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Monthly Archives: November 2010
Last week the Hubs got sick, Gage also successfully fought and won the dreaded cold and me I thought I was better than them both, because I didn’t get sick. HA! And of course that’s not the case, fate stepped in and said ‘eff you and gave me the headache, sore throat body achy cold like symptoms that suck ass. WTF!? I am the primary caregiver of a kid with leukemia, a kid who can be hospitalized for the smallest thing; I don’t have time for this crap.
Oh and did I forget to mention there are only like twenty-six days until Christmas? twenty-six?!! 26!! Where the hell did the year go? I swear being in the hospital for seven weeks has really screwed us over. I have seven whole weeks of forgotten, didn’t get paid jack shit from the disability checks that stopped coming over a month ago lost time. On the up and up our Christmas tree is up, yes our artificial tree, which OMG I love, no pine needles needing vacuuming twice a day, no remembering to water the stupid thing no annoying ass people at the Christmas tree farms and most importantly no chances of tree water going moldy and Gage getting sick, in the off-chance he is neutropenic.
Pardon me for gloating, but my Christmas cards are at the printer, my shopping is almost done, the gifts I do have need to be wrapped, and let me tell you I love wrapping presents, the bows, the ribbons, the perfectly straight cuts; *sigh*my OCD kicks into high gear this time of year. I swear stay at home moms have the life; if I was still working I know for a fact non of this would be close to done. My only Christmas wish this year, is that Gage is well enough to have Christmas at home, not in the hospital; keep your fingers crossed people.
So Gage was supposed to get started on Standard Interim Maintenance, which is the third phase of chemotherapy. I say should have because his ANC (Absolute Neutrophil Count) was 170 and it needed to be 750, so in short we drove an hour just to be told, sorry we can’t start the next phase of chemo today; we’ll see you next monday. Damn.
On the upside two weeks ago when Gage needed a blood transfusion, how normal this has become in our life. Well they put us in the hospital for the transfusion and his pegaspargase(PEG), and of course he has an allergic reaction to the PEG, at first he started to cough, his little face turned bright lobster red, which promptly traveled to the rest of his body; and last but not least the welts all over! Poor kid, cannot catch a break. They dosed him with Benadryl and power flushed is IV with saline to get it out of his system faster.
I promise there is a plus side to this story, at our next doctors appointment they were able to determine that instead of being in the “high risk leukemia category” they dropped him into the standard category which is CRAZY AWESOME!! All it really means is they don’t do the last two PEGs, a vincristine, and the very best news is one less lumbar puncture!! It’s the little things like that we get excited for in this family.
These are Gages’ counts this week:
WBC’s AUTO: 1.0(A.A)
RBC, AUTO: 3.35(L)
HCT, AUTO: 30.1(L)
RDW, BLOOD: 14.8(H)
For the most part I have no idea what any of this information means, and my linking it to this page was the first time I have actually read into any leukemia related information; not because I don’t want to know but because I am terrified to know what can really happen or what it all means. As long as I know the basics I’m OK. If that makes me a bad mom so be it, I need to be this way to keep positive, to keep going, to not curl up in my bed and never get out again; besides the Hubs has read enough for the both of us.
This is the post I have been dreading, the one I almost didn’t write. This is the post I relive almost daily, the one that makes me sick to my stomach, gives me nightmares and panic attacks, the one I hate the most, the one I hope, wish and pray that no-mother ever has to go through; even with its happy ending. With that said, read at your own risk.
Gage came out of his port surgery as a success, and we rushed in to be by his side; he was groggy and wanted to be held. So held him we did. We were told that his surgery went “beautifully” and “with no problems.”
When they wheeled Gage back to his room, his grandma was there waiting for us. We sat around talking about how this could have happened to us, this happens to other people, people on TV, nameless people we don’t know; people we can change the channel on when it gets too depressing to watch.
It had probably been about an hour after the surgery, when my mother in law first asked me if I noticed Gage breathing a little heavier, a little more “gaspy,” hmmm yeah, I do notice it, so I called the nurse in who promptly told us “oh, this is normal, for after surgery” ooookay. YAY! another Bestie came to visit, my mother in law left, and we kicked the Hubs out, telling him to go home and get some sleep, because everything was ok and he was still attempting go work everyday.
The Bestie and I sat around talking about, the weeks crazy events, and how Gage was going to beat this. We especially talked about how, gosh, his breathing does not sound right, “nurse, are you sure he’s ok?” this went on for like five hours me:”he looks like a water balloon, slowly expanding; is that normal?” nurse:”yes, it’s common to look swollen after surgery.” The Bestie and I couldn’t shake the feeling something was just not right.
