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

Joshua's Celebration of Life

Joshua had a wonderful time at his party, as well as everyone in attendance. It was a nice day starting with the cooperating weather all the way to the setting sun. We danced the night away literally.

Before the party birthday cards and gifts arrived from across the country; all the way from California and Florida and nearly everywhere in between! Josh just loved receiving mail and although he cant yet read, he enjoyed all the cards and saved them all!

At the party we had long-distance visitors from as close as Bolivar and as far away as Kentucky! It was exciting to see everyone, it really was a day to celebrate.

I thought the day was starting off a little bumpy because we were blowing fuses when it came to trying to cook the food - but the park manager was bribed with a some vittles and he was more than happy to fix our problem.

The girls and I spent weeks making things and getting ready for the party, in particular the piñata. What took days to create, took minutes to disassemble! Actually for mere posterboard and newspaper it was stronger than I anticipated. I would venture to guess that there were upwards of 20 kids, we lined them up from shortest to tallest (with the exception of Joshua who went first, but only Nathan was smaller) and they each were allowed 3 whacks. To the tune of "I Want Candy" steaming through the speakers, they went through the line up 2 times. A few good whacks let out a spattering of candy here and there, and we were worried a blindfolded kid would smack a candy-starved child in the head with the bat when one didnt wait for the other, so in the end we ended up ripping it the rest of the way open for the eagerly awaiting kids.

The cake was a huge hit, it really turned out beautiful, beyond my expectations. But as hot as the day was, the frosting started to melt some and was sliding off one side of the cake. But it still tasted yummy! The cupcakes were a nice addition to the cake and the kids couldnt pick them out fast enough.

Before Josh opened his presents, he presented his brother with a gift for being a "Super Brother". In the days leading up to the party, Josh helped to make and model a cape that I fashioned with a huge yellow "N" on the back. Joshy made a great model but informed me that he wished he had one with a "J" on it. Cute - so out to the fabric store I went. Anyway, there were three gifts bags on the table that didnt belong to Josh, he kept this secret for over a week! He was excited to hand them out to his sisters and bestowed upon them an offering for being his "best medicine" over the last 3 years. At this point my eyes started to leak a little. I didnt think I would cry this day, but he was so proud, and spoke so well. Kaitlynn and Halie both got butterfly rings, each in their own style and Kenni received a pair of butterfly earrings. The butterfly is a perfect symbol of childhood cancer as it represents change and hope. I Had wracked my brians in the weeks leading up to the party trying to think of something to give to the girls to let them know how important their role was during Josh's treatment, it was my friend Karen who suggested the rings and as soon as she said it I knew it was the perfect idea! It was ironic because as we drove to the jewelry stores together we speculated on ideas for the rings, but neither of us thought about the butterfly, and it was one of the first things to catch my eye. It was kismet!

Joshua received lots of cool gifts, each of which he is extremely thankful. Josh and Nathan could hardly wait to go home that night and rip open all the packages. He received lots of actions heroes, including Power Rangers and Ben Ten which was right up his alley. He also had been asking for Webkinz non-stop prior to the party, of which he received 2! One was a dinosaur who he named Cocoa who is a boy and the other is a leopard who he named Cappachino, she is a girl. He got a kick out of seeing them on the computer when we registered them, but last night I got a kick out of watching him take them to bed with him along with his new Spiderman afghan. If you can see the slideshow, check out the details involved. It is absolutely gorgeous. Jon's Aunt Kay and her friends from Kentucky made blankets for our whole family and you can see the time and love put into them all. Josh also got an awesome green big boy's bike. The very next day he dug out his helmet and had us push him down the street. He cant ride it on his own yet, but it's just a matter of time. It's amazing to see how much stronger his legs are getting already, what a difference from this year to last!

After he opened his gifts, we held the chemo ceremony. Karen and my mother went around the pavilion and collected all the balloons while Josh was opening presents. They tied several balloons to one of his pills bottles filled with smarties (but dont tell Josh, he thinks his chemo was in there). It took more balloons than I had anticipate to lift them off, but he was excited to have the biggest bunch - lol. So everyone else that wanted to participate in the release with us came to a clearing and got a yellow or orange balloon. Turned out we had the perfect amount. We all counted to three and after Josh released his group balloons the rest of us released ours. It was quite a sight watching them all lift off. Despite all the extra balloons, Josh's didnt raise as fast as the singletons, and briefly got stuck in a patch of trees, but they worked their way free quick enough and those pills are now gone forever!

