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

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.

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

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

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

Day Seven of Sam’s Round 8 chemo cycle was just like any other day seven of previous rounds…pretty uneventful!  After staying the night in the hospital for the beginning of round 8, we made our way back on day seven for Sam’s second dose of chemo for this round.  This dose, a dose of Vincristine, is given on the third floor in Riley’s Out Patient Center, otherwise known as the ROC.  When we visit the Oncology clinic, it’s the same routine…weigh-in, get’s Sam’s height, take his blood pressure and temperature and then escorted back to one of the exam rooms for bloodwork.  We also visit with Dr. Pradhan or nurse Jayne during this time.  When the results of the bloodwork were returned, Sam’s numbers had dropped a bit.  His ANC level (infection fighting ability) had drop some,  but his platelets and blood count were low.  Over the course of his treatment, platelets had never been an issue, but after eight rounds of chemo and constantly being hit with heavy drugs, his bone marrow is feeling the effects.  It was decided that Sam would receive yet another blood transfusion and we would wait and recheck his bloodwork again in a few days to see if he needed platelets as well.  Daddy and Sam enjoyed three hours in the infusion room while Jack was at camp and I was visiting my sister and her family in Oregon for my nephew’s baptism.

DAY FOURTEEN-SAM’S LAST DOSE OF CHEMO….FOREVER!!!!

The smile on all of our faces this day COULD NOT be contained!  This was going to be Sam’s last dose of chemo, not only for round 8, but in his protocol.  He is finished with chemo.  I’ve waited forever to say those words.

This called for some celebrating!  First up, a little car paint!  Sam has been such a trooper and has shown such courage for the past 14 months-enduring brain surgery, radiation, 48 weeks of chemo, seizures, blood transfusions, scans, needle pokes-you name it!  I wanted everyone to know that this was his last round and wanted him to be recognized!  He loved the idea and even helped decorate the car.  He added a few happy faces and then just one word…DONE.  I think that said it all.

All the way downtown to Riley, we jammed to Sam’s ipod and waved with a smile to all of the honkers we passed.  I had to suck on my two front teeth from time to time to keep the tears from falling.  This was it.  Our last time headed to Riley for chemo.  Down at clinic, nurse Sally kept saying, “Hey Sam!  Do you know this is your LAST chemo??”  We were all smiling.  Yes.  We did know.  And you could see the joy on all of our faces!

Sam with Dr. Pradhan (we LOVE him!) and nurse Sally.  (We LOVE her too!)

Sam’s counts were down this round so we were asked to return the following week for more bloodwork.  That’s okay.  We are used to that!  After clinic we continued the celebration with a little lunch at one of Sam’s favorite restaurants-Charleston’s!  He loves their Mac N Cheese and their warm croissants. It was such a wonderful day filled with happiness and a sense of accomplishment.

I can do all things through Christ who strengthens me.  Phillipians 4:13

Picture of some of Sam’s fluid supplies.  Looks like he only had two days left in this picture!  Did I mention that he strongly dislikes receiving fluids?  Receiving fluids means having to have his port accessed, and we all know what a big fan he is of having his port needle in his chest!  It also means using the restroom a lot!   But we keep telling him, ” this is your LAST one! “

“It’s not how much you do, but how much love you put into what you are doing.”

-Mother Teresa

]]> http://ericarobinsonphotography.com/samsblog/end-of-fluids/feed/ 0 http://ericarobinsonphotography.com/samsblog/a-sad-day-day-2/ http://ericarobinsonphotography.com/samsblog/a-sad-day-day-2/#comments Fri, 16 Jul 2010 11:15:53 +0000 admin http://ericarobinsonphotography.com/samsblog/?p=1027 Upon arriving home, it was instantly obvious that our dog Champ had gotten worse over the past 24 hours while I was away in the hospital with Sam.  His foot that held his cancerous tumor had begun to ooze and bleed even more, he was licking it constantly, his leg and foot were now swollen, and he was favoring his bad leg.  Jere and I made the tough decision that it was indeed time.  We sat the boys down and had a gentle talk with them about Champ.  Many tears were shed by all.  He was so gentle with our boys when they were babies and they would constantly sit on him, pull on him, get right up in his face and use him as a step stool and he never seemed to mind a bit.   It is hard to say good-bye.

