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Parker’s Brother, Chase

2/21/2015

When I met Parker’s dad, he already had a son named Chase.

I immediately fell in love with Chase. He was only a year and a half old and he had the blondest, curliest hair I had ever seen. He was adorable. I considered him my son and enjoyed every minute with him. Soon he was calling my parents grandma and grandpa, and he called my grandparents, Papa and Nana. He was part of our family. We were very grateful and fortunate that his parents shared him with us.

After Parker was born, I decided to move and attend college in Cedar Rapids. Chase’s parents still let him come visit me for weekends. He and Parker got a long wonderfully and were best friends. They still are.

After college, I moved back to the Quad Cities and Chase was the biggest reason why. I tried to include him in everything we did. He came to holidays and family get-togethers. We went to the park and zoo often. Rode rides at Adventureland. We went to Tony Hawk’s Boom Boom Huck Jam and met some of the skateboarders.

Years passed and I met Kevin and eventually moved in to his condo in Madison, WI. It didn’t take long for Kevin to fall in love with Chase too. Chase would come to Madison to visit us there as well, and we continued to include him. We took trips to Chicago and went to Legoland, Medieval Times, Shedd’s Aquarium and the SkyDeck. We went to the zoo in Des Moines and the boys fed a giraffe, rode on a camel, and swam in the hotel pool for hours. We had a blast in Wisconsin Dells sliding down water slides and relaxing in the lazy river. And we rode rides and toured the aquarium at the Mall of America.

When Kevin and I moved back to the Quad Cities after getting married, we were happy to be able to see Chase even more and have the ability to do some of our favorite activities with him more often like going to QC Mallards and River Bandit games. We even included him in our family pictures.

Since Kevin travels for a living, we were able to save up hotel points and airline miles so we decided to take Parker and Chase on their first flight! We flew to Texas and went to Six Flags and toured the River Walk. We swam in the ocean and went aboard the USS Lexington. We fed dolphins, sea lions and pesky sea gulls. We held an alligator and were splashed by an Orca. It was an awesome trip!

The next year we went to Minnesota with the entire family, grandparents, aunts, uncles and cousins. We rented cozy little cabins, made s’mores over the campfire, and played games. The kids loved fishing out of the bass boats and pontoon boats. We took them tubing and they swam, but they spent most of the day in kayaks and paddle boats. We had reservations to go back this year, but with Parker’s chemo schedule, we don’t think that’s going be feasible.

Last year I had Kaitlyn, so we didn’t get to take a vacation with Chase. He did stay with us throughout the summer though. We continue to include him in the holidays and family get-togethers.

I guess what I’m trying to say is, Chase is family. He may not be my biological son, but I sure consider him to be one of my own and love him just the same.

Chase and Parker are not only brothers, they are best friends. When Chase stays with us, they can be heard giggling all day and way past their bed time.

Chase is 15 now. When he came up to the hospital to see Parker, my heart broke for him. Tears were streaming down his face. Parker started to cry too. It’s the only other time Parker has cried since they told us they thought it was cancer. Chase was also a wreck when Parker went in to surgery for his biopsy and port placement. When I gave him a hug, I wanted to never let go. His aunt has brought him to visit since, and he’s stayed a few weekends with us. I’m happy to tell you that they’re back to laughing and having a good time!

This has been very difficult for Chase though, so to those of you who have thought and prayed for Parker, I would also like you to include Chase. We would be mighty grateful!

And to Chase,

We love you, Cheeseball.
Hang in there.

Sincerely,
Wrinkles.
;)

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“It’s me and you, mom. Me and you.”

2/20/2015

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I know most moms believe they have a unique bond with their sons, and I’m no exception. For the first 8 years of his life I was a single mom, and he was the single most important person in my life. He knew it too!

My life revolved around Parker. Every decision I made, I did so while considering Parker. Throughout college. Throughout job changes. Throughout moving.   Throughout a long term relationship and a break up. Throughout another relationship and ultimately marriage. Throughout the good times and bad times, it’s been him and me. We were each other’s constant.

I read multiple books about parenting. I always put him first. I believe it’s one of the reasons the one long term relationship I had before I met Kevin failed. Everything I had, I gave to Parker. I was responsible for his life, and I was determined to make it a good one!