After the balloon release, it was time to announce the winners of the guessing game. Guests were asked to guess how many times Josh was admitted to the hospital, how many spinal taps he endured, how many times he was poked, and how many pills he had to take during the course of his treatment. On the cake table was a huge apothecary jar (read: pickle jar) filled with make-shift pills (read: Reece Pieces), representing how many pills Josh has had to swallow over the past 38 months. The prescription label on the front of the jar read:

Fromknecht Pharmacy

(814) 403-9431 ◊ Erie, PA 16504

Patient: Ima Lifesaver

---

HUGGALOTAKISS TABLETS

---

Dose: TAKE 1 ORANGE TABLET TWICE DAILY FOR 5 NIGHTS AND 1 ½ YELLOW TABLETS ONCE DAILY 2 NIGHTS A WEEK.

Qty: _____________ Refills: call anytime

Prescriber: Dr Joshua Michael

Rx # 082308

The winner of each category won a small commemorative gift (except that we left of of the gifts at home on the table...) The winner of a pin cushion and the exact number of symbolic pins went to my soon-to-be step-brother, Ray Jr. How many pokes has Josh endured over the past 164 weeks? He guessed 136, the actual amount was 134, give or take a few pokes that had to be done multiple times due to nurse error. So he was probably closer than I was... The winner of a hospital care package which consisted of a coffee cup filled with some hard candy, some spare change for vending machines, a toothbrush and a deck of cards was Jon's best friend, Jimmy. Over the last 3+ years, how many days were spent inpatient? Jimmy guessed 28, but the actual number was 43! His daughter Gabby, was supposed to be the winner of a stuffed bear with bandaids on it's back, but that was the prize left lonely at home. The question was - How many spinal taps has Josh had in the past 38 months? She guessed 20, and the actual number was 24. Finally the moment everyone was waiting for - how many pieces of candy filled that giant pickle jar. It took nearly 8 pounds of Reese Pieces minus the brown ones and the girls and I counted each and every one of them. Winning the jar full of candy was my sister-in-law, Kim with a guess of 3438. Ironically, coming in a CLOSE second was our friend, Janice, Halie's old t-ball coach, with a guess of only one more... Over the past 1146 days, how many pills has Josh taken? The real answer 3318. An average of 3 a day, which seems a lot when you consider he was only 2 when this whole thing started. Kim was pretty close, if she were on the Price is Right, she would have just missed the dual prize! My brother broke into the jar of goodies before the night was over!!

The kids rounded the night off by dancing. They danced to the Chicken Dance, the Macarena, Soldier Boy and who knows what else. I had a good time watching them and the few adults that joined in here and there had me in hysterics! All in all it was a memorable night. Thank you to everyone who made it so special, even those of you that couldnt make it - you were with us in our hearts!

Happy 6th Birthday!

Happy Birthday to you!
Happy Birthday to you!
Happy Birthday Baby Boy...
Happy Birthday to you!!!

I can hardly believe that my little man is 6 years old already!!! Things are in full swing here preparing for his party. He is excited - albeit a little confused

Last night, ironically enough, he was still up when the clock struck twelve. We all started to wish him a happy birthday and he was quick to tell us it wasnt his birthday yet. We tried to explain the next day/midnight rule but he didnt seem to comprehend - to a 5 year old - Um... I mean 6 year old, the next day doesnt happen until after you fall asleep.

But this morning Josh got a phone call from my mother wishing him a happy birthday and again he insisted it wasnt his birthday. He says his birthday isnt "for 2 more sleeps" (that how he counts his tomorrows).

You think that a growing boy would be more than willing to have TWO birthdays, but Josh is a rare breed.

He's been receiving mail all week from family around the country, from Florida to California and everywhere in between! I love to see his enthusiasm. He loves it all from the stickers you are putting on the outside of the envelopes to the cards and well wishes inside. One of the cards had a singing message inside and he thought it was the greatest thing!! I think we were singing the song in our sleep that night I found myself hoping the battery would go dead - LOL - just kidding of course. Thanks to everyone who has sent cards! He loved to steal the stickers off the envelopes and put them all over his body. I took plenty of pictures to share with everyone and will post them after his party. I cant believe how many of you remembered how much he enjoys stickers! I cant believe 3 years later he still has an infatuation with stickers!

For those of you that are coming to the party, see ya in two days, and for those of you who can not make it - I will be sure to write in detail and include lots of photos of the celebration!!!

31 days since his last chemo pill!!!!

