Hope4Peyton

First, some things I forgot to mention….Peyton’s fever broke early in the morning, so she has been without a fever all day. That’s GREAT! She has a hemorrhoid….really? Do we need to add on these little insults to injury? But with all the constipation and hard core pushing she’s had to do, she got a booty injury. Next she’ll get a hangnail and a cavity and just make the trip here complete.

For results on the bone marrow test, they take a bit of the marrow, put it on a slide and then they give it a quick look. They send it off to the lab for more intense scrutiny, and come back with a definite answer. The answer on the initial slide look is that there are no blasts in her marrow…that means no obvious signs of cancer returning! That is FANTASTIC and a huge relief. The complete celebrating will start when we get the full lab report tomorrow telling us that it definitely not a relapse. And I am so much more confident that we WILL get that report with THAT answer.

Her mouth is continuing to get better. Not by leaps and bounds but little by little. She ate some more pancakes for dinner, not much, but enough to satisfy the doctors and she even indulged in a little bit of banana. It’s great that she’s making the effort to eat now, even when she cries as she chews. Since the pain is manageable, she is starting to try to do some things…she’s colored in some books our friend Amy brought and she’s intent on using a little lap desk we got from Kyleen and Shannon from the Center. She gets little spurts of energy but quickly tires and loses interest. Mostly she just wants to lay down and watch movies. Lots of Dora, but her favorite Barbi movie is too scratched up to watch. You’d have thought THAT was the worst part of her day!

The morphine pump is a miracle of science. It has allowed her to get rest and to just be comfortable and that’s the biggest thing right now. I’m not sure how long we’ll be here. We just got back from her chest x-ray to give us the pneumonia answer. Tomorrow after all the bone marrow issues are taken care of, I can sit down with the doctor and concentrate on what the game plan is for attacking this virus, finding out what sort of timeframe we have for treating this and a thousand other questions rolling around in my head.

I so want to thank everyone for continued support, prayers and love. It’s awesome to hear from everyone, to know that so many are lifting our family and our sweet girl in prayers. Also, thank you for your response to the not-so-supportive comment. It did make me feel bad that I had perhaps posted too much and it was upsetting, but I stick by the knowledge that this is about Peyton and this is the burden she has to bear, in all its ugliness. But I sure appreciate all the assurance that it wasn’t wrong to post them, painful to look at for sure, but just an honest view into some of the things my child has to go through.

I am already joyous in the first set of answers regarding her bone marrow! This is a great sign that tomorrow we’ll get more good news!!!!!

Thank you to everyone who left messages, sent emails, called and shared some love with us today. A BIG thanks to Kay for all your help and making the day better, Shannon H-O and Kyleen for bringing goodies that made Peyton TRY to smile, Holly and Toby for taking the time to stop by and cheer us up, MaryAnn and Wendy for letting Nathaniel and Rachael stay with friends that they know love them. Tina, you rock for sending the pizza! I give huge thanks to God for providing us such an awesome support group to get us through each day.

f.r.o.G…fully relying on God
–Anissa

I don’t really have it in me right this second to make this remotely interesting or amusing. But here’s the update:

1. Counts were down again this morning, ANC was 200, hemoglobin was up to 9.6 because she got blood last night, platelets were down to 16 so she got an infusion of those this afternoon.

2. Her lips are looking better, there’s definitely some healing going on. Someone out there posted that putting up pictures of her painful lips was in bad taste and out of line. If anyone was offended by the pictures of her lips, I’m sorry, but it’s the reality of what she’s going through. I wish it were all pictures of ponytails and smiles, but this is it. This is her life. I’m sure not trying to make light of her pain, I knew there was really no way to explain how bad they were without showing them.

3. They are going to do a chest x-ray because they heard some crackles in her lungs and they want to check for pneumonia. Her cough has become really congested and chunky, so I’m glad they’re on it. They have oxygen blowing in her face because her stats have been down and last night they dropped into the 80% range, so today we are using the oxygen sporadically if she starts getting low.

4. Her blood cultures aren’t growing anything at this point, so no apparent blood infection.

5. She finally pooped a bit. It was painful and she was miserable. In true Peyton fashion, her bowels decide to move at the moment her entire body breaks out in a massive hive attack from the platelet infusion. So she’s in pain from trying to poop while working her hardest to scratch every square inch of her body. She scratched so hard she has a raw spot on her neck, she rubbed her neck and head so hard that great big balls of hair came off all over the place. At least her bowels are moving, and a big dose of hydrocortisone has relieved the hives.

6. She’s on a constant morphine pump right now for the pain, she gets a constant dose and then we can push a button to boost it every 15 minutes as needed.

7. She was going to get TPN, a push of proteins and basic nutrients because she hadn’t eaten in days. But with pain meds helping with her mouth she was able to eat a pancake and drink some milk, so they are holding off on the TPN as long as she is eating.

