headaches - schmedaches

Since the beginning of the year Joshua has been experiencing headaches and leg pains. At the beginning of the year there were more headaches then anything. His teacher and I had to keep a journal so I could report them to the doctor at January's visit. Two different doctor's looked him over and they sent us home with instructions to call them if the headaches persisted over the next week. The one doctor felt swollen nodes on his groin, but Dr Wollman didnt say anything about them this month and I didnt ask.

The headaches are appearing in the same fashion as the headaches he got last year when his spinal pressures were high. The doctors were concerned though because since he's not on chemo anymore, they tell me his pressures shouldnt be up. They said if continued or got worse they would order another MRI to check for fluid or pseudo-tumors.

His headaches did continue, but since they didnt increase in intensity, they decided to wait until his visit this month. One this is for sure, joshua is very resilient and doesnt like for things to get him down. He lives to play and plays to live!

His last visit was on Kenni's birthday, the 24th. While his headaches have seemed to taper some, he has had an increase in leg pain and even complained of his shoulder hurting on one occasion. I have to tell you, since leg pain is how Joshua presented with the cancer in the beginning, this has made me a nervous wreck lately. It's ironic, on one hand being chemo-free is so liberating and dont get me wrong, I am so happy for Joshua, but the security of the chemo keeping his leukemia at bay is gone and I cant help but think about him relapsing at every sneeze, bruise, or 'growing pain'.

The risk of him relapsing is greatest around the first year mark, so hopefully as that passes my nerves will be put to ease some. I have talked to other cancer-moms and turns out this feeling is common and it does indeed lessen as the years build up between the off-treatment date.

Anyway, Josh has also been fighting a cold since January - turns out he has Bronchitis. Hopefully that is where his headaches are coming from. They cant explain the leg-pains yet, but they are going to hold off on any Lumbar Punctures or Bone Marrow Biopsies as to reduce any unnecessary stress to Josh just yet. So far his [blood] counts look good and his platelets are holding strong, so that is very reassuring! So I'm going to take a stance on this kinda of like Joshua in the picture above - one BIG FAT PHEWY to Cancer - enjoy each moment!

Six Pack Fever

Here We Go Steelers
Here We Go!

The weekend started out with the kids' school spirit day. They werent allowed to paint their faces, but we found a way around that! Joshua had on his Polamalu jersey and carried his picture of the Steelers and him taken a few years back when Josh was inpatient. Remember we had tried to get Troy to sign Joshua's bald head, but his 'handlers' would let him. :shrugs: Halie was all decked out in her Steelers gear and even borrowed my scarf. At this point, I think Joshua thinks the Steelers are in the Super Bowl every year! Woo Hoo!

Sunday came and the pre-game festivities started before the last member of our zoo had their teeth brushed! I painted my face, Halie painted hers, we painted both the boys and even my mom got in on the action! Kenni and Kaitlynn were the lone party poopers, but not for lack of us trying ;-)

The boys' favorite part of the whole game were the 3D commercials. Jon's favorite part was the food and heckling me. I sat on the edge of my seat and by the time the game ended I didnt think I would be able to stand without my knees buckling. I swear this is true. I dont know how the players themselves held up - I was a nervous wreck! We were all doing the happy dance when Big Ben threw that pass to Santonio in the last seconds - way to go Boys!

A little late for Christmas

Josh lost his two front teeth!

We were sitting at the table eating dinner -- pizza -- when Josh made a funny face, exclaimed that his tooth "broke" and spit it in his hand. Sure enough his bottom right tooth fell out on it's own. I had been wondering when it was going to happen. A lot of his kindergarten friends have lost their teeth, and remember Josh is one of the oldest in his class due to us pulling him out of kindergarten last year. But his teeth are extremely small caused by him grinding his teeth as a side-effect of one of his chemos.

So we checked his other tooth and sure enough it was loose too! Joshy would NOT let us try to pull it for him (to Jon's dismay), not for any amount of bribes.

And we tried!

But after a lot of suggestions from his sisters, and coaxing from Jon and Nathan, Joshua pulled the second tooth himself!

They really were ready, you can already see his adult teeth popping through. He was excited to go to sleep that night and wait for the tooth fairy. He woke up in the middle of the night and woke me up to let me know she had come.

FIVE WHOLE BUCKS he made. Our day started early the next morning as Joshua had an appointment in Pittsburgh, and he was excited and proud to show his doctor his missing teeth! All day his mind was focused on the money in his pocket and he badgered me to take him to the store to buy a Ben 10 toy!

