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When Sam was first diagnosed with a Grade 4 brain tumor, Jere and I peeked at the Internet during those early days to find out about this dreaded disease.  It only took one day to find out that the Internet was not the place to be in our fragile state.  Everywhere we looked, it was hard to find survivors.  We were devastated.  And those that did survive were plagued with challenging side effects.  We made it a point to instead focus on Sam’s recovery and surround ourselves with positive thoughts and to stay away from the computer.  Jere said that he was sure there were survivors of this type of pediatric cancer, but families who had conquered it were not blogging about it, but were instead trying to get on with their lives.  I privately promised myself that I would continue to blog after Sam’s treatment and during his road to recovery so that if new families who were faced with this terrible disease went looking on the Internet, perhaps they would find Sam’s blog and realize that there is a life after Medulloblastoma.  Unfortunately, I’ve been terribly slow and have neglected Sam’s blog for quite some time.  Perhaps I too was ready to move along after Sam’s treatment; trying to get back to a normal life (our new normal)-one before cancer.

Where to begin!  So much to share since I last posted in September.  Was that almost seven months ago???  Geesh!  Well, let’s get right to it!!!

First up…Sam’s End of Chemo Party.  My cousins and close friends were wonderful and threw Sam the most fantastic end of treatment celebration that you could imagine.  It was a beautiful September night and the party was held outside in a cul-de-sac full of our friends, family and neighbors.  We had a DJ, a Balloon Lady, Face Painting, a Dunk Tank, a visit from a ladder truck from the local fire station and plenty of food and beverages to go around.  Sam made his grand entrance riding his “Ground Force Drifter” go-cart and crashed through a sign in his honor, followed by a swing of cold milk.  (This is Indy 500 country afterall!)  After Sam arrived, our family along with my Mom, sister Jessie and my Grandma said a prayer and released some prayer balloons.  It was beautiful.  Then it was time to party!

Also in September, Sam had his port removed.  Since he was now finished with chemo, it was no longer needed.  We arrived early one morning to day surgery at Riley for the hour long procedure.  Sam was a little groggy after coming out of the anesthetic in the recovery room.  He still always manages to share a smile…even if it is just a little one.  :)

After getting the okay to leave day surgery, we headed up to the Oncology Clinic for Sam’s Ringing of the Bell ceremony.  This is a little special celebration that takes place with the doctors and nurses after a child completes his course of treatment.  Nurse Sally gave Sam some little hedgehogs (his favorite animal) and nurse Robin presented him with a cookie with his initial on it.  Dr. Pradhan, Sam’s Oncologist, was also there.  Then Sam rang the bell three times signifying the end of his treatment.  It was very emotional for me.  I couldn’t believe he was finally finished!

Ring this bell,

three times well.

It’s toll to clearly say:

My treatment’s done,

this course is run,

and I am on my way!

When it was time to go home for the day, my friend and awesome photographer Kiera Dubach, followed us over to the Cancer Survivor’s Park to snap a few pictures.  Each time I would drive to Riley I would look at this park and say, “One day when this is over, Sam will have his picture taken there because he is a survivor.”  So, of course on the day that marked the end of his treatment and the fact that he was now cancer free, a photo had to be taken at this special place.

Now that treatment is “officially” over, Sam is still constantly monitored by his doctors.  Every three months he visits Riley for bloodwork (has to get poked like the rest of us since he no longer has a port) and a MRI scan to make sure that there is no tumor reoccurrence.  Sam had his first post treatment scan November 29th and his second post treatment scan March 17th and both scans were clean!  God is so good and we feel so blessed that our son is on the road to recovery from this devastating disease.

Stay tuned for our next post when we share with you our Make-A-Wish Party and Trip to San Diego!

Until then,

Erica, Jere, Jack and Sam

xoxo

Did you know….

Childhood cancers are the #1 disease killer of children — more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined. One in every 330 children will develop cancer before the age of 19. The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%. Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children. One out of every five children diagnosed with cancer dies. Common cancer symptoms in children — fever, swollen glands, anemia, bruises and infection — are often suspected to be, and at the early stages are treated as, other childhood illnesses. Three out of every five children diagnosed with cancer suffer from long-term or late onset side effects. Childhood Cancers are cancers that primarily affect children, teens, and young adults. When cancer strikes children and young adults it affects them differently than it would an adult. Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis). Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region. The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents). Nationally, childhood cancer is 20 times more prevalent than pediatric AIDS yet pediatric AIDS receives four times the funding that childhood cancer receives. On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year. On the average, one in every four elementary schools has a child with cancer. On the average, every high school in America has two students who are a current or former cancer patient. In the U.S., about 46 children and adolescents are diagnosed with cancer every single school day. That’s about the equivalent of two entire classrooms. While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer. Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is illusive. Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin’s lymphoma.

