Hope4Peyton

This was a sweet picture of Peyton and Pete in the treatment room when she was still in a good mood!

Today was Peyton’s big day of the week for treatment. She never liked the new leg shot treatment, but she was rather resigned to the fact that she was getting “pokes” that hurt. She was excited that she had the weekend off from pokes and that was nice for us all.

This morning was her day for her spinal tap and IV medications. Everything started out fairly normal. They put in the access to her port and administered various fluids and medications, and then when it was time to do her spinal tap they gave her the normal happy medication and we went to work.

Unfortunately, the first attempt did nothing….neither did the second….they had to give her more pain medication because by this time the pain medication was wearing off, she was crying out in so much pain and fighting so much they couldn’t proceed. When the additional medication kicked in, they finally got what they wanted, but she was never pain-free, which she normally is and it was just so bad. Afterwards, she was so angry and upset, partly because of being hurt and partly because of the medication, she was just absolutely vicious. Nothing made her happy, she was spitting and hissing and slapping and biting. It was not pleasant.

They explained that when the kids have repeat spinal taps in the same spot, they can sometimes form scar tissue which makes it difficult to get the spinal fluid. They could get none from her in the first two attempts, so they had to move to a different spot and they were successful in the third. They will know to try a different spot during her next spinal so that this doesn’t happen again, which is not for at least 6 more weeks! WONDERFUL!!

Her counts were down, she’ll be receiving a red blood cell transfusion on Wednesday. It’s too late for dedicated donors for this one, but the next one we’ll have a little more notice. By the way, for red cell donations, she can have A+, A-, O+ and O-…..platelets she can have anyone’s. So, if you want to go on the donor list, contact me through the webpage and let me know.

Her ANC dropped from 1900 on Thursday to 1400 today, it’ll continue to drop, but the doctor encouraged us to take her to the American Cancer Society Cancer Families ROCKS get-together this weekend in Orlando. We get put up at the Contemporary resort for 2 nights, all our meals, and then family passes to a park for Sunday, plus they do a character breakfast and the kids are just going to be ecstatic! Peyton’s never been to Disney, so this should be so exciting for her and the kids will love to get back there. It’s a great opportunity for Peter and I to meet with other families going through the same thing we are and connect with support groups in our area. We’re eager to go and looking forward to this opportunity.

As for the rest of the week, we’ll be doing the leg stick chemo Tues, Wed and Thurs….Nathaniel and Rachael have doctor appointments on Wednesday, and both have shots due, so Peyton will get to go and watch someone else suffer….seems poetic doesn’t it? Then we have a nice long weekend away from home and having fun and we don’t go back to treatment until next Tuesday.

As we watch her body react to today’s doses of chemotherapy, we need to pray for her continued good health. For all the rough treatments and not liking her painful shots, she has so far had an amazing time of treatment. She’s had no nausea, her energy level has been good, since she came off the steroids, she’s been so happy and playful, she’s just felt good. We are so thankful for that and for the health of Nathaniel and Rachael, we cannot be take these things for granted. As her blood counts come down and her immune systems is more and more vulnerable, pray that she is able to stay clear of germs and infections and that we are able to keep her home with us and out of the hospital.

Pray for Nathaniel to continue to do well in his studies, he’s coming home with fantastic grades and getting his work done at school (which is a huge accomplishment) and just really showing his amazing brain while still managing to have a wayyyy too much fun.

Pray for Rachael to have happy days and for her to be able to cope with the changes in her life. She is such a sweet and loving girl and is having a hard time with all the adjustments she’s going through with home life, her school schedule and having to learn to grow up the right way.

Peter and I need prayer to be patient, understanding and be the kind of parents of our kids need right now, maintaining a strong family and a good relationship between the two of us.

—Anissa 😉

PS…We are still in the process of pulling together the Tupperware fundraiser for Peyton. I’ve had a lot of responses already, but if there’s anyone else who’d be willing to participate, just get a booklet and show it around and explain what we’re doing and see if anyone’s interested in ordering and contributing, it’d be great!

Just a funny note about Peyton’s treatment on Thursday. The nurse Cindy and I are wrestling her down to get her leg shot and she’s wiggling and fighting us. Cindy tells her, “Peyton, you need this shot to help you feel better.”

Peyton replies with no hesitation, “I DON’T feel bad, I don’t need it!”

Gotta love kids!

Holy cow, if we'd known what kind of day it was going to be, I think we all would have just stayed in bed this morning and never come out.

We won't know the results of the bone marrow aspirate and spinal tap until next week to let us know if she's been successfully put into remission.

