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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’s second grade school year has come to an end!  School’s out for summer!  And even though he didn’t attend many full days of school because of doctor’s appointments, hospital stays, or because he was just feeling crummy from chemo, he will be moving onto third grade with the rest of his classmates.  :)  And just because school is out for the year doesn’t mean the school work has come to an end!  Sam has been busy during these sweet summer days writing in a daily journal to practice his writing skills and doing a little math practice here and there.  He’s so bummed that his mom used to be a teacher!  :)  Sam’s sweet second grade teacher, Mrs. McKinney, sent home a summer journal with each one of her students this year, challenging them to write at least 20 good entries over summer break.  With journal in hand, they are invited to meet Mrs. McKinney at Dairy Queen for a mini reunion and a yummy ice cream treat before they head back to school in August.  At first, Sam was a little bummed that he might not be able to participate, stating…”But Mom, I won’t be able to eat the ice cream because my counts might be too low.”  (When Sam’s counts are low and his immune system is not at its full fighting power, Sam has been told to stay away from ice cream machines that could harbor bacteria and cause him to become ill.)  That’s when I was happy to remind him, “But Sam, in August you will be finished with chemo!”  I wish you all could’ve witnessed the biggest smile ever that crossed his face!  A smile that told me that he saw a light at the end of this tunnel, a smile that told me that he realized that there was an end in sight, a smile that brought tears to my eyes!  Yes Sam, you are almost finished!

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

Another round down!  Sam’s sixth cycle of chemo is over and we are so happy to check it off our list.  Sam’s body took a bit of a hit this round with his ANC level (infection fighting ability) hitting 300…the lowest it’s ever been.  Because of this, Sam was on lockdown for a few weeks as his body and immune system tried to rebound.  No public places, no visitors, lots of hand washing and hand sanitizer….we all know the drill! We even had to skip a very special event hosted by Scott Crosby of Avon’s Picture This Photography.  Scott, an incredibly talented photographer, has been generously doing fundraising through his studio for children with cancer.  Sam was selected for his fundraising efforts for the month of March and we were suppose to head down to his brand new beautiful studio for a check presentation, but needed to cancel due to Sam’s low immune system.  We are so grateful for his generosity and cannot wait to meet him in person to express our gratitude!

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

Mother’s Day weekend, with our family in town, Sam celebrated his First Communion!  Time to get dressed up for the special day with a little help from Dad…

Then it was off to church to receive the Eucharist for the first time along with lots and lots of other second graders.  Sam wasn’t so sure about the taste of the Host, saying it tasted like cardboard!  After the Mass, we headed back home for a cookout and some cake to celebrate Sam’s special day!

I’m sure it’s happened to you before.  A moment or event that comes along that is just completely overwhelming and wonderful and you pause and say to yourself, “Wow!  This is amazing and something I will never forget.”  And yes, it just happened to me here recently and I’ve been so excited to blog about it and share it with you.  (And I can’t believe I’ve allowed so much time to pass before I’ve written about it!)

As many of you know after reading Sam’s blog, my Uncle Tim, Sam’s great uncle, decided to donate his time and do something special by participating in a four day multi-state run from Memphis to Mobile to help raise money for St. Jude Research Hospital.  Well, I was fortunate enough to make the trip down to Mobile, Alabama to see him cross the finish line.  What a moving experience this was for me!  Truly!  I was bursting with pride for my Uncle Tim and was overcome with emotion.  Believe me when I say I had to suck on my two front teeth quite a bit that day to keep from bursting into tears every five minutes.  It seemed that every time I turned around someone was giving another a high five, a big hug, words of encouragement…..the mood in the room that day after the runners crossed the finish line and entered into a space for a post run celebration was electrifying!  I’m serious!  If I could’ve bottled up that positive energy and taken it home with me and spread it all around, I would’ve in a heart beat.  To see so many people come together for a great cause was very moving.  You would’ve wanted a piece of it.  And many of you were a piece of it with your generous donations.  Thank you so much for supporting my Uncle Tim and all children battling cancer.

I wanted to share with you a few photos from the event.  I traveled alone, as Sam’s numbers were too low to travel, so Jere and Jack stayed back with him.  This short two and half day trip was actually a nice little break for me as well.  I stayed at my Aunt Shelia and Uncle Tim’s house and was able to visit with my Nana Mahoney and even got to see my Aunt Meg and Emedio who were passing through on their way to the Bahamas.  It was wonderful.

First up, a few pre-event festivities.

