Day 15 and 16

Be not afraid.

As Gabriel spoke to Mary and delivered the news that she was going to have a baby, he began by telling her to “fear not”. How many times when God tries to use one of His messengers to deliver news to us do we get so locked up in fear that we miss the message. The news that God has for us is ALWAYS good, and always to our eternal benefit. Fear is the devil’s way of twisting God’s message and offering us the opportunity to be afraid instead of being filled with trust. Christine, Catie and I had a long talk tonight. Catie had been sad and a bit weepy and she admitted that she was scared, not about dying, but rather how it would happen. We have asked the same question of the doctors and have received a wide variety of responses and possibilities. Depending upon the spread of the tumor and whether cells from the tumor migrate up and down in Catie’s spinal fluid, the end will look very different. The very rarity of the tumor which made it difficult to defeat also makes it difficult to predict, consequently, the unknown, and the fear. We all like to know what is going to happen. It gives us the impression that we can plan better. Planning is our way of dealing with the inevitable and making us feel as if we have some measure of control over the situation. The reality is that many times we have no control over a situation and once we accept that and allow God to handle the plan, the fear passes away. Mary had only to give her assent to God’s plan for her life, “Let it be done to me according to your word”. We all have that same opportunity daily to say to a loving Father who’s plan for us is more amazing than any we could imagine, “YES”.

Catie had a wonderfully full day. Woven through the last few appointments here at St. Jude, she was able to continue to play Santa and spread some Christmas cheer with many of the people that she and Christine have come to know in the last 6 months. She still is radiant when she has the opportunity to give a gift, or even one of her business cards that have a picture of her, a thank you and Merry Christmas. We met a man (Tim) who showed us where the elevator was at the cathedral so that we did not have to bounce Catie’s wheelchair down the steps, and Catie pulled out one of her cards, smiled, and thanked him. Her most joyous moments are when she is giving back. Yet another valuable life lesson from the 7 year old.

We have packed up many suitcases and a good portion of the apartment, that is the good news. The other news is that we have a suitcase the size of a large handbag left and we have yet to pack any of Christine’s or my clothes. Anyone have a shoehorn? We are shipping a number of other boxes home that we cannot possibly get on the plane. The tickets are all set. We are coming home Wednesday and will be arriving in Newark, NJ at noon. Once we load up the car, we will be heading to Mom-Mom and Da’s house to pick up the little ones and then we will head home in time to check homework and share a family meal in our home. Pray that the craziness of the night and the reunion still allows Christine the time needed to care for Catie. Catie’s hospital bed should be in place when we return home.

I was so proud of Catie today. As we were leaving “B” clinic after saying good-bye, she said, “daddy, I wish they could have sung me the “end of chemo” song.” As patients finish their last round of chemo, the staff in “B” clinic gather with the child and sing a song celebrating the fact that they will not be subjecting the child to anymore chemo and then they throw confetti. Since Catie’s protocol was cut short, she never “finished”, and they did not sing the song. But to a 7 year old with a remarkable spirit, life is more simple than that. Am I getting any more chemo. No. Then I should get the song. We did an about face, regathered all of the people who had just dispersed, sang the song and threw confetti all over Catie and her First Communion dress. She was thrilled, as was I because she took the time to let us know what she wanted while there was still time to do something about it, and did.

Tuesday was a full day as well, and another really good one is Catie’s estimation.Three additional moments of inspiration came to us today.Two were provided by Dr. Armstrong, Catie’s Neuro-Oncologist and the head of the team that has been caring for Catie since we arrived.At her last appointment at St. Jude, he spent the time ministering to Catie’s spiritual rather than physical side.He shared a bible quote from 2nd Corinthians with Catie that encapsulates a life model that we can all appreciate and live by.Don’t sweat the small stuff, measured against eternal life it is insignificant.His second thought, which Catie has fully embraced, is this:for Catie and her condition, pain is not acceptable.He has asked Catie to promise to let us know if she has any pain at all so that we can stay on top of it.He told her that as tough as she is, she cannot try to “deal with the pain”, his job and the job of all of Catie’s healthcare team is to keep her out of pain.The third moment came with Catie and Dr. Pai, Catie’s Radiation Oncologist.She thanked him for all he had done for her, and he responded that he had done nothing.In his eyes and in the eyes of many of the doctors, because Catie has not been cured, they have failed.Catie looked at Dr. Pai and with her eyes brimming with hope and determination she told him, “yes, you have done a lot for me!”.The suffering child offering peace; instead of looking for compassion, she offers it.I am so proud of her.What we look to give her in return is simple dignity.She deserves nothing less, and we will strive to gift her with that each day.

The last two days have seen countless other moments like those recounted above.We could not document them all or you would be awake reading this at 4am when it looks as if we may be done emptying the apartment.Catie has said good-bye to other kids undergoing similar treatments, Christine has said good-bye to other parents fighting for their child’s lives.They have both said good-bye to the angels of Memphis who in true southern hospitality reached out to strangers and made them feel welcome and at home by offering cookies, (thank you Miss Mary), a meal, a car, freedom.As Catie said prayers tonight, Christine spoke aloud the names of all of the people who have touched Catie’s life since they arrived at St. Jude.It was over 250.How many people have touched your life today?Have you thanked God for them?

I pray that all of us seize the moment as beautifully as Catie.

Love and God bless,

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

PS – Catie just woke up for her last piece of pumpkin pie in Target House.While she was eating, she let me know that Grandma Gladys, (my mother in heaven) is very proud of me.When I told her that that made me happy, she continued, “do you know why she is proud of you daddy?It is because you married a brilliant woman!”I agree mom!

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