A few reminders
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The past two and half years in visual story telling.
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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!
Pediatric Cancer Month
Lots of folks write awesome posts about this month. I just can’t do it. Do a little search if you want to know more. But just know that there are a lot of kids with cancer still fighting.
Fever
Tonight Isa had a fever. After complaining of a sore throat today, I am not that concerned. Anytime a child has a fever it is a cause for concern. But, the look on her face as we rode in the car. Getting the thermometer out. Having GG say, “wow if you’re taking her temperature again she must be really sick.” I responded with, I don’t think she is really sick, I just need to gather the data I need in case I have to tell anyone.
37.7 gave 160mg of Tylenol Spiked to 38.3 just afterward, then relented and went down to 38.1.
Once you live through something like treatment of your child for ALL you are a changed person. Oh, yeah, I think the psychs call it PTSD…
Day by Day
Still seems strange to not being dealing with meds, ports and whatnot, but I see the scar, you know My Favorite Scar, and I remember to be nice. To take a deep breath when it takes an extra 20 minutes to put her to bed.
Today, and yesterday and the day before we dealt with regular kid stuff. I notice that she has dark circles under eyes, who doesn’t, but the low platelets must be causing that. Everything except her platelets have eased back within in normal range. She gets her blood drawn through the arm by some VERY nice phlebotomists.
We had some behavioral stuff going on. Likely just a product of being treated differently for so long. As we pull out of that we simply enjoy having her around. Still feels so strange. Going through so much for so long and then to have it over. Just odd. Hard to believe. Surreal.
Overall things are going. We will be starting to make lifeplans again. Anyone else feel like this? Like, oh, yeah, that is what I wanted to do 3 years ago. I remember now…..
Thanks for reading.
dmm
Riding Alone
Today as we set out for our local amusement park our youngest daughter rides alone with her grandparents. For a fleeting moment I entertained the notion that if something had happened to her this is how our family would be permanently. Just the four of us, Mama, Papa, Brudder & GG, riding alone, even within a group. Oddly still large enough to be considered a family, but with a major hole invisible to the outside world.
Each day across the world, parents face challenges in just regular ole being a mom or a dad, then there those of us dealing with life altering physical diseases of ourselves or of our children. Reminders of what could have happened to Isa keep me firmly planted in a field of gratitude.
Of course, as any parent of a child with cancer knows , during treatment we keep a militaristic watch on our child’s condition obviously hoping for the best. Sometimes we get it, thus resulting, hopefully, in a long-lasting compassion for others in similar situations.
Typically, BC, before cancer, I would have described myself as an empathetic person. Sometimes I am grateful for cancer, because now I can easily say that my understanding moves more toward being a sympathetic person. For example when I watch documentaries like Born Schizophrenic: Jauary’s Story I have a greater understanding of what it means to have a child with an illness. Something I read on her father’s blog stuck with me. He mentioned the societal acceptance of physical impairment and the continued disregard for mental illness. Although all of us with deathly ill children have at least one experience with negative comments they are often relegated to times when our children were bald or in a wheel chair or when on steroids. Imagine a lifelong affliction like bipolar or schizophrenia even autism where a child’s behavior can cause comments sparked by ignorance or disdain. Or perhaps even worse a complete lack of any attention at all.
Maybe in these cases it is the child who rides alone.
Gentle Reminders
The last few weeks have found us dealing with some intense emotions from our little cancer survivor. Feeling better with more energy gives her a feisty nature. Of course she could just be taking after her, um, father, ahem….
But when this comment popped up on this blog page, I felt a slight sigh escape from me.
Our 17month old daughter was just diagnosed with Pre-B ALL this past Wednesday
Most definitely I am glad to be on this side of chemotherapy. Most definitely I would rather have never had to deal with them at all, but I know that I am a stronger person for it, more grown-up replete with more wrinkles and gray hairs.
And then there is this from another mom whose daughter went off treatment before Isa
Hug your children, tell them that you love them every day, and realize that grades/sports/achievements pale in comparison to the simple smile they shine at you when they know you love them unconditionally.
So gentle reminders that life is good, and that cancer treatments are hard and that there is a network of folks who have gone before and a reminder that there will be those behind us as well.
Thanks for reading..
dmm
SO LONG & THANKS FOR ALL THE FISH!
This is not the title I want to use for this post, but even with my moniker I have made it through this past TWO AND HALF years with relatively little online cussing. So if you don’t know me, just guess what I want to say. If you do know me, then it’s likely that you already know what I would say.
We’re done.
Just typing that makes me like sob/cry/laugh. I’ve experienced the strangest sensations about ending this whole thing. It is truly indescribable. And as with all things, I am gonna try to describe it, but first the play-by-play.
May 8, 2011 Mother’s Day–pancakes, that is all you need to know, besides the last day that Isa took 6-MP.