He's all ready to pull the other ones and keeps checking for loose ones daily. He's figured out he has a gold mine in his mouth!

Josh has been Deported!

Have you ever wondered what the little bump in Joshua's chest was? Did you ever wonder what it looked like? Well today's your lucky day - and Joshua's! Yesterday he had his surgery to remove his "tubie". He is still a little sore, but he is more proud of his battle scars and more interested in showing off his port, that his pain isnt anything a little Tylenol isnt taking care of.

We didnt have to drive all the way to Children's to have his port removed. The hospital has a Same-Day Surgery Center in Wexford, that is about 20 minutes closer than Pittsburgh. It was nice because it is much smaller, more intimate and we didnt have to run from one floor to the next for pre-op and post-op recovery like we were used to doing in the Hospital. Josh enjoyed the different selection of toys they had to choose from!

Once again, I forgot my camera, but I did take some pictures with my phone. I had a picture of Jon dressed in white scrubs, complete with booties over his shoes, a cap over his hair, and a mask, but after I took the picture of him holding Joshua getting ready to head into surgery, I absentmindedly shut my phone without first saving the picture. So the image inscribed in my mind will have to portray to you guys with my words.

We arrived in Wexford at 1:00, his surgery was scheduled for 2:30, and he was out of surgery by 4:00 eating a Popsicle.

As you can see he woke up in good spirits and very hungry after being NPO all day.

We got home late that night and all he could think of was eating McDonald's and showing Nathan his bandages and port.

The port itself was sewn into Joshua's chest, in the middle is a clear rubber-like gasket which accepted the needles poked through Josh's skin without error. The tube was inside of one of his arteries that led to the heart.

Having a port-a-cath wasnt necessary to receive chemotherapy, but it sure made Josh's life "easier" not having to deal with multiple pokes in the veins in his arms and hands.

Josh has a book called "A Port for Me" that he received when he was first diagnosed, but now that he is starting to read, he loves to look at this book, and he wants to take it to school along with his port for Show-N-Tell when he's allowed to go back to school. We are keeping him home for the first two days then he is on "light-duty" until his site is healed. Of course all Nathan wants to do it wrestle!

Happy Halloween

Sorry for the poor picture quality, but my digital died and this was taken with my phone - cell phones just were not meant for photography!

As you can see, Joshua and Nathan were Power Rangers, Josh is in the blue and Nate in the red. Kenni and Halie were Zombie Prom Queens. The kids had a wonderful time and I was so excited for Josh! This was his first year since diagnosis that he didnt tire out in the first 15 minutes. He ran down the street with the rest of the kids. It wasnt until the last half hour or so that he was pooped, but so was Nathan. It is amazing to see the difference in his energy. I guess we had gotten so used to seeing him one way that it was starting to appear normal. So the boys and I headed home and the girls finished off the last half hour by themselves. It was the first time they went off without us and it was a weird feeling.

Of course they got lots of goodies, I thought I had a picture of their stash piled in mountains on the table as we went through it, but it disappeared off my phone. Just as well because the picture quality was likely poor anyway.

I almost forgot to mention, during our walk we happened upon, not one, but TWO haunted "houses" set-up in our neighbors' yards. The boys ventured into both of them and made it out unscathed. They were so proud of themselves!

--Just in case you were wondering, Kaitlynn was working, not that she trick-or-treats anymore, but she usually enjoys going around the neighborhood with us.

Lucky Day

Despite the grim anniversary date of Joshua's clinic appointment, 9-11, Joshua is calling it his lucky day!

I dont know when Joshua outgrew his sleeping-the-whole-way stage, but he now only naps a short time, somewhere in the middle, then we spend the last half hour of him asking, "Are we there yet?" I usually reply with how many miles we have left and the next five minutes he will ask, "How many more miles?" So as we are entering the city and he sees the tall buildings, he decided he wanted to count down the last minutes. So we have a little game where he says the first number and I say the second number, until we reach 60. Then we start over until we reach the desired minutes. When you say there are only 5 minutes left, and thanks to construction and detours there are actually more than 10... this makes a long game.

Josh decided that he wanted to wear his mask this month because he didnt want to get sick like last month. He's such a smart little man! But the only mask I had was a heavy duty adult mask. Josh was so happy to get back to our room so he could take it off! But before we got back there Josh was playing in the waiting room and found TWO strips of stickers! Lucky Day item #1!