The Bestie finally had to leave, and my twin sister and older sister came to sit with us, we sat around joking and making fun of Gage, the doctors had put netting around his torso so he wouldn’t play with his port and all this pudge was popping through the wholes; it was so cute! But he looked very uncomfortable, so my sister s left to the store to get Gage some onsies.
I was by myself when I finally demanded the on call doctor come in to check on Gage, because I swear to ‘effing God something is not right. Once the doctor came in listened to Gages’ lungs ordered a chest x-ray, and oxygen to help him breath. (I can’t breath as I write this, I’m starting to shake and sweat, my stomach is bubbly. If I close my eyes I’m back in the hospital) The doctor doesn’t like what she see, she orders the nurse to come in and get another IV going, the problem is he is so bloated they can’t find a vain. I’m holding Gage at this point trying to keep him calm as they poke and re-poke him, FUCKING VAIN!!! My sisters are back they are in the hall, freaking out wondering what the hell is going on. Gage is lips are starting to turn blue, and he’s foaming at the mouth, his pupils are starting to dilate. I just hold him tighter, telling him he is such a “strong, brave boy, and mommy and daddy love you so much, we could not have asked for a better baby and you are the only one we ever wanted.”
“Why isn’t the doctor in here?!” my twin sisters runs to look the doctor who she finds is at the computer and the nurses station, and yells at him to “get off his ass and help Gage!” the nurses ask me to go in the parents room, and wait. Just a we ge into the room, I hear it, I pray to God, I heard wrong but no we heard it right “CODE PINK” (which means a child in distress) over the loud-speaker. I start screaming, no this can’t be happening, my sisters try to reach for me to calm me down, I can’t stop screaming. I see a nurse look into the family room, and I think that’s what snaps me out of my fit. I run out of the parents room and run smack into the on-call pediatrician. The first thing I ask “what are his chances?? I NEED TO KNOW 50/50? 30/70? 60/40??!!” I don’t give her a chance to answer I fire off my questions needing to know, desperate to know. She tells me ”right now we don’t know, but they are taking him down to surgery to remove his port, and to see what went wrong.
I call Troy, and as calmly as I can I tell him “can you come down to the hospital, the doctors don’t like how Gage looks and want to remove his port; and want you here.” At 1:00 in the morning I don’t know what he could have been thinking. I don’t know how I did it without braking down, my older sister unbeknownst to me called her husband and told him to come down because “we weren’t sure if Gage was going to make it.” My twin was on the phone with one of the Besties begging her to get to my parents house and watch her kids so she wouldn’t have to leave the hospital, and oh don’t tell our dad, because, our mom had just had surgery the day before and didn’t need the stress.
The hall outside of Gages room is filled with nurses and doctors, at least twenty of them. When the wheel Gage out of his room, he has a trickle blood coming out of his mouth and a tube shoved down his throat to help him breath. We and running to keep up with them as they take him to the elevators, not even realizing the Twin wasn’t with us, until one of the nurses asks about her, so Cookie my older sister throws the pediatric unit door ope, and screams down the hall “TWIN WE ARE GOING TO THE THIRD FLOOR!!!’ not caring if we wake anybody. We get to the elevator, and the doctors ask if I want to ride down with them, and I’m to terrified to ride with them, afraid to be in the same space as Gage, I’m scared fucking shitless of what might happen in that elevator.
Once on the third floor, I start to shake and I can’t stop, I’m so cold, and so scared, the nurses come and cover me with a half dozen blankets, and it’s not helping. What if that was the last time I was going to see Gage alive, and I didn’t go in the fucking elevator with him.
I am thankful for so much this year, but today I am most thankful for these two.
For the most part we love all of our nurses, and the amazing care they give to Gage. They always take the time to ask me how I am doing and to talk about non leukemia related parts of my life, even if leukemia takes up 100% of my life, they will find something to talk about; it’s nice.
We were in the hospital for seven weeks, which was five weeks more than “normal” leukemia patients. In that time we came to love our hospital nurses, they would stop by to give him a hug or say hi if they weren’t going to take care of him that day. One of the nurses gave Gage a vial of holy water she brought back from the Vatican, another brought us a baby bathtub so he could get a proper bath since he hadn’t had one at least a month by that point. That same nurse once stayed after her twelve-hour shift to watch Gage so the Hubs and I could go out and eat dinner, and have some time away from the hospital. They brought us DVD’s to watch and magazines to read, snuck in to watch Oprahs’ twenty-fifth season premier with me, listened when I was needed to talk, and hugged me when I was alone. It was little things like that, which made our seven weeks in the hospital not seem so bad.
