Hope4Peyton

It always feels great to come home from these hospital visits. Today, the kids were at school and Peyton wandered the house and looked for them, and was upset to find that they weren’t there to welcome her. She was ecstatic to see Daddy and the dog was thrilled to see her.

We stayed an extra night because we needed to get results from the bone marrow aspirate that the performed yesterday afternoon. The worry was that in her CBC showed signs of new blasts (leukemia cells). When the doctor explained that my heart sank, that would mean that she was having a relapse and her chemo was not working and we would be starting from square one with a much heavier treatment plan of chemotherapy. But I was relieved to find out that their suspicion was that a medication they gave her to boost her white cell counts was causing the reading. Blasts are essentially immature white cells that go berserk, so in forcing new healthy white cells to grow it would give a false positive test result for new leukemia cells. We are thankful that the bone marrow results showed that no new leukemia cells were present and she is still where she is supposed to be as far as that benchmark goes.

On a side note, Dr. B, our oncologist says “If she’s relapsed, I’m the Pope.” I told him “We’re not Catholic, that don’t mean a lot to us, get me the pathologist report please!” Glad to know he’s still not the Pope!

This is during Peyton’s Redman reaction to vincomycin

Her foot looks much better. The infection is gone, and we continue to give her antibiotics by mouth for the next 5 days. It is frightening to think how fast the infection set in and spread, and how dangerous it is for her system. They were concerned that it could spread into a blood or bone infection, but catching it and treating it early is key. All the hand-washing and mask wearing can’t help us fight off something that everyone has already and that’s a scary thought. So, we watch any scratches, cuts or bug bites carefully and pray for the best.

We have had fantastic support during this last hospital stay. “Team Mayhew” as I like to think of it sprung into action quickly and efficiently. Grandma Sharon stepped in to help make sure baths, household functions and homework were completed as usual. Jill Bonilla picked the kids up every day for school and Kelly Diaz got the word out that we were in the hospital and meals were provided as well as offers of assistance in any way we could think of. Messages of love and concern flooded in and kept my spirits up during the waiting times. God provides for all our needs through special people and we are so grateful to them all.

We have so many thank you cards to send out for so many reasons and I just hate that I haven’t gotten people acknowledged. I hope that those who have helped us out in whatever measure know what it means to us, how your generosity is appreciated. Time to sit down and write out the cards to send thanks is hard to find right now, but that doesn’t mean that it isn’t truly felt in our hearts. And I WILL get those cards out!

With continued faith in God
—Anissa

Peyton's foot looks much better after several doses of her "we kick butt and take names" antibiotics. The swelling is almost completely gone, the redness cleared up and the actual spot of infection is the only area that is still sore to the touch. She did have an interesting afternoon when we noticed a reaction to one of the antibiotics that turned her face and ears red…Redman Syndrome…I have pictures, they're on the camera, when I get them uploaded you'll see what I mean. From the crown of her head, around her ears, down to her eyes, then around her nose and her lips, but not her cheeks, she was the color of a tomato. Wierdest thing I ever saw! I gotta tell you, not really funny, but maybe slightly amusing in a "Hey, my kid's two-toned kind of way!" They gave her some benadryl, she cleared right up, passed right out and a nice quiet afternoon was had by all.

A wonderful person came to see me today, Stacey Chubbs. She is a local mom with a son who is in remission from cancer!! Today is the first time we've met, we've only emailed a couple of times, and when she read we were in the hospital, she just packed up a little goodie basket of Peyton and me and trekked on down here. What a generous heart this woman has, and we just sat and swapped chemo war stories. We were able to talk about hardships of cancer like most people talk about the hardship of finding a parking spot at the mall, it's just become part of our every day life. I'm so thankful that this woman has been able to take her son's experience and turn it into an opportunity to help other families and reach out in love and support. What a shining example of love!

Today, Peyton and I were just walking around our floor, getting out of our room and as we passed the windows she said "It's a beauiuutiful day!" I felt a little sad that she was staring at the beautiful day from inside the glass windows, but also I appreciated seeing her eyes light up at seeing the brightness of the sun, the big fluffy clouds and looking out to watch people walk around outside. She has become very used to being at the hospital, it's surprising how fast they adjust to these changes. She knows her way around the floor and can show you to the play room, where the fish tank is, where they keep the milk and crackers, where the elevators are, and where the cabinet is that houses the puzzles. She knows how to work her bed, she's got the nurse call button system down to an art and knows that she gets certain privileges while she's here. She loves having food in bed, movies whenever she wants, cool toys to play with and different people to look at all the time. As long as they aren't trying to mess with her, she's having a great adventure.