Next, Kaykin (Kaitlynn) made a bet with Josh that he would cry when he got his port accessed. (Using a little reverse psychology). Usually we bet in back rubs, but this was a BIG bet worth one_whole_dollar! When the nurse came in to insert the needle, he got a little nervous, but he was already sitting on my lap and I quickly reminded him of his bet with Kaykin. He couldnt let her be right, so he sucked in his breath, puffed out his chest, and held on for dear might. It wasnt until after the needle was in that he left out his breath and waited for her to finish. The nurse wasnt out of the room yet and Josh went over to Kaitlynn and told her to "cough it over!" After we finished laughing in hysterics and she gave him his bribe money for the vending machine, he let out a self-assertive, "Sucker!" Lucky Day item #2!

Some of you may be familiar with the elevator game we play when we get to the hospital; and no, it isnt us racing each other on different elevators to our destination floor. There is a set of silver elevators that takes us up to to Floor 4B, almost never are either of the elevators on the first floor when we get there. Josh likes to race over to the elevators and press the "Up" button. While we are waiting, Josh chooses which elevator he thinks will get there the fastest. The big people's bet is then placed on leftover elevator. Winner gets a massage of their choice. Josh won the silver elevator bet, and of course he choose a back rub. On the way down we take the yellow elevators, they lead us to the cafeteria on the ground floor. There is one elevator on one side of the hall, and another on the opposite side. Again Josh somehow lucked out and picked the right elevator, this time winning a foot massage. I'm telling ya, it was close too, as we watched the numbers climb, I thought for sure I would win the second race, but somehow mine stopped on the floor below and didnt move again.

So we get down to the cafeteria, and Josh orders his usual chicken fingers complete with his beverage of the day. We were sitting at a table eating and a Childlife volunteer comes to the table and asks to sit down. He had a box of baseball cards and he told Josh he could pick out 20. Then he told Josh the only problem was that he didnt know how to count. After much deliberation and nitpicking, Josh settled on 17 cards. Baseball players, basketball players and he said he even needed some football players. Dont know who any of them were, but this was Lucky Day item #3! He could not wait to get home to show them to his daddy.

Then on the way out, the volunteer stopped Josh again and gave him Spiderman stickers. Spiderman! Of all people. "Can you believe how lucky I am today, Mom?" Lucky Day item #4!

On the way back up to the first floor, we again wait to board The Yellow Elevators. For the third time in a row, this fortunate fella won again, proclaiming that this time he wanted a shoulder rub! I told him we were lucky that this was the last elevator because he was running out of body parts to massage. Lucky Day item #5, 6 and 7!

When we got in the car, Josh was so excited he told us, "nobody is gonna ruin my Lucky Day." Kaitlynn and I couldnt help but laugh and before we even put the vehicle in Drive, I grabbed out my notebook to take notes so I wouldnt forget to journal about his prosperity!

Oh! I almost forgot to tell you about his other Lucky bit of news. His doctor told him that next month he can have his port taken out. Josh was asking him if it could be before we go to Florida because he wants to swim at the beach, so Dr. Wollman told him that it wouldnt be before our Lighthouse vacation, but we then tried to explain to him the difference between the ocean and a lake and why he would be able to swim in Florida. He couldnt wait to come home and tell everyone about that!! Lucky, lucky day!

Pepper in some hope

OK guys, it's that time of year again. Childhood Cancer Awareness Month.

Every day 46 children are diagnosed with cancer.
....................when I first read this statistic, I remember thinking: "Only 46 - out of the whole United States? And one of them was my son????" I never seen it coming.

1 out of every 330 children will be diagnosed before they are 19.
....................our softball league consists of 350 children aged 5-18... Joshua drew the short straw.

1 in 4 children will not survive...
....................someone once told me that 75% was a good survival rate. Let me ask you this: if you knew that 1 out of every 4 children that got on a roller coaster would not make it off - would you let your child on that ride?

35,000 children are currently fighting this battle.
....................If it's someone you know and love; one is too many!

Number of new drugs developed for childhood cancer in the past 25 years: ONE

If you guys will remember back, last year we (parents of children with pediatric cancer) flooded the internet asking everyone we know to write their congressman to ask them to support the Childhood Cancer Act. The letters were heard!!!! The bill passed this spring and was signed by the president on July 29 becoming law! This means that $150 million over a five-year period will be allocated for pediatric cancer research!

What a giant step.

Also since last year, in conjunction with the bill Senators Wayne Allard and Hillary Clinton introduced a National Childhood Cancer Awareness Day resolution. “National Childhood Cancer Awareness Day” is September 13, 2008. I dont know what this means yet... I mean how many gold ribbons have you seen on your grocery store shelves? Have you seen all the commercials? All the TV news stories or newspaper interviews? Me either... But I hope this year is the beginning of something great. To quote Senator Clinton, "National Childhood Cancer Awareness Day is an opportunity to reach out to all Americans with the facts about childhood cancer, and this day will be an important symbol of our commitment on all days to find a cure."