So I was kind of sad when at one appointment a couple of Mondays ago I asked our check in nurse about her youngest son, and she went on about him turning five and him being her baby, she didn’t want him to get older and bigger; and that made her sad. I stood there listening with a smile on my face, but I felt sick hearing her words, because I WANT MY SON TO TURN FIVE, in fact I can’t wait.
Did she have a lapse in judgement? Did she forget that not everybody in this particular waiting room have that option of our kids turning five or ever-growing older? I wanted to put her in her place, let her know how upset this made me. How dare you be sad you have a healthy child!? But then, I remembered that’s it not her fault Gage is sick and her child isn’t; and I shouldn’t begrudge her. I can’t begrudge her, I want to, but I wont.
I still love our nurses, and know that they are doing everything in their power to make Gage better, and to make our lives easier. I’m sure if I told the nurse how I felt about her comment she would be devastated at the hurt she inadvertently caused me, I guess I just wont ask her about her kid anymore.
Do you see the blue toy on the front left? that’s called a Singamajig all of the doctors loved them, my mother in law got it for Gage, he loves it! It is the HOT new toy for Christmas 2010 so go get one, before they are gone!!*
*I did not get paid to say that, I just love this product so does Gage.
Our first full day in the hospital, was so hectic there were twelve people including us in our tiny room, I think the nurses would have kicked out some of our visitors if not for the fact my sister bought two of those party packs from Rubios. OMG so good. Everybody wanted to be there for us, my sister got to the hospital at seven that morning after driving three hours from her house, my other Bestie drove two hours. I am so happy my twin sister was already in California, because my mom was having part of her thyroid removed in four days, so she was able to be with us; she even extended her stay by another week to be with Gage.
Those first few days are still such a blur to me, I think it was on our second day in the hospital Gage was scheduled for a bone marrow retrieval. Because of Gage’s platelet count was so low (normal is 125,000-300,000 Gage was 8, yes, I mean 1 2 3 4 5 6 7 8 no more) they could only numb the area they were going to take the marrow from, no pain medication or putting him under. I can still hear him screaming from the treatment room, which was on the other side of the pediatric unit, with the door closed. I don’t know how the Hubs was able to be in the room holding him down. I guess one of the attending nurses had to leave the room, it’s hard watching a baby go through all that, even for the professionals.
Those first days were oddly normal, other then the fact Gage was walking around with an IV sticking out of his arm, we played in the playroom, walked laps around the pediatric unit Gage riding along in a wagon, or driving the Little Tykes cars (he loved that) it wasn’t long before the nurses fell in love with him
We spent those days waiting, waiting for news from the doctors, waiting for lab results, waiting to wake up from the nightmare we found ourselves in. Finally on Friday we were going to have surgery to have a portacath implanted on the right side of Gages body under his on kind of on his ribs. The pre-op people came and took Gage down to the pre-op (obviously) waiting room, we sat there for an hour with Gage, talking to him holding him, petting his head and giving him kisses; I must have told him I loved him a hundred times in that hour. Finally when they took him, I could not hold back my tears and I quietly cried as they wheeled him to the operating room with all of his stuffed animals to watch over him and make sure everything goes alright. After about two hours the doctors came out looking all happy to say everything went perfect and we could see Gage now.
Sunday nights are usual busy getting ready for Monday mornings, packing snacks, sippy’s, diaper, wipes and an over night bag “just in case,” our Mondays usually entail hitting snooze on the alarm clock at least twice before jumping out of bed and rushing around to get myself and Gage dressed and out the door, making me thankful I packed the essentials the night before. Half way down the hill SHIT! I forgot to put the EMLA (numbing cream) on Gages’ port causing me to have to turn around and end up getting to our appointment late, again.
The morning at our appointments really just depend on what phase in the chemotherapy we are in, currently we are in consolidation, (I will explain more at another time.)
I try to always make going to the Doctors as a “fun” thing even though he gets poked and proded, and we never know if our day will end with us at home or at the hosital. I sing and skip with him when we get out of the car, and as we walk past our, special oncology/hemotology waiting room I let him look in the window to show him all of the toys and other patients waiting for him to come and play. I think because he is only seventeen months old and doesn’t understand what’s going on in his little body, that I try to make everything seem normal. Even though what our live are far from normal.