When Parker was little, I would sing along with the radio and dance while holding him every morning. It was our morning ritual. When he got too big to hold, I’d grab his hands and dance while he stood there looking at me like I was crazy. I still sing to him. In the car, at home, it doesn’t matter. And I’m not a great singer by any means! He always smiles and shakes his head as if saying “here she goes again” and I smile in return.

We went to the local park or zoo every week. We took walks outside during the summer almost every day. He loved playing in the snow. I always had crafts and projects for him to do. He made his own Christmas cards for the family. He especially loved finger paints and Play-Doh. I always had his artwork hanging up, and I still have some filed away in a box. I watched super hero movies and cartoons with him. I played with cars and action figures with him. When he was older, we would go camping and hiking and take various trips.

We did those things together. Him and I.

Don't get me wrong. I wasn't a perfect mom and I made mistakes too.

But I believe those experiences are a huge reason why we are so close. He’s open with me and tells me some of his inner most thoughts, even some embarrassing ones. He comes to me when he needs help. We talk about current events. We have a mutual respect and trust for one another. When I was worried that he was holding things in when he was first diagnosed, I had him talk to the hospital psychologist. She asked him who he would be able to talk to if he had worries and concerns, fear or doubts. He told her, “My mom.” I was ecstatic about that response. He trusts me and knows he can talk to me.   I think that’s every parent’s wish. To know my son feels comfortable and safe enough to come to me was confirmation that I have been doing a good job, and during a time when I was questioning if I had done everything I could, it was very much needed.

When the doctors would come in and give us the news about the scans, the biopsy, or any other results, Parker wouldn’t look at them. He watched me. I figured he was gauging my reaction, watching me to see if it was good news or bad news. I asked him why he watched me when they gave us the results, and he responded, “Because I want to make sure you don’t cry.” He was more concerned about me than himself! I quickly learned to “put on my armor” as I’ve heard other moms say. I don’t want him to worry about me when he has himself to focus on. That just shows his character though. He’s selfless and caring. So sweet and thoughtful. And I couldn’t be more proud of him.

Parker has always shared me with his brother, Chase. (I’ll tell you about him in my next post.) And now Parker shares me with Kevin and Kaitlyn, and he never doubts the magnitude of my love for him. But throughout all the changes and the people who have come in and out of our lives, we have always had each other since the day he was born. As Parker says, “It’s me and you, mom. Me and you.”

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A new way of Life

2/11/2015

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Before the diagnosis, our lives were relatively boring.

We had previously lived in Madison, WI. Kevin worked for a health care software company in which he traveled to client sites to help implement electronic medical records. I worked as a Recruiter/Account Manager for a staffing agency. We married in 2010. A few years later, we decided to try and have a baby. We wanted to raise the baby around our family, so we decided to move back to the Quad Cities. It ended up working out really well for Parker too. The school he would be attending was brand new. So, it was not only a new school for Parker, but it was a new school for every kid! He quickly became friends with a great group of kids, and his teachers were wonderful. Kevin and I kept trying to have a baby. After having a heartbreaking miscarriage, we learned we were pregnant again. We welcomed Kaitlyn in May, and Parker started Junior High in the fall.

Kevin still traveled for his job, but I wasn’t working during that time. Our weekly routine consisted of Kevin going to the airport early Monday mornings and getting back home late Thursday nights. Every once in a while he would get a break for a week and work from home. I would get up every morning, get Parker off to school, take care of Kaitlyn and do monotonous daily tasks. It was nice. It was simple. It was routine. Now our lives are anything but routine.

The day before we’re scheduled to get chemo, Parker has his blood tested. When counts are good, we get a call saying he’s able to start chemo the following day. If counts are low, we just wait a few more days and try again.

Our suitcases are always packed and ready to go, so I usually don’t have much packing to do. I’ve been lucky and haven’t had to pack for Kaitlyn and bring her yet. Kevin’s job has been very flexible, thankfully. We also bring Parker’s PS4, some card games, and my laptop for entertainment. They have a teacher at the hospital, so we also bring schoolwork.

Usually we have to be at the clinic at 8am, so we leave the house at 6:30am. Before we leave home, we put a numbing cream on his skin so he doesn’t feel the poke when they access his port. I always get him McDonald’s breakfast on the way to the hospital too.

The first thing we do when we arrive is go to the pediatric specialty clinic on the 2nd floor. They get his vitals and access his port. Then if we’re lucky, they send us to our room on the 3rd floor. If we’re unlucky, they give us a pager, just like what you would get while waiting at a restaurant, and buzz us when a room opens up. We’ve had to wait a couple of hours before. In those cases, we wander around for a while until they page us. Then, if we’re really unlucky, we get a shared room...that story is for another day though.

