Gage and Tracy
It has taken me days to figure out what I have wanted to say about Saturday. I start to write something and nothing seems to be adequate enough. How do you thank someone for bringing awareness to a cause that is so dear to me? For helping to restore my belief that people are incredibly amazing? For helping our family not only spiritually but financially? How? Words truly will never be enough.
But thank you to the Nicosia Family and Mr. Rangel and all of his students for helping to put on such an amazing and successful walk on Saturday. Thank you to everybody who came out, and showed their support to Gage and the Leukemia Lymphoma Society, and raising almost $6,000.00!!
You started this as a class project on paper and turned it into an amazing day of love and support! We started out as strangers and ended up as family, who we will never forget, and who we make sure Gage never forgets; he will grow up knowing just how loved he is.
So thank you, from the bottom of our hearts.
Tracy and I at the walk, she put the whole thing together. She is amazing.
Gage walking with the dog
So once the shock of being pregnant wore off, I did EVERYTHING I was supposed to do. I said hello to prenatal vitamins, and goodbye Tylenol for headaches and sciatica, my bloody mary became a virgin mary and no more sushi,***California rolls do not count, they are not sushi*** I planned for a drug free birth; that the Hubs quickly vetoed. Thank you baby Jeebus that he did too, because I was rushed in for an emergency c-section after twenty-two hours of labor. Which happened to be the easiest labor, ever. It was that that last hour that totally messed everything up. Thanks Gage.
But once Gage was born, I thought the biggest thing I would have to worry about would be autism. I swear, dumb, I know but I guess I have always been the “glass is half empty” type of girl. So we bought The Vaccine Book, by Dr. Sears and again, yes, I know that there has been no proven link between vaccines and autism, but we still chose to go through with the alternate vaccine schedule, and no flu shots ***I don’t tell you how to raise your kid, don’t tell me how to raise mine*** I nursed forever, used glass bottles, attempted to make my own baby food, Gage took one bite and refused to touch the stuff ever again. I might have even tried cloth diapers, but I throw Tupperware away if it’s been sitting in the refrigerator with food in it too long, so extra laundry wasn’t something extra I was willing to ad on to my to do list.
I would never have guessed that this is where my life would have taken me. A stinking cute toddler, with a terminal illness. A little person I love more then life it self, who if I could magically take this shit on myself and save him the pain, I would. I never thought that maybe Gages, first birthday could have been his one and only, or that the reason he would be getting his first haircut was because, I wanted it to on my terms and leukemia and chemotherapy could suck it; so we shaved it. And then it never fell out, because apparently 5% of kids do not lose their hair during chemo. Gage is one of those kids who doesn’t follow the “chemo rule book.” Everything that should not happen, happens and what should happens, doesn’t. Ain’t that the shit? Makes everything much more of an adventure.
He’s our fearless little warrior.
Today is the Hubs birthday, I love you and hope you have an amazing day!
What did you do today? We walked…
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Tagged broviac, candida, CT scan, Gage, happy anniversary, hospital, leukemia, live, love, port, surgery, the walk
We just finished our last day of Standard interim maintenance therapy(SIMT) yesterday! the normal procedure for SIMT which involved Gage having to go through this:
- vincristine IV on days 1 and 29
- dexamethasone IV or orally twice daily on days 1-5 and 29-33
- oral 6MP on days 1-50
- oral methotrexate on days 1, 8, 15, 22, 29, 36, 43, and 50
- methotrexate IT on day 29
The IT the methotrexate mentions on day 29 means InTrathecal, basically they injected it into his spinal fluid, via lumbar puncture. Always a good time at chemo.
It is so good to know that we only have one more therapy session before we continue on to Standard delayed intensification therapy, and that’s only if Gages blood count is high enough to move on. Which from past experiences I know that treatment can be delayed for weeks on end.
This is what Standard delayed intensification therapy consists of:
- vincristine IV on days 1, 8, and 15
- dexamethasone IV or orally twice daily on days 1-21
- doxorubicin IV over 15 minutes to 2 hours on days 1, 8, and 15
- pegaspargase IM on day 4, 5, or 6
- cyclophosphamide IV over 30 minutes on day 29
- cytarabine IV or subcutaneously (SC) on days 29-32 and 36-39
- oral thioguanine on days 29-42
- methotrexate IT on days 1 and 29
This round of therapy is similar to the consolidation therapy, he went through in the very beginning but Gage was in the hospital, having everything go wrong with him, we were more worried about him surviving complications to surgeries and infections. I honest to Jeebus can’t remember any part of consolidation therapy, also mid way through treatment Gages diagnoses was changed from aggressive treatment to standard treatment; due to complications from his pegaspargase. That complication was one of the best complications so far, just because they were able to reevaluate him and judge he was responding so well to treatment so his chemo doses were decreased and so now they aren’t as strong.
Once Gage is done with Standard delayed intensification therapy, he will move onto Maintenance therapy, for the next three and a half years. Which seems like such a long time, but three years is nothing since we want Gage here for at least another eighty years or so. This is what Maintenance therapy involves:
Each course of maintenance proceeds as outlined below. Courses repeat every 84 days for a total of 2 years from the start of interim maintenance therapy for female patients and 3 years from the start of interim maintenance therapy for male patients.
