Hope4Peyton

Peyton’s classmates met her at the door this morning with big smiles and applause…she returned their open affection by frowning and pushing past them to hang up her backpack. She’s a charmer, that one. It was hard for her to get back into the groove of going back to school, she would have been perfectly happy with just skipping the last few days of school to cling to my side. However, as I was developing a friction burn from her co-dependency, I opted to make her go and be social for yet a few more days. She had a good time, no matter how much she tries to pretend she doesn’t, I have my sources and I hear the happy tales.

I spent the day catching up on errands and getting some things accomplished…not everything by any means, but a start was made in the list of “to do’s”. I feel like there’s a lot of catching up to do before I get completely swamped with the rush of summertime go-go-go with the kids.

Rachael’s birthday is just around the corner, next Friday she turns 7! She decided at the last minute that she wants to have a pony party, which we are lucky that we have a friend that does exactly that. However, this is the child that refused to actually get ON the pony the last time we were with them…so I’m not exactly sure what she expects to get from this experience. We are also in a time scramble because there is no way that we can organize that before next weekend, there are so many things going on in the next few weeks and I just hope that we are able to squeeze in a fun birthday party for her.

The kids and I headed down to the CCC early this afternoon to take part in a photo session for the new website. The kids were clean, cute and full of goofiness. I can’t wait to see the outcome and they are excited to see themselves on the Center website.

Instead of our normal group meeting tonight, we had a drum circle. It was a really good way to break things up, maybe a nice way to start back to group after such a long spell of heart ache. Everyone…kids, parents, staff, volunteers…banged on drums, rattled maracas, shook tambourines, made a huge general racket. It was awesome. There was no “share your feeling” moments tonight, which was probably a good thing, because there really didn’t need to be 20 moments of “I feel sad, I feel scared, I feel angry, I don’t know what to do with it, this sucks”. We all know it, we all feel it. We were able to share in a much more casual environment, without a formal group setting, just roaming from conversation to conversation…we were able to laugh and joke and that is so precious. There is really no way to explain how being with these other parents, these families and these amazing children help me regroup and focus. One might think it would be harder to face going back each time, but even though it is in one way, it comforts me in a greater way.

Tomorrow will be the 3rd funeral in 4 weeks. I will be going to say goodbye to little Kaylie Gunn tomorrow, a child who had 9 short months before cancer came into her life. She had precious few times when she was able to be home and just enjoying time with her mother and grandparents, but she did enjoy them when she had the chance. She was loved by anyone who had the opportunity to get to know her. She was all gorgeous big eyes and smiles and she will be remembered and loved forever.

I did some updating on “Our Friends” page….adding friends, updating photos of old friends (it’s just awesome to see how much some have grown and changed!), devoting the end of the page to remembering the sweet children who have passed. Before I didn’t separate the children who’ve been lost from the ones who are still living, but now I want to make sure that if you come to this site, and you see that page, you are struck by the true meaning of their loss. I don’t want anyone to forget that those children are loved, cherished and remembered.

f.r.o.G..fully relying on God
–Anissa

I passed out last night….a complete, face-down, loss of consciousness. I vaguely remember Nathaniel coming in to tell me he was done with his homework and heading to bed, and I know Rachael was already asleep, but after that it was all dark and sleepy. After Rachael’s music performance at school we went for a celebratory ice cream cone and then home to bath and bed. Once Rachael was snuggled down for the night, Peyton begged me to come lay down and rub her tummy because it was hurting. I have no idea if any rubbing actually occurred, I’d like to think that if she was in any real pain I was responsive, but I have a feeling that the second my head hit the pillow I became a complete vegetable. After the brief interlude with Nathaniel at 9:30, my next breath of awareness was at 6 AM this morning. It was the best night of sleep I’ve had in over two weeks and it was the first time I’ve woken up actually wanting to get out of bed in I don’t know how long.

Clinic yesterday was pretty darn good. Counts came back great, her ANC up to 800, Hemoglobin went down to 8.4, and her platelets were…are you ready for this?….300,000!!!! Holy bounce back, batman! She got her Vincristine via port and started her steroids and she’s back on her regular nightly routine of 6MP and Methotrexate as well. We decided to hold off on keeping her on a regular dose of Valtrex/Acyclovir, the anti-viral, to see if her body can hold it’s own. Now that I am aware and know what to look for we can counter attack any viral return early on before it gets it’s rage on in her body. If she should have a second outbreak, we would probably have to stay on the meds for the duration of treatment.

