Leukemia 101
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My site stats are up.
That means another family has a child with leukemia. And it pisses me off. BUT… i am also glad tht I am there, or was there so that it might be easier for them.
To hear, ” She has blasts in her blood.” ugh.. what does that mean…
“You’ll need to admit her immediately.” ugh, do they mean now at this moment.
Then to hear
“She can go back to school if you’re comfortable with that.”
Does this make sense? NO. None of it makes sense because they’ve just told you that your child has cancer. WHAT!!!! Not possible.
So we need Leukemia 101 for all the parents of new lukes out there. We need a mentoring program where we can pair newly diagnosed families up with old timers like me.
A person, not just a message board where they can connect and ask the questions that need to be asked. Do I give the ara-c before or after breakfast? Not that we could answer every question….. but it is sure nice to have someone to ask.
Of course it isn’t just the site stats that have me up in arms about leukemia again, it is a daughter of a family member of a Facebook friend.
That does sound convoluted. But basically what it means to you is that another child has been diagnosed with cancer. Leukemia, the 2 year treatment, cancer. The one with the 95% survival rate at 5 years after diagnosis. The one where the parents freak out. Oh, wait, that is all cancer isn’t it.
So, if you’re a current or former cancer parent POST IN THE COMMENTS the number one thing that you wish that someone had told you!!! Post it now. Stop reading and go post.
Surely you cancer parents weren’t this bad at following directions. ; )
Welcome to Leukemia 101!
A few reminders
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The past two and half years in visual story telling.
Makeover
We recently went for a checkup. Isa got her first EKG. We went to the oncology department. All basic things.
But the hospital completely remodeled the entire floor. It was so unusual, and felt surreal.
She checked out okay. Her platelets continue to be a little bit lower than norm. Or right at the low mark on the test. This has been the case ever since she went off treatment.
Super Max
Check him out.
oh psssst… hey.. you..
Isa’s been off-treatment a two years. yeah.. Two…
I know. Yeah.. it feels great…
Remembering
Just a quick update.
Isa’s check-ups have been good. We’ll go back in a couple of months. But it is so hard to re-read or respond to comments.
Can’t believe we made it through! But we did.
New or Old?
Are you new or old? I said to the 20 something dad in a leather blazer.
The man who moments before had been speaking in a confident manner turned his eyes downward with a waver entering his voice as he answered,
“New.”
The nurse called our name at that exact moment, so rather than go into a dialog about diagnoses all I could offer was, “We’re old. All I can say is that it can get better.”
It feels different being ‘old’.
We were escorted to our room where we were lucky enough to have had a nurse that we saw frequently throughout treatment. They remember Isa, mostly they remember us because Isa looks so much different.
She apologized for being late, because she had to take someone upstairs. That is the code word for INPATIENT ONCOLOGY. Isa calls it going upstairs. Going upstairs is the start of the ride.
But for Isa, we’re pulling into the loading area, and getting ready to disembark. Her ANC was 5300, her platelets at 191K. We’re at the end of the ride. Her spleen is receding, her strength is returning, her calves aren’t as tight, and she doesn’t fall when she walks. Now we’re just working on arm strength so she can turn a proper cartwheel.
We’re doing OK. We have a little fun. We have a little stress. We have a lot of love and honestly, for us it is still one day at a time.
Peas out.
Moving On
A lot of times, when I was in the midst of all the hell we were going through I wanted to read about life after cancer. And I had a hard time finding it.
A lot of people quit writing. I swore I wouldn’t be that off-treament family. But then, here I am with months of nothing.
We’ve moved on with our lives. Our wish trip came through and it was truly fabulous. Our daughter was so happy. And she got an opportunity to meet some other kids that were sick like her.
Yesterday as we were bopping over the hills in our SUV she said, “mama these hills make me feel like I did when I was sick.” And it wasn’t a negative comment. Simply sharing that the feeling she had in her tummy is how she felt then.
But I didn’t know. I cried. I had no idea that her tummy felt queasy when she was sick. She never mentioned it. Not once. She went through it alone.
Oh yes, we were all there for her, and with her every step that we could be. But she was alone. She is the one who will have to, at some point, tell future doctors, friends and lovers that she had leukemia. That she survived . Not me. Not her dad. We can move on from some aspects of it. She will forever be a survivor.
Our family survived the traumatic years of leukemia treatments, until February of this year. Then we broke apart. My husband and I have separated and are doing what we can to raise the children with as much peace as possible.
So, life after cancer can have so many unexpected outcomes. Additionally, it is as if while she was on-treatment I stuffed a bunch of feelings. And now that she’s made it over a year off treatment. Some of those hidden feelings are popping out. Nothing specific.. just feelings of fear that want to be released.
I was so afraid. Every day. Fear so great that I would lose her. That I would do something wrong. That something I wouldn’t be able to handle would come up. But at the time, I had to pay attention to what the moment was.. BUT now looking back I have a bit of a safe distance. It’s behind me you see, because I am moving on.
Decluttering
In May it will have been a year since Isa went off treatment. In June it will have been a year since she had her port removed.
I just yesterday got rid of the emergency port kits I had made. We lived two hours away from her hospital. So I always had the equipment to access her port either by me or at the local hospital. Oddly the docs had no problem with us accessing her, drawing blood and dropping it off at the local lab.
Bye-bye heparin and saline flushes. Bye-bye 3/4 inch 22 gauge needles. Bye-bye surgical masks.
Cancer Moms.