Now how can you help?

If you dine at participating Chili’s® Grill & Bar restaurants anytime on September 27, your meal will do more that stave off your hunger. It will help children battling life-threatening illnesses.

September 27 is the Big Day at Chili’s—when participating Chili’s nationwide will donate all profits to St. Jude Children’s Research Hospital. It’s part of Chili’s month-long Create-A-Pepper to Fight Childhood Cancer campaign.

September is National Childhood Cancer Awareness Month and with the Create-A-Peppercampaign Chili’s wants to make it easy for the public to support the research needed to find a cure for these deadly diseases.

In addition to dining at Chili’s on September 27, there are a number of additional ways for patrons to show their support for St. Jude.

• Make a donation to St. Jude and receive a Create-A-Pepper chili pepper coloring sheet. The decorated sheets are displayed in participating restaurants throughout September.
• Use a mobile phone to text HOPE to 90999 to make a $5 donation (Visitwww.createapepper.com for more details)
• Purchase a Create-A-Pepper customizable T-shirt or key.
• Buy a packet of Create-A-Pepper wrist bands. The flexible rubber bracelets are in the shape of a chili pepper.
• Go to www.createapepper.com to make an online donation or to create a pepper to post to your Facebook wall to show your support for St. Jude.
• Become a fan and donate on Facebook through the specialized Create-A-Peppertab on Chili’s Facebook page or create your own e-card atwww.createapepper.com to e-mail friends and family.

The first day of school was August 11th and the kids are settling in nicely!  Jack has made the move to the Intermediate School for 5th grade and Sam is back at his elementary school for 3rd grade. After weighing the pros and cons, we decided to let him move onto the next grade.  So far, so good!  Both boys are enjoying school so far!  Because of his continued bouts with nausea and his lack of energy and coordination, we have decided to have Sam be a car rider this year, at least for the first semester.  I think he likes being “chauffeured” around!  He has made it to school everyday, but has come home early a few times due to nausea/vomiting.  Yes, treatment is over, but the vomiting continues.  Now it seems to be somewhat of a psychological issue vs. a sickness issue.  After vomiting nearly everyday for close to a year and a half, I think his brain is having trouble finding the “off” switch.  Poor boy.  We are helping him work though this issue as best as we can.

First day of school snapshots

The staff at Sam’s elementary school is simply fantastic.  I could not have dreamed of a better school for him to be at during this challenging time in his life.  The love, the care, the understanding that they show him is a dream come true.  Everyone from the office staff, to his teacher and of course Mrs. Jacobs, the school  nurse, has been unbelievable.  There is no other place I would want him to be!

The other day, Sam’s third grade teacher, Mrs. Curia,  had the children do a writing activity.  She gave them a topic and asked them to write about it.  After the activity she sent along this email that I thought I’d share:

For I know the plans I have for you declares the Lord.  Plans to prosper you and not to harm you. Plans to give you hope and a future.

Jeremiah 29:11

We arrived at Riley to have Sam’s port accessed and then headed over to the MRI department for Sam’s 10:45am appointment.  They were running behind, so after waiting in the waiting room for a little over an hour, we were called back around noon.  Eddie, the MRI guy, had Sam change into some oh so fashionable hospital pants (his shorts had metal snaps on them) and positioned him on the MRI table.

Sam’s end of treatment scan was a full brain, full spine scan.  This is a baseline scan to compare to the scan at the start of his treatment and to act as a reference for future scans.  This type of MRI lasts TWO HOURS!  Sam was such a trooper, doing it without sedation and keeping perfectly still.  He amazes me.  I don’t know that I could hold perfectly still for that long.

After the scan, it was back up to the Hem/Onc Department to meet with Dr. Pradhan.  After the radiology department reviewed the MRI, the results were in.  CLEAN SCAN!  HOORAY!  This was such great news!  This scan didn’t worry me, for I knew that Sam had just endured eight rounds of chemo and was confident it had taken care of any lingering cancer cells that might be floating around in his body.  Yes. I had total confidence that this scan would be clean.  It’s the future scans, the ones that take place the farther we get away from rounds of chemo, that I’m sure will make me a nervous wreck.  But I have faith and hope that all future scans will be clean as well.  And it was time to celebrate!