We did get to go to Little Tales in the morning, they made ice cream and played and Peyton didn’t have to share her favorite people too much because we had a really small group. Between kids in the hospital, kids out for random illnesses and life in general, it was a small meeting. Peyton and I got to have lunch with Dana and Kay after Little Tales and before clinic. Peyton has decided that she’s no longer marrying Cody Bertoch, she’s going to marry Dana instead! I told her that she’d probably have to move out of state, but whatever…a Bertoch is a Bertoch, right?

Today I’m heading over to stay with my friend Lori at the hospital as her little one, Baby Leo, has his scans. Leo has Neuroblastoma and we are praying for great test results that show the disease is going away. It’s such a different world from Leukemia, but the anxiety and fears are the same.

Tonight, the kids and I got some tickets to see an advance screening of Chronicles of Narnia and we are excited to go see it! The Pediatric Cancer Foundation had tickets donated and spread them amongst the families.

I got excruciating news today. Kaylie Gunn went home to the Lord yesterday after a long and unbelievably hard battle with Leukemia. She was a beautiful little girl, diagnosed at 9 months old right after Peyton was, and she will continue to be adored and loved by her family and friends. I can’t believe that yet another dear child is gone, it seems too much to take in. Please pray for Kaylie’s family, for her sweet mother and Grandmother who never left her side throughout her fight. We’ll see you soon, dear Kaylie.

f.r.o.G…fully relying on God
-Anissa

I was promised that the computer would be ready by 5:00 PM Sunday, so I figured that by Monday we would be good to go on the “being ready”. My mistake! I got to the Apple store and the poor tech guy came out with his best customer service smile on and gave me the “It’s not ready yet, I’m so sorry, please understand yada yada yada” speech. Then the another guy came out and talked to me about the specifics of why it wasn’t ready for the second time. We agreed on the changes that would need to be made so that I could get my computer fixed, Peyton and I agreed to roam around the mall for an hour or so and then we could be on our way.

When we returned to the store it was just in time to hear some guy giving one of the service reps an absolute riot act. It was embarrassing for everyone standing there to listen to, why people think they can treat others like that is beyond me. Even when I had my teary breakdown at the store, it wasn’t in anger at the guy, it wasn’t his fault, it was just frustration and boo hoo-ing over my own issues. This guy was being an ass. Poor yelled-at-guy had to come over and tell me that it was going to be another 20 minutes before the computer was ready to walk out the door and he looked at me like he was totally worried I was going to lose it right then and there.

I had to laugh. I told him that it was completely fine and not to worry about it, we could just hang out and play with the computers. After he returned with all my stuff we chatted for a few minutes and I asked him if he was ok, because he still looked shaken up by the confrontation. We talked about it for a few minutes and I told that young man that if the worst thing that was happening to that guy was that his computer was on the fritz, he should consider himself darn lucky. Most people don’t realize that they are just that lucky. Mac guy told me that he wished more of the customers were like me….haha, I guess he didn’t talk to the guy who had to tell me it wouldn’t be ready on Thursday….and I just shared with him that I live in a world where people know what troubles really are and everything else is inconsequential.

Here’s the cool and completely unexpected thing! He was doing my paperwork and I was purchasing an IPod shuffle for my niece’s birthday, and when I got my total it was half price!

“Is this on sale?”

“It’s for your inconvenience.”

“I wasn’t that terribly inconvenienced, but thank you!”

“Well, consider it for being the nicest person I talked to today.”

Awwwwww

I was the nicest person he talked to today.

He really needs to get out more.

Note to self, if you really shmooze the Mac guy, they are at liberty to give you nice discounts.

We had a ho-hum day. Which is completely awesome. It was just a normal, humdrum day with no excitement and I loved it. Peyton felt good, I got stuff done, the kids had good days at school and it is how it should be.