May 9, 2011
Isa’s half birthday. We started celebrating half birthdays in earnest in May 2009. Isa’s 3 1/2 birthday. If I recall we had strawberry shortcake that time. But since then we’ve determined that we eat pancakes for our half birthdays and cake for our birthdays, unless of course you’re Mama or Papa, our birthdays are six months apart, so we get both!
After pancakes we drove, not leisurely, Papa gets so cranky when we have to leave. I can’t understand why, when he says we have to leave in five minutes I am always on time sitting exactly where I am supposed to be sitting with everything that I need. We never, ever, ever leave late. This is just one of his quirky crankies.
But even with me being super on time like we usually are, Papa stopped to get kwaffee… yum…. and surprised the girls with cookies!!! woot, well he tried to surprise them, Isa asks every time for chocolate chip cookies. He told her to shush and just wait, that asking for everything all the time, makes it no fun to surprise her.
Then off to the wait from hell, oh wait, I wasn’t cussing. Oh shite, does it make it better if I use Scottish slang?
Where was I… oh yes, waiting.
We waited a really long time. But during our little wait the nurse practitioner we’ve been working with came out to us. Freaky, I was like “what’s wrong you never come out here.” But basically she said that there were no rooms and then she said that she and the doctor had talked over the past month, and in light of Isa’s body sort of rebelling (large spleen, low platelets) and because she was on the HIGH risk protocol with oodles of chemo, that if it was okay with us, they would just skip the last vincristine and dexamethasone pulse. Um, hello, yes, I am so fine with that.
So at that point, I was like. We’re done, they really did it, they took her off all her medications! (okay she’s still supposed to take Septra for another 6 months)
It was like the opposite of being told your child has leukemia. Instead of spiraling inward, I spiraled outward. Your mind expands, and takes in all the opportunity that you might not miss. Then it hit me. It had been sneaking up on me for nearly a month, and was getting really close the past week. But at that moment, Survivor Guilt hit me.
I know it wasn’t me who went through all of this, but it would have been me without a child if anything had happened. So I felt guilty. For Sammie’s mom, Anika’s mom, Jaymun’s dad, Tyler’s mom & dad, Jesse’s mom and grandma, etc… you get the idea, those kids didn’t make it out alive, and I feel guilty. Like I want to sneak off and hide and quietly jump up and down, then look over my shoulder. You know, just to make sure that no one was looking.
Maybe we could pretend the whole thing didn’t happen? No, I can’t. It did and it sucked, but now it is over and I feel sort of guilty. Hard to describe exactly.
Okay, so they accessed Isa, got her blood and all went well. Discussed taking her port out, so we’ll do that in a month. So strange. Like okay, so long and thanks for all the fish. No biggie. You just spent a gut wrenching two years of your life not knowing if your child is going to live or die, but you’re done now and we’ve got other patients to treat. C ya.
Our NP was great, she gave Isa a medal and told her that she was our hero. Isa has worn that medal nearly every day since she got it. It has already fallen apart twice. And she rang the bell. When the kids go OT they get to ring the bell. I have seen only two other children ring the bell. If I saw a group gathering at the bel, I’d try to be supportive without being intrusive. One little tiny girl popped into Isa’s bell ringing, curious about what was up. Isa said she wanted to ring the bell for her Uncle Mark, who didn’t get a chance to ring it.
It still seems surreal. She’s done. I teased her last night by saying, I’m going to have to wake you up later to give you your medicine. And she said, “but mommy I didn’t eat any cheese.” (6MP can’t be taken with dairy) And I said, I know you didn’t eat any cheese, you don’t need to take any medicine.
After the bell ringing, with no meds to fill we went to the gift shop where Isa bought Mark a balloon. She wanted to eat at King Wok, vietnamese, but instead we convinced her to go to the deli for corned beef. (All for practical location stuff not because we didn’t want Vietnamese.)
After our late lunch we headed to the cemetery to thank Mark for riding along on our journey and to ask that he take off to help some other child. We had picked the Mickey Mouse balloon to leave for him, the groundskeepers must love us. Most certainly an emotional visit. Leaving him even though I’ve never met him is so difficult. My father-in-law would sometimes visit the grave when on break from work. What could he do, besides walk away. Even after 30 years it is hard for Money to walk away.
Is there any way to whisper online?
My kid is still alive. At least for now, but even still, she managed to survive the treatment. The treatment is done, she is OFF treatment because she finished her protocol, not because her counts were too low, or she was too sick to continue.
Today, at this point in time, for this moment she has beat leukemia.
Labs from 5./9./11.
Reference Range (for normal)
- WBC 5- 17
- RBC 4-5.2
- Hgb 10.2-15.2
- Hct 36.0 -46.0
- MCV 78-94
- Platelet 150 -450
- Moncocyte 2-11
- Absolute Neutrophil 1.5 – 10.2
- WBC 6.5
- RBC 3.9
- Hgb 12.2
- Hct 36.2
- MCV 93
- Platelet 131
- Moncocyte 5
- Absolute Neutrophil 5.3
New Blog title **updated again!