Once we get to our room, Parker crawls into the bed and goes back to sleep because he usually stays up too late the night before and getting up at 6:30am is too early for him! While he sleeps, I go back out to the parking garage to get our luggage. We wait for the doctors to enter the orders and the pharmacy to send the chemo. They hydrate him, and he has to pee a certain amount before they are able to start chemo. We pass the time watching movies and playing games when he’s feeling good. When he’s not feeling well, he sleeps and I usually sit on my laptop, read or watch movies. He and I talked about journaling. I ordered him a cool journal and some fun pens online with hopes that he’ll start writing about his experience. He seems interested in doing so. He also has developed an interest in photography. That started in September when we took a trip to Wyoming, but he’s really getting into it now. He was taking pictures of his sister at home last week. I’m hoping he’ll be able to go outside during his hospitals stays when the weather gets nicer and take some pictures to pass the time. He also texts his friends a lot more now and they have been great distraction!

There are Dance Marathon and Child Life volunteers that will come and offer to play games with him. They also have an activity planned every day, but he hasn’t participated in them yet. They also have a therapy dog that comes around, but he was sleeping the last time it was here. Every Monday they do Bingo on a hospital TV station. We have fun playing bingo, and if he wins, he gets to pick out a prize. He’s won a couple of times and has picked out Scrabble, Jenga, and Connect Four. They have more than just games, but he enjoys getting and playing the games.

After sleeping all morning, Parker usually wakes up around lunch time. He doesn’t like the cafeteria food. Just thinking about it makes him sick. This week he coerced me in to bringing Pizza Rolls, Hot Pockets, and popcorn. I intend to bring healthier foods next time, but I’m going to need ideas! I did talk him in to trying french toast off the room service menu for dinner, but he got sick before he could try it. Usually we order pizza or delivery from a restaurant a few times during our stay, and Kevin brings us dinner when he visits.

When we get home, we usually go straight to bed. It doesn’t matter what time it is. I usually don’t sleep well in the hospital, and he’s usually tired from the anti-nausea meds.

The next day we have to give Parker an injection to stimulate the growth of white blood cells in the bone marrow.

It takes a while for Parker to get back on a normal schedule after being in the hospital. After his last five day stay, I found myself making him breakfast at noon and dinner at midnight. He was staying up until 2-3am, unable to sleep.

He’s been able to go to school a few times since December. School wears him out though. He usually can go one day, but sleeps most of the next. I also don’t send him when his counts are really low because I don’t want to risk an infection or illness. His school has been very understanding.

Every Monday, Tuesday and Wednesday he has to take an antibiotic twice a day. We have 4 different anti-nausea meds at home he can take. He has a mouth rinse he has to do 3 times per day to keep mouth sores away. Our kitchen counter is now a mini pharmacy.

He gets blood work done twice a week to check his levels. If his hemoglobin is low, we have to go to the hospital for a transfusion which usually takes about 5 hours. That’s done outpatient at the pediatric specialty clinic. He hasn’t had to receive platelets yet, but that’s always one of the things they check too.

At any time he could get a fever. When that happens, we have to head straight to the hospital, and they give him antibiotics as a precaution. I find myself frequently feeling his forehead to see if he feels warm. Most of the time I think he feels warm, but when I take his temperature, it’s fine. I annoy him by constantly asking him if everything is ok. I’ve heard, “Mom, I’m fine.” numerous times followed by an eye roll.

But that’s our new “routine”. It’s much busier than before. And though I didn’t think it was possible, we’re closer because of it. Because though the days might be long and boring, at least we have each other.

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Parker, my hero

2/2/2015

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Remember when I said cancer is ugly? It is. I’ve watched my son lose his hair. I’ve watched him turn down his favorite foods. I’ve watched him vomit so hard he struggled to breathe. I’ve watched him lose over 15lbs in a month.

Parker receives six chemo drugs: Vincristine, Cyclophosphamide, Topotecan, Doxorubicin, Ifosfamide, and Etoposide. He’ll receive 6 cycles before surgery. He just finished cycle 4. After surgery, he’ll have 11 more cycles.

