Monday, April 27, 2009

Some Cancer-versary Pics!

I wanted to share a few "Cancer-versary" pics from this weekend.

I know this is blurry, but it was on a whiteboard and I had to turn the flash off. You get the idea, though :)


What we had for dinner:

SuperJosh and his "Happy Remission" cake:

A toast for Joshua. I wish you could have seen his face - it was pure joy!!


April 27, 2004. The day my life, and everything in it, was flipped upside down and shattered into a million pieces.

I don't need to look at pictures to remember the day. I assure you that everything about it is burned into my memory. The sounds, the sights, the smells - it's all there.

I remember sitting in Joshua's ICU room. It was dark because he was still really drugged up. I had scooted the rocking chair right next to his bed. I was holding him in my arms and just rocking with him. All the lines and tubes were draped across his body, keeping him hooked to all the monitors and IV pumps.

Rick had just left with his brother. They had gone across the street to Burger King. My mother-in-law, Patti, was sitting on the other chair across the room, by the window. We were just talking quietly.

The door opened, and in walked Dr. Dickens. We had only met him once before, during surgery. He had come into the surgical waiting room and had asked us if we would allow him to keep Joshua's tumor for research if it turned out to be cancer. He seemed really nice, but honestly, I didn't want to know him if he was a cancer doctor. When he came into the room, I looked up, and felt sick to my stomach.

He kneeled down onto the floor in front of me and he looked me in the eyes. "We looked at the tumor under a microscope and we're pretty sure it's cancer."

That was it. One sentence that literally changed my life forever.

I started to cry. I just held my little baby and rocked, back and forth, clinging to him like he was all I had left. My mother-in-law walked over. She put her hand on my shoulder and cried with me.

Then something occured to me. Rick was gone. He wasn't there when Dr. Dickens came in. When he got back, I was going to have to tell him the news. It was about 10 minutes later when he came in with his brother. I told him we needed to go for a walk. We went down to the lobby and I had to tell him the worst possible thing for a parent to hear.

Our son, this child we created together, who was literally our whole world, had cancer.

The days after that are a blur. I remember getting moved from PICU to this place called 7 South. It was where all the other "cancer kids" were. We stayed there for the rest of Joshua's recovery from surgery. I remember these oncologists coming in and talking to us about treatment, chemotherapy, side effects, stem cells, harvesting, transplant, rescue, survival rates. I didn't understand any of it. I couldn't even absorb it all. I just sat and cried during the entire conversation. Thank God our moms were there and heard what we didn't. We were in shock and could not comprehend all these things these doctors were saying.

One day at a time, we made it through. Sometimes trying to survice the whole day was too much for me, so I would promise myself I would make it through the next hour, or the next 15 minutes. Whatever it took.

Two weeks after surgery we started chemo. I remember sitting in the hospital room on May 9th, which was Mother's Day that year. Joshua was getting his first round of chemo. I remember thinking, "Wow, this is not how I wanted to spend today." May 15th is my birthday. Joshua was still getting chemo. I sat there and thought to myself, "Who would have thought I would spend my birthday watching my child get poison pumped into his body to fight a disease that will otherwise kill him?"

Fast forward through 5 rounds of standard chemo, one round of high dose chemo, a stem cell transplant on October 27th, 2004. We checked into the hospital for transplant in October and didn't leave until December. Then we had to keep him in isolation at home until February, 2005.

It was our life for almost a year.

But today, April 27th, 2009, Joshua celebrates his 5 year "Cancer-versary".

Look how far he's come. Look how far WE'VE come as parents and a family. God has greatly blessed the people most important to me, and I am so thankful for that.

I know too many parents whose children lost the battle. I've seen with my own eyes, too many children that I love and care about earn their angel wings and leave their devoted families behind to learn to live again without them. It's not fair. I still cry about it and I still get angry sometimes. Why is it that children, who haven't even had a chance to LIVE, have to go through something like this?

It doesn't make me less happy that my child survived. But it does make me more passionate at finding a cure for this, so other families will NEVER know how hard this journey is.

Sunday, April 26, 2009

Something to Celebrate

Tonight, Rick and I had some special people over for a special kind of party. Tomorrow, April 27th, Joshua celebrates 5 years since his diagnosis of a malignant medulloblastoma brain tumor. It's his "Cancer-versary", to steal a phrase from my friend Michelle. Because it's been 5 years, we wanted to celebrate Josh, and also take the time to thank our family, who were truly our ROCK when he was so very sick.

Here are just a few reasons why we celebrated them tonight. They might seem like small and insignificant things, but I assure you, they meant the world to us:

They all spent an agonizing day in the Surgical Waiting Room with us on the day of his tumor resection. We grabbed a corner and commandeered all the chairs around and just sat. And waited. And they took us to get food and coffee, made us take walks when we didn't want to, because they knew we couldn't just sit there the whole time. They cried with us, held us, held us (well, me) UP when I could barely stand because I was such a wreck...

