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
on Apr 28th, 2008 at 8:26 pm
Oh Anissa, I am praying for all of you! I am going right now to a board I am a member at and make sure they all come and read this ASAP… we all keep up with your family daily!!!
Lots of prayers and a big hug to you all!!!
Misty
on Apr 28th, 2008 at 8:49 pm
Dear Anissa ~
This is the third time I have tried to leave you a message. I hope it works or else I will try and call you.
This morning what I was trying to post was, "does she have herpes"? Well it would seem she most definately does!
Scott had one great huge mouth sore/herpes infection last year, when it finally did go, he developed damn shingles. He was taking Valtrex for months.
And yes, during this time his counts did plummet.
Hang time Anissa, her body is definately fighting a virus, and you know as well as I do how this affects blood work.
I would be a jibbering wreck too though.
It isnt easy.
Thinking of you and Peyton and sending lots of love.
PS. Im assuming you have Benadryl? It works wonders for Scott, give Peyton a shot, it should help her get some much needed rest.
on Apr 28th, 2008 at 9:16 pm
I understand the worry and of course hold on to all the coulds and it most likely will be that. She IS fighting something and we can all see that and of course the counts are going to plummet due to that. Having said that and like I told you before, do the aspiration to help give YOU peace of mind. Peyton is going to be fine, beLIeVE that!! I will be praying for Peyton and believing that is all it is, a virus taking over and making her counts low. Viruses can last a while and can get worse before it gets better and when its all said and done, Peyton WILL be herself once again. Be comforted knowing lots of people are praying for her and for all of you for peace and comfort. Everything will be OK, believe it and claim it.
It will be okay,
Mary Lynn
on Apr 28th, 2008 at 9:32 pm
Oh my gosh! Poor baby! I can sure understand why she would be crabby — I have never seen anything like that and I feel so bad for her (and all of you). I will continue to pray for Peyton and all of you.
on Apr 28th, 2008 at 9:47 pm
Oh that looks agonizing!!!!! I had something similar once, there were flies all over me so I put bug repellent on my whole face, and then my lips because the flies went there. The repellent dried out my lips, and if you have the virus then cold sores will explode the minute something goes wrong with your lips. I ended up with something similar to that picture and it was the worst kind of pain. And Peyton has much more delicate lips being a child…the poor little thing. Praying that she will heal soon.
on Apr 28th, 2008 at 10:06 pm
I have been following Peyton's journey. My 3 year old is also in long-term maintenance for ALL and we have a little friend who is also. I hope this helps ease your worries a bit, but my friend's little girl just had a nasty virus (like a croup kind of cold) and when she went in for bloodwork, her neutrophils went from their usual 1.5 range to 0.4. Her hemoglobin when from their usual 125's range to 70. Her platelets went from the usual 200 range to 30. This was all in a matter of one blood count to the next, two weeks later. The nurses/docs said it was most likely from the virus. She went off her chemo for one week and her neutrophils and platelets began to rise and her hemoglobin is coming up slowly but surely; it always takes its time. Today, 3 weeks later, her ANC is back over 1.0 and everything else is pretty close to normal. It happens and a nasty virus like little Peyton has right now is BOUND to drop her counts. The way I believe it is the virus goes through their body, kicks out the marrow and does what it does and then the marrow begins to repair/replenish itself. I'm assuming she's off chemo and the counts will start coming back. Hang in there and God bless.
on Apr 28th, 2008 at 10:19 pm
Hi Anissa,
I cried when I saw sweet Peyton's lips… and her eyes…she looks so tired and sooooo sore! Is there anything your readers can do to help? I mean, praying is obvious (for me anyway) but I'm wondering if we can somehow donate blood, platelets, bone marrow? Raise funds? I suppose there are all sorts of possibilities!
I love your honesty–the "give me a break" and the comment about you threatening to throw a backpack if the kids woke Peyton. Obviously you are a loving mom and would do NO child harm but I think it's a good thing that you are sharing your fears and frustrations on the blog because believe it or not, it's going to help keep you sane.