The first cycle included Vincristine, Cyclophosphamide, and Topotecan. He didn’t get sick. We were told it would be anticlimactic, and it was. You expect the worst right away, but no. Chemo wants you to have false hope.

His second cycle included Ifosfamide and Etoposide. He was sick nonstop with these two assholes. I guess I shouldn’t call them assholes…they’re killing Leonardo. We’ll refer to them as the not so pleasant drugs. When we went home, I thought the nausea would lessen. But there’s this thing called delayed nausea, and Parker had it. He quickly learned he couldn’t eat a full meal. He does better eating small amounts all day long. And if he doesn’t get enough sleep, it makes it worse.

We tried to find a good balance of getting him out of the house and time to rest. We went to a Mallards hockey game, when they went in to over time, Parker let me know he couldn’t stay. We started walking to the car, and he had to stop, afraid he was going to be sick. We took him to watch his friends play basketball. At half time, he told me he needed to leave. The minute we stepped outside, he leaned against the school and got sick.

We had three weeks off of those not so pleasant drugs. Things started to look up after two weeks. We took him the boys’ basketball practice and he had such an amazing time. They gave him a huge basket full of awesomeness. He watched them practice and even shot a few baskets himself. Most importantly, he didn’t get sick. He was smiling and laughing, and I soaked up this moment of bliss. Twice he was able to visit a friend’s house without getting sick. One of the moms said that her son told her his face and stomach hurt from laughing so much with the boys!

It felt like just when he started to feel better and have more energy, we found ourselves on the way to get the not so pleasant drugs again. I dreaded it. Parker dreaded it. He said, “I don’t want to go, mom.” I replied, “I don’t want to either, Parker.”   Five minutes later he was dancing in the dining room and laughing. I just wanted to cry.

So we reluctantly made our way back to the hospital, only to be sent back home because his blood counts were low. What a weird feeling though. We were both happy to be going home, but anxious to start chemo and get it over with.

After a couple of days and getting the phone call that his counts were high enough to start chemo, we again made our way back to the hospital. For this cycle of Ifosfamide and Etoposide, they administered anti nausea drugs around the clock instead of as needed. These make him incredibly sleepy. I watched him sleep 22 out of the 24 hours in a day, with the exception of him getting up and going to the bathroom every two hours. I know I annoy him when every time he wakes up I ask him a series of questions. How are you feeling? Do you have any nausea? Are you hungry? How about I order you something? Or would you rather have something from the cafeteria downstairs? But usually before I get an answer, he’s asleep again.   Maybe I should try one question at a time.

On days one and two he was able to eat without getting sick. On day three he slept through lunch and got sick after taking Nystatin, a liquid that he swishes around in his mouth and swallows to prevent mouth sores. He woke up around dinner time and ate 3 slices of pizza spread out over a couple of hours. On day four he only ate one bite of a breakfast sandwich and a small piece of pizza for lunch. That’s it. When we brought dinner in the room, he got sick again. He said it was the smell that got to him. It was chicken strips, mac & cheese and potato wedges, all of which he had previously eaten and liked at the hospital. From now on we’ll be eating in the family room or cafeteria. Today was day five, our last day in the hospital for this cycle. We were worried we wouldn’t be able to go home because Parker wasn’t drinking, and he couldn’t keep much down. He was determined to get home though, and he battled through it. Fighting to keep sips of apple juice down.

So cancer does suck. Big time. It is ugly.

But remember when I said cancer won’t make our lives ugly? It hasn’t.   He hasn’t lost his smile. He hasn’t lost his laugh. He hasn’t lost his sense of humor. He hasn’t lost his great attitude. My son is Awe.Some.

Even after getting so sick, Parker remains strong. He hasn’t lost his smile. And he definitely has not lost his sense of humor. He enjoys making fake vomiting sounds to see if he can get me to jump up and rush to his side. It works every time. He got an immense amount of joy from shooting innocent bystanders with saline syringes during his last stay at the hospital. He still cracks jokes, and he still gets that sly grin on his face when he has something sarcastic to say. And he still has the best giggle. His attitude and positivity is admirable. He has handled this with such grace.

Parker is remarkable, amazing, outstanding, incredible, wonderful, marvelous, splendid, and fantastic! I can’t accentuate enough how great he truly is.

He’s absolutely Awe-Inspiring. He’s my hero.

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Parker’s Brother, Chase

“It’s me and you, mom. Me and you.”

A new way of Life

Parker, my hero

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