Gage, my baby boy, my big boy, my sunshine…
You have taught me more then you will ever know, you are the greatest gift I have ever been given and I am thankful for you everyday. Happy birthday to my little fighter mommy and daddy love you…
If you can see this video, click here.
Gage went in for another lumbar puncture. He came out without having got it done, because his ANC was still too low. But whereas last week when his counts were about 200 which means he is at a high risk for infection his counts today was 695 just 55 “points” away from being pass-able. So now we go back again, next week with fingers crossed and a quick prayer, that Gage will pass and we finally get into the maintenance portion of the chemotherapy treatment.
If for some crazy reason that he doesn’t pass and his ANC is not up to 750 by May 9 or his counts go down, Gage would be scheduled for a bone marrow aspiration for the following week. Because at that point there should be no reason for his counts to have not improved. So as long as they go up soon, I will be happy.
Gage and I at the clinic this morning. Waiting, always waiting.
I have anxiety. Everyday, it seems to get worse. I read a story of someone’s baby who didn’t make it and I hold Gage and pray that’s not us. I wonder if what happens when we put his mediport
back in will his candida
come back? Will we catch it in time if it does? Oh my god, what if he relapses?
For a long time I was able to get a hold of my panic attacks and anxiety and then one of Gage’s doctors said ”we were lucky to catch the candida as quickly as we did last time, because a lot of the times, we lose the young ones before we get to them” …. ”but you’re doing a great job, job keep doing what you’re doing” …
The thing is I don’t know what I am doing. I’m barely holding on some days. I feel like I am being held together with string and one false move and I’m going to shatter and break into a million pieces. I’m not able to fall asleep at night anymore, it seems every time I close my eyes I’m watching a movie of every complication Gage has ever had. I hear it all, I smell it all. The fear washes over me and it wont go away.
I took a CPR certification course yesterday, and as I sat there watching the training DVD, I felt the anxiety start to creep up on me. My shoulders tensed up the blood started rushing to my head. Oh god, please don’t let me start crying, I don’t want these people, these strangers to think I’m crazy. As I sat there I hear CODE PINK (code pink at our hospital means that a child is in distress) being paged over the hospital paging system. I went back to that day. The day we came so close to losing him. I sat there, a I started to sweat, my hands were shaking so hard. I was afraid, I was going to have to leave. But I NEED to get CPR certified! Thankfully, the instructor calls for a break, and I can call the Hubs, who reassured me, that Gage is still here, still alive and that everything will be fine. And for a moment at least, I’m ok.
Later that day I went to my Holy Place. Target and aimlessly walked the isles, eating popcorn and drinking a watermelon slupree basking in the fact, I was by myself. A very rare thing. I found this:
I have to...
Of course I bought it. I don’t know what I’m going to write in it yet, but I keep it with me in my purse and I take it out and stare at the words, needing to see them. Needing to know that what they say is true.
Posted in Uncategorized
Tagged acute lymphoblastic leukemia, anxiety, cancer kids, chmotherapy, fear, Gage, hope, leukemia, live, love, panic attacks
Gage has a lumbar puncture today. It’s not going to be good, so far he has spent the last 45 minutes screaming and we are only in the car! He has just finally fallen asleep. I hope he stays that way for a while, especially since he can’t eat until after his procedure is done today.
Rachel Jacobs, was diagnosed with Hodgkins Lymphoma on September 7, 2010 and has been in remission since February 10, 2011! Congratulations Rachel! You are an amazing girl and I am so glad my sister was able to meet you.
So one of the many things I remember from the hospital, one that I would like to forget is when we would go down for surgery, ct scans, or ultra sounds the nurses would sit my adult sized ass in a CHILD SIZED WHEEL CHAIR! which totally is not what this post is about, but I just remembered this one time when trying to shimmy my way out I actually got stuck and they had to have someone help me out. Because my ass was not meant to squeeze into a pediatric wheel chair. UGH- embarrassing memories, thanks blog post.
Anywho, the other thing I remember most about those trips in the hospital was I would be in the mini wheel chair, and Gagers would be on my lap waving to everybody we passed. I wouldn’t at look anybody we passed in the eye ever, because I hated their pitying looks it was bad enough hearing the “oh, that’s so sad and poor baby.” Really? You totally think that is appropriate to say when I can hear you? It’s not comforting to me. In fact I want to scream “yes, this is fucking sad. But would you like to know what’s worse? Pediatric cancer research sucks.”
Did you know? The federal government has made only very modest investments in research through the National Cancer Institute (NCI). For every six research dollars per patient with AIDS and every one research dollar per patient with breast cancer, a child with cancer receives only 30 cents. To us, and the families of the 35 children diagnosed with cancer each day, it is clear that much more needs to be done to ensure access to treatment and the opportunity to fully recover.
30 freaking cents, that is all Gage is worth to them. It truly is enough to make me want to march to Capitol Hill and shove this blog down their throats. To make them see pictures of Gage make them look at his face, hear his laugh, show them that he is one amazing kid. Make them love him like I do. I’d tell them to get their heads out of their asses and do something about childhood cancer research funding. Because every baby deserves the chance to grow old.
Ethan Deserves a Chance
Caleb Deserves a Chance
Gage Deserves a Chance
And so do the 12,500 children and adolescents in the U.S. diagnosed with pediatric cancer each year.
Posted in Uncategorized
Tagged birthday, blogher, broviac, cancer kids, Capitol Hill, chemo, chmotherapy, clinic, death, delayed intensification, failure, fear, Gage, healing, hope, hospital, life, live, love, lukemia, National Cancer Institute, NCI, panic attacks, port, surgery