My Mother’s Day was precious and sad. I had jokingly told the kids that I wanted breakfast in bed, but I knew that Peter never gets out of bed before I did so it wasn’t going to happen. But it did! At 7 AM, I got a box of Cinnabons tossed on my chest. A BOX of 6 Cinnabons…those suckers are heavy…and the corners are sharp! But the kids were extraordinarily sweet with their cards and school-made gifts and rank morning breath kisses and hugs and love. I can’t think of a better way to wake up…unless we did it a couple of hours later.

We met up for lunch with Pete’s mom and our friends the Willis family. Natalie found our website by Google search after her daughter was diagnosed with an Optic Glioma and she just happened to live in Brandon, she emailed me, our kids adore each other, we’ve become special friends and that’s how God works.

After lunch we headed home because Peter had to pack up to leave for Alabama and that was the sad portion of our day. Made a little easier on the kids by Natalie’s offer to bring them over to play in their pool for the afternoon. I hope the constant “Can we leave now” didn’t make Peter feel unloved because when we got home and he wasn’t here, we were all blue and we were missing him something terrible.

A HUGE thank you to the Willis’s for having us over and specifically to Ronnie Willis for including me in his Mother’s Day celebration. He made dinner and served it up and cleaned everything up and I got to indulge in Mother’s Day laziness even when my hubby wasn’t home to be the doer. So, I guess that’s a Thank You from both Peter and myself.

The rest of our week becomes chaos after 8 AM tomorrow.

Tomorrow is Peyton’s first Little Tales in 3 weeks, I’m surprised she’ s not started trembling and going through some funky detox. After that we have clinic to see how counts are and get an idea of how she continues to rebound. We are also going to be getting some chemo and possibly be starting back to our full regimen. Then in the evening we have Rachael’s music program at school.

Wednesday Peyton is taking the afternoon with Grandma and I am going to the hospital to hang out with a friend while her son has some scans done. Lori’s husband works out of town as well and I know full well how hard it is to sit and wait and wait by yourself, so we’ll be sitting and waiting together. When Peyton had her bone marrow in the hospital, I was blessed to have my wonderful friend Kay Bertoch volunteer to come up to the hospital and hold my hand and be at the procedure with me. So I hope I can be as supportive of Lori as Kay was of me.

Thursday we have family group night at the CCC, but the kids and I will be heading there early. The Center revamped their website and one of the features they have added are photos featuring some of the families they help. The “Kids” have already gone up, so you can see them on the site, and they are getting ready to add the “Siblings” and Nathaniel and Rachael are going to be highlighted there.

Group is going to be difficult. Each month for the last 3 months we have lost a family from group that we love dearly. They go to a bereavement group now, no longer a part of the “in treatment” group. It’s so hard to look around and not see them week after week. I can only imagine how hard it is on their side to realize its Thursday and that they’re not going, and then the reality of why they’re not going. I will be praying for these friends, their loss, their grief and their healing.

Saturday the kids are heading out with Grandma for the day and then I am heading out for the evening!! Whoooo hooooo!!! The CCC and a Gasparilla Krewe put on a Scavenger Hunt each year that benefits the Center. Teams form and we have a list of places we have to go, things we have to do, stuff we have to accomplish and ways we have to publicly humiliate ourselves. Last year…well…let’s just put the words pajamas-bar dancing-backwards ABC’s together and you get a tiny glimpse of what the night is going to be. Peter and I were able to be on a team together last year and we had a fabulous time. The Center hosts teams for the parents to give us the chance to get out on the town and to give the other teams a chance to meet some of the families they are impacting.

I am heading up a team of moms. We are moms who are either without husbands or have husbands who can’t go, so we are going to rock it girl-power style! Each team has to pick a theme for their team and wear costumes accordingly, last year we went in our PJ’s, we had dr/nurses, army, kitty cats, it was hysterical. Our team this year is going Cheetah Girl! That was the hilarious costume hunt we had at the Goodwill on Saturday, if I didn’t make it to the scavenger hunt at all, that day at the Goodwill would have been worth it all.

The week is slammed. Pray for stamina and strength.

f.r.o.G…fully relying on God
–Anissa

I wish I could say that the Mac gods were kind and benevolent, but they are a cruel, teasing master! After calling to be sure my computer was ready, we went to the mall in downtown Tama…only to find that they were mistaken, totally and utterly mistaken…it was NOT ready! Why? Why toy with my emotions like that?