So, we accept our adventures, in whatever form they may come. We take life's little pleasures (apparently goldfish in bed really rocks!). We roll with the punches. We await what comes next.

Hopefully, we'll be going home Tuesday morning. Dr B mentioned that it was a distinct possibility, that we would get to leave with oral antibiotics to finish up. Fingers and toes are crossed, but we also know that if we have to stay, we stay for the best of her care.

Keep this in your prayers…Peyton may have been exposed to chicken pox, which isn't the end of the world, but would be a huge pain in the heiny. So, let's just pray that she doesn't come down with any symptoms and is able to bypass that extended hospital stay.

Love and inappropriate laughing at my kid's expense,
—Anissa

Saturday was a test in a parent's ability to keep up with their children….we lost. We started the day celebrating the birthday of a fellow classmate of Rachael's at Dinosaur World, fun was had by all! We then ran to the YMCA where Rachael was in her glory starting her first class of beginner gymnastics. She gave it 125% and had a fantastic time! We took a quick home break so that Peyton could have a nervous breakdown and the rest of us could have a nap. Good times! We're such party animals.

After regrouping, we headed off to our school fall festival which was a frenzy of games, free candy, cupcakes, hot dogs, friends and snow cones. Our day was topped by a birthday extraveganza for a friend of Nathaniel's that was acutally as much fun for me as it was for the kids because I do so love the hosts. What a crazy day!

And I realize and honestly admit that it was too much, that we probably should have let some things slide, but we feel the need to squeeze as much quality time in as we possibly can when we have the chance. It's so hard when we can never make plans, we never know when we're going to have to back out at the last minute, when we have to cancel everything because Peyton's going to get sick.

The point made perfectly clear because today I'm writing this posting from Peyton's hospital room. Yes, we had to ruin a perfect Sunday afternoon by trucking down to the hospital. Old killjoy had to get an infection in her toe!

It looks as though she got some sort of bug bite on her foot and it got infected with either staph or strep and was rapidly escelating. Luckily, we caught it and she's admitted and they're giving her heavy doses of antibiotics. They all have different ideas of when we're heading home. One says Monday, one says Wednesday, one has mentioned Friday…we packed to be here until December, just in case.

It rather freaked me out because first thing in the morning she had a bug bite, then she had a swollen toe, then she had a swollen foot and a toe that looked like a Viena Sausage! Next thing you know, she has these red streaks flaring up from her toe up her foot towards her ankle.

Our conversation
Me: Yeah, I think maybe I'll go ahead and call the doctor, red streaks up the ankle and all.
Pete: Probably a good call there.
Me: Allrighty
We're so getting used to this life and all that comes with it.

So, she's already doing better, she was looking really rough when we left for the hospital, but now she's perked up nicely. She's had pain medication and they've brought down her temperature, and two doses of antibiotics. She had a nice little nap. She's currently chewing on a straw and watching Blues Clues, so she must be better. She told me she's hungry and I've ordered her scrambled eggs (at 9:30 PM, the kitchen had to LOVE that) and a banana. Hopefully the two of us will get some sleep tonight.

We'll let you know if anything changes!

With love
—-Anissa

ps…I totally forgot to post, Peyton added a new interesting trick to her transfusion repertoire….breaking out in HIVES! Yeah, she had a wierd allergic reaction during her last transfusion. So, they gave her benadryl, she passed out, made for a totally relaxing afternoon for me. I highly recommend it for everyone. But now the benadryl thing is something they have to give her everytime they give her red blood.

Tuesday’s Brandon News brought a story very close to my heart. There is a 6th grader student at Randall Middle School named Taylor Arrington. She’s had cancer for 3 years and still fighting the good fight! Three moms from the community who have lost children to cancer have banded together to support the Arrington family with a yard sale fundraiser to be held Saturday the 21 from 8-1 at Grace Community United Methodist Church.

