Our Journey - Part 2

Sometimes, when I struggle to find a "reason" for everything that happened to Joey and our family over that 14 months he was sick, I think that without Joey and his illness and this Caring Bridge journal, I probably wouldn't be blogging today.

And as silly or trite as it may sound, although writing is good therapy for me, I hope my tiny little blog will touch someone and affect the way she lives her life.

Make her understand what someone else might be going through.

Make her know that she is not alone.

Make her feel like someone understands her sorrow or her joy.

Make her feel "normal" despite all the things she thinks are wrong with herself or her life.

Or in the very least, tell someone an interesting story.

Written Jun 1, 2009 9:34pm

Keep Us Safe and Well
Ahh, the beginning of summer.  I know some moms who dread it - being with the kids all summer long drives them nuts.  Some of my teacher friends get part time jobs so they don't have to be with their kids all summer long.
How sad.
I am always excited about summer.  We're all together.  We can go on little day trips to places we've always wanted to "check out."  We can take classes and lessons and not worry about the weather affecting our plans.  We can do things without hurrying back to take someone to school.  We can be gone an hour or all day.

The end of the school year a couple weeks ago was so bittersweet, for me at least.  It felt too much like an end and less like an exciting beginning.  The whole family, including Grandma and Papa, went to all three boys' last day of preschool parties.  We breezed in to Joey's on Friday afternoon, all smiles and camera at the ready.  Chapel time was first, and the children sang a song they had been singing for the last several months.  As their sweet five-year-old voices carried the words to my ears, my eyes began to well up:

"Oh you gave me a heart, and you gave me a smile,
You gave me Lord Jesus, and you made me your child.
But I just thank you, Father, for making me ME."

I thought of my sweet, precious Joey, with his beautiful heart and vivacious smile...and his brain tumor.  Obviously, so not thankful for that...
Then, as his wonderful teacher always does, she ended chapel time with the same prayer.  I knew the words that would end the prayer:

"Keep us all safe and well over the summer, until we can see each other again."
They are just words, right?
No, because someone among us is not safe and well.  There was no way I could hide my tears, and I didn't even care.  As I said emotional good-byes to the teachers, it felt so permanent, even though Adam will still attend the same preschool for the next two years, as will Colin eventually.  It struck me as such an abrupt end.  Will Joey even be well enough to attend kindergarten in the fall?  He loves school so much - he has loved every single minute of every day he was there.  The teacher in me feels that bond with him so strongly that I am anticipating the pain of possibly missing the first day of kindergarten, even the dinosaur camp he is signed up for in July.  At least he was able to finish his time at preschool.

Written Jul 21, 2009 9:50pm

A Steroid Story
I hate steroids.

I appreciate what they are doing for Joey - reducing the swelling in his brain, keeping the headaches and nausea at bay.  He has not complained of a headache or vomited in almost a month.  For that, I am grateful.

I despise what they are doing to him.  I knew he would become puffy and bloated.  I didn't realize that he would gain five pounds in two weeks.  I knew his hunger would increase.  I didn't realize that all he would think about would be food.  He is constantly planning his next meal or snack, judging time by what meal comes next.  He helps make dinner now every night.  I think, perhaps, it is to make sure he gets exactly what he wants to eat.

And what he wants to eat is sometimes appalling as well.  My sweet five-year-old boy has developed the appetite of a 20-year-old linebacker.  The boy whose favorites once included Goldfish crackers and fruit, now craves salty meat, heavy carbs, and cheese on everything.  One day for lunch he wanted a cheese hot dog, salami, turkey and potato chips.

We have always been a family that has loved our snacks.  But our motto is "everything in moderation" balancing this with healthier fare - fruits, vegetables, lean meats.  I became concerned with Joey's increased appetite, weight gain, and strange cravings.

One day, we had just arrived in the hem/onc clinic.  I spotted a mom pushing a double stroller.  In front of his baby sister was a boy of about four with a sour look on his puffy and bloated face.  The nurses were telling him good-bye, asking him if he was glad to be done for the day.  He remained silent, and his mom answered for him.

"Oh, he is happy.  He just wants to go home and have a piece of cheese!"

I had to smile in spite of myself.  Here was a woman who understood, and someone else was going through it, too.

That day, I voiced my concerns about Joey's weight gain and strange cravings to the nurse.  She shared with me stories of other children whose steroid experience was very similar to Joey's - of a boy who would only eat Gardettos, of a two-year-old who sobbed inconsolably until he had been given macaroni and cheese.  The stories made me feel a little better, but I still asked if I could have a consult with a nutritionist.

In the meantime, Joey had noticed his tummy getting bigger and had asked why he was so hungry all of the time.  Rick and I began to make him aware of how much he was eating in one sitting (of which he is unaware, also partially because of the tumor).  Joey began to ask how a person loses his big tummy.  "By eating healthy and exercising, " I replied.