Peyton had the worst treatment she's had to date, and hopefully the worst she'll ever have to suffer because I can't imagine a worse day. The doctor prescribed her an anti-anxiety medication to help soothe her through her treatment days, especially while she's on the steroids and a little nutty as it is. We couldn't find a pharmacy that had the medication, could get it for us in time, AND took our insurance….what a mess! So, we had to go to the clinic pharmacy in Tampa to get it filled.

But we found that was the easy part. Poor Peyton's surgery was scheduled for 2 PM, which means she couldn't eat after midnight! I woke her up in the night to stuff her like a turkey! But by 8AM she was starving and wanted spagetti…..it started. She began to wail and scream and it didn't stop until 1:30 when they took her off to surgery. She screamed for food, for us to leave her alone, "NO NO NO" was her favorite line, for more food, for us to go home, for more food! If we just could have fed her it would have been fine, but we had to literally torture her. I told my mother that if I'd had to stab her repeatedly, she couldn't have screamed louder, harder or longer than she did today. She actually burst a blood vessel in her eye.

Yeah, that anti-anxiety medication wasn't a whole lot of help.

So, after 5 hours of screaming 2 year old, we wait while she has her procedure, guiltily scarfing down sandwiches because we know she's hungry to the point of insanity and here we are eating. God forbid she sniff a crumb on us!

When I get to the recovery room, she is coming out of the anesthesia violently….and I do mean violently. She is kicking, screaming, scratching, pinching, thrashing around, it was horrifying to watch. She was like a child possessed. They got us out of recovery as fast as they could, we had to have her port access removed and then we ran out of the clinic with our tormented child with every intention of buying her a side of beef and a pound of french fries to go with it.

Not so much, she screamed every time we tried to stop for food, she was just so spazzed out from the anesthesia that she couldn't even speak. She started spitting and making up her own words and just mumbling….for those who know don't know her, she normally speaks very clearly, so for a few minutes I was having visions of some wierd neurological reaction. She was yelling at us in some foreign language that we couldn't even begin to understand. This went on for about 20 minutes.

She finally calmed down and passed out….sweet blissful silence. We're about to pull into our neighborhood and she freaks out! "I thought we were going to McDonalds!!!!" Ok….

We went to McDonalds, we got her some chicken, she was amazingly enough a beautiful smiling child. If only all our problems could be as easily remedied by french fries and chocolate milk. She was pretty thrilled with life once her stomach was full…her day ended peacefully with additional meals of spagetti, green beans, olives, chips and milk…..

As for her future plans…we found out we have the next whole week off without any treatment!! Yeahhhh, and the world rejoices! Plus, she's finished her steroids!! Sooo, we should have a week to see her personality come back to normal and her start feeling better before we have to go anywhere near the clinic.

The new protocol when we head back will be a Monday spinal tap, IV meds, and shots…then Tues, Wed and Thurs we only have to go up for leg shots. So, we're there 4 days a week instead of 5 which is good news.

She's going from 3 chemo meds to 6…so we have no idea what her reactions to these new medications are going to be. Her hair is falling out rapidly now, I'm betting by the end of the week we can give her a cigar and teach her to do Kojak impressions. Between our dog and Peyton there's hair all over the floor. It's pretty sad. Her blood counts are going to start dropping rapidly. We're in the process of getting the dedicated donor stuff lined up so that anyone who wants to donate specifically for Peyton can when she needs a transfusion. Please visit the website for the Florida Bloos Services, they have very specific timelines for giving blood as a dedicated donor. Give blood even if you aren't her type…which is A+….they need it, someone elses's child may need it, you never know who you might be helping.

When she's happy she's soooooo sweet, we wait and wait for those few smiles we get during the day. It makes it worth it to see that little bit of our baby come out. We pray for more good days than bad, for patience to endure the bad ones, and for strengh for the whole family to get through this together.

—-Anissa

ps…I have a dear person in my life who has suffered the loss of an unborn child this week. Please keep her and her family in your prayers.

For those who’ve offered to donate blood when Peyton needs blood transfusions, the time is coming up soon. The doctors are predicting that she’ll need her first starting next week with her blood counts dropping rapidly since she went off the steroids and added new and powerful chemo to her treatment plan.

We set up the dedicated donor information with Florida Blood Services. However, for you to donate specifically for her, you will have to let me know in advance so that I can put you on a list, otherwise your blood will not be able to be for her. She is A+ and she will need that for red cell transfusions, but for platelet transfusions it does not have to be any specific blood type so anyone can donate. I will warn you that platelet donation is time intensive, a minimum of 90 minutes per donation.

