Hope4Peyton

Today was Nathaniel and Rachael’s first day of school.  Nathaniel started 3rd grade and Rachael started kindergarten.  I posted new pictures in the gallery of them in their uniforms, ready and excited about a new year with their friends and teachers.  We have an amazing school that has been so supportive through last year’s health issues and with Peyton’s health this year.

Sunday, Rachael and I went to a birthday party for a friend of hers and Peter took Nathaniel to Universal Studios for a few hours of male bonding time.  Peyton stayed with her Grandma Sharon, successfully leaving mom and dad for the first time!  Nathaniel and Dad picked out the funniest shirt for Peyton.  It has the Incredible Hulk on it, and the singular word “Unpredictable”….how true how true!  It seems appropriate with her mood swings and temper due to medications, and we had to laugh as she wore it.

Just to keep things in perspective, we have a bathroom tub that’s clogged up to New Jersey and the AC went out on the family-mobile….sometimes you just have to roll with the punches.  If it can be fixed with a phone call, it ain’t that bad!
—Anissa

Today's entry just isn't as cheery as some of my past ones have been.

Peyton's chemotherapy visit today was just a heartbreaker. She knew what we were there to do, she was terrified of anyone who came near her and founght our nurse Cindi every time she tried to do anything for her. She cried and cried until she was a sweaty mess. She was upset, her steroids make her unable to deal with any kind of emotional changes and she's just having a hard time coping with these treatments. The doctor did let us know that it doesn't take long for the mood swings to wear off after she goes off the steroids and then we'll have our sweet little girl back. She did still enjoy the painkillers and had a half hour where she was a rolling bundle of laughter and giggles. It's almost worth the rest of the time to see her so happy during that time. It's the most she smiles all week.

We got what's called the "protocol" for the next stages of her treatment. It's basically just the outline of her treatment plan, they let us know what the medications are, how often she'll get them, how they're administered and what the effects of them are. It took two sheets and was just daunting to look at. Starting in a week or two, she'll be going for outpatient chemo every day for two months. Her medications vary as to what day day they fall on, some are oral, some are shots, some are IV, she will have a spinal tap every Friday for the next 6 months. She has to go under general anesthesia for a spinal tap and bone marrow aspirate on this coming Friday because of the importance of this procedure. This will be the day 29 of the "induction" period. They test to see if she's been successfully put into remission and if she is then she'll move into the next phase. If not, she'll be categorized "slow responder" and will have to go through an "intensification" period that is just blasting her system to get her into remission (which they consider getting her leukemia count to under 5%).

So, we're praying next Friday will bring a successful report on her bone marrow results. It will be the easiest path for her, she already has a much harder treatment plan because she is CNS positive, which is the high amount of leukemia they found in her spinal fluid, and that puts her in "standard risk high". She'll be on 5 different chemotherapy medications for the next phase of her treatment, they'll take her off the steroids and her blood counts will start to drop rapidly.

They've warned us that this is the point that she'll start to "look" like a cancer patient. She'll be pale, lethargic, she'll need frequent transfusions, her immune system will be extremely vulnerable, her hair will have fallen out and she will lose her appetite. It's just not a rosy outlook for the next couple of months. This may be the hardest part to adjust to, but then none of it has been easy.

If anyone local is interested in donating blood specifically for Peyton, she is type A positive. I would encourage everyone to donate anyway, because the blood banks are always short and never has it been such a pressing issue to me as "what if they run out and my child needs it". It sounds a little selfish, but sometimes it has to hit home to really hit hard. Peter and I are not allowed to donate blood for Peyton, in case she should need a bone marrow transplant we are her best chances and if she received blood from us it could cause her body to form antibodies that would reject the bone marrow. So, even this we can't do for her.

Please please keep the prayers going, it's a frustrating and emotional time for us. We have so much on our minds and so little we can actually do. Our amazing friend and family support system are just fantastic and we get encouragement every day. Thank you.

On a funny note, Peyton and I met some friends for lunch as a celebration for a completed treatment. We went to Olive Garden and my friends just stared in awe as this child inhaled a bowl of spagetti so fast it was amazing! This was before anyone else at the table had even ordered! Then as our food arrives, she's still eating! Olives, tomatoes, chicken, breadsticks…..and by the time we had finished she was sitting up in her chair, with her eyes closed, trying to go to sleep sitting up. It was hysterical! We do try to do something special after each treatment, she can't eat before so she's starving as soon as we leave. She so enjoys that first meal of the day…..actually, counting the one she has at 3AM, it's the second meal of the day.

