daddy's looking at the hippos, but Ivee is admiring her daddy, who she adores. 

In December of 2007, we celebrated our first G.I.F.T. day. 

Spring of 2008. Hair growing and looking very cute! 

Loving baseball games with "her" pawpaw and celebrating her 2nd birthday at the park with Nemo. 

Ivee and her favorite doctor...EVER! Dr. Merchant

In September 2008, has surgery to remove scar tissue and ease compression on the brain stem. This leads to a meningitis and the need for a shunt. 

 

2009 - NO surgeries this year!!! Just growing and trying new things...and being silly! Turns 3!! Yepee!

2010 - Shunt line infection. Leads to shunt revision. 

Ivee sees her first snow fall one week after surgery 

May 2010 - Ivee turns 4

October 2010- Hip Dysplasia Surgery. 

2011-Cancer returns- Goes through second dose radiation. 

Make A Wish Trip to Disney World!!!

 

By Fall of 2011 - Ivee starts first year of Kindergarten

2012 - Ivee turns 6.  

Ivee gets glasses and hearing aids in Summer and we decide to put her back in K5 that Fall.

Summer 2012 - She takes her first trip to meet Grandpa's family in North Carolina

Spring 2013 - Ivee competes in her first Special Olympics Competition.

May 8, 2013 - This Morning...So happy and so proud to be SEVEN!!!!

Happy birthday my Ivee!!!!!!

What if...

What if you had grown up with a child who was "different" due to a brain tumor and treatment? How do you think you would have treated them? Viewed them? These are things I think about all the time. Ivee is at a place in life where all her fellow "soon to be graduating" kindergartners treat her special and love her. She is different and has special needs...and right now that is okay. We had Ivee repeat K5, due to cognitive developmental delays and maturity, so she began her school year at the age of 6 with 5 years olds, and she was relatively the same height as most. We are ending the school year with a 7 year old amongst 6 year olds who have begun to tower over her. Growth is just 1 of many issues we will face as she notices that she is different. But, let me state, she does not let any of this hold her back! She is determined to do things on her own and be independent. She is a fighter through and through.

I wasn't sure who I was going to pick as today's brain tumor warrior, I have many choices. But then CERN (Collaborative Ependymoma Research Network) shared a video today that made me cry, laugh and smile. It gave me a glimpse into Ivee's possible future. Not that Ivee will grow to be like Dakota Bray (the warrior in the video) but that maybe her classmates will grow up with her, have awareness and be changed for the better because of Ivee.  So...

Today's Brain Tumor Hero 

Dakota Bray

Please, watch the video of Dakota and her classmates from an article from USA Today.

(Click on the picture or text to see her short video) 

Crowned Prom Queen 

Counting the days

My kids are counting the days until school is out. Actually, Ivee lives everyday counting down to the next BIG moment. That happens to be her birthday, her party and school. So this morning the count recap was "2 days until my birthday, 5 days until my party, and 14 days until school is out." Yes, everyday we count down something. She keeps momma on her numerical toes, and I wouldn't want it any other way. Counting down days is a way of remembering...she is with me. We have something to look forward to. Even though we are not promised tomorrow, I have an anticipation of the future with my baby girl. I love this feeling. Yes, it's an unsure future, but I can have hope and a great expectation, for God has given me a new life through my trials and I want to live it to the fullest.

Obviously, I am going to slack on trying to update heroes to my blog on the weekends. I was hoping I could get to it, but life is just so busy. So, I guess a realistic goal would be weekdays. I'll just make it a Monday - Friday job. Here is another child who has been dear to me! And...thank you for taking the time to read about these special people in my life!

In Memory of

Justin Tollett

February 20, 2006 - January 29, 2012

Justin and Brandon playing at the RMH playground. 

Justin laughing it up with Brandon at the RMH in Memphis. 

I met Justin and his parents, Kristie and Jerry, one day in the RO waiting room as our children were sedated and getting radiation. Jerry would talk to a brick wall if it would listen, and I'm okay with that. Just was four, about to turn five, just like my Ivee and Brandon. He was diagnosed with Medulloblastoma, a brain tumor, and a "sugar coating" of the spine. Medulloblastomas are natorious for affecting the spine and it's fluid as well as the brain. At the time he was receiving high dose radiation to his brain and spine.  

Like many children, Justin had been sick for quite sometime, three weeks in his case. After going to the pediatrician for the third time, he was admitted to the hospital for dehydration. Not pleased with what was happening with him in their small town, his parents decided to take him to the ER in Knoxville at the children's hospital. There they did a Cat Scan of his brain and found the tumor.  Life became a moment of shock, a whirlwind of decisions, and then an adjustment to life at a cancer hospital for children. 

Justin fought cancer through 30 doses of radiation that began in February of 2011 and 4 months of hard chemotherapy that ended in October of 2011. 

