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Happy Birthday Gagers! I love you so much and thank my lucky stars every day that you are here.

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but what about the germs?

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.

 

It must be the coke…

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.

S.T.F.U.

Male oncology nurse: Does he have cream on his back? Me: ….  Him: Does he have cream on his back? Me: Wait, what? He passed? HimYup, his counts were 1,100 MEShutthefuckup, 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.

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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.

His Story

If you can see this video, click here.

Another day another dollar or something like that

So this day came way sooner than I thought it would have. I don’t know how ready I am for it, but to say the least I am so shocked, I don’t really know how to react. Monday, I’m sure the panic attacks will start as will my first day back to work.

I found out today from my union that my benefits ran out back in February  and that I have no insurance if I don’t start work on Monday. Fun times oh, and that I owe $2000.00 that can be paid in two payments in order to keep my insurance. YAAAY! -read sarcastic-

So I can ignore the $2000. bill because lets face it, I have not been working since August and extra money around these parts is scarce. Especially that much extra money but not paying means losing my insurance and Gage kinda needs it. Not sure if you heard but he has leukemia.  FUCK. fuckfuckfuckfuckfuck.

Sorry, I’m not going to not pay the bill. Obviously, I have to. Money is just going to be tight around here for a while, but he is totally worth it. Don’t feel too bad for me because I didn’t mention that the bill was actually supposed to be $3000. but I talked them down to $2000. “Totally based on my powers of persuasion, you proud? “<— Best. Movie. Ever.  So you see it could have totally been worse.

Just in case you were all wondering. I love my job and I am so grateful that I even have one in this economy, because this writing business sure don’t pay. I am also grateful to have health insurance because if I didn’t Gage would have a million dollar or more  medical bill.  That I know for a fact, I can’t pay.

Now for a bigger problem. What do I wear on my first day back to work after nine months?

Another day another fail

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.