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“… and she loved a boy very, very much– even more than she loved herself.” ― Shel Silverstein, The Giving Tree
I’ve tried to write about it before now, before its been almost a year, before the nightmare started all over again. When we were once again, carefree. When we worried less and laughed more. It’s just, the words don’t come as easily as they used to. The tears do though. I’m hoping with the dam broken, the words will come with it.
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…
Somewhere, in some tiny little town Jesus just appeared on a fish stick because I’m writing a blog post people! The first in like FOUR months. I know, that’s a long time to go between posts. It’s enough time to gain 15lbs, cut and color my hair, have said hair grow out an inch and a half, showing off heinous roots. ***note to self, call Tia*** Swear off pork and red meat, but still eat lumpia and menudo. The kind with cow stomach not the band with Ricky Martin. It totally doesn’t count either when it’s food you can’t live without. Most importantly it’s enough time for Gage to have ZERO leukemia related scares!
Except for that one time his B-cells were like 400 points below where they should be forcing him to need an immunoglobulin transfusion. Momma was relying’ heavily on Xanax and crossed fingers his counts would miraculously sky rocket back to where they needed to be. They didn’t. Bastard, B-cells. So transfuse we did. It was the first time Gage had been accessed* for longer then 20 minutes since getting his port back in last June.
Everything went smoothly, except the nurse didn’t insert the needle in the correct spot, so we had to re-access Gage, then blood wasn’t coming out. But a clot did. Great. Oh, and the EMLA didn’t work, so Gage felt every needle poke. All. Three. Of them. Needless to say he is now terrified of getting accessed. Finally time for I.V.I.G and it was so easy. In the end it brought up his counts over 1,500 points. Totally worth it. I hope we don’t have to do this anytime again soon.
After I.V.I.G. we went down to X-ray to see if maybe there was a kink or crack in the tubing of his port because apparently, that shit can happen. Great. Good news though, no crack. Just a small kink in the tubing because it goes around his clavicle which totally explains why if you make Gage look up and right the blood flows like a severed artery. Now just to find more reasons to make him look up and to the right. Fun times.
So as you can see only minor set backs, considering what Gage went through last year. I’ll take it.
*the kid in the YouTube video is NOT Gage.
For the last few years every Sunday I get up and the first thing I do is read http://www.postsecret.com I always find a secret I can relate to, in some small way. This Sunday was the first time I saw a secret and thought, did I send in my secret? Holy crap, I could have made this post card! (I didn’t, I don’t have the time; but I could have.)
On this day last year I was blissfully ignorant. I didn’t know that in less then 24 hours we would begin the battle for Gages life. That in a little more then a week I would be watching doctors rush around, trying to keep him alive. I watched nurses and surgeons race him down to sugery not knowing of he would come back alive or not.
I spent all day today remembering our last “normal” wondering of I knew what I know now would I have changed how we spent the day? I can honestly answer, no, I’d do everything the same way. We went to a BBQ at our friends house, Gage road on a longboard with daddy for the first time, played with our friends new puppy Peddles we had an amazing day.
I also remember I complained about Gage waking up every two hours at night and how moody and whiney he has become in the last few weeks. He seemed to be crying for no reason, I could not figure it out what was wrong.
Little did I know, the waking up every two hours, the moodiness, the crying and most importantly the bruising I attributed to a clumsy toddler learning to walk were all signs pointing to acute lymphoblastic leukemia.
After dwelling on August 1, 2010 all day today I can honestly say, we had a perfect day and I would not have changed it for the world.
Gage had an appointment today to get his dressing changed. Nothing new there, it was the same as every Wednesday since December. Except this time I asked the Doc when Gage would be able to go places, other than his Grandparents house. Because lets face it we are getting pretty flippin’ board at home.
Do you know what the Doc told me? That “other than day care, Gage can go anywhere he wants because his counts are on the up and up and he is healthy.” I was taken aback on hearing that.”but, but what about the germs?” I asked. Like all of a sudden because the Doc says it’s OK, I am going to start not freaking out when ever I take Gage places. Just the idea of taking him somewhere without a mask is making me feel panicky.
Like what if I take him to mecca ***Target*** and someone coughs or sneezes on him? Do you know how many people don’t cover their coughs and sneezes?! It is absolutely disgusting! Cover your face! Gage is one of the few oncology kids to not go to the hospital because he got sick. He was admitted to the hospital for just about everything else, just not for having the common cold or flu. Thank you baby jeebus and hand sanitizer wipes.
