Spinal Tap

Kim and I usually try to leave out the heavy, burdensome news regarding Grace. We want this blog to be a celebration of Grace's courage and amazing will, as well as other things, but I would not feel right if I did not post my true feelings today.

Today, because Omi is in town, I was able to accompany Grace and Kim to the hospital for Grace's monthly clinic visit. I understand that this is an event that Kim experiences monthly and I am not sure how she has the strength. I go when I can and every time I do, I humbled and deeply saddened by the experience.

The night before , like packing a school lunch, Grace packed a bag full of treats because she knew dinner that night would be her last food or drink until after her spinal tap today. The amazing thing about this mundane act is how matter-of-fact Grace was and how practical she was. She hates spinal taps, she can't stand being poked, I am sure she hates the hospital and she knows how awful she feels after, yet she knows she needs to go and she knows Leukemia is a part of her life. It does not run her, it does not intimidate her, it is something she lives with and slowly beats down, consistently and quietly as only Grace can with a smile on her face.

As I dropped her off with Kim before parking I was almost brought to tears (that is all I will admit) as I watched her little person walk into that gigantic hospital that represents both hope and despair. At one point we carried her into those same doors knowing what we may hear. At another point we excited hanging on to the great news that Grace will most likely will be okay for good. But as Grace exited the car with Kim , she did not hesitate , she did not complain. She knew where she was going, she was holding her packed lunch, her backpack full of things to past the time, and her umbrella and she walked hand in hand with Kim to get poison injected into her spine and poked and prodded. Only to end up being put to sleep in her moms arms and to awake drowsy , spine sore, in a hospital bed with her parents telling her how brave she is.

On a normal clinic visit, Grace sits in the lobby waiting for her name to be called. When it is, she goes straight to the measuring room to be weighed and measured. She then is taken to an exam room where she waits until a nurse comes in, to access her port. This is a large needle that they inject into her chest so that they can test her blood and inject chemo into her bloodstream. When we began doing this procedure, it would take Grace over an hour to gain the courage to allow the nurse to put the needle in her. Today she climbed onto Kim's lap, took off her sweatshirt and showed her port, counted to three with her head buried in Kim's chest and on three the nurse injected the needle. She looked at me beaming as I was so impressed at the speed at which she let the nurse do this. She then told me , "Dad I actually like spinal taps because I get to have the needle taken out when I am asleep. " The only thing worse for Grace than having a needle put into her is having it taken out.

After her port being accessed, we walked with Grace to the surgical room where Grace asked Kim to hold her until she fell asleep. Grace knows that parents are not allowed for the procedure , but they can stay until she is put to sleep. As they injected the medicine in her, she quickly fell asleep in Kim's arms. She laid her on the table and Kim and I stood in the hall as the door closed. We waited listening to Grace's heart on the heart monitor until the procedure was done. When the doors opened, there Grace laid, barely taking up half of the operating table, covered in a warm blanked. We walked in and waited until she woke. When she did, groggy and disoriented , she smiled and asked if she was done and her needle was out. She then slowly got her packed lunch and started to eat. As she was eating I asked her how much her spine hurt after her spinal tap. She said it only hurts for a couple of days and it is no big deal.

All day today she has felt awful and has only left the bed for a moment. We celebrated the new year early from our bed and then Grace fell asleep.

Grace is our hero and a little girl who shows us the example of courage, determination, and delayed gratification. Although she only has 10 more clinic visits and 3 more spinal taps, she daily takes Chemo, steroids, and antibiotics from home. These medicines are constantly increased as her bloodwork relays her health. Once again they are upping her dose and we know it is helping and at the same time she will be feeling the effects for a while.

I apologize for the downer of a blog, but we are so proud of Grace and want to memorialize her courage.

Happy New Year,
JR and Kim