Awareness, whether it's one day, one month or an endless tirade, is designed to draw attention to the troubles of childhood victims of cancer. By helping to bolster awareness and coordinate a National effort; families, doctors, friends and whole communities can work to improve the lives of children with cancer and those children who will be diagnosed in the future.

A friend from my childhood cancer support group devised a plan to hand out 46 hand-made gold ribbons every day this month to represent each child that will inevitably be diagnosed with this life-altering illness. I dont know if I can match such numbers, but I will also hand out gold ribbons this month. Wear them proudly to show your support. Everyone knows what the pink ribbon represents - let gold be the new pink!

The girls have devised their own plan against our battle this month. Chili's Restaurant will once again host their annual fight against childhood cancer and for every person who dines at Chili's on September 29 they will donate all proceeds to St. Jude Children's Research Hospital. Also on their website is a place for you to design a pepper. The girls have colored theirs, and they challenge you to make one yourself. If you go to their site, the program is very easy to operate. After you created your pepper click on the "Finish Your Pepper" button. Then on the next page fill out the information and choose the "Save and Share Your Pepper" link. This will then take you to another page with a picture of your completed pepper. On the right-hand sidebar there will be an option to "Add Pepper to Your MySpace Page". Click on this link. It will then show you a box with a whole bunch of gibberish code in it. Highlight all the text, right-click on it and COPY the code. Then visit Joshua's guestbook and PASTE the code into message. Be sure to leave your name and city so we can see who made him a Pepper, the girls will track it on a map for Josh. This should be fun. The girls are excited to see your work! Their goal is to see 46 peppers by the end of the month. Have fun!

...and dont forget to put on your ribbon!!!

Deja Vu

Only one week of school and Joshua will already miss his first day of school today, just like last year. We are on fever watch. Even though Josh is off-treatment now, as long as he has his port, he still has to go to the emergency room if his temperature reaches the all-mighty magic number or higher. Which he will most likely keep for "at least 6 months after treatment" according to his oncologist. He has been running a low-grade fever all weekend, but so far we have managed to stay out of the ER and even though he is feeling pretty crummy, he isnt letting it hold him down much. He insisted he ride is bike out front every day of this holiday weekend.

Joshy's last appointment was on the 14th, this month has seemingly gone by super slow. Which doesnt make sense to me since I was so busy planning his party, but for some reason I keep thinking we go back to Pittsburgh this Thursday but it actually isnt until next, on the 11th.

This is Joshua's second "cold" since his clinic visit. I think that might be a factor of why it seems this month has stalled.

When we went to the hospital last month Joshua didnt wear his mask (because he had played with it the day before and ruined the very last one I had). While we were in the examining room Josh surprised me and asked the doctor if she could give him another mask for when we leave. She told him that he didnt have to wear them anymore now that he was done with treatment.

Later that night, out of the blue, Joshua looked at me and declared, "Mom, isnt it cool that I dont have to wear my mask anymore?"

I was so excited for him.

Then the very next Josh started to get sick and with sad eyes he said, "I guess shoulda wore my mask."

My heart broke for him.

But I am glad he was feeling better for his party and then his first week of school, but here we are with another illness. Maybe it's the time of year. I dont know. But I admit I dont mind having him home to myself again. I already emailed his teacher and Halie will be picking up his work for him to do at home later.

Currently he is snuggled up on my side while I tap away lopsidedly on the lap top. Which reminds me, Aunt Kay, your afghans couldnt've come at a better time. We all absolutely love them, especially as the nights start to get colder here, but Josh has been dragging his around with him and cuddling into his everywhere.

His appetite has fallen again, but I imagine it is because he's not feeling well. Likewise, when he was outside yesterday he was trying to play with some of the neighborhood kids but he tired out real easy. What started out as 6 kids playing hop scotch, quickly morphed into 13 kids ranging in age from 4-13 playing freeze tag. I had fun sitting on my "California-born" swing watching them all play. It wasnt long into the game though that Josh came home and sat with me on the porch. He then decided he would ride his bike down a few houses where the kids were playing. He sat on his bike and watched them run around.

Well, I hope this funk leaves soon and he can get back to enjoying his OT life!