Which reminds me... this months visit to Pittsburgh went well. It was weird not getting any IV meds, they even put us in a different room this month, but it was "super sweet" not having to worry about this month's side effects. Which I have to mention - Josh's appetite has already increased to much it is unbelievable. For the last 3 years his appetite has been so picky and plain, that we just got used to it being Josh - but we are now seeing him eat different things - the other night we had hamburgers and he actually ate one! It probably sounds weird to be happy your son ate a hamburger, but I love knowing his taste buds are coming back!!!

It's the simple things!

15 days since his last pill!!

15 days since his last pill!!

Oh, two updates in one week! Something must be in the water

It was suggested that I include our mailing address for those who can not make it to Josh's party and wish to send him a card. Josh absolutely loves receiving mail, so without further ado:

2710 East Ave
Erie, PA 16504

Also if you desire, you can leave a message in the guestbook as I will be printing the messages and will assemble them in a book of sorts for Josh to proudly display at his party. We read everyone of them to him and he really enjoys getting them.

Josh worked really hard making this Voki fish. I lost count how many takes it took after the umpteenth time, between a 5-year old's attention span and Nathan the background-noise-aficionado, but it turned out nice and Josh loves it.

Anyway, Josh is having a lot of fun helping to plan his party. He hand-signed all his invitation personally. You should be getting those in the mail soon. I hope I had the right addresses for everyone. I think he's most excited about his cake - that boy loves cake! Did I tell you for Kaitlynn's birthday last month, she spent the day with her friends. When Josh asked where her cake was we had to explain to him that she was growing up and wouldnt be home. He proceeded to tell us, that we could still have cake without her, that he was home to eat it.

Fair enough - we went out and bought her (eh hem - him) a cake

Speaking of eating - it amazes me how much of Josh's appetite has come back since going off his chemo. I knew his tastes had changed, but didnt realize how fast it would return to him. The other day he was going through the cupboards looking for goodies and I had to laugh when he pulled out the coffee creamer asking if he could eat that.

Well, I guess I've gone on enough. Thanks for listening to me ramble once again!

Marian & the Zoo

Joshua's Celebration of Life
to commemorate his End of Treatment & 6th birthday
August 23, 2008
Glenwood Zoo Pavilions

Venue for party decided

I have a couple things to report tonight.

First: The girls have made Josh a cute little Voki. If you want to know what this is, check out his MySpace page and be sure to click the play button under the fish. They recorded it with Josh's voice and it's so cute!

Second: Also on Josh's MySpace we have uploaded some pictures of Joshy's "Final Spinal". Kaitlynn was the talented photographer and Halie was the expressive author.

Lastly: The venue for his party has been decided. It will be held at the Glenwood Zoo Pavilions. Invitations are in the mail, if you dont receive them via USPS or through Email, please accept this as your invitation, we look forward to celebrating with everyone who supported us along this journey.

Joshua's Celebration of Life
to commemorate his End of Treatment & 6th birthday
August 23, 2008
Glenwood Zoo Pavilions

No Mo' Chemo

After 1,147 days I am proud to announce:

Josh is officially OFF TREATMENT!!!

It is both exciting and scary at the same time. Josh is loving the thought of being done with all his medication and he is the first to tell anyone that listens that he doesnt have to take his pills anymore! (aside from his one preventative antibiotic)

We are having a CELEBRATION OF LIFE party to commemorate both his birthday and end of treatment. I cant think of a better way to mark the beginning of his new cancer-free life. He will start off his 6th year with a newly-energized, still-spirited, super-heroic force!

The Fromknecht Zoo would like to invite anyone who has supported us along Joshua's Journey. We want to show our gratitude for your support, every well-wish, every card in the mail, the phone calls while inpatient, the "how are you's" while passing on the street. For every prayer sent his way; they were felt and carried us through our hardest days.

Thank You!

Joshua's Celebration of Life
to commemorate his 6th birthday and end of treatment
August 23, 2008
time and place to be announced

3-yr anniversary

I guess it's about time I update this thing... I've put it on hold with the feelings I've been trying to suppress, but not surprisingly the anxiety is still there. It comes and goes, and with softball season in full swing it definitely has a hard time of finding its way into my brain sometimes, but today is a notable day that didn’t pass without reflection.

Three years ago today Joshua was diagnosed with cancer. I remember spending my Memorial Day three years ago curled up in a ball on the couch with Joshua, worried about the future as we waited for that fated oncology appointment. This Memorial Day passed without a mere thought of that anguish and now we anticipate his last chemo-day in just a few short months.

