I feel like such a failure as a parent, on June 24, 2009 the doctors sent us home from the hospital with a healthy new born baby; and I couldn’t keep him that way. They trusted me, Gage trusted me and I failed them. I understand this is like one of the most irrational thoughts on the planet, but I can’t help it. I’m his mom and I am supposed to protect him, keep him safe. Yet every time he gets chemotherapy I am putting toxic chemicals into his body, that I can’t even throw in the trash because it’s so dangerous they need to be incinerated. I’m pumping this directly into his heart. His HEART!
The one question I have gotten asked at least once a day if not more since Gage was diagnosed with leukemia is “how do you do it?” or “I don’ know how you guys do it.” Really? Like I have a choice, I can’t twinkle my nose, fold my arms, and nod my head to make this go away. Trust me because I have wished, begged, pleaded and threatened the world to make my baby better and I can’t make him better. But truly I do what I have to do, I don’t have a choice. He hasn’t given up on me so I can’t give up on him. I will continue to fight for him, for the rest of his life.
When Gage was born, I made the decision to try and exclusively breast feed, it was hard, and it took a lot of work and dedication on my part, and lots of patience on the Hubs part. Thank goodness he has a lot of patience, because my breast pump was my best friend for nine long months. Which was how long I was able to nurse for. After Gage was diagnosed, I kept having this reoccurring dream, that I was still able to nurse and the cure for his leukemia was my nursing him. I woke up and it was so real, I was lying on a cot in his hospital room, ready to cry because here was the answer, the cure to his leukemia! and I had it in me the whole time, literally, IN ME! But after I really woke up and looked at Gage, asleep in his hospital crib with tubes and wires hooked up to him, I realized it was all just a dream and I was back in Kansas again; but instead of Kansas I was in room 4114 on the fourth floor of the pediatric unit.
Sometimes I wish I could click my heals together and go back to the day we left the hospital back in June 2009. To be completely ignorant of all the hell we have been through. To never have seen my child almost die in from of my eyes. To not cry with my sisters every we time we talk about “that night”, because they should never have had to see their 14 month old nephew intubated. I hate the fact I had to call the Hubs at 11:45 at night telling him to get back to the hospital, because they needed to take Gage into surgery and they don’t know if he is going to make it. I don’t know how the Hubs can trust me after that, when I don’t even trust myself.
This was our first day home from the hospital back on June 24, 2009 we were so tired but so happy. I'd give anything to go back to that day.
So I have a secret. I read other mommy bloggers and the journey that is their kids leukemia. All. Day. Long. Much to the Hubs dismay, because this means I generally get nothing done. All. Day. Long. But I read their blogs to see if ours lives are similar, to know that I am not alone, that Gage is not alone, because even if I talk to the other moms in the clinic, it’s just not the same. I talk to those woman once or twice a week in the clinic, where these woman on the internet, who have no idea who I am. I read about them everyday, getting to know them, getting to love them. ***I kind of feel a little like a stalker, weirdo right about now***
I get strength from these woman, knowing that they have been through hell and back, and they have survived even if their babies don’t. I have cried desperate tears of pain, while reading funeral preparations for their babies. I have cried happy tears while reading posts written about when babies had their last chemo treatment, and got to go home for good, never needing to have another lumbar puncture or bone marrow aspiration again. I’ve gotten sick to my stomach at seeing the word of relapse, and praying and bartering with God or whatever divine being is out there to please never let me hear those words said in the same sentence as Gages name. I have found myself in these woman, and hope that someone is reading what I write and if they are going through what I have gone through that they get strength from me as well.
What I have learned from the majority of these blogs, is that not only do I have the most amazing health insurance, but the hospital we go to is fan-fucking-tastic. I have read about kids having to wait for five hours, before being admitted into a hospital room, or that when from the time Gage was diagnosed with leukemia to the day we knew the type of leukemia he had, acute lymphoblastic leukemia was a total of five days, which I guess is not the norm, because I have heard some places take up to four weeks for results. Those five days seemed like the longest of my entire life, I know I would have gone crazy if I would have had to wait a whole month. Did you know that some hospitals have cancer patients share rooms?! This has got to be the most absurd thing I have read so far! There are no good things about leukemia, chemo, or hospital stays but having our own room is a little, teeny tiny perk.
One of the terms I have heard over and over again has been a baby has “earned” his or her wings. Yesterday I read that Josiah has earned his angel wings, and I hate that term, because he should not have earned them so young. He should have gone to college, gotten married and knocked his wife up with eight babies. He should never had gotten sick in the first place. I hate that we can put a man on the moon, pick the gender of my next kid if I wanted to, or wear underwear that magically makes my waist and thighs two inches smaller; but we can’t find the cause or a cure for childhood cancer. The world truly does suck in that regard.
Some days I really feel like I am barely staying afloat. The last couple of nights I have been having trouble sleeping. I lay awake for hours staring at the wall above my bed, not seeing the wall itself but a movie reel of those first nights in the hospital. Me holding Gage in my arms as a nurse tries without luck to find a vein to start an IV as Gage slips in and out of consciousness. I see his pupils start to dilate, and his mouth starts to foam. I hear the nurses asking me to please go sit in the parents waiting room, since it was starting to get crowded with all the nurses and doctors rushing in. I’m walking the hallways, again. In my nightmares I’m just walking a hallway, lap after lap after lap. CODE PINK is blaring out of the hospital loud speaker and I can’t stop screaming. This is my hell and I have been here almost every day since August 2, 2010.
These last few weeks Gage also has been suffering from nightmares, I hate that he can’t tell me what he is dreaming about. When I go in his room to check on him when he cries out at night, his sobs of terror are heartbreaking; nothing can comfort him. The look in his eyes kills me, because I wonder if he is remembering those nights, like I remember those nights. I had hoped that he wouldn’t remember any of this, that he would be too young; so far it looks like that may not be the case. I hate those nightmares for him more then I hate those nightmares for me.
I am constantly waiting for the other shoe to drop. Our lives have been such a roller coaster ride I keep praying, hoping, and wishing that we can keep on this positive healthy path Gage has been on. But he has a little cold right now, and I get up like eight times a night to make sure his cold hasn’t turned into a fever, I count his coughs every hour to make sure they don’t get worse. His poor doctors must hate the fact I have every single one of their phone, pager, and fax numbers on speed dial. Because, let me tell you since Saturday I have been calling, paging, and faxing at least three times a day. “No, Mom the cough is not in his lungs. It’s just a cold. He’s fine.” How do they know, since they haven’t seen him in a few days? We go back to the clinic for another dressing change, hopefully he will have improved by then that way we can have an easy, stress free weekend.
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.
What did you do today? We walked…
Posted in Uncategorized
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.
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
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)
HCT, AUTO: 29.2(L)
RDW, BLOOD: 15.0(H)
PLATELETS,AUTOMATED COUNT: 129(L)
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.
Wishing you all the Merriest Christmas!
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!