Now, this is a southern thing I was told!  The lovely ladies below are in a group called “The Azalea Trail Maids.”  They are a group of 50 high school senior girls who wear beautiful antebellum costumes and serve as “Official Ambassadors” to the city of Mobile.  They are true symbols of Southern Hospitality and were so, so polite.  Every time I spoke with them, it was, “Yes Ma’am” this and “No Ma’am” that.  It made me feel kinda old!  HA!  Anyway, I guess it is a real honor to be selected for an Azalea Trail Maid.  I found all of it quite interesting!  :)

And speaking of interesting, get a load of the gang pictured below!  Even though Madi Gras was back in February, it didn’t stop this crew from dawning their costumes to welcome the runners home.  Did you know that Madi Gras actually originated in Mobile, Alabama but New Orleans gets all the credit?  Just a little cocktail trivia for ya…

Me and my Aunt Shelia waiting for my Uncle Tim and the other runners to arrive.  Please note the beads we are wearing; a gift from some of the characters featured above.  Apparently, these are really great beads to receive because they have been “customized” with the groups name on it.  Right Aunt Shelia? !!!  :)

As the runners approached the finish line, they were led in by a really neat local band.  It just set the mood and there was just so much excitement in the air.  It was so neat to see all the runners being led in by this band, getting a heroes welcome (as they should!) with big smiles on their faces.   And believe it or not, I had to suck on my teeth during this part to keep the tears from welling up.  And the event was just starting!  Geesh!  I knew it was going to be a long afternoon!

And who was there right in the front, leading the charge?  My Uncle Tim!  The smile on his face was so contagious and you could just feel his happiness and sense of accomplishment.  I was so proud of him!!!  As he made his way through the crowd, he held in his hand a $100 bill that someone had given him on the street that pushed him over the $10,000 mark for donations.  IMPRESSIVE!!!

My Uncle Tim greeted me with a HUGE smile and a great big hug and as he passed by, I saw this…

And then he showed me this…

And suddenly sucking on my teeth to keep the tears at bay didn’t work anymore.  I was so touched, so moved, so overcome with emotion.

We headed inside for some food, drinks, an award ceremony and slideshow.  Toward the end of the event, they called up my Uncle Tim to present him with a certificate and a special tie.  Receiving this tie is a special honor and it was given to Tim who raised the most money for the event.

The St. Jude Memphis to Mobile group even called me up to give ME an award for coming to the event.  The certificate even had Sam’s picture on it.  Can you believe it?  I didn’t do anything but show up! The even featured Sam in their slideshow.  Again, tears.  I’m such a cry baby.

As I looked around, I was humbled by the people who took the time out of their busy lives to do something for the good of others…raising money for research to help find a cure for childhood cancer.  It also inspired me to do something for the hospital that has done such an amazing job caring for Sam.  Who knows what it will be, but I will do something.  It’s hard not to after witnessing such an event.

I’ll close by leaving you with the email letter Uncle Tim sent out after his run.  Thank you Uncle Tim for everything.  You are amazing and I am so humbled and speechless over your giving spirit.  Love ya!

Hebrews 13:16

And do not forget to do good and to share with others, for with such sacrifices God is pleased.

Hello Everyone!

The inaugural Memphis to Mobile run (aka: M2M1) for St. Jude is in the history books; by all accounts, it was a smashing success!

For the children of St. Jude, when all the numbers are in, it looks like we will have raised about $100,000 for the hospital – pretty darn good for a first time event! I’m proud to say, that with your help, I raised slightly over $10,000 of that total amount.

For the local chapter of St. Jude (St. Jude on the Bay), this event could have been a logistical nightmare – the number of details that had to be coordinated were unbelievable. Safety considerations for the runners were constantly being monitored and that whole aspect was a job in itself. However, the organizing team did a great job and the entire event went off very smoothly. From the transportation to the food to the post-run celebration, it was all good!

For me personally, I can honestly say that this was a life-changing event. I entered into this whole thing with good intent and knowing it was for a great cause, but really had no idea what I was actually signing up for! Never in my wildest dreams did I expect it to impact me like it has. The tour of St. Jude hospital was incredible, inspiring and humbling. The people who shared this experience with me started out as strangers and are now considered close friends. The incredible generosity shown by your donations has renewed my belief that there are many more good people in the world then there are bad, and that those people will support a worthwhile cause.  I have been given the opportunity to be part of something very special, and I have just a few memories from the trip to share with you:

• The first night out, Thursday, I was running at three o’clock in the morning, into a constant 15-20 mph headwind, with a lady I did not even know 24 hours earlier, through the back roads of Mississippi, listening to my Bob Seger running tunes being blared out from the chase van to keep us motivated – a surreal moment to say the least.
• Earlier that day, as we had a ceremonial start to the race from the front doors of St. Jude hospital to the campus gates, I looked down and saw a 4 year old girl running with us. She was laughing and giggling like any healthy child, except that she was a St. Jude patient who only had tufts of hair, the rest having fallen out due to her chemo treatments. She was, for the moment, unfazed by her chemo treatments and enjoying being able to run with us. Suddenly, my troubles seemed very trivial.
• Our final day on the road, Sunday, four in the morning, showering in the Citronelle (small rural community north of Mobile) Police Station – don’t get to do that too often!

There are a ton of other memories as well, too many to mention here.  I’ve attached an email that has a link to over 200 pictures of the trip on Snapfish. I know that is a lot of pictures to scroll through, but be comforted by the fact that  I didn’t even upload all of them!  I tried to select ones that would give you an overall flavor of what this run was like. Just open the attachment and click on the link. You need a Snapfish account to view them – but it’s totally free.

Mobile plans on making this an annual event and I suspect I will stay involved – it would be hard not to….

Thanks again for supporting the children!

Cheers,

Tim