** I changed the title of this blog from Isa, Leukemia, Life ILL to Isa’s Leukemia, Our Lives… .or I LOL!!!! Because I do, now that we’re off treatment. ****
Thinking about changing the blog title. First, someone sent me a text using shorthand for the blog, and I’d never noticed that it spells ILL. And, we’re heading into off treatment territory.
I know a lot of cancer bloggers who head off into different and new blogs, but I was thinking about continuing this one since everyone has become accustomed to it.
Maybe we could have a contest for names? My dream was to use the initials WELL….
Or maybe I’ll just start a new one and keep this one for cancer stuff.
Okay, I am confused myself on what I meant.
Basically, I enjoy blogging, but as we move out of cancer into what could be some semblance of normal life I won’t be writing much except about homeschooling or work or funny stories.
I plan on leaving this blog up and streamlining it a little bit with better links and tags to direct readers around FOR SURE. BUT…. my question is…. should I leave this one as ILL and go on to a new blog that is WELL (only not really with those initials cuz that is way to hard to find words to fit) And those who know me can follow to the new place and all the people who don’t will just go there (ILL) for cancer stuff.
Currently I am thinking NEW blog because the blogroll is all cancer kids and so much about that site would be cancer related that it would be full of cancer and non cancer stuff.
Ann.. I think I am sounding like you thought you were sounding. Done.
I decided..
Within the next month we’ll be starting a new blog and will update this one regularly and if something cancer wacky happens. And I am gonna get some kickin name. Anyone interested in suggesting both a url and /or a blog title go for it.
How ’bout Benevolent Despot? ; )
OOPS I did it again….
And I ain’t talking like Britney.
I went and read Cancer kid blogs, caringbridge and websites. I wish could blame it on someone else, but it was me clicking the links. Those of you who’ve been with me since the beginning know that I’ve followed some kids through their treatments, but in October/ NOvember of 2009, I sort of stopped. I had too. It hurts too much to read about what the other parents have to go through. That was about the time that a whole bunch of kids died. Jaymun, Tyler, Sammie…..And it was 30 years after my husband’s brother died from rhabdomyosarcoma.
One girl, Ellie, also had rhabdo. Her parents miss her I’m sure. Funny thing about the children, they continue to smile. Reading about all of these kids also makes me grateful for their stories. Especially when I think of my mother-in-law in 1979 losing her youngest son to this disease. We now have blogs and forums and websites with lots of information. My in-laws had none of that. They had to make their own way. Even though I feel nauseous when I read about the other families tragedies, what would it have been like to have no one, or so few that it felt like no one to talk about what a huge, huge, HUGE THING it is when your child dies. Thank God for the internet and the connections I’ve made. Having the other parents comment, make jokes, commiserate makes it so much easier.
When the docs told us that they thought Isa had relapsed, the first person I contacted was Quinn’s mama! Who else could I talk to about bone marrows, and platelets and feeling sick in the bottom of my stomach. Who else!
We’re coming to another big transition, off treatment, and as good as that sounds it comes with a whole bunch of other stuff. Long term effects, more hospital visits, heart damage, port removal, etc. I’ve kept up with cancer families and all of them have this post. This one that I am writing.
The holy cows of India batman we’re almost through this thing. Where is that other shoe? Is it gonna be with some more cancer, some late cognitive effects, infertility or maybe, just maybe there won’t be another shoe.
But, as Money has said, “It ain’t over till it’s over, and that ain’t the outcome we want.”
Thanks to all the children who had leukemia and participated in studies that helped us reach the treatment protocols. Honestly, we couldn’t have done it without you!
Blood and Bruises
Titles are the best part of blogging. Reminds me of highschool journalism class. Headlines and blog titles… they are interchangeable. Get their attention.
We’ve got the steroid devil living with us again. Those little pills make such a fuss in our family. Thursday morning Isa woke up with a bloody nose, a sure sign of her platelets going low again. She had MTX, VCR and DEX on Wednesday. So no surprise that she went from good to all chemo kid again. we’ve got a month to go. Other parents have said that the weeks before going OT also seemed sort of tough for them.
Beside the nose bleed, she’s lots of bruises up and down her legs. Her feet will be firmly planted on the ground. She did enjoy two days of riding her bike. And I felt nervous the entire time. Crankiness and hunger from the steroids has set in. But this time it seems more emotional. Just like she can’t control her feelings.
Amazing that we started this thing, Isa was only three, now at almost five and a half, she seems so grown up. Two and half years is a VERY long time. A very long time.
Thanks for reading!
dirty mouth mama
Chef Lucien Gregor