8. Her hair is still coming out in clumps, her pillow cases need to be changed regularly because they are covered in strands. You can see her hair is seriously thinned and even a few bald patches. It breaks my heart, but not the worse of it by any means.

9. She had her bone marrow this morning, we have no results or answers yet. All I can tell you is that the marrow came out easily, so that’s a positive thing. When she was diagnosed and her bones were packed full of leukemia cells, the bone marrow aspiration was so rough that two doctors attempted to get marrow to come out and they could get almost nothing to come out. This didn’t happen today, so that’s a good thing.

10. For those who’ve asked, we’re in room 265 at All Children’s Hospital. Kay Bertoch came up today and stayed with us through the bone marrow and to help in so many ways. She’s even gone out to the store to pick up some munchies and treats for us. Feel free to visit, we’re not going anywhere. Just please don’t come if you’re sick in any way and don’t be surprised if Peyton won’t even look at you, I’ll be glad to see you!

Keep the prayers in motion, Peyton, Sierra, Connor, Jimmy, Kaylie, Presley, Kate, Matt, good grief, it sounds like I’m writing a “Baby’s Name Book”. You can’t possibly pray too much.

Thank for all the support and love, you’re keeping my spirits lifted.

f.r.o.G.
–Anissa

The van still rocks and is officially getting 18 mpg!

That is my good news of the day. The rest of it is really less than stellar.

This morning I gave Peyton her Valtrex for the herpes and Lactulose for the constipation. She was all crashed out, exhausted in the bed, wailing and moaning in pain. I finally couldn’t watch her like that anymore and decided to call the clinic, but before I got them called I noticed that she had a red bump on her chest, right over her heart. Looking her over, there were several on her arms and torso.

The call to the clinic led to the trip in to show off Peyton’s newest mystery symptom, which turned out to NOT be shingles, but just a viral rash. Peyton’s pain level was so bad that the decision was made to go to the hospital so that they can manage it with some heavy duty drugs. Drugs that will make the constipation worse, so they can also manage that.

Her mouth is worse, the sores in her mouth spreading across her tongue and down her throat. She is in a lot of pain, and I’m thrilled for the morphine they are giving her that is relieving it and letting her get some rest. She didn’t have a fever at the clinic, but as soon as we got here she shot up to 103.4, so our indefinite stay is going to be at least 72 hours. The blood they pulled will tell us if the fever is from a bacterial infection working side by side with the viral infection.

She’s getting:

Morphine for the pain
Acyclovir for the viral infection
Cefepime for the potential bacterial infection
Mag Citrate for the constipation
And we’re still holding all her chemo

Her counts were also discouraging. Everything dropped dramatically, her ANC was down to 300 (from 500), her hemoglobin was 7.5 (down from 9) and her platelets dropped to 27 (from 38). She’ll be getting red blood due to the hemoglobin drop and we’ll be checking counts in the morning to see if she needs platelets.

We’ll be doing the bone marrow aspiration in the morning. In knowing that all of the above could absolutely be caused by the infection rampaging through her body, the thought also remains that it could be the cancer. I’m about 60/40 and the aspiration will give me 100% clarity on which it is. Yesterday I was really consumed with the thought of the cancer being back and after a lot of prayer I realized that it doesn’t matter either way because God’s handling all of it. I can stew on it and let it overwhelm me but I know that it’s a waste of my time and energy. We’ve gotten through days we never dreamed we’d have to live. Come virus or relapse, I know God will see us through this as well.

There is no answer yet on the liver enzymes, but she did crop up with a new and interesting side effect today. Her hair is coming out again. I’m talking shedding handfuls of hair, I can already see how much thinner her hair looks and if it were to continue to fall out at the rate it’s started she could be bald by the end of the week. Some kids lose their hair throughout maintenance, some never lose a hair again, some wait until the very end to lose any. Peyton’s response to seeing her hair all over the table was “Darn it, I hate when my hair falls out!” Yes, me too.

Right now she is sleeping….lovely, deep, drug-induced sleep. No whining or whimpering in her sleep, she’s barely moved. She really needs this rest so her body can recharge and build up some fighting strength. I am going to crawl in bed with her, cuddle up and nap right along with her.

Pray for clean bone marrow results, pray for healing, pray for each of these precious kids whose bodies are fighting a battle they should never know.

f.r.o.G…fully relying on God
–Anissa

Yes, they are holding Peyton’s chemo. Don’t know how long, but hopefully it’ll give her some rebound time. I can’t wait to see those counts come up.

Thank you all so much for your encouragement and for the ones who are sharing about your own experiences, you don’t know how much you’re helping.

f.r.o.G.
–Anissa

We didn’t have to call in the National Guard, but we did have to head into clinic. When Peyton woke up she was still not “right” in a big way, and the sores had spread from her lips to her tongue. I guess I’m not really explaining the mouth sores well, because these are not the little white blisters she had when they first popped up. It has progressed to the point that her lips look like two slabs of raw meat, they are a puffy, swollen, white and bloody mess, with a side order of blisters down her tongue and throat.