Before we left, Sam made a stop at the Beads of Hope cart to retrieve one of his last beads…the end of treatment bead.  During Sam’s treatment, he received a bead for each process he went through during his treatment.  There are beads for MRI’s, beads for blood transfusions, beads for chemo, beads for clinic visits (he got a lot of those) beads for surgery, beads for hospital stays, beads for good days, beads for bad days, beads for holidays…..so many different beads for each step of the process.  When he began his Beads of Hope, he received his initials and a small silver bead that simply read “Hope.”  On Thursday he received another important bead-a butterfly.  How symbolic that this particular bead, the end of treatment bead, is a butterfly.  Just as a caterpillar begins his journey as one type of species, and soon is transformed into a totally different, beautiful creature-we feel we have undergone the same transformation.  Not only did Sam begin this journey with a cancerous brain tumor in his body and is now finishing treatment with no evidence of disease, he has undergone an emotional transformation as well.  We all have.  We are not the same people we were 14 months ago. How could we be?  We have learned many things about ourselves and others through this process.  We like to think we have become a more kinder, more understanding, more loving, more compassionate and a more faith filled version of our former selves.  This is not a journey we would wish on anyone, but do like who we have become.  Things that used to be important seem so small and insignificant now.  We truly don’t sweat the small stuff and are even more grateful for life’s simple pleasures.

On Thursday, September 2nd, Sam will return to Riley again for another milestone…surgery to remove his port.  He will be put under and be in surgery for about and hour or so and will be able to go home the same day.  Afterward, he will go up to the third floor to the Riley Hem/Onc department for his end of treatment celebration and the ringing of the bell.  We are so looking forward to it.  Stay tuned for some photos of the big day at Riley!

We were SOOOOOOOO happy and on such a high after Sam’s super end of treatment MRI scan that we were floating on Could 9!  And because of this high and state of euphoria, we were easily swayed and talked into something we were not yet ready to do.  Yes.  It’s true.  We caved and did this…..

A new puppy!  Meet Miss Roxy.  Or Foxy Roxy or Roxy Rue depending on the day.  She is a twelve week old Boston Terrier and is a little sweetheart.  The boys are having so much fun with her when she isn’t biting at their toes.  :)  The next morning Jere and I were looking at each other scratching our heads saying, “What have we done??!”  It is true- Champ’s passing effected us all in a way we didn’t expect, but we had vowed to wait and be dog free for awhile.  So much for that idea.

We had forgotten how much work goes into training a puppy.  But it’s been worth it when we see how much joy she is bringing the boys!

Don’t copy the behavior and customs of this world, but
let God transform you into a new person by changing the
way you think. Then you will learn to know God’s will
for you, which is good and pleasing and perfect.

Romans 12:2

Until next time,

Erica

Another trip to clinic for bloodwork since Sam’s counts were low the last time tests were ran.  Sam was on the borderline for receiving a platelet transfusion the last time we were in and Dr. Pradhan wanted to make sure his numbers were headed in the right direction.  Dr. Pradhan let us go home without a transfusion last week if we promised to keep Sam quiet over the weekend-no rough housing, no swimming or jumping into pools, nothing jarring-just resting and recovery.  Low platelets could mean internal bleeding, so it was important for Sam to keep a low profile until his numbers came up.  We were also told to watch for bruising, nose bleeds, and bleeding gums.  And of course, Sam had some bleeding gums over the weekend!  Gahhh!  Always something it seems!  After watching Sam closely and talking it over, Jere and I decided that Sam’s bleeding gums were the result of biting into a delicious chocolate chip cookie (made by me, thank you very much!) and not a platelet issue.  Sam had lost a tooth earlier in the week and we think that when he bit down on my delicious cookie, one of the chocolate chips or M&M’s hit right where he had lost a tooth, causing it to bleed again.  After rinsing his mouth and laying on the couch for a bit, we were happy to see that there was no more bleeding.  There were, however, more chocolate chip cookies!

Back at clinic on Tuesday, Sam’s platelets had risen to 27,000.  Still quite low, but no need for a transfusion.  His blood count had dropped too since the previous week, but again, not low enough to require a trip back to the infusion room.  Sam would be leaving today without blood products!  Hooray!  His ANC level, however, was a different story.  165.  Wow!  That is truly the lowest its ever been.  I feel like I keep saying that…”The lowest it’s ever been.”  Well, this truly is the lowest it’s ever been.  The longer you go through chemo, the longer it takes your body to recover with each round.  The drugs are powerful, but destroy the healthy cells as well.  With an ANC of 165, it was lockdown time again!  That meant, staying inside, no visitors, lots of hand washing and just a lot of waiting for the numbers to rebound.  We are all not a big fan of lockdown time.  Cabin fever can set in quickly.  However, with all the heat and humidity that we have been having here lately, we actually didn’t mind too much this time.  Sam will have his numbers checked again Thursday, August 5th when he is back at Riley for his End of Treatment MRI.  This will be an hour and a half scan of his brain and spine.  Please pray that it is clean!

Until next time,

Erica