—-Anissa

Wow, women in menopause ain’t got nothing on Peyton! She’s going to be a bear someday when she’s got PMS. Poor thing goes from laughing hysterically to crying uncontrollably about socks in the blink of an eye. I feel so bad for her because she has no idea why her emotions are all out of wack and she can’t do anything about them. We only have two more weeks of steroids and then hopefully she’ll start to level out soon after.

I really thought that with my youngest almost turning 3 we’d be through with 3 AM feedings, but every morning she smacks me and announces that she’d like some chicken and black olives. So I get up and I make them for her, and watch her eat like she’s been on a 3 week fast. It’s truly astounding. Then the poor things moans and groans because she ate too much too fast and her tummy hurts.

Poor Nathaniel and Rachael sort of stare at her in awe, the way you would regard a tornado in the horizon. They’re never quite sure if she’s going to laugh at their antics or slap them….it’s runs about 50/50.

I’m pretty beat these days, keeping up with her moods is a full time job and my new job as short order cook 15 hours a day is prepping me for a fine career in the fast food industry if I ever want one. I had a wonderful friend Chris come over today and take Nathaniel and Rachael for the afternoon, she took them to play and go swimming and it was so nice for them to get out and have some free kid time. I’m so thankful for my friends that are stepping in to help wherever they can.

The two older kids get to go meet their teachers tomorrow at school and then their first day is Monday, so hopefully that’ll help Peyton’s moods. She really does prefer when they’re gone. Sad to say, but as much as they try to cheer her up, these days it genereally ticks her off. So, they’ll be busy, she and I will spend the days trying not to send her off the deep end…it should be fun for everyone!

—-Anissa

🙂 Peyton’s nurse suggested cutting her hair because her hair is at the point it’s going to start coming out. Yesterday, she and I sat down and had a discussion about cutting it and who should do it which consisted of this:

“Can Miss Theresa cut your hair?”
“NO! You do it!”
“Ummmm…can Miss Kim cut your hair?”
“No! You do it!”
“Mommy will buy you an ice cream if we get it done at Cost Cutters.”
“No! Mommy do it!”

So, with scissors in hand, I did the deed. And as I’ve posted with the pictures of her new haircut, the good thing about the chemo is that the haircut will be falling out soon, so that’s not a bad thing! It’s not terrible, but not something you’d want to wear to the prom.

She’s also getting seriously round. They call it “moon face”, a side effect from eating like a linebacker from the steroids, but she also looks about 6 months pregnant, it’s so cute. She looks like a little chipmunk with these round little cheeks….she looks a lot like me, actually. hahahaha

You have to love the honesty of children also. In telling Rachael and Nathaniel about Peyton’s medicine and what it was going to do to Peyton’s hair, this really concerned Rachael. She wanted to know if people were going to laugh at her. I just thought that was so sweet that she didn’t want people to make fun of her sister. Then she says, ” Because she’s probably going to look pretty funny. I’ll laugh at her a little bit, but just once and I’ll do it real quiet.” We all cope in our own ways.

We’ve had a wonderful response to the website, friends and family, strangers (or new friends, as we prefer to think of them) have just flooded in to bring best wishes and encouragement. We appreciate everyone and all the wonderful support!

—Anissa

Wow, you haven't been amazed until you've seen the amount of food that will actually fit inside a 2 year old. Due to the steroid they have her on, Peyton will consume a full meal every 2-3 hours of the waking day, AND wake up around 4 AM to let me know that if I'm interested, she could stand to eat. To which I tell her, if it ain't vital, lay down and go to sleep. She will be shoving food in her mouth as she complaining that her tummy hurts because she's full, because the medication makes her feel as if she's just constantly hungry. Poor thing, it's putting a lot of stress on her stomach. She's put on a whopping 5 lbs in a little over 2 weeks and considering she hardly ate the entire time she was in the hospital, that's pretty impressive. It's a good thing though because she'll be on the Decadron through the middle of August and then her appetite will be influenced more by the chemo. She'll start to lose weight then, so it's good that she has a little extra padding to lose.

Our good friend, neighbor, and Peyton's favorite babysitter is going to give her a haircut this week to help alleviate some of the trauma of her hair falling out. Our nurse said it was time as the third does of Vincristine usually starts to do the trick and we'd already started to see eyelashes and the random strand of hair coming out. Hopefully she'll be willing to wear some cute little hats or bandanas, but at least she's got a cute head. She's like her daddy that way.

We're so glad to see the friends and family who've made it this site already, we don't expect people to log in every day, but it's a way for us to express what's going on and keep you in touch and updated. We thank you all for your sweet words and prayers and please feel free to contact us if you'd like. We are ok to talk!

—Anissa