I got Cinnabons instead. Because I am all about the comfort food. I get to post this one from Peter’s computer.

It has been an incredibly long week and there is much to update about. Pete did a great job of keeping the posts up to date, he doesn’t do it much anymore, but when he does he smacks that ball out of the park!

Wednesday my computer hit the skids. On a normal day that would be distressing, especially to someone who is as internet-dependent as I am. I have websites to check on, email to receive and holy cow! what if Lindsay Lohan does something really stupid and I can’t receive the up to the minute blow by blow of her actions.

But on this day, of all days, it was a tremendous stress. Whenever a friend heads to the hospital, there are always calls of “what can I do to help?” It’s hit or miss on whether is there anything that can be done. But we are always looking out for each other to see what we can do to lighten the load. We got tons of help and wonderful visitors to make our miserable stay at the hospital better…plus, we had Zack and I want to stress how vital his family’s presence was to making the long week bearable. It’s just an understanding of how heavy the load gets and a desire to try and help in carrying it.

But then something devastating happens that there is nothing that I can do. There is no food to be brought or toy to bring a smile, there is no right thing to say or distraction to be had. It is an awful feeling of helplessness to know that a friend has lost a child, there is no comfort that we can offer, only prayers and love.

Then I was so happy when the Keslers asked me to make a video of photos of Sierra. I was just glad to have something to do, to be able to give something to the process, I guess. Mary Lynn, Sierra’s mom, and Katie, Angelo’s mom, came over Wednesday morning so we could go through photos and get started on the video that would play at Sierra’s service.

My computer goes kaput. Now, I hope you can see why I would start crying at the Apple store on Thursday when the tech tells me “we can’t fix it now, it’ll be at least 24 hours”. This poor guy had to stand there while I fell apart, telling him that I had to make a movie for a child’s funeral. I needed to do this, to do anything to help with this day. Good grief, I have nothing else, this is the least…and I can’t do it.

I think the stress of Peyton being in the hospital and two children passing just all got wrapped up in that moment, and I LOST it!

Fortunately, Cindy from the CCC loaned me her Mac laptop so that I could get the video completed in time. It took me forever because I had to keep walking away from the computer to just collect my thoughts and recompose. It was awful and beautiful and so so gutwrenching to look at her beautiful face, the pictures of her so happy with her family and know that these memories are all they are going to have of her now.

Friday was Sierra’s service. It was amazing to see the number of people who came to show this family how loved they are, how much Sierra’s life meant, what an impact they’ve had on the people blessed to know them. It is so hard not to sit in that room and see the grief and just pray and pray that it’s not us, that we don’t have to do this with our child. The day is not about us, it’s not about our struggle, but it pierces the core of my fears.

Another child with cancer dies and all we are left with is the wonderful joy she brought to the world, and the knowledge that our lives here are less with her gone. The words her mother gave me to add to her video were “We will see you soon”. Faith that we will all see her and the many others that have been lost in Heaven is all we have to comfort ourselves with.

We will see you soon, Sierra.

Peter came home on Friday night, partly to be here for Mother’s Day, partly just to see Peyton with his own eyes and see that she’s recovering, partly to be here for me when he knows my heart is hurting so much. We are both just exhausted. He’s been working and this is the third weekend in a row he’s driven the trip down here. I haven’t slept a complete night in over 2 weeks, between the hospital and the emotional upheaval. We are a tired household, but it’s just awesome to be together.

Today was so good for us. Peter got to spend some lounging time with all three kids while I went out with a couple of friends to look for costumes for a fundraising event for the CCC next weekend. Holly and Natalie and I hit the Goodwill to pick out a theme for our team for the Quest for Hope scavenger hunt and we had a blast. I needed to not think about what the past 2 weeks have been, to laugh and be silly with these friends. For a little while I was able to push that all away and just giggle with the awfulness of some of the dresses we picked, trying to decide on a theme for our outfits….ugly prom dresses, 70’s psychedelic, the Mormon cult with those hideous flowered monstrosities…we ultimately picked some cheetah print outfits. They are perfect, perfectly awful and we are looking forward to our time out.