So now that Gage has gotten the go ahead, Grandma is going to take him out tomorrow during the day, when the stores are less crowded ***note to self: give Grandma hand sanitizing wipes.*** Then Granmmy and Papa are going to take him to the San Diego Safari Park this Sunday. Which makes me less anxious since he will be outside most of the day. I am happy Gage will get to go out but super excited because the Hubs and I will have a day to spend with just each other. Something we have not done since Gage was diagnose last August. I am totally looking forward to this weekend.
and I’m not talking about the passport to refreshment either. But come on. How the hell does Paris Hilton “sing” “act” get paid to make appearances at clubs, be a complete waste of space in general and still have time to tweet about her completely vapid life; and I can’t find time to write a blog post since going back to work??And, do not even get me started on not remembering the last time I got my eyebrows done. Oy-vey, where are the damn tweezers?
So I guess I should start off with Gage is doing fan-fucking-tastic. Have you ever realized that by just adding fuck to a word it will totally drive your point home. Like hi-fucking-larious or re-fucking-diculous. Ohmy-fucking-god Gage has leukemia. Thankyousweet-fucking-babyjeebus Gage is in remission! Point made.
So I am back to work. It is hard, I stand on my feet all day, I am tire. All. The. Time. The insomnia that plagued me when I wasn’t working has decided to stick around. I’m starting to get used to four hours of sleep each night. OK, I’m not. Temazapam is quickly becoming my newest bestie, along with xanax and prozac.
I find it is harder than I had anticipated telling people I see on a regular basis at work, where I have been for the last nine months. Obviously all of my co-workers know, but I deal with outside people all day long, a lot who know about Gagers existence; so of course people ask about him. I told one woman, and she started crying and going on and on and on, about how sad and unfair the world is. I ended up feeling bad! So now, I am very selective on who I tell about Gage. It’s not that I don’t want people to know. Hello! BLOGGING HERE! But it is so much easier telling you people; who I can’t see then telling a person standing right in front of me. I just can’t handle the looks I get.
Male oncology nurse: Does he have cream on his back? Me: …. Him: Does he have cream on his back? Me: Wait, what? He passed? Him: Yup, his counts were 1,100 ME: Shutthefuckup, oh my God. We didn’t think he was going to pass, because he had a cold last week, and we’re all sick at home, and his counts dropped like 20 points in so many hours. He passed? Are you sure?- At this point my voice cracked and the male nurse asked if I was OK.
Honestly I wasn’t sure if I was Ok. I wasn’t really sure how I felt. Of course I was so freaking excited obviously because Gage finally “passed” from delayed intensification to maintenance but scared because holy hell, MAINTENANCE! we have waited nine long months for this. Three months longer then most, because of all the complications. Also because, we are kind of in the chemotherapy home stretch. What if the cancer comes back? We now have more freedom to go places, because maintenance generally means higher counts. How do I go from never taking him anywhere to suddenly start taking places again? I mean there are germs everywhere. EVERYWHERE. ***note to self ask for higher quantity of Xanax, and stock up on hand sanitizer wipes***
So he passed and Gage had to get a lumbar puncture, where his amazing doctor inject chemotherapy medication directly into his spinal fluid and test the fluid for any leukemia cells that should definitely not be there. It is such a stressful time, Gage hates to be held down. Hates it. In the past we have had to have three nurses and myself hold him down, and that was with benadryl and fentanyl. Let me tell you, not fun. At all.
This time it was different though, this time he didn’t try to fight us holding him. He did cry a little, but I sang him songs, traced his eyebrows and nose with my finger and gave him what felt like a million kisses. Telling him that he is such a strong brave boy, a fighter who I couldn’t be prouder of and that I loved him more than words can ever express.
For the next two and a half years Gage will be on a cocktail of chemotherapy drugs, he will get vincristine injected into his port, which hopefully he will get put back in within the next two months. This kid needs a bath, he hasn’t had a “real” one since December 2010, he misses it and sponge baths just don’t cut it. He needs to soak. Then every three months he will get a lumbar puncture to make sure the leukemia stays gone.
He is on the road to recovery people. It is long and so very scary and dangerous. But he is making it. He is surviving.