Thursday, June 30, 2011

New Family

Before I start the update, I must thank The Red Cross Headquarters in Kalamazoo for inviting us to your 10-plus gallon donor function. It was an honor to be around people who have saved the lives of thousands! To everyone who has donated in Gideon's behalf and you are due for another poke: Gideon is still collecting those fishies. So make your appointment, please. :)

Gideon's ANC is just above 1200, so these numbers are okay when it comes to fighting infection, but not high enough to increase his chemo dosages. He is back on steroids and the food cravings are much pickier right now. Food he has always loved, he spits out. Sometimes I just want to taste what he's tasting. Sometimes I wonder if he has subconsciously attached food to memories and that's why he's grossed out. I don't know, but I really loved the stage when all he wanted was tomato soup. Why can't he just crave asparagus?

Not many of you know this, but Gideon was diagnosed with a Sensory Processing Disorder when he was just a baby. Water on his skin felt painful, tags on shirts, etc. His OT appointments rid him of the more pressing challenges, but still to this day the texture of all fruit and vegetables make his gag reflex work double time. As you can imagine, this struggle along with the stomach issues chemo has brought to us has made eating such a difficult task. For a long time, I could puree fruits and veggies and he would eat them that way, but not anymore. Once again, he is dealing with so many variables. He has now been referred to an occupational therapist for further help in getting over this issue. I am praying that these visits will open the door to more food that he will eat that does not taste like tin to him. We start next week.

Clinic went well. I now know that both of my boys view that place like a second home. They play with complete comfort and race Little Tike cars down the halls with enthusiasm! That's what Nurse Nancy called their giggles and semi-loud outbursts: "enthusiasm." I was on my way to put them in a chair to calm and quiet them down when nurses met me out in the hall and assured me that they were not bothering anyone. I think I was just overly emotional and wanted to somehow keep the clinic silent and reverent after what I witnessed as soon as the boys and I arrived to our appointment:

It hit too close to home. It grabbed my soul and started to wring it out over a sink full of "WHY?!" I saw her bolt from one of the clinic rooms, and I recognized those eyes in a millisecond. They were hallow sockets of massive shock only brought on when overwhelming pain is heaved unexpectedly unto the human spirit. It was the look of every beautiful thing, thought, memory evaporated in an instant. Those were the eyes of a soul experiencing real hell on earth. I wanted to run to the end of the hall (a close cousin to "hell" in spelling) and throw my arms around this precious mommy whose heart had just collapsed from whatever news she heard behind those doors, but I recognized her animal-like movements in dialing her cell phone. She had to get the news out. She had to feel like by saying it out loud over the phone, she could process, she could plan, she could have more people around her to hold her up because just as her heart felt as though it had failed, her feet were next. I heard a nurse say that the doctor was talking to "the new family" and my fear was confirmed. Another baby was stricken. And that's when an uproar of emotions invaded me and I really wanted to puke: NO mommy should hear that her baby has cancer. I felt myself shaking in absolute rage. Honestly. I don't think I have ever been so completely seething at one thing in my life. At the same time, I wanted to somehow comfort her. I wanted to tell her I knew what it felt like... then I remembered. Upon hearing those words for the first time, I felt like the only human in the universe who could understand my own pain. I walked into the clinic for the first time while Gideon was in the Children's Hospital and looked at the smiling moms and sweet children in the waiting room. In that moment I convinced myself that there was no way that family had been told the same news as I was told. No way would they be smiling. NO way life could just keep going when "cancer" joined the family. Sadly, by the time we were put into our own room to wait for the doctor and left, the new family was gone. Maybe she wasn't a hugger, but I would have wrapped her up so that the hug wasn't a hug, it was life support.

No one wants to join the pediatric cancer family. But once you are one of the 46 families who are given this news every single day of the year, the pain and determination to beat it bonds us all. We have to beat this. I never want to witness this again. Ever. I never want another family to hear those words. C'mon, cure.


  1. Oh, I have sooo been there. I did reach out to one mom who was so outside herself, and pointed to Malcolm who was starting to walk post surgery and said to her in full ernestness: "you CAN do this," and pointed to the room full of mothers and said "we all do this, please call me if you ever need to talk, I will absolutely be there for you no matter what." She rebuffed me; I know it wasn't me she rejected, it was the dignosis... that stomach turning, bile churning diagnosis that is too vile for a parent to keep down.
    1 in every 320 kids...

  2. What a gift you offer us! I awoke early this morning and began my normal: worry. After wasting fifteen minutes of imagining and fretting about things that haven't even happened yet, I got up and asked God to help me. He brought to my mind you and Gideon, among others who continue to struggle with significant, not petty, real, not imagined crises. Thank you for all that you share so artfully and heart-fully. My prayers continue for your family's difficult journey.