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

]]> http://ericarobinsonphotography.com/samsblog/the-beginning-of-the-end-day-zero/feed/ 4 http://ericarobinsonphotography.com/samsblog/round-seven-done/ http://ericarobinsonphotography.com/samsblog/round-seven-done/#comments Tue, 13 Jul 2010 10:41:20 +0000 admin http://ericarobinsonphotography.com/samsblog/?p=974 Where oh where did the time go?  Round seven of chemo began June 1st and I haven’t blogged about one single day of it!  Things have been busy here at the Robinson household.  Summer and summer break are in full swing and we have enjoyed doing a little here and there as Sam feels up to it.

Round Seven began very well with Sam’s counts beginning higher than they ever had been at 1400!  Hello!!!!  That is amazing for him and we haven’t seen them that high in months!  Sam completed the hospital portion of his round like a trooper and spent plenty of time on the laptop, playing games, watching tv and catching some zzzz’s while he was stuck in bed.  Upon beginning the round, however, his hemoglobin numbers were a bit low and it was decided that Sam would receive another blood transfusion before he left the hospital.  This was new for him.  Sam has received blood many times before, but usually during week three of his chemo cycle.

Sam when home with five days worth of fluids and did very well that first week or so.  But soon he began to vomit… quite a bit more than he usually does.  And after getting sick 19 times in five days and talking with the nurses and doctors many times down at clinic, it was decided that Sam would benefit from receiving some additional fluids to help rehydrate him.  When we arrived at clinic, Sam’s labs were taken and we were escorted into the infusion room to begin receiving fluids for a couple of hours.  This usually perks him up a bit.  When the lab results returned, we learned that his ANC level (infection fighting ability) had dropped from 1400 when we began round 7, to 200….a new low for him.  This meant Sam was neutropenic and therefore had to be on lockdown at home to protect him from getting sick.  Lots of hand washing and hand sanitizer followed for awhile to make sure that Sam didn’t catch anything while his immune system tried to rebound.  He was very bummed to have to stay inside while the summer fun continued on without him.  He was also very bummed, and even cried a little bit, that he had to go home with his port needle inserted into his chest and receive an additional five days of fluids and home.  Sam HATES his port needle.  HATE may even be an understatement.  He feels like he cannot do anything while it is in and moves about the house like an 88 year old man when it is in.  But after five days of fluids and lots of rest, he was feeling so much better.  Because his counts had gotten so low, Riley wanted to be sure that they were headed in the right direction as he began to feel better, so we made lots of trips downtown to have his counts checked.  Slowly, they began to rise…first 200, then 440 and then 800.  Still quite low, but they were slowly improving.  Again, we were told to take precautions to help protect him from getting sick or getting a fever.

The rest of the round when pretty smoothly.  Sam has been able to enjoy a bit of playtime with friends and a little swimming.  Sam loves to swim, but has been a little hesitant to do so, saying his upper body strength is not near what it used to be and doesn’t feel that comfy in the water.  He’s been spending quite a bit of time in the shallow end!  We have also bought him some swimmys to help build his confidence in the water, although he has elected not to try them out yet.  Sam also decided to try to ride his bike during this round!  This is HUGE for him, since he has had balance issues since beginning his chemo.  During Sam’s weekly physical therapy sessions, balance is one exercise they work on.  And knowing that Sam is only able to stand on one foot for four seconds, it scared me a bit when he decided to try to ride his bike and balance on two wheels while rolling on pavement.  :)  I asked him if he would like for me to put on his training wheels during his first time out, and he said, “Nope.  I can do it without!”  So with me a nervous wreck running behind him holding the back of his bike seat, he took off down the street.  Once he steadied the wheel, I slowly removed my hand and off he went!  He was doing it!!!!!  I could not believe it.  I got teary eyed watching him ride wobbly down the street with a huge smile on his face.  ”Are you proud of me, Mom?”  he asked.  ”I’m proud of myself!”  Ughhhhh!  You have no idea Sam how proud I am of you!  Not just because you were able to ride your bike, but for so many other reasons.  :)

On a side note, our family pet, our 12 year old Boxer, Champ,  is not doing very well.  A few months ago we noticed a lump on his hip and then a growth on the top of his foot.  After taking him to the vet and running some tests, it was determined that our dog has cancer.  We have not used the “C” word when describing Champ’s growth with the kids. Doctors had said this will be the end of him and we do not want to associate that just because you have “cancer” you die, although Jack and Sam are fully aware that some fall to this terrible disease, and have even been reminded of that a few times this year, unfortunately. But during this last week, Champ’s foot has gotten worse and after yet another trip to the vet, it is time for us to make a very hard decision.  It is heart wrenching to have to make such a horrible decision. Jere and I are struggling with when would be a good time to take him in, and I’ve decided that there will never be a “good” time.

So, that’s it.  Round seven completed.  Today we will go to Riley in about two hours to begin Sam’s last round of chemotherapy-Round 8.  He knows this is his last round and you can tell his demeanor has changed as he knows the end is near.  I’m making it a goal to write all I can about his last round and blog often.  We will see how that goes!  His last round.  I can’t believe it.  And sometimes I have a hard time saying “this is your last round”  thinking it is bad luck to say it is his last round.  I pray that it is.  That is all we can do.

Don’t worry about anything; instead, pray about everything.  Tell God what you need, and thank him for all he has done.

Philippians 4:6

Thank you for all of your love and prayers as we begin this last round.  We love you all so, so much!

Erica, Jere, Jack and Sam

Sam was lucky enough to have the best school nurse in the world!  I mean it!  Mrs. Jacobs is the kindest, most caring person you will ever meet and just the person we needed to care for Sam when he was at school.  Never, ever did I worry about him while he was away because I always knew Beth would take the best care of him.  Many hours were spent in her office this year, laying on her little green couch bed, comforted with his fleece Sponge Bob blanket and his own personal pillow purchased by her.  When Sam was in her office, she worked by a little desk lamp, so the big overhead lights would not disturb him.  She also had plenty of snacks in her office to offer him when he was feeling up to eating.  Sam loves Mrs. Jacobs!  She is an angel and we will be forever grateful!

Sam and Mrs. Jacobs on the last day of second grade!

The school year ended before we were able to snap a picture of Sam’s wonderful second grade teacher, Mrs. McKinney!  What a blessing it was to have her as Sam’s teacher this year.  Her kind and caring spirit radiated each and every day.  Sam LOVED going to school.  We will be sure to catch a picture of her when we see her again at the end of summer at Dairy Queen…when Sam is enjoying his ice cream treat with the rest of his old classmates!

Until next time,

Erica

Sam also received another blood transfusion this round and continues to struggle with vomiting…almost everyday and sometimes multiple times a day.  Ugh.  It really wears on all of us emotionally, but especially Sam.  It just breaks our heart to watch him struggle daily with nausea and getting sick.  He continues to be nervous about eating and therefore doesn’t eat much.  But we are almost there, almost finished, and we hope that with the completion of chemo his vomiting days will become less and less.  Please pray for his strength as he continues these next two rounds.

Round Seven is up next, complete with hearing test, kidney function test and an MRI.  Please pray that everything goes well.  MRI days are always especially nerve racking as we continue to pray for a clean scan.  If Sam’s ANC levels are steady, he will be admitted to the hospital Tuesday, June 1st for his big chemo.  And so the cycle will begin again.

Until next time,

erica