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…
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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 haven’t written in a while, mainly because I have been hopeful and not wanting to say anything to jinx Gage from finally reaching the maintenance portion of his chemotherapy treatment. It would usually take a person who has no complications in his chemotherapy six months to reach this phase but since Gage is basically Murphy’s Law when it comes to leukemia we are about eight and a half months in without starting maintenance yet. Yesterday Gage was supposed to have a lumbar puncture, but his ANC was too low, meaning Gage is at an extremely high risk for infection. So no lumbar puncture, which means no starting maintenance. Hopefully next week when we go back, his counts will be high enough and we can start treatment.
This is the second week in a row, that Gage’s counts have dropped. Hearing the doctors say, he looks great and telling us he should pass, instead we end up hearing that he “flunked” I hate this waiting, the not knowing. The wondering why his counts instead of going up this week they went down. Having to trust in what the doctor is saying but fearing for the worst. Putting on a brave face and a smile, telling our families this is normal, but never really knowing. Hoping what I am being told is true. Hoping what I am telling them is true.
On the up and up Gage’s hair has started to grow back, and he looks like a fuzzy headed baby chick, his hair is so soft and some bits are longer then the rest like a little comb over. I love to rub my fingers through it. It’s his favorite way to fall asleep. He is also so full of energy that I can barely keep up with him half the time, so I am hoping and praying and wishing that this is just a minor setback in the road to recovery; and that next week is counts are high enough to finally start maintenance.
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.
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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