For direct donations you have to find the Florida Blood Services closest to you, you can find a location via their website at www.fbsblood.org. You have to go to one of their buildings, you can’t donate directly at a mobile site. Please donate, if not for Peyton, please donate for the person who will need what will take so little of your time to give.

Please contact us if you’d like to go on the list as a dedicated donor and I will give you an email when she is scheduled for transfusion so you can head in during the appropriate time frame for donation.

—Anissa

Today was the start of our next phase of treatment called "Intensified Consolidation". The basic schedule will be a series of 6 chemotherapy medications over the next 8 weeks given via IV, spinal tap, shot into the leg, and orally. The schedule is confusing, but we have two weeks of this and two weeks of that, sometimes shes getting it all at once, sometimes shes not
.its confusing and I have an in-depth calendar to keep EVERYTHING straight.

Great news! The results from the day 29 spinal and bone marrow showed that from the samples that they tested there was no leukemia and that means she is in remission. The note to that is that it is a limited remission, of sorts, the doctor explains that of the cell count that they took they found no blasts (leukemia cells), but if they were to do a much larger sample, there would still be leukemia in her system. BUT, the important thing is that for where she is in the treatment plan, shes exactly where they want and expect her to be. So we’re thankful for that news!

We were a little shocked to get her ANC count today. Her ANC count is the calculated blood count that tells us what her activity level can be due to her immune system. When her ANC goes below 1000 we have to start worrying about her exposure to large groups of people and germs, and eventually when the ANC bottoms out, we will have to keep her away from people as much as we can and try not to become hermits. When we left the clinic after our last treatment 9 days ago, she had just finished her steroids, which we knew was part of the reason her ANC count had stayed nice and high. Her ANC count was 11000. We knew it would start dropping, but today, after just one week off the steroids, it was down to 1800. It will get extremely low over the next few weeks, and one of her new medications especially affects her platelet counts and she will need a transfusion as early as the end of this week. Her new meds are going to make her feel irritable (nothing like steroids), extremely lethargic, and achy. So, we have an uphill battle with the new treatment, but she is strong and we are going to do our best to keep her fighting.

Todays treatment wasnt a bad treatment day, it was just long and she was so tired by the end of the day that she was in a terrible mood. She had her spinal tap with medication and two medications via her port. It was just a process of giving her a medication and then giving her a series of IV fluids to see if she would have a reaction to the medication. One of the medications can have an adverse reaction on the bladder, so they wanted to make sure she was able to pee ok and there wasnt any blood. They administer one med at a time, watch, then the next and watch, so we got started at 9 AM and didnt leave until 4:15, long day, but not too bad, as far as actual treatments. She enjoyed a few movies, painted and colored for a while and had some fun playing with bubbles.

The nurses were thrilled at the change in her personality, theyd only seen her on the steroids. It was fun for them to see her laughing and smiling and playing with them. She was talkative and just charmed everyone she saw today, so it was a nice change from the screaming, cranky hellion shed been for the past month. They got to see the real Peyton and she got to see them without the haze of steroids and see what nice people they really were. We joked that the only time theyd seen her this happy was on the feel-good drugs they give her just prior to her spinal tap, so if she felt this good to start AND got the drugs, it was going to be like Mardi Gras!

We continue to be thankful for how well shes responding to treatment, and for the return of her cheerful personality. Its been wonderful for the whole family to be able to spend time together and enjoy each other. Nathaniel and Rachael are doing well with school, they are already getting into the groove of things and we are so grateful for the challenging and nurturing environment they have at their school. God provides in a lot of ways and hes kept our kids in a school with friends who care and teachers and staff who pray and watch out for them every day, how can we not be thankful for that?

We are going to be organizing a Tupperware fundraiser over the next few weeks. I will be sending out emails to friends in different areas who might be willing to be a contact person and help us out with this endeavor. If you are willing to be a part of the fundraiser for Peyton or would like more information, let me know and I’ll email or call you as soon as I can with more info. The proceeds of this will go into Peyton’s Fund for her medical expenses.

Also, Im going through old VHS tapes and DVDs that we dont watch anymore to donate to the All Childrens Hospital Clinic in Tampa where we visit. They have a selection for the kids to watch while they’re having treatments and can always use new items to choose from. So, if anyone has some that theyd like to get rid of, any age group, let me know, I’ll get them from you (locally please!!!) and I’ll deliver them to the clinic on one of our visits. Please include a note from your family letting them know who’s donating, I know theyd love to know.

Thank you for your continued prayers and best wishes, they are appreciated, needed and working.

—Anissa