Some not-great news

Good evening to you all and welcome to the next installment of the Catie Story,

I had told Christine last night that I was not sure if an update was needed tonight as we were not expecting any news and things were pretty much status quo. I’ve been wrong before. Seems the news about the spinal fluid being cancer free was bit premature. Turns out there were cancer cells in it after all, (apparently they draw out 4 samples and gave us the news based on the first one which was clear).

So, this is where we are. Catie is now officially diagnosed as having a metastatic ATRT (Brain cancer).

Unfortunately, what that means is that she will have to have the higher dosage radiation across the entire cranial spinal field as the fluid and thus the cancerous cells can get anywhere that the fluid goes. In the near term, this should not cause her any further side effects beyond the nausea and lack of appetite that we are battling somewhat successfully now with the medication. It may push back the date that they leave St Jude’s to come home, and when we get those dates, we will pass them on.

In the long run, because of the higher radiation, she will lose some cognitive ability as she matures, most likely 10-15 I.Q. points. 5-6 years from now, she will have some more difficulty in school than she would have had if they did not have to boost the dose to the brain. The increased radiation also increases the chance that in the long term she may develop secondary brain tumors, (remember that radiation can cause as well as treat cancer).

So, you may ask, why change the treatment. Christine and I spoke at length with Catie’s doctors today, and what we have understood for a while is that despite the great job the surgeon did in getting all of the tumor, this type of tumor is tough to beat, so you have to throw the kitchen sink at it and hope, and pray. Even with this most aggressive approach of surgery, radiation, and chemo, Catie’s chances are still not great, (putting a % to it is difficult as there have not been enough cases to arrive at a statistically sound assessment), call it a long shot. We, as parents and in consultation with the doctors have to do everything we can to get Catie to her 8th birthday. We will gladly deal with her needing a tutor in sixth grade, but we have to get her there.

We have talked the last few nights about attitude. God was serenely present with Christine and me as we were receiving this news and agreeing to alter the treatment today. Neither one of us took more than a few seconds to absorb this latest punch before we got off the mat and started looking for the blessing that HAD to be there. We know that God has our back, our faith demanded that instead of closing our eyes in fear and despair, we open them and ask God, “what do you think we should do?”

Christine, I love you so much, thank you for the gift of your faith in my life, because your first thought was, “thank you God that she had the spinal tap, (which if you remember, they were not going to do, but changed their minds on Tuesday). If they had stuck to the opinion that having the spinal tap was not worth the risk to her surgically repaired column, we would have continued on the original course of therapy, and would not have gotten all of the cancer, and when it came back, there would have been no stopping it.

So, on we go, recognizing again that your prayers not only moved the doctors to change gears and perform a test that they had written off, but also for lifting Christine and me up so that we could see the big picture…..thank you.

On to the updates of the day. In the most recent attempt to have yet another test to make sure that the tumor really did start in the spinal column, Catie has a PET CT scan today of her entire body, no results as yet, and we probably will want to get these confirmed before we let you know…so be patient. Catie’s cousin Helen and Uncle Sean arrived in Memphis today and Christine and Catie picked them up at the airport and gave them a tour around St Jude’s, (with Uncle Sean pulling Helen and Catie around the hospital in a radio flyer wagon). They then had lunch, played on the playground at Target House, painted some pictures in the craft room, had dinner (Catie’s appetite still doing well), and then went out for ice cream.

Before Sean and Helen arrived, Catie had radiation treatment number 8. Tomorrow, no treatments, but they are all heading to Graceland, the Peabody Hotel, (apparently there are some famous ducks there), and to a Memphis style barbeque..

The kids and I are expecting the St Pierres and the Pohlmeiers, dear friends from a prayer group that Christine and I joined when we were first married. 12 kids and 5 adults, maybe it is better that Christine will be delayed getting home, I have to make sure the house is in order. We went to the pool tonight and they are all asleep, another blessing. Megan is doing a terrific job of keeping things going here while I am at work, and she is just a true blessing for us. They are all getting along very well, and have even managed to write a play which they will be performing at the house next week called “Hansel and Gretel, and Lucy”. I am not sure if Lucy is the witch or a long lost sibling that we never heard about when we were kids, but after I see the play, I will let you know.

Many of you took your assignment from last night seriously and emailed back the blessings you saw. I will share one of them with you. My parents are coming down to visit Catie at the end of August. It is a long drive and not one they were looking forward to.. My father is a Ranger on a golf course and was recounting Catie’s story on the course today when the golfer he was talking to announced that he was a pilot with Northwest, and would like to offer my parents 2 roundtrip tickets from Charleston to Memphis . Keep telling Catie’s story, she has some powerful forces on her side, and they will touch your life.

I received an email today from a religious education coordinator who wrote,

“I do not know you but somehow your e-mails have reached my computer and your beautiful sharing has touched my heart. I will keep your family in my prayers. Also, please know that I am going to have the children in our parish religious ed program adopt Catie and your family in prayer beginning this September.
You are right! It is all about attitude….always looking for the good that will come from the suffering.
Psalm 46 gives us so much hope…Be still and know that I am God.
God bless you and your family.

And then signed the email and indicated the school at which she worked. This was our response:

Very interesting that you received this as God’s ways are often mysterious to us. Catie’s mom Christine was a student at your school as a first grader in 1971.

We cannot know all that God has planned for us, but it will be infinitely better and better for us than anything we could come up with on our own. May God continue to bless you as he has us, and may you find rest and peace this night.

God bless,

Christine, Kevin, Catie, Maggie, Max, Mia, Molly, and M.E.

Ps – do not forget to hug everyone in your home before you go to bed tonight and tell them you love them!

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