There were still blasts in Josh’s last spinal tap, but again, not enough to label it a relapse. So with his impending OT (off-treatment) date imminent, I suppose it is natural to feel apprehensive knowing my security blanket, fittingly-named Chemo, is being ripped out from under us. What will keep those lingering blasts at bay? Hopefully a lot of hope, faith and prayer!

Don’t get me wrong, I look forward to the day Josh can go to bed without asking how many pills he has to take. Jon looks forward to taking his first-born son to the lake to fish without fear of bacteria in the water. The girls look forward to owning a hamster or gerbil or (insert forbidden pet here) or bringing in a potted plant they made at school for mother’s day. Nathan looks forward to a brother who has enough energy to keep up with him (if there is such a person ). And we all look forward to being a healthy normal family and not having to plan our lives around Josh’s ANC, medication schedule or next doctor’s visit. It’s the fear of the unknown I guess. There are pages upon pages of quotes floating around on the web regarding fear and the unexpected; it’s nothing anyone else hasn’t had to face before. I suppose it helps to express every now and then, and it has been awhile for me.

Appropriately, Josh’s last treatment is at the end of July, and the following month, when he celebrates his 6th birthday, he will also celebrate being Chemo-free! As a friend of ours put it, “Goodbye Chemo, Hello Life!”

PS – Don’t you just love the new frog background? Joshua says that Grandma [Joan] will smile when she sees it from heaven.

24 Stockings

I have been hesitant to update here because I dont want the girls reading the journal, but I have found a way to block the journal page and still let them check the guestbook, as the girls enjoy reading the comments and jokes to Joshua. So please, if and when you sign the guestbook, please be aware of what you say as I do not want to add unnecessary fear to the girls.

Josh's cytospin test came back showing 3 blasts (leukemia cells). They dont consider it an official relapse until it is 5.

So we wait to see if the cells multiply or hopefully they will burn themselves out! They will be monitoring him closely. For now we are in limbo land.

Sorry, I didnt update the webpage sooner, like I said I don’t want the girls worrying, but after reading the mass emails asking about Josh I figured I better figure something out.

The kids and I have been extremely busy keeping ourselves busy with holiday fun. Last year, when I was laid off just before the holidays, I was devastated and worried sick about how we would give the kids a Christmas. After much inspiration from Jon’s mother I quickly realized that Christmas wasn’t about the gifts we give to our children, despite what the little ones might think sometimes. Notwithstanding the outpouring of love and support our families showed, the kids lacked nothing (not in presents or love) and I tried to remind them the importance of family time and memories. And they learned that there really is a Santa, and he comes in many shapes, sizes and genders!

Looking back over the years, I asked the girls if they can tell me what their favorite present was. A lot of the time they were pressed to remember what they received. But when asked about their favorite memory, they each could rattle off several close to their heart.

So a tradition was born. We decided that one day was not enough and we made 24 mini-stockings and we stuff them with “activities”, one for each day. They range from baking cookies, to going to the movies; from Monopoly night, to taking care baskets to our local firehouse. Tomorrow is supposed to be “Snow Fun Day”. Hmmmm…. When I filled the stockings with our ideas, I imagined there would be more snow on the ground by now, but I think it will be enough for some snowballs or two! I just hope I don’t freeze. At any rate, we have been keeping ourselves busy and I have had little time to get on the computer. I apologize to those that sent me emails inquiring after Josh and for not answering sooner.

Jon and I are hopeful that Josh will overcome this hurdle; we are praying those stupid cells burn themselves out fast! He is a strong, brave little man. Even if our worst fears are realized, he will overcome this also! But I refuse to let my mind go there.

SO. If you would like to leave a comment in the guestbook – please do! We all love reading them, just as much as Josh loves hearing them (and as much as he likes to pretend he can read) If you are at a loss of what to say – here’s an idea:

Tell us your favorite holiday memory. One of my favorite childhood memories was made when I was about Halie’s age now. I remember sitting on our fireplace hearth singing Christmas carols united in the company of long-distance family. Before this year when the girls were asked of their favorite Christmas memory, they recalled a treasure hunt Santa left them in search of their presents. They didn’t remember what the gift was, but they remember the quest.

So share with us your most cherished recollection – we would love hearing them. Maybe it will inspire a tradition

Merry Christmas everyone! We love you all. May everyone’s season be filled with millions of memories!

The Fromknecht Zoo