- vincristine IV on days 1, 29, and 57
- oral dexamethasone twice daily on days 1-5, 29-33, and 57-61
- oral methotrexate on days 8, 15, 22, 29, 36, 43, 50, 57, 64, 71, and 78
- oral mercaptopurine on days 1-84
- methotrexate IT on day 1
It just seems incredible to me that Gage, has undergone such dangerous treatments. Seriously, I have to inject these things into him on a daily basis, and yet I can’t even throw them in the trash because it is hazardous waste and totally illegal. But if this saves his life, then I am willing to do anything.
Gage getting his dressing cleaned and changed. He is so awesome! Oh, and yes, that tube is sticking out of his chest, it actually coils into his heart.
Ick. No, I am not having a baby! Get your mind out of the gutter, but it does seem like everybody I know has baby on the brain, or in the belly to be exact. I guess, maybe, sometime down the road? Maybe we’d have another baby… Oh, God, who am I kidding? I was lucky enough to get away with as few a stretch marks as I did with Gage the first time, because if I have another baby, I’m sure my stomach, thighs and boobs would look like the screen on my G.P.S. mapping system. Not cute. And all of that baby weight I lost six months after Gagers was born? Well, Gage was diagnosed with leukemia, and I gained a fifteen pound food baby. If my kid having a terminal illness wasn’t depressing enough, I now look like I’m about 4.5 months preggo***I’m not***. Talk about adding insult to injury here. Thank you Baby Jeebus, for Spanx. Amen.
I don’t say any of this to hear the, “oh, you’re not fat” or “what are you talking about? you look great!” We all see what we see, when we look in the mirror. The good, the bad, and the chub. But I regress, I do have a point to my story. A lot of people have asked me “if you had another baby, and you could use the cord blood and it would be a 100% guarantee to save Gages life, would you get pregnant?” … WTF? Are you kidding me? Of course, we’d pop another baby out next week if we could. But that stuff doesn’t always work. For some people? yes, but it’s not 100% so we will stick with that we have been doing these last few months, and birth control. They both seem to be working. Keep your fingers crossed.
Also the more I think about it, is it even fair to knowingly bring a baby into this crazy ass shit we are going through right now? In my honest and very humble opinion I can’t see that as being fair. We’d be bringing a baby into a world where we could not focus all of our love and attention on it. Then, we would have half of our attention taken away from Gage, and right now, he needs everything we can give him and a love hogging baby sibling would just get in the way of that.***read sarcasm*** I do very much respect families dealing with a seriously illnesses, especially when more than one child is in the picture. Feeling guilty, about not paying attention to their other “healthy” kids; at least that’s what the other moms at the clinic say to me. One mom I know, was eight months pregnant when her four year old son was diagnose with the same type of leukemia Gage has. That has got to be the the toughest situation. Oy Vey, could you imagine? This shit kills me sometimes.
I can not believe that it has almost been six months since Gage was diagnosed with Acute Lymphoblastic Leukemia. Mainly because it feels like I blink and day has passed or I go to sleep and another week has flown by. I start to write a post and it takes me all day long. I just can’t focus, too many what ifs are running through my head.
Even though I usually work part time, since Gage was diagnosed I have become a stay at home mom. I spend my days with Gage trying to take care of him, making sure he is eating a fat free diet, getting enough sun, but not too much sun that his skin burns; since the chemo and medications make him sun sensitive. Is he getting the social stimulation he needs? I asked his Oncologist about kids with leukemia and their social and cognitive skills, and where he should be for his age group. Before Gage was sick he was in the 95% of everything, and was ahead of the game when it came to doing most things. Except walking, he was lazy, and wanted to be carried everywhere. His Oncologist told me that kids who have a “major” illness are known to fall behind in those areas, she also said he may always need extra help in school, or he may be fine. You just never know how they will progress. GREAT. Hearing that has freaked me out so much that I have spent everyday reading to Gage and doing flash cards and puzzles. All. Day. Long. I swear, I can read all of his books to him from memory now.
Having that extra bit of information on my plate, has me up late at night google-ing stuff life what tools I can use to help Gage learn more, and to be a well rounded toddler, who interacts well with other kids; and doesn’t act all bratty especially since he will be going back to daycare in a couple of months. Which has me so freaked out. Just the idea of not spending every day all day with him, gives me anxiety. What if he needs me? or something happens and they have to take him to the hospital and I can’t be there to take him, and he’s scared? Is he at an age when he goes back, will he think I am abandoning him? I never worried about any of this stuff when I first dropped Gage off at daycare, but so much has changed thirteen months since his first day going to daycare. I’m lucky the Hubs puts up with my neurosis, and tells me everything is going to be OK, and he will at most always be only like ten minutes away from where Gage goes to daycare, and can be with him in a heartbeat if he is needed, or just think Gage needs him. Which actually does bring me comfort. He even emails, me links to helpful mommy and toddler websites, with fun stuff we can do at home together.
I hope with some more time, I will be able to learn to let go and treat Gage like he is a normal kid. I do not want leukemia to define Gages life, this will be something that he went through, yes, but I do not want this to be a crutch for him. I also don’t want to live the rest of my life with this fear of everything that may or may not happen to us.
Three years ago today we were married on a boat in the San Diego harbor at sunset. Saying yes, was the smartest decision I’ve ever made. Thank you to the Hubs for giving me your last name, your love and Gage; they are the most precious gifts I have ever received.
Posted in Uncategorized
Tagged broviac, candida, CT scan, Gage, happy anniversary, hospital, leukemia, live, love, port, surgery