The nutritionist suggested we keep a food diary for Joey so she could give us some suggestions.  Knowing Joey would be eager to please, I told him of the plan.  He began to choose healthier snacks and was conscious of stopping with sensible portions at mealtimes.  I decided on Sunday that we would take short walks after dinner.  Joey walked, rather rapidly, most of the way, riding in the wagon when he became tired.

These past two days, he has seemed to have more energy, more smiles.  Today was our long Tuesday, appointments with the neurologist and oncologist, as well as radiation.  The neurologist increased the Siminet, as he is having no adverse reactions to it, and it has helped his hand tremor slightly.  I was pleased that the oncologist decreased the steroid!  He is now down to 4 mg a day.  Hopefully this level will not allow
headaches to form again.  At radiation, a male technician named Ryan, who hadn't seen Joey since we shaved the back and sides of his hair, asked what he thought of his new hair.

"He doesn't mind," I said, which is true. "His dad doesn't have hair on the top of his head, so together they make one complete head of hair." This garnered a hearty laugh out of Joey, and his smile continued as we walked outside to the car.

Once free of the doors, Joey broke into a run.  I could see what was going to happen before it even occurred.  Joey's upper body was going much faster than his legs were moving, and in almost slow-motion he plunged forward.  I froze on the spot and yelled, "Joey, stop, you're going to fall!"
He ran about three more steps before he fell flat on the concrete, arms and legs splayed in all directions.  I dropped my purse and ran to him.  As I approached him, he was already pushing himself up, rubbing his stomach and groaning.  Remarkably, neither his knees nor hands bore any marks of the fall.  His distended stomach had received the brunt of the fall.

After asking him if he was okay, I asked why he had run, thinking he would say he was happy or had more energy today.  He looked up at me with his droopy eyes and said, "I just wanted to get some exercise."
I wanted to drink a vial of poison.  I hate what steroids are doing to me...

Tonight, after dinner, Joey was so tired.  He was falling asleep in his dessert.  I asked once if he wanted to go for a walk, but he said he was too tired.  I did not push the issue.

I'm not going to let steroids change us.

Written Aug 24, 2009 10:20pm
Kindergarten-Should really be self-explanatory, but for us, it's not...Ahh, the start of school.  Something that all parents begin to look forward to on about August 1st.  Moms all over the country celebrate the departure of their children for the day.  Kindergarten moms get together for "boo-hoo breakfasts," veteran moms revel in a chance to go to the grocery store sans children.  It's an exciting time of year for everyone - fully stocked school supplies, brand new shoes, and crisp un-stained clothing (please refer to my Facebook status!).
Ever since I found out that we were having twin boys, I dreamed of this day. No, not because I couldn't wait to get rid of them, but because I just knew they would take care of each other in school.  They would be the best of friends, have all the same friends, and do everything together.

I never dreamed it would be so different. 

I began buying school supplies in June.  With Joey feeling so sick back then, I had no idea if I would be able to shop once school neared.  I bought a few items of their required uniform, but again, I had no idea if Joey would even be able to go to school.  As it became evident that he would be able to attend, I realized that the clothes I had purchased for him would no longer fit his new body.  I left one uniform store in tears, as nothing I found fit over his burgeoning steroid belly.  Needless to say, he did attend his first day dressed in the required clothes.

We chose to send both Joey and Jack to private school.  We both attended parochial schools, and felt it was important for our boys as well.  A year ago, I wondered if Jack would be able to handle it, if a parochial school would be able to support Jack's IEP (Individual Education Plan) For those of you who don't know, Joey's brother, Jack, was born with a cleft lip and palate.  He attended an Early Childhood Special Education program for speech and language.  We toyed with the idea of keeping Jack in public school but decided that since Joey would be there to help him, we'd give private school a try.

For almost a year, I stressed out over our decisions, over whether the boys would actually be accepted to our school of choice, whether Jack would be able to succeed. I set a meeting with the principal to discuss whether she thought that Jack's needs could be met.

Just three weeks after Kindergarten Round-up, everything changed, and I was meeting with the principal to see if Joey's needs could be met.  All summer long, every time Joey mentioned kindergarten, I got a sick feeling in my stomach.

Last Tuesday morning, everything was ready for school - backpacks, uniform clothes, new shoes and socks.  Joey had been asking all summer when school would start.  He loves school!  Jack, on the other hand, kept telling us he planned on being sick the first day because he "didn't sign up for kindergarten."

I asked Rick to go into work late that morning so he could bring the boys to school with me.  Joey went right in and sat down, fitting in perfectly but for his mostly bald head and bloated tummy.  As I was leaving the room and turned to look one more time, I caught a glimpse of something that finally made me cry as I exited the room: 29 children sitting perfectly in their desks and one child already out of his seat and walking around the room.  It was Jack whom I cried about.  I knew Joey would do fine as far as school goes, but Jack is on his own, to be someday without the ally I always thought he would have.  I cried because here it was, so different than I always thought it would be.
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