It’s hard to even get in the mood to go out and try to have fun, but we NEED to. I have to find that joy because right now, it’s hard to hold on to. There is a lot of fear, anxiety and uncertainty. I have to find my happiness in the now. I have to follow my own advice that I can’t let the uncertainty of tomorrow steal my joy of the NOW.

Having some really special time with the kids and enjoying their craziness is so healing for me. I love to hear the things that come out of their mouths, watching the things they do because these children are my purpose and my reason. God blessed me, gifted me with these amazing little people and I am so excited because Mother’s Day is less about them celebrating me as a mother and more about me wrapping my heart around the gift of them making me a mother.

I pray that each of you that are mothers remember the feeling that you’ll have on this day, this appreciation and devoted love. It’s not just one day to say “You’re cool, mom”, but one day to remind you to embrace the responsibility, the joy and gift that God has bestowed upon us. We get the miracle of carrying that baby under our hearts or accepting a child that we didn’t birth, but who holds our heart so completely that we don’t know the difference….we get to be the arms that God uses to wrap our children in comfort when they are hurting or fearful…we get a chance to guide these children, to help grow them into the people they are going to become…for however long the Lord grants us time with them. I am so thankful for each and every moment I get with them, they are my greatest gift. Every day should be Mother’s Day, not for what we get, but for what we have.

Happy Mother’s Day.

f.r.o.G…fully relying on God
–Anissa

Ps. I guess as how this site is supposed to be about Peyton, you’d probably like an update on her as well. Counts on Thursday were lousy, but not as lousy as when we left the hospital on Monday. We head back to the hospital on Tuesday, she is supposed to get her Vincristine and start her steroid pulse. If her counts are still low she’ll get those two meds, but we’ll hold the Methotrexate and 6MP that she takes orally at home until they come up. She is still on her anti-viral and stool softener. Her body is starting to feel better from all the poop issues. She’s not 100% on that one, her tummy is still hurting and her booty is still sore, but she’s evening out and complaining less with each bowel movement. Her pain through this process has been hard to withstand for both of us, but it is getting better every day. Each day also brings more energy and smiles, so there really can’t be too many complaints. She still looks terribly pale to me, her hair is so thin, but I can’t tell you what a relief it is to be home and on the mend.

Oh, and I have to add this little conversation between Rachael and Peyton in the van tonight.

Peyton was listening to her IPod, singing loudly (Beyonce and I’m in the Lord’s army, interesting playlist she has there) and having a blast. Rachael was trying hard to not listen when she’s finally had enough.

“Turn the volume down.”

“The volume IS down!”

“The volume in your mouth!”

Ok, so I believe Anissa's mac is still in the shop. I spoke to her earlier in the day while she was at the mall getting the mac fixed, and it wasn't going well. They have a mac store in our mall. It's a very happy place for geeks like us. She grabbed a device to allow her to back up her computer so things like this wouldn't be so catastrophic. I told her she could go a little crazy for mother's day. How's that for romance? She got a usb backup and some video editing software. For our anniversary…our 10th anniversary no less…she got a vaccuum. Feel the love?!? Yeah, we're so practical it's sickening. For Christmas this year, I may just have to surprise her with a frying pan or something.

That's just how we roll.

So, tonight, I'm on the phone with the kiddos as they're on the way home from the CCC. Rachael was the first to call. She always is. I think she's figured out which button calls dad the quickest. Nathaniel was next. Both kids were happy, and having a good time. Then Peyton gets on the phone. It's FINALLY the good ole crazy Peyton. She was giggly, cheery, smart and silly.

Nothing monumental was said in the conversation. I didn't even get a chance to talk to Anissa. The key thing was that all 3 kids were upbeat and having a good time, and that puts my mind at ease. I haven't heard that in about 11 days. The doctors need to take blood to see how things are going. I just need to hear my family in action.

Ah yes, the numbers you've all been waiting for…Thanks Lisa B for reminding me….drum roll please….ANC 300 (she can once again fight her way out of a paper bag!). Hemoglobin 9.2 and platelets jumped to 72000! So her ANC is still a concern, but she's obviously on her way up!

Kicking leukemia's hiney…one cell at a time.

Peter

P.S. An issue popped up at work, yet again, so I don't know exactly if I'll be able to make it down tomorrow as planned. Please pray for an easy resolution on this one so I can sneak down and spend 24 hours as a normal family!