The story told of brave families who faced cancer with their children and are letting the valiant spirits of those kids lead them to reach out and help others. I’ve read so many websites and stories where parents are inspired to do great good for others through the memories of their lost child.

We encourage everyone local to visit that yard sale, they’ll have bouncy things and face painting, a blood mobile for donations, and an opportunity to reach out to another family in need.

I know I’ve posted about us starting a non-profit organization to aid families like ours coping with childhood cancer, and this just drives me harder to bring something good out of all the hardship we’ve gone through. We don’t want it to have to be later in Peyton’s memory, we want it to be NOW in her honor that we take this chance to help. So, we’re encouraging everyone to send ideas for a name for a charity foundation that will be started in Peyton’s honor and we hope to be able to spread God’s love through it’s work.

With Love
—Anisa

Frankly, I had to put this picture up again because everytime Peyton sees it she gets a massive case of the giggles. Sort of looks like Diana Ross and Bo Bo the Clown had a baby, huh?

Today, Monday, was our treatment day. We went in early and got her chemo, just an IV push of a medication called Vincristine. It makes her unable to sleep well, kills her apetite, makes more hair fall out and to add insult to injury, causes constipation. Like if all the rest of it isn’t bad enough, she gets constipated….like salt in a wound! However, the actual medication isn’t a bad treatment day and that was the end of Intensified Consolidition. Yeah!!!! One more cycle down!

Enter Augmented Interim Maintenance. The next cycle starts off with a bang, the first week has a bone marrow AND a spinal tap. But she gets no shots in the leg during this cycle and visits are actually a little less often, the plan is to be there for chemo every 7-10 days. She gets 4 chemo meds during this phase of treatment, we’re back to the spinal injections twice during this period and then the rest are IV meds, so that’s a good and not so good.

Right now, it looks as though we’re going to get a nice little break in chemo though. Her ANC is 50 right now….yes, that’s right, I didn’t leave off a 0, it’s actually down to 50 (reminder, 500 is considered really low), so she’s close to the bottoming out of her immune system. They remind me that it’s up and down, it continues to rise and fall, and I’m getting used to it. Because her ANC has to be greater than 750 and her platelet count has to be at 85000 (it’s currently in the 70000 range) for her to begin her next cycle of chemo, they will hold off on starting until her body rebounds a bit. So, it can be anywhere from a week to a few weeks of going in for finger pokes to see what the counts are and waiting. I’m looking forward to letting her body get a little rest. Although she really does look and act great, it’s in perspective of what she could be. She’s bruised all over her little body, she’s terribly pale and she’s still on the downslope of the scale with no apetite. On the bright side, she hasn’t had hardly any nausea, her hair looks like peach fuzz where it’s starting to get longer in the spots it hasn’t fallen out and she’s still the cutest bald person in our house (sorry, Pete, love ya, but she IS!).

Tuesday morning we’re heading in so that Peyton can get a transfusion of red blood cells because her count was 7 (11-14 is normal for chemo patients) and that should give her a nice boost of energy and make her feel pretty good. We’re getting “Mr. Red” as she refers to it. She calls her platelet transfusion “Mr. Yellow”. Somebody asked me today how she can manage to be so good during her transfusions, when the red blood transfusions take around 4-5 hours total. I have no idea. I would never have thought this vivacious 2 year old would be able to sit and mellow while hooked up to a machine but she does it without fail (except for that one time she cut the blood tubing with her scissors, but the nurses make sure to keep all sharp objects away from her now).

She is so good, she watches movies, plays with puzzles, the staff does a great job of keeping her mind occupied and now she’s even able to get a nap in during those long stays. I’m taking a nap mat in so she can lay on the floor instead of squishing up in the seat of the lounger. She just knows, and is so careful of her “tubie” and how amazing is it that she can do that?

We continue to be positive in her treatment and thankful for the compassionate and wise hands that guide her through this illness. I ordered her a medical kit playset today so she can spend time indulging her interest in playing like the doctors and nurses. They are always amused at how she helps them, she pushes her own IV fluids when they will let her and she flushes her own port whenever she gets the chance. She’s got the blood pressure and temperature thing down to an art and has absolutely charmed the pants off everyone at the clinic. She’s a bundle of joy and they love her for it.

We have a busy week ahead with book reports, report cards, birthday parties to attend and just keeping the Mayhew ball rolling.

With Love
—Anissa