Tag Archives: broviac

Life, Not Like I Imagined

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.

The Walk

What did you do today? We walked…

Treatment

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.

We Did…

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.

Labs…

So you all know that Gage went to the clinic on Monday for our usual chemo, these are all of his blood counts for this week.

WBC’s Auto: 3.0(L)

RBC, Auto: 3.33(L)

HGB: 9.7(L)

HCT, AUTO: 29.2(L)

MCV: 90.7(H)

MCH: 30.3

MCHV: 33.4

RDW, BLOOD: 15.0(H)

PLATELETS,AUTOMATED COUNT: 129(L)

MPV: 7.7

NEUTROPHILS %, AUTOMATED COUNT: 43.4

LYMPHCYTES % AUTOMATED COUNT: 41.5(L)

MONOS %, AUTO: 12.3(H)

EOSINOPHILS %, AUTOMATED COUNT: 2.5

BASOPHILS %, AUTOMATED COUNT: 0.3

Everybody at the clinic was pretty happy with his results, which means I was pretty happy. Gage continues to get through everyday with little to no complications, I just hope we can continue with this positive trend he is on.


Monday at the clinic, waiting for chemo and lumbar punctures.

Merry Christmas!


Wishing you all the Merriest Christmas!

Kinda Bitter

It happened today. I was finishing up Christmas shopping today, while the Hubs was at the hospital with Gagers, and I hit me, came out of no where and knocked me flat on my ass. I was jealous of all the parents in the store Christmas shopping for their perfectly healthy kids. Kids who haven’t spent the last eighteen days in the hospital, kids who have not had to fight for their lives for the last four and a half months. They haven’t had to watch the devastation on parents faces as they are told their kids have a terminal illness, or see the look that crosses their face when they realize this may be one of the last Christmases they have with their kid, and it’s going to be spent in the hospital. In the last 138 days I have never gotten upset or jealous about healthy kids and healthy families, because I’d not wish this on my worst enemy.
I hate myself, for feeling this way. Really, it’s nobodies fault my kid is sick and theirs are not. Ick, even writing this makes me feel bad.
But on the plus side, we are HOME!!


Free at last, free at last, thank the doctors; I’m free at last!

www.thedailylove.com

No moment is guaranteed – live for today. #TDL


Sometime in September 2010.

Take 1,644 annnnnd action!

I am so glad Gage was born in June, mainly because it is almost six months from his birthday to Christmas, and he always gets enough clothes to last those six months and more. I almost never have to buy him stuff, it’s nice. The truly best part of the six months between holidays? ***yes, Gages birthday is a holiday in our family*** The pictures. I have thousands of pictures of Gage, crappy, blurry snapshots on my camera and phone, pictures I’m glad I didn’t delete because I looked fat or my eyes were closed. These are precious memories, I will keep and cherish forever. But as fun as my amateur pictures are, the ones I love, love, love the most are the ones that http://jennbeephotography.wordpress.com takes. Theses pictures are birth announcements, Christmas cards, and birthday invitations. She is such an amazing photographer and a pretty fantastic person too! I’m so grateful to know her and call Besties.


Some out takes from this years Christmas card.

The Nicest Nurses I know

His 19th birthday was yesterday. He is the only adult in the pediatric oncology unit. His chances for survival are better with the kids then the adults, so here he stays with the “babies” but he doesn’t mind, he smiles and waves as we walk by his room for the millionth time; nods his head when he recognizes something in Gagers that makes them part of the same team. The I’m too young to die team, the I’ve been through hell and back, but I’m still here fighting team.
He wanted a lap-top computer for his birthday he knew it was expensive but hoped maybe if it was a combined birthday/Christmas gift his mom could afford to get it for him. Even though he is an adult he is still just a kid who really wants something cool for his birthday, but as his birthday grew near he knew his mom could not afford a new lap-top computer for him, but that was ok because he was going home after 57 days in the hospital and that is a way better birthday present anyway.
Little did he know the nurses who work here are the best nurses anywhere, and had taken up a collection weeks ago to get the only adult oncology patient in the pediatric unit the only thing he asked for on his 19th birthday. A lap-top computer. I love our nurses, they are truly amazing people. They go out of their way to make their patients and their families happy and comfortable.
Happy 19th Birthday Big Guy.