On a side note - I hope everyone enjoys the new site. I decided to transfer all of Joshua's CaringBridge journals over to this blog. I love the freedom of being able to add lots of personality! I have gone back through past journal entries and added pictures and slideshows here and there. If you have any spare time you might want to take a look. I will continue to post to his CaringBridge, but only briefly and only to inform readers that his page has been moved, but eventually I will probably just close that site. So if you look around here, you will see you can either leave individual comments, or you can sign the guestbook, and now you can add your own personal touches too! As usual we will read these to Josh as he really loves to get mail and he is starting to read some words on his very own! Also you will find a email notification box on the right sidebar. If you would like to be notified whenever I update Josh's page, you can subscribe there, or if you'd like me to add you manually, just drop me an email.

I hope everyone enjoyed their Labor Day weekend! Like I said earlier, Josh goes back to P-burg next week so I will try to update again then.

Innocence of a six year old

Tonight, as I tucked Joshua in bed and laid beside him to "connect the dots" on his back, he asked me why I was always the one to pick him up from school. It's only been two days, and today Kaitlynn came with me - but apparently that is "always" to a 6 year old. Anyway, I told him it is because I miss him so much and cant wait to see him and find out how his day went. He thought about it for a couple minutes, and in the middle of me singing (no doubt off-key) You Are My Sunshine he said, "If you miss me so much, why dont you just stay there then?" I told him I didnt think they would let me, but he thinks if I ask the principal they will. Oh, I love the innocence.

The school had a fire drill today and he was excited to tell me all about it first thing. I think he was more excited to tell me that they crossed the street without holding hands! Wow, he must really be a big boy now!!

In other news, one of the first things I asked him this afternoon is if he "stayed in the green". Completely expecting it to be a rhetorical question, I was shocked to see his expression. A sly grin slipped across his face and a "how did you know?" expression tattled the reply.

On the second day Josh? Now trying to get my embarrassed son to tell me how he fell into the "yellow" took a little bit of interrogation skills with the need of an interpreter fluent in baby-babble. Newly-turned 6 year olds are very gullible, I told him if he didnt tell me what he did to warrant "a yellow" that I was going to have to turn around and ask the teacher. Flustered enough, I managed to make out something along the lines of "play fighting with his lunch box".

This morning when I woke Josh up, he confided in me that 'kool was borin'. I told him it would be more fun as they started to learn more things. Today Josh told me that they learned more about rules and how to behave. I suppose lesson #3 is no WWF or UFC at lunchtime with the other boys

Joshua's [second] first day of school

Today was Joshua's first day of school - again. This time I walked (albeit reluctantly) out of the school tear-free. Not that I didnt want to. I miss him so much already. He definitely has a way of making my day.

Yesterday was the first day back to school for the other kids, but Joshua's shot records werent in order because of the leukemia, and I had to wait for the school nurse to call me to straighten that out. As soon as she began to talk to me she remembered his case well from last year and still had the letter from his doctor regarding his shots on file. Josh walked out of the school crying but we charmed him with breakfast and bribes of the zoo. We didnt end up at the zoo because it threatened with rain, but we played extra long in the playground at Mickey D's.

Joshua's kindergarten teacher is Ms. Clara Chlebus (pron: Clee-biss although originally, I thought she said Clevis); the kids call her Ms "C" for obvious reasons. Which reminds me of when I was a Brownie Leader; I asked the kids to call me Ms Marian, because Fromknecht is definitely a mouthful and Ms F just didnt seem fitting. Ms C wears her name well.

This morning on his way to class, Josh walked down the hall to his class several steps ahead of Jon and I and marched right into his classroom un-apprehensive. He found the hook with his name displayed above it and proudly hung up his book bag complete with his PB&J lunch neatly tucked away inside. After walking around the room slyly checking things out, he sat down at his desk where his soon-to-be friends were already seated. Before I even left the room he was investigating his crayon box and studying the papers sitting on his desk. I dont even think he looked back. I could've stood in the doorway watching him all day if they allowed it. Maybe because Jon was with me this year or perhaps because I had Josh to myself an extra year, I didnt have as hard a time walking out of the school as I did last season. It was a long afternoon of me watching the clock, but Nathan provided the comic relief I needed and the minutes eventually ticked to 2:20.

When the bell rang Josh was at the head of the line and the first little one to walk out the kindergarten doors, spotting me immediately and running up, giving me the biggest hug and kiss. It brightened my day to see him so happy! He couldnt wait to tell me all about his day. I asked him if he met any friends and he told me, "all of them". He couldnt remember any of their names, but was quick to let me know he stayed "in the green" all day which meant he behaved, but one boy didnt, he went "in the yellow" and he didnt get a sticker. Ah, this teacher found Josh's weakness already