What I’d thought were chemo-induced mouth sores are actually a herpes virus. Yes, she has herpes. I told the nurses that I’d really thought we could get by that until at least college. Have you seen that tv commercial “I have Herpes, but I don’t want to give it to him” ? Well, she’s on that medicine, Valtrex. Hopefully with 3 doses a day it’ll help the viral infection go away.

Because she’s had so many bowel issues, they ordered an x-ray on her belly to see if there’s an obstruction. There wasn’t but they did tell me that she was officially F.O.S….that would be Full Of S***. Apparently she’s getting just enough out to relieve her stomach, but not fully emptying it out because she is pretty clogged up. She will continue to get her doses of stool softener in hopes that it will “clear the path”, but I think part of the problem is that the process has been so excruciatingly painful and her booty is so sore and raw that she’s afraid to go and is deliberately holding it in. She’s going to have to go, I hope it doesn’t become impacted to the point where we have to go inpatient to fix it.

This is the hard thing for me to talk about. We got her counts and they had really taken a plummet. A big one. First, let me start by saying that her counts could be down because her body is fighting off a pretty heavy duty viral attack. That is PROBABLY what it is. It’s sure as heck what I’m praying for.

Peyton has a pretty stable ANC. This is the mix of counts that tell us how sturdy her immune system is, it’s more or less our greatest guide of what we are allowed to do. During the phase of treatment she’s at, her ANC has kept fairly level, right in between 1500 and 2000, which is perfect. Last clinic, two weeks ago it was at a nice and rosy 1700, but today it was 500. This means that her immune system is weak and not able to fight off an infection…which she has….and that’s why her body is taking such a beating.

Her hemoglobin and red blood count has dropped by small amounts over the past 3 clinic visits, going from 12.5 to 9.2 (the normal range is 11.5-14.5). It’s low but not bad enough that she would require a transfusion, that is held off until it reaches 8.

Her platelets were the big jolt for me. I’ll be very honest in that when I saw her platelet count my head started to spin and I started crying…it scared me that bad. I truly couldn’t believe what I was seeing. In looking over her past CBC results, I can see a downward trend…again, my clinic has to LOVE my need to keep every sheet of paper they give me….(normal being 150K-450K, transfusion level is under 20K) she’s gone from 305K to 239K to 192K and today’s count was 38K.

38,000 platelets when 2 weeks ago she had 192,000. That was almost a physical blow. Cindy, a nurse who has seen us through every part of Peyton’s treatment came in and told me to stop with the crying, especially in front of Peyton. That helped me pull myself back together. She also reminded me, most adamantly, that Peyton’s sick and this was most likely the cause of her low counts. I’m really holding onto that.

If you remember, when we did the peripheral blood smear that came back clear, Dr. Kerr and I agreed that as long as everything remained stable with her counts we would just wait until her next scheduled spinal tap in June to do a bone marrow aspiration. Unfortunately, this is not stable as far as I’m concerned. They did another smear today, which did come back clear, THANK GOD. But I also know that’s not the end all-be all determining test. We have seen a friend whose smear continued to come back clear yet the cancer was back. Doesn’t mean that is the case, but that thought is in the back of my head…oh who am I kidding, it’s front and center in my head.

We go back to the clinic on Wednesday for counts, her liver enzyme bloodwork, and to see how she’s doing in the poop department. Please pray with us for a raise in counts and for her to start feeling better overall. She’s been exhausted and has no energy, but that could just be from her virus. She’s been in pain in her legs, that could be from her Vincristine and steroids. Please pray that all these COULDS are the problem, that is what I’m praying for.

There is something so wrong with the fact that I’m praying “Come on, chemo side effects!”

Do I think all this is stemming from her being sick? Oh, I sure hope so.

Do I really think she’s relapsing? It’s my greatest fear.

On Wednesday we’ll see how her counts are doing and if they haven’t changed or changed for the worse I’m going to push for a bone marrow aspiration…just warning you now, Cindy!….if it comes back clear and shows that it’s all in my head then GREAT! But if it is a relapse, then we need to know and we need to move on it.

Peyton is miserable, crying and moaning, it sounds like an Irish wake in my house. She’s so hungry, but screams with each bite. She’s exhausted but can’t sleep because she’s in so much pain. She’s afraid to pee because it hurts all the sore and raw areas, she’s just pitiful and heart-wrenching. Please just keep my baby in your prayers, she sure needs them. Nathaniel and Rachael are so wigged out, watching her suffer and listening to her pain is making them seriously scared for her. We all need the prayers right now.

I’m really just holding tightly to the hope that it is all virus-induced and when it is gone she will go back to being our normal bouncy Peyton. I trust God to have the plan and whether I like it or not, I believe that he’s going to see us through.

f.r.o.G…fully relying on God
–Anissa