My mom, more than once, gave me a ride to the hospital when Rick would have to rush Joshua to the ER because he spiked a fever and I would have to stay behind and get the "Hospital Bag" packed because we knew we'd be there for at least a week for IV antibiotics. We would always stop and get Joshua something new to play with for this inpatient stay. Hey mom, remember the time we got stuck in the traffic jam when I-96 was closed? It took us almost 2 hours to get through it and get to the hospital. I was a train wreck. Thank you for being there for me - I can't imagine I was good company at all. In fact, if I remember correctly, I may have yelled at you a couple of times for not being able to make it all go away... sorry about that!

Sue, my step-mom, would pop in on her lunch break from work because she worked in downtown GR, not too far from DeVos Children's Hospital. Just to give us a break when she could.

My father-in-law, Rick, paid for us to get new carpet because we didn't have the money (obviously) and we needed to replace the carpet before Joshua could come home from his transplant.

My dad, who absolutely hates hospitals and cannot stand to be in them, came down and painted a Winnie the Pooh scene with tempera paint on the window in Joshua's room when he checked in for his transplant. It was going to be our room from October until December, and we wanted it to be just a little more homey.

My grandma came down, faithfully, every Wednesday morning. I would stay at the hospital on Tuesday nights so Rick could have a night at home, and then she would come down when I had to go to work on Wednesday so Rick wouldn't have to come back until Wednesday night.

Lois, our other mom, came down and cleaned our room when we were at the Renucci Hospitality House before we could come home after transplant. It was a transitional place, but she knew how important it was that the room be as clean as possible since Joshua was so succeptable to infections and it would have been SO DANGEROUS for him to get sick. If you know Lois at all, you KNOW that no one does a more thorough job cleaning than she does - it's incredible. And it's something I could not have done... there was so much other stuff on my mind, that never would have occured to me.

Our dear friends, Hillary and Luke, went out of their way to keep things as normal for us as possible. In small ways, like coming over for cook-outs, or whenever we were home to play Euchre and just hang out. Things you take for granted but are SO important when you're going through something THIS life altering. It was a little taste of normal for us, every once in a while. And it couldn't have been easy for them to see Joshua the way he was - they didn't have kids yet...

During transplant, our moms worked out a system where they alternated doing an overnight shift one weekend night a week. That way, Rick and I had ONE guaranteed night that we could be home together. Not to really do anything, just to be together, and not at the hospital. When your child is in the hospital for so long and you have to be at their side 24-7, you would be amazed at how important it is to be home with your husband or wife, even just once a week.

Patti, my mother-in-law, also drove through a literal blizzard in November, well over an hour, when the roads were truly treacherous, so that Rick and I could go to Terry and Lois' house for Thanksgiving dinner. She stayed with Josh and shared his turkey dinner from the cafeteria, and we were able to go be with family, like our lives had a shadow of normal left. That was the one holiday between May and December that Rick and I didn't have to stay in the hospital for.

This is just a snapshot of the support system we had. It might not seem like a lot, but I promise you that when you have to go through what we went through, it literally makes ALL the difference in the world. There were more people, too, who were incredible, don't get me wrong, but these were the ones we wanted to thank tonight.

We had dinner together, and my mom brought a "Happy Remission" cake, so we had a toast. Mostly toasting Joshua, and how far he's come, but also toasting our FAMILY - the honest to God reason that Rick and I made it through Joshua's cancer. We could not have done it without their support. See, the thing is, this wasn't just our journey. It was their journey too. They walked it with us, held our hands, and helped to hold us up.

I could tell you over and over how thankful we are, but there just aren't words to describe the depths of it. It's why we survived as well as we did. Thank you, everyone, so much, from the absolute bottom of my heart.

Tuesday, April 21, 2009

Finally Some Good News!!!

Went to see Dr. W. today. I just love her to pieces. There's just something about seeing the one who delivered one of your children when you're dealing with something scary like this.

There was 1 area that was abnormal. Lucky for me, Dr. W. uses a local anesthesia to numb the area before she biopsies (my other doc didn't do it, which is why it hurt SO BAD last time. She said it didn't look bad to her AT ALL, and while I was numb, she could just go ahead and take the whole area off with the pinchy thingies she uses for biopsies. So, it's ALL GONE.

I asked her what the chances were of the lab results coming back as cancer, and she said in her opinion, they were ZERO!!! Plus, I'm still young enough that they aren't in a rush to do any additional treatment on me. No LEEP or anything like that until I turn 28, lol. So, I have just over a year for this to stay gone on it's own before they will want to do more if it happens again. I go back in 6 months for a repeat pap and colp, but I'm not NEARLY as scared about it anymore.

Holy cow am I sore. Driving or sitting for long periods of time (more than 15 minutes) is more than I can handle... But, as long as I'm up and moving around, I feel better. Which is why my mom and I went shopping this afternoon for new (happy) celebratory summer clothes, LOL.

Praise GOD, the power of prayer, and a HUGE support network.

I should have final labs back later this week or early next, but if Dr. W. isn't worried, I won't be worried either :)

Monday, April 20, 2009

Visit to the Doc Tomorrow...