I'm continuing to pray for your family…. Our Heavenly Father, I ask you humbly to be with Peyton and her family during these painful, trying times. Peyton doesn't fully understand, Lord. All she knows is she hurts –in soooo many ways. And so I ask You, merciful Healer, to bring some relief and healing to your child, Peyton. Heal the sores on her lips, bring her relief so that her tummy and her tushy feels better and she can get some of that restorative sleep that her body needs. Lord I ask that you raise those counts that Anissa mentioned. Help Peyton's immune system to fight this battle and to win! I ask this in Jesus precious name, Amen and AMEN!!!
on Apr 28th, 2008 at 10:22 pm
Poor Peyton-I hurt just looking at her. I hope she starts to feel better real soon. Sending you all prayers and hugs. Love, Karalyn
on Apr 28th, 2008 at 11:14 pm
Oh Poor baby! Those soars look extremely painful. I read Peyton's blog every day, and you're all in my prayers. I hope her lips, and her pooping issues get better real soon.
on Apr 29th, 2008 at 8:48 am
Poor thing! I'm sitting here in tears. I hate that Peyton has to deal with all this crap. I'm praying for some relief ASAP. The pictures of her lips are heartbreaking, they make me want to do more to make cancer a thing of the past. Times have been pretty tough with all of our local kids.
Love & prayers coming your way!!
on Apr 29th, 2008 at 2:18 pm
Anissa,
Oh my god! I can't believe Peyton's lips. They look so painful. I am so sorry that you are feeling so stressed and scared. Please know that I am praying for Peyton's counts to be up tomorrow when you go into the clinic and I hope the medicine works and that her lips feel better soon. I miss you guys and hope to see you soon.
Love,
Robyn
on Apr 29th, 2008 at 4:04 pm
Praying…praying…praying
on Apr 29th, 2008 at 5:53 pm
Please know that Peyton is in my prayers daily, even when she feels good and especially when she doesn't. I know as a mom of healthy kids it breaks my heart when I can't kiss a boo boo and make it better so I can only imagine your feelings. Just take comfort in the fact that many people are praying for strength for you and Pete, Rachael and Nathaniel and for healing for Peyton.
Hugs!
Shelley
on Apr 29th, 2008 at 11:03 pm
Dear God, we pray your healing on Peyton right now. Take this affliction from her little body heal from sickness
In your name Amen.
The Powells
on Apr 30th, 2008 at 10:42 am
How pitiful to be suffering so much, but pictures are not necessary and in bad taste. Everyone believes how bad it must be so why should a child think her suffering is worth taking pictures of.
on Apr 30th, 2008 at 2:14 pm
To SS – the last person to submit a response;
I am also a parent of a cancer child – I don't know if you are; but going on these websites are truly helpful to other cancer families in sharing stories and things that are happening to our children. We use it as a way to get information, share information, and to realize that we are not alone in this.
With Anissa posting these pics, I was extremely thankful. She is helping other paranoid cancer moms to know what an infection of that nature looks like as it would be helpful to us if the same happened to one of our kids. And also as Anissa said, she wanted to show us exactly what Peyton was going through. Out of all the cancer kids sites that I have on my "favourites" menu, I always make a point to coming to Peyton's daily as Anissa is so thorough in describing Peyton's journey and it really helps me.
This site is dedicated to her daughter and anything to do with Peyton be it happy or sad, if she's in a party dress or covered in spots, its all about her, that's the point of it.
Please don't discourage Anissa in doing what she does best – providing an excellent, informative, humorous and caring website dedicated to her daughter and helping other families.
God Bless
on Apr 30th, 2008 at 8:57 pm
DITTO TO WHAT CALE SAID!!!!! It helps ME and others who do not live this daily, to see and put in to perspective that its NOT all laugh and funny stuff all the time. Anissa needs to know she can post what she WANTS, KNOWING she will get full support from all of us who come to her site daily.