Champ was spoiled Wednesday night with lots of love, hugs and attention.  Jere cooked him a nice, juicy steak on the grill and Sam fed him an entire 1/2 pound of turkey from the deli.  (Oops!  A couple pieces of turkey as a treat quickly turned into the entire bag!)  What a feast!

Thursday morning, after a little walk out in front of our house, (his foot was far too swollen and he was too uncomfortable for anything more) it was time to say good-bye.  Jere loaded him up in the car and then they were gone.  Such a sad, sad day.

Good-bye Champ.   Thank you for all the years of unconditional love.  You have been a member of our family for 12 1/2 years and you will be greatly missed.

Meanwhile, nurse Renee began prepping Sam for his trip home.  After disconnecting Sam from his IV fluids, she cleaned his port site and covered it with a new bandage.  Sam was not a fan!  He will go home with his port needle since he will be receiving fluids for the next five days at home to continue to flush his kidneys from the chemo drugs.  He has severe “port anxiety” and hates when anyone touches it and guards it with his life!  He is so frightened that it will get pulled out or dislodged somehow and he is very protective of it.  (I think I may have failed to mention that this did indeed happen one time, so a little anxiety about it may be appropriate!)   It is not uncommon for him to try to wear the same shirt he is wearing when his port line is placed for the entire time he is accessed.  He wants no one near it.

He said the solution they use to clean the site was stinging him.  :(

Before we leave, we take one more stroll around the fifth floor, looking for Sam’s friend Jalyne.  Jalyne is Sam’s age and was diagnosed a month after Sam with the same type of cancer.  As we walk about scanning the rooms, it is hard not to become emotional at what I see.  Each room filled with children- some babies and toddlers in cribs, some Sam’s age and some in their teenage years-all with cancer and fighting this disease.  Most have lost all of their hair and they look so frail laying in their hospital beds.  The constant sound of IV’s beeping cannot be ignored.  I hear one nurse from one of the rooms remind a child to try not to touch his epidural.  A child in so much pain that he has to have an epidural???  Others are getting sick, others are trying to sleep and others cry out in pain or because they are scared.  These children should not be here.  They should be out enjoying the summertime sunshine, laughing, playing, swimming with their peers.  Instead, they are here trying to get well.  This has been our reality.

Finally we find Jalyne’s room and snap a couple of pictures of the two of them together.  They are so cute!

Can’t leave the fifth floor without a mask!

Sam realizes that this is his last chemo overnight in the hospital and is happy to tell everyone about it.  It has been a long eight rounds and it is hard to believe he is almost finished.  Two more chemo doses to go and he will be done!

Hugs,

Erica

Sam in the car on the way to Riley.

Once we arrived at Riley, Sam had his port accessed at 8am, blood drawn for labs to check his numbers, and then it was time for him to begin the testing he has at the beginning of every round.  First up, his kidney test.  Cisplatin, one of the heavy drugs Sam takes during his chemotherapy, has some nasty side effects, including kidney toxicity.  During this test, doctors inject a medicine into his port, lay him on an x-ray table and take pictures of his kidneys.  This test usually takes about 20 minutes.

Sam on the x-ray table during his kidney test.

After Sam’s kidney test, it’s up to the second floor to Audiology for his hearing test.  Again, Cisplatin can effect the hearing, so it is checked with each round.  During Sam’s round 4 of chemo, it was noted that he did in fact have some hearing loss, and therefore his Cisplatin was dialed back by 50%.  But after Tuesday’s 30 minute test, it was determined that there has been no change in Sam’s hearing from his last round.  Hooray!  :)

It was then time to head back to the third floor over in the Riley Out Patient Center, a place where we have spent so much time over the past 14 months.  As we waited in the waiting room to be called back for the results of Sam’s blood work and to begin his pre-chemo hydration, we were able to visit with other cancer parents.  Looking around, you can quickly tell that this is not your average “pediatrician’s” office.  Children of all ages and races sit about the room-many with no hair, some wearing masks.  Some have been on this journey just as long as we have, while others are new to the club.  These families have had their lives turned upside down by this terrible disease and are doing everything the can to help their child survive.

