We have some seriously sweet friends! This morning Peyton and I had to head up to the clinic super early and Pete got Nathaniel and Rachael off to school. We were surprised to see our friends [url=http://www.caringbridge.org/visit/allieblain]Allie Blain[/url] and her mom Renee there. They had come to the clinic, even though they had no appointment of their own, just to bring Peyton a little bag of love full of goodies and a handmade card. It was so sweet, such a wonderful gift to start off our day. Thank you, Renee and Allie, for thinking of us and for being the wonderful friends you are. Thankfully, Renee had explained Peyton's steroid situation to Allie (who is THE most mature 4 year old I have ever had the pleasure of meeting) and when Peyton wouldn't be as friendly as she should be, Allie said very solemnly "It must be the medicine." Peyton did finally give Allie a nice big hug before she left and was so thankful for the snacks all through the day.
Peyton and Allie at Disney on Ice
Peyton's clinic visit went smoothly. The doc checked out her legs and her back. The deal comes down to the fact that Vincristine is a very necessary part of Peyton's protocol and she has to have it….it's a medication that she'll be taking during the entire time of her two year maintenance, but it'll be an every other week thing then. When tested today, she showed no reflex response, but the doc said that it is not uncommon and not to be concerned about it being a lasting effect. Because Peyton showed improvement when taken off the medication, that shows that the damage to her nerves repairs itself with enough time. I just continue to pray that after two years of beating down those nerves, they will still have the strength to come back to life. The grim fact is that she's missed many doses of that medicine, they need to get her back on protocol and a little nerve damage is not going to keep us from fully fighting the cancer. She got her full dose of the Vincristine today, and a referral for physical therapy. The PT won't be able to do anything about the nerve damage but it will help in strengthening her muscles and hopefully help in that regard.
As far as her back pain, the doc recommended just treating it with the pain medication and watching to see if it gets worse. She suspects it's just the result of repeat spinal taps.
We managed to get out of the clinic fairly quickly thanks to the hard work of the nurses who knew we had to get down to St. Pete to meet with the radiology oncologist. Peyton and I picked up Peter and we headed down to meet with Dr. Cotman. We had the chance to ask many of our questions and get the basic of what her radiation treatment will entail. She will have to do 10 treatments of radiation, which is considered low dose, to her head. She is not having spinal radiation, thankfully. It was explained that the chemo she has injected into her spine with each spinal tap is taking care of any potential leukemia there, and the cranial radiation will treat for any cancer cells that may have made it to her brain. Unfortunately, there is no way to know if there were any there to start with, or if there will be any when it's all said and done, but we're putting our trust in the doctor's experience and our faith in God's power.
The side effects should be minimal with the dose of radiation she's getting. We will be on the watch for any burning of the skin, she'll have hair loss, there are chances of effects to her hearing and eyesight which, if they happen, are temporary, there is also the better chance of her suffering nausea and fatigue from the radiation. The doc explained that because the radiation remains active in her for weeks after it is administered, the effects can come sometimes come weeks or months after the initial treatment. When we asked him about long term cognitive problems, he told us that it is a possible problem, but most likely, with the low dose that she'll receive, her problem will be minor….as he put it, the difference between an A student and a B student…I was never an A student, so who am I to judge? Maybe I'll just finally get a kid who takes after my own scholastic abilities instead of Pete's!
We go back to the radiologist to do a simulation on the 31st, it will be when they fit her for a mask that will go over her entire head and help to immobilize her during the treatments. I hope she doesn't freak out when they fit it over her face, and they're also hoping that with the quickness of the actual treatment she'll be able to handle it without sedation. I have no idea whether she'll be able to do it or not, it will totally depend on her mood that day, I guess. The radiation will be a general external radiating, not a pinpoint radiation.
It's scary to think about, but after meeting with Dr. Cotman and getting more info from him, I felt better about the procedure. He did explain that with kids who are CNS positive, there was a 10% higher chance of relapse in those kids who did not receive cranial radiation, so I think we know that's not a chance we're willing to take. The schedule is absolutely a mess because day 1 of this phase of treatment started on a Wednesday….each chemo and radiation date is scheduled by day….so, we start on a Wednesday and go through Friday, then home for the weekend, return for treatment on Monday and come home Friday after treatment, then head back for the final treatments Monday and Tuesday….would've been so much easier for it to start on a Monday and just have two weeks of schedule wrangling…but then when does life ever like to make things easy?