At the end of December, Justin took a turn for the worse, and a MRI revealed he had two new tumors in the his frontal lobe. After talking to the neurosurgeon about surgery and affects and damage, Kristie and Jerry made a decision to not go through with the surgery and any further treatments based on quality of life. They watched as Justin held on for an entire month on hospice care. He would have been 7 this past February 20th. 

A life after cancer treatment

These are the words of Justin's mom from one of her blogs. 

       "The side affects from radiation *(and chemotherapy) are very distrubing to Jerry and me.  Monday was the second hardest day of my life.  To think once he is cured of cancer his whole life will now be affected by such high doses of radiation and the chemo.  At that moment when the doctor was telling us what was going to happen to Justin as he got older I thought I don't believe you.  Then I got mad.  I told Jerry I am not going to believe what he is saying I can't.  Jerry, my sweet husband, said, "Then we won't."   

Kristie and Jerry never got to experience that life with Justin, but it is a place that I live. Brain damage, learning disabilities, hearing lose, vision impairment, lack of balance, delayed development, growth hormone shots, compression of the brain stem, weakening of blood vessels, and many things we haven't experienced yet, such as necrosis of brain tissue. By God, I pray one day we can avoid doing this to any other children! 

*I added chemotherapy cause the effects are very dramatic as well. 

Today's Hero

PORT FLUSHING UPDATE!! Thank you for praying everyone. I got great news yesterday. Dr Merchant said we need to remove the port. She's had it long enough. She doesn't need it anymore. We will go to Memphis once school is out, and Ivee will have surgery to remove it. And since we won't be keeping it, Ivee did not have to have it flushed yesterday, or ever again! Thank you for praying!!!

Today's Brain Tumor Hero

In Memory of
Brandon Moseley 

Ivee and Brandon in May of 2011. His end of treatment, going home to FL party. They were blowing bubbles, and having so much fun! 

 I sat in kitchen A of the RMH and was waiting for my coffee to finish brewing. Ivee and I had just moved back to Memphis after her second tumor resection.  I had been there for about 4 days and hadn't met anyone yet. It takes me a few days to take in all the people (people watch) and get up the nerve to make an acquaintance. Many people have already been there a while, and you have to see who's new, in the middle of treatment or about to leave. That, and not all people are approachable. It is not a frat house, it is a house full of children fighting cancer, and everyone deals with that differently. I had done this before. Lived this road, and I was okay just taking my time getting into our life for the next month and half at the RMH. As my coffee brewed, a beautiful, sweet, and petite South American lady approached me and began a conversation. Millie, I discovered, had only been there for a week with her baby, Brandon, and were our next door neighbors on the first floor of building B. 

Brandon, only a few months older than Ivee was battling a diagnosis of Diffused Intrinsic Pontine Glioma (DIPG). I watched for 6 weeks as Brandon and Ivee's relationship flourished. He would laugh and laugh at her. He thought she was so funny! He would let her use his remote controlled cars, but she had to always give them back. (He wasn't too happy when his mom gave one of his cars to Ivee as they were moving back home. He would still bring it up sometimes, Millie told me.) We would eat many suppers/meals together at the RMH. We would visit with one another in our rooms, and Millie and I would share our fears and frustrations. 

I watched Brandon, who was on an extremely high dose of steroid, starve as he couldn't eat until almost 2:00 p.m. everyday. St. Jude does radiation by age when it comes to sedations, and Brandon was among the oldest children for sedation. Everyday, Millie would wake up to a hungry child who wasn't allowed to eat, take him to the cafeteria and let him pick out anything and everything he wanted to eat once sedation/radiation was over. And once he was awake, he ate non-stop thanks to the hunger that the high does steroids gave him. 

Millie's light during this time was amazing, and Brandon was a huge fighter! We said good bye to our friends in May of 2011 and Millie and Brandon returned home to Florida. Millie and I texted, Facebooked and she would update her Caringbridge site. Brandon did well. Then by the end of September 2011, Brandon began to show symptoms of progression.  He had another MRI which indicated their worst fears. The tumor had began to grow again. They tried  3 different types of chemotherapies and given that they did not think it was working, they began re-irradiation at the end of December of 2011. 

Brandon lost his battle to DIPG at 6:24 am on March 31, 2012. A year from his diagnosis. 

My mind still thinks of Nini, as his family so affectionately called him. My heart breaks when I think of the laughter and life that was lost here on this earth, and the emptiness that Millie and Joe and their two other boys go through. But, when I think of Brandon, I see him in heaven making Jesus laugh, and sometimes I wonder if he still tells Jesus he wants his car back? Love to the Moseley family!!!! 

*Diffused Intrinsic Pontine Glioma (DIPG), is a rare malignant and aggressive type of brainstem cancer.  This cancer usually attacks children between the ages of 5 and 10.  The tumor cannot be removed given the location and the way it grows within the tissue.  There is no cure and treatment is limited to radiation.