Pink and Red
Isa wore a pink sweatshirt and red sweats today as she rode her bike with her sister. Her legs are strong. She still trips over her feet, but I can’t say whether that is due to Vincristine damage or an inherited klutziness. Sometimes I am amazed that she is still here. I appreciate her so much. I told her that I was twice blessed by her, once when she was born and once when she went off treatment.
I am grateful for every moment I have with her and her sister in this amazing life.
Go Dog Go
Last Wednesday we went to the hospital. The front office staff was all new. They had to ask our name!
THEY HAD TO ASK OUR NAME!!!!
Isa’s counts are low normal on most things, and still just about 10k short on platelets. Her spleen shrinks each time we go. NO BIG NEWS!
Each time we go, I feel nervous. A small sense of dread. This time, however, I didn’t even take the Bag of Fun, so although I was nervous, I didn’t plan to stay all day. After the hospital we went on a field trip to a museum! WOW.. an outing!
I just realized that I didn’t even post about her diagnoseversary. January 14, 2009. I remember it very clearly. GG even said that she remembers Isa getting her x-rays. Isa says she remembers getting poked.
How far we’ve come, and I look forward to how far this intense child and I will go. And today, my little cancer survivor read Go Dog Go to me. What a fantastic day today is! And maybe, just maybe, we’ll find the tree with the dog party. The big dog party!
Onward and Upward
We spent Isa’s 6th birthday yesterday at the hospital. A regularly scheduled appointment.
Her counts are all within normal range, or almost to normal range, platelets only 122k whereas 150 is normal.
For the first time, GG felt a left out. Oddly, Isa got oodles of gifts and presents over the time of leukemia treatments. But, the gifts pushed GG over the edge yesterday. I look at it positively. For three years Isa’s elder sister gave the limelight, and lots of hugs, gifts and worry to her very sick sister. But, now, that Isa’s moving into recovery mode quite strongly, GG is moving into being able to show her emotions.
After some corned beef sandwiches, bagels and lox at the deli, we ate cookies and went home.
The routine is being broken. We won’t be going back for two months. The middle of January. I double checked to make sure it wasn’t going to be a problem if we couldn’t make it. Middle of winter could be snowing and dangerous to drive.
Our next appointment is January 11, 2012. Auspiciously, January 11, 2009 was the first day that her primary care doctor first told me it might be leukemia, with January 14 as her official first bone marrow aspiration.
The protocol calls for the Septra to end on the sixth month off treatment. So we are done with all medications. Isa acts like any other kid who just went through years of chemotherapy and survived, like a kid.
Vampire
You would think that after over 14 blood transfusions that I would be sick of seeing a pale faced child with dark circles.
Vampire: a wholly different type of pale.
Too Many Views
Each day I check my blog stats. Just in case I have a comment I need to moderate. Each day I am struck that I have had someone view the blog. That is too many views. One view could mean that well-meaning friends are dropping by. But I can also see the search engine terms that got them to me.
| Search | Views |
|---|---|
| peg asparaginase | 2 |
| leukemia blogs | 1 |
| blogs about childhood leukemia | 1 |
| pediatric cancer month?? | 1 |
| interim maintenance i leukemia | 1 |
| leukemia | 1 |
| port for blood transfusions look like | 1 |
| leukemia blog | 1 |
| childhood leukemia blog |
Does anyone notice anything. People searching for information about leukemia. I hate that. This means that kids out there are still getting diagnosed with leukemia. That means that even though I am not watching them go through all their treatments. They are still getting leukemia. And I also hate that.
Thanks to WordPress for offering people like us the ability to share our stories for free. And to search engines that help those that need us find us. Thanks for the words that come to help me convey, as best I can, what it means for a child to have leukemia.
Too many views on my blog means that too many parents are searching for information to help their children survive.
Thanks for reading.
For those of you who don’t read comments. I received an incredibly special comment that I wanted to make sure that no one missed.
I have been following your blog for about a year now and the is exactly how and why I came across your blog. There is so much scary information out there that it was nice to find another parent’s perspective, it made it feel more human for me. Thank you for having the courage to write this all down for the world to see, you have no idea how much it means to a cancer mom like me. My brain has been so scrambled since my daughter was diagnosed that I couldn’t possibly articulate the journey in writing on a regular basis. This past month’s appointment(LP month) I sat in the waiting room feeling so sad because the room was filled with new faces, it still brings a lump to my throat, and unfortunately there are worse things than Leukemia. This month I met a teenage boy with an inoperable brain tumor, a 2 year old with leukemia, and a baby with a stomach tumor. There were a few more new faces but I didn’t have the courage to hear their stories, I felt drained and weepy.
Again, THANK YOU for writing this blog.
Today, these searches lead other to us: I have no idea why anyone would search Dirty Family Camping. But the rest show what people need to know, or maybe want to know.
| isa leukemia | 5 |
| do children with leukemia have purple circles under eyes? | 3 |
| low anc in childhood leukemia | 3 |
| blog about children leukemia | 2 |
| dirty family camping | 2 |
| blogs from mothers whose children are on methotrexate for | 1 |
| peg asparginase | 1 |
| leukemia blog child | 1 |
| leukemia life | 1 |
| child’s hair falling out again in maintenance of leukemia | 1 |
| getting a lumbar puncture | 1 |
| delayed intensification leukemia |
Good Grades
If Isa got grades for cancer patientry, then today she’d have gotten an A. Her counts are good, except for her platelets which are riding just below normal at 121k and her spleen is still enlarged but not getting bigger.
She is 112 cm tall and 19.75 kg. She isn’t gaining much weight but is gaining cm, 2 almost every 6 weeks. Our next visit will be on her birthday. One more birthday spent in the hospital!
Isa's Leukemia, Our Lives 