Tomorrow is the big doctor's appointment. Ugh. Today is not a good day, tomorrow will be worse, but I'm sure hoping that the week will end on a high note. There's sunshine coming later this week, as opposed to the incredibly depressing gray that's out there right now, and I'm hoping it brings sunny test results with it.

Love my mom - she's taking me in tomorrow. Nothing like having your mom there to hold your hand when you're scared and it hurts! I bet I can even get ice cream out of her if I do a good job (when we were little kids, that was what she did - if we were brave when it hurt, she would take us for ice cream when it was over)!! I'll post tomorrow night and update how many biopsies Dr. W ends up taking.

Wednesday, April 15, 2009

trying to link with Facebook

I'm trying to like my blog to my Facebook so it's easier for people to get to. Let's see if this works...

Joshua and his new school...

Monday was Joshua's first day of school. Rick brought him in and stayed with him until he was comfortable - that only took 40 minutes!! When I got Josh off the bus, I asked him how school was and he said it went GREAT! Talk about a huge relief! I was so nervous that this was going to be a difficult transition for him, but it appears that he's taking it all in stride (for now, at least!).

It sounds like he's making friends, although he can't remember their names yet (lol), and they've been practicing some songs for an Earth Day concert that they are doing next week so he's been singing those all over the house. Super cute!

Oh, and since he's one of the last kids dropped off the bus after school, it's a long afternoon, and yesterday he decided to take a little nap on the ride home, lol. I actually had to go onto the bus and wake the poor kiddo up!! That was pretty funny.

He rode the bus in for the first time this morning - I'm sure that went much better because he's one of the last kids picked up before they head to the school. Much shorter than the afternoon ride, lol.

So, for now, things look like they're going well in his world!! I'm very happy with his teacher too. She's really good about sending emails and calling us at night to fill us in on how the day went. I really appreciate that. I just wish Shoreline had Spanish class for the elementary kids! I'm going to have to "homeschool" him in Spanish so he doesn't lose what he's learned so far!

Monday, April 13, 2009

He is Risen!

Hallelujah - the stone has been rolled away and He is risen!

Hope your Easter was beautiful. We didn't go to church - that was tough. First time in more years than I can count that we missed the Easter service. That's the thing about moving, and not having a new church home yet. Add to that the fact that we've all been so sick (Joshua finally caught it late last week and didn't move from the couch hardly at all this weekend...) and it just didn't happen. I won't lie, it was tough. Even though I KNOW the reason for Easter, and I assure you it wasn't forgotten, I'm still upset we didn't make it to church. The sunrise service on Easter Sunday has always been my favorite...

I did, however, order a new children's Bible from Amazon today. One that has come HIGHLY recommended from someone whose opinion I truly respect. I can't wait to share it with Josh and Logan :)

I think I need to do a Bible Study. I feel far away from God right now, and with my doctor's appointment coming up in 8 days, I have a feeling I'm going to need him. Oh, and I need to find "Footprints in the Sand". On a bookmark or something so that I can carry it with me always. I can't tell you how many times it was my saving grace when Joshua was sick. Amazing how I used to see it everywhere and never thought much of it. I guess it didn't apply to me at that time in my life. Now, however, I feel compelled to carry it in my heart. Might have to take a trip to Family Christian or Hages...

All in all, we are doing well. I can't wait for temps in the high 60's later this week. I'm so tired of being cooped up inside because it's too cold out. I want to plot out my garden and get my hands in the dirt... I just need Spring, and the promise of a new beginning.

Hope you have a beautiful week!

Tuesday, April 7, 2009

Life in the Here and Now...

The spring sickies have hit our house full force. It started with my missing a day of work about a week and a half ago because I was unable to lift my head off the pillow. Then at the tail end of last week, I noticed my sore throat was coming back, and Logan was stuffy and starting to cough. By Saturday, me, Logan and Rick were all competing over couch space. Sunday was even worse. I slept until 11:30am - that is unheard of. Finally late Sunday I started to feel better - less like I'd been hit by a semi-truck. I think it was the flu.

Rick and Logan are still sick - Rick got the worst of it this time around (and he RARELY gets sick, so that takes some getting used to...). He actually blacked out on Friday night and cut his eye when he fell into the corner of the wall. Yesterday the three boys stayed home while I went to work. I hear it was 2pm before Rick was able to get out of bed! Luckily, Joshua is SO GOOD at helping when we are sick. He pretty much took care of Logan for most of the day yesterday.

I just hope Joshua lucks out and never gets this. He was coughing when he woke up this morning, though... He starts at his new school on Monday, and it would be a bummer if he ended up sick.

Rick is still home today. He thought he was going to go into work, but I told him that was probably not the best place to be. He's got Logan with him again (he didn't want to cooperate this morning when it was time to go to the sitter's house, and it just wasn't worth the battle), so hopefully they will both take it easy. I can't wait for everyone to feel better so I can change ALL the sheets on ALL the beds and spray everything down with Lysol, especially since we have company coming this weekend for Easter.

I'm tired though - it's a lot of work to take care of a sick family, especially since I'm not 100% yet. Getting better, but certainly not "there" yet. Is it too much to hope that this will be IT for us for a good long while???