One of the things Peter and I got to do while in St. Pete was to visit both Ronald McDonald houses, one behind the hospital by our radiation place and one in front of the hospital by where we'll get our chemo. Both were extremely nice and well set up for the family, I think Peyton may actually enjoy her time there. It costs the family a night to stay, that includes any and all meals, and we are required to perform one chore for the household (it could be vacuuming the hallway or washing all the fronts of the appliances, nothing major) and we have to make sure to leave our room in spic and span condition for the next family. One place is more homey and the other is more hotel like, but the hotel one allows for more room and if Peter is able to bring the kids to visit it will offer them the ability to stay with us if they can.
A sad thing happened today…there seem to be a barrage of sad things, but this one of the scariest things I know lingers in the mind of any parent with a cancer kid. While touring one of the RM houses, I ran into a mom I know, Amber Bowman, her sweetie of a daughter Carly has a brain tumor and is such an amazing fireball of energy. They were one of the first families we met the in the days of Peyton's initial hospital stay last July. They go to our clinic and have become a familiar sight. Today Amber's face was tired and sad and I was struck with the fear that Carly had taken a turn for the worst. The news was even more devastating because although Carly remains stable, they just found out their other daughter Lily has the same type of brain tumor. This family is now coping with a 2 year old and an 8 year old with brain tumors and that is just heartbreaking. I know one of my greatest fears is that Nathaniel or Rachael will also become sick, I know that dealing with Peyton's cancer is hard enough, but to be caring for two of them….overwhelming is an understatement.
This is little Carly Bowman, I don't have a picture of the rest of her family to post, but
please keep the Bowman family in your prayers, these are going to be days of monumental struggle as they also have two healthy sons that they have to care for as well. They will need all the prayer and support they can possibly receive.
I would like to end this post on a bright note. As you all know, Nathaniel and Rachael have attended a fantastic private Christian school for the past 3 years. Central Baptist was a huge source of support when I had my stroke, providing a stable and encouraging environment for Nathaniel and Rachael to have when so much was upheaval at home. Then when Peyton got sick, the school really stepped up and offered us a scholarship for both kids so they could keep attending even though I had to stop working and we could no longer afford the tuition. It's been a prayer that the Lord would provide us a way to keep our kids in the school, it has been the one constant, unchanging thing in my kids' lives, a place that they can always find friends and the loving support they need when home life gets crazy. I wanted that for my kids, but had accepted that perhaps God's purpose was for us to be in another school, touching someone else's life. The fundraiser for Peyton was originally planned as a way for us to raise money for expenses due to loss of income and hopefully help keep the kids in school, but I was torn by the idea of using money that should go into Peyton's medical fund for private school tuition.
So I prayed for an answer to become clear.
God answered unquestionably.
A couple of weeks ago a commitment came from an anonymous source to pay a year's worth of tuition. A family who has kids in our school made the decision that the the tuition they were already using to pay for their 8th grader who would be heading to public high school could just stay at the school to help one of our kids attend. Then the news came this week, that another donor has made the commitment to pay a year's tuition…and this person is someone from the community who doesn't even have children attending our school. These people just heard of our struggle and chose this special way to help our family.
This doesn't help Peyton, it won't take her cancer away and it doesn't fix any of her problems. But cancer has affected us as a whole family, we have all suffered from the effects of the disease in one way or another. These people have provided a huge blessing in our lives, they have found a way to help the needs that could be met. I may never know the names of the people responsible for this, but I know that the Lord will bless them in the mighty way they deserve because I know I never could!
The yard sale is still going to happen on the 30th of June, but now all the proceeds of it will be able to go into her fund for her expenses. How awesome is that?!!
f.r.o.G…fully relying on God
–Anissa
ps…I has to share some great Peyton insight. She found this family picture (I know some of my family will thank me for cropping them out….cough cough my sister cough cough) and wanted to know who that was.
"Who which one is?"
"That one with the super fuzzy hair."
"That would be me, Peyton."
"For real?"
"Yeah, that was me with big hair."
"Mommy, you had fuzzy hair JUST LIKE ME!"
There was some silence as she thought about that picture….then she asked me "Mommy, why was your head so big?"
"It was just my hair."
"I hope my head doesn't get that big."
I personally think her head's already gotten big enough!