Sam’s numbers looked great for the beginning of round 8!  Sam’s ANC number was actually up to 1275…a SUPER number for him.  Everyone in the halls of the clinic congratulated Sam on beginning his last round and nurse Sally even began singing Kool and the Gang’s “Celebration!”  (I’m not so sure Sam was recognizing this song at first!  It’s an oldie but goodie I kept telling him!)  Everyone was also commenting on how much HAIR Sam has gotten since they had seen him last.  It is getting thick and he is loving it!

Finally, around 4pm, nurse Sally takes us up to the fifth floor.  A bed is ready for Sam and it is time to get him checked in up on the Cancer Unit.  Usually, Daddy gets the pleasure of staying overnight with Sam during his big chemos.  This is their special little time together as crazy as that may sound.

Daddy on the hospital phone ordering Sam something to eat from the Riley kitchen.  He says the food is just “okay!”

But this time, someone else got the honor of staying with Sam for his big chemo…ME!

Believe me, I have spent my fair share spending the night at Riley, but never for big chemo!  We played on the computer, watched quite a bit of Cartoon Network and did lots and lots of cuddling.  One of us also had to use the restroom A LOT due to all of the fluids he was receiving.  (Can we say about every 30-40 minutes including during nite-nite hours??  I felt like I had a newborn again!  )

Before big chemo began, Sam received a beautiful balloon bouquet from Aunt Jessie and Uncle Matt…Eight shiny happy face balloons-one for each round.  It really made his day and filled the room with some happiness.

Finally, it was time to begin Sam’s big chemo.  The nurse arrived and gave Sam two different kinds of anti-nausea medicines-Zofran and Emend, to try to stay ahead of the nausea.  She then began his first IV bag of chemo, Vincristine, which takes about 15 minutes to administer.  He receives this chemo down in clinic too, where they just push it through his port line, but up on the fifth floor, they are required to give it through IV.  After Sam’s Vincristine, he is then given three oral chemo pills-CCNU.  I am so glad I was there and not down at McDonalds getting a McFlurry for someone like I had been moments earlier, when they gave him his CCNU.  The day nurse forgot to log it into the computer that she had given him this medication and when the night nurse came on board, she tried to give him this chemo again.  Not good!  Parents, it is always such a good idea to look and read everything they try to give your child.  They are human too and mistakes can happen.  I’m just so grateful that I was there to double check everything.  A lot of times, if the order is written, nurses will just administer a child’s meds regardless if the parent is on a McFlurry run or not!

Next up was Sam’s Cisplatin.  This IV drug is run over a six hour period.  When I see them hang this bag and cover it with an amber colored opaque plastic bag,(to protect the drug from light and to also easily identify it as chemo and not just clear IV fluids) I have a love/hate feeling that runs through me.  I love that this drug has been created to help treat and fight the disease that could rob my child of his life.  But I hate the thought that as it destroys any lingering bad cells, it is also destroying the good cells as it can’t distinguish between the two, as well as makes him feel nauseous and wreaks havoc on his little eight year old body.  Lots of prayers are said, especially during this time, as I ask God to heal Sam and ask that this truly be the last time he will have to receive this drug.  Even at round eight, it can be emotional.

Day Zero.  That is what they call the first day of a new round.  Each round is 42 days long, with the first day being counted as day zero, the day the chemo begins.  We are beginning the end of Sam’s chemo journey.  It is both a wonderful feeling and a scary feeling all at the same time.  Thoughts of moving forward, healing and getting on with his eight year old life is so exciting.  Fear of being off chemo and the possible return of Sam’s tumor is petrifying.  But as Jere says, “We win each day and let’s focus on today and not worry about tomorrow or what COULD happen.”  Your mind is so powerful and if you are not careful and keep it in check, it can get the best, or in the case, the worst of you.  So positive thoughts for Sam and lots and lots of prayers!  Sam is so lucky to have such a strong, powerful group of prayer warriors!  Thank you so much for every single prayer.  We are truly blessed.

Lord, you know all my deepest desires and fears.  I turn to you today, trusting that you will hear my prayer and answer me.

Stay tuned for “Day One” update coming soon!

Hugs,

Erica

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