Memory Problems

It has become more and more apparent to us that Marielle has short term memory problems....or maybe I'm just more aware of them or maybe she's not trying to hide it any more.

Prior to her neuropsych testing, she would try to hide it. In one blaring case, she and her brother had gone to Sunday School. They get a dollar each to buy a snack at the break. School is 2 hours and after an hour they break, have a snack and then resume.

When they got home, I asked Rico what he had for break and he said, "Oreos". When I asked Marielle she said she had Oreos, too. Rico said, "No you didn't you had goldfish". It was her response that gave her away. A normal kid would have said something like, "Oh yeah, I forgot, I had goldfish". Marielle said to Rico, which I overheard, "I can't remember what I had, so I'm going to say Oreos and you are going to back me up".

Talk about being hit over the head with a hammer. This response told me that not only did she not remember, but that she had been having a problem with memory for a while and had developed "survivor skills" to cover up the fact that she couldn't remember things.

Prior to this, her teacher had mentioned a number of times to me that she thought Marielle should be sent for testing, that at times she seemed like she "wasn't really there", her mind wandering. Well, after that, we set up testing with the school and the an independent neuropsychologist.

I told her that we knew she was having memory problems, that it was ok, that sometimes the medicine that kids get to get rid of the leukemia can cause problems and that they (the psychologists) were just going to have her do some worksheets and ask her some questions, so they could help her learn better and help her learn how to improve her memory.

On Tuesday (the day after the first day of school, not wanting to overwhelm her teacher on the first day), in Marielle's backpack, I sent a letter to her new teacher and copies of both reports. They were in a big manila folder and I ask Marielle to give them to her teacher. In addition, I mentioned to the teacher, while Marielle was in line, that Marielle had something for her and would she be sure to take it out of the back pack. I also included a copy of the book Educating the Child with Cancer with a note that I'd like the teacher to read the part about Late Cognitive Effects. Actually, I had reminded Marielle about them a couple of times and told her each time that they were for her teacher and when she turned in her folder, she should turn them in, too.

Well, Marielle comes home and here is the manila folder and the book. She had walked home and it made her backpack quite heavy to trudge home. I asked Marielle why she still had them...why didn't she give them to the teacher and she burst into tears and said, "I didn't know what to do with them, Mama, I didn't know what to do!"

I guess the good thing is that she is being more open and honest with me that she doesn't remember instructions. On the downside, it's very hard, as a mom, to witness this.

We have a meeting in the upcoming week to discuss 504/IEP plans with the school. Wish us luck.

Learning to read

So last night, Rico reads the book Wall-E as his book. Now, it was Daddy's night with reading, I was in the kitchen puttering around. Rico reads his book in 3 minutes. But, then again, it's the 5 words on a page kind of book with some pages only having pictures.

Half an hour later, I realize that Marielle is struggling through her book. Wait a minute? It should not take this long for her to read a book on her reading level. So I asked what she was reading... Skippyjon Jones and the Mummy Trouble. That's a bit above her reading level. So I tell them to stop, she's read enough and Ralph says they are almost done.

Later, as we are cuddling in bed, I tell Marielle she gets credit for reading 2 books, because that was a hard book and a lot longer than her brother's book. Then I tell her to choose easier books. And she says to me, "Mom, I want hard books. I want to read more and learn the hard words because I want to be a good reader".

Sometimes that girl just pulls my heart strings. She tries so hard. Things that come easy to her brother, aren't coming easy to her but man, is she a fighter! And the way she's going, she's going to be a good reader, too.

Just so you can see how far we've come...

Marielle at the first Relay for Life that we attended. Her hair was just growing back in and her legs hurt so much from the vincristine that Daddy had to carry her much of the day.



You've come a long way, my girl!

Who stole my daughter....

And replaced her with a reader???

Marielle, who hates reading, who cries when I tell her she has to sit and read to me, got up today, got 2 books, read one and then read the other one to me. Two books before 9 am! I can hardly believe it.

But, on the other hand, motivation....

I told both kids to pick out a new webkinz. Marielle picked the guinea pig. She would love to have a real life guinea pig, but that's not happening, so she was thrilled that there was a new webkinz guinea pig. Rico picked out the porcupine. Then I told them that I would buy them but they were mine until they read 20 books. When 20 books were read, the webkinz were theirs to adopt. Oh yes, and yesterday I pulled them out and showed the animals to them and then packed them away until the books were read.

I made up a book list on the computer and printed one out for each and we started yesterday with Rico reading 2 books and Marielle reading 1. They each wrote the name of the book on the list after they read it.

I guess Marielle is inspired by her webkinz and really, really wants it. Great! I'll buy more webkinz if it motivates her to read! Here's to a summer full of reading!

There are no guidelines for moments like these...

So a couple of days ago, we were sitting on the couch, watching the news and Marielle says to me, out of the blue, "I miss cancer. I wish I had it again". Ok, big knee jerk reaction from me... I said, "No, don't ever wish you had it again. Be happy you don't have it anymore. Children DIE of cancer".

Uh, oh. We had never actually let Marielle know before that kids can die of cancer. I didn't think it was something a 3 then 4 then 5 year old needed to know while she battled cancer over 2+ years. Yes, children we knew died and yes, she knew that children we knew had died but she never made that connection, that it was the cancer that made the children die.

Fast forward to last night, cuddling on my bed at bedtime and Marielle starts crying and saying she doesn't want to die. Oh man. So I tell her that nobody wants to die, but eventually everyone does die, but hopefully it's when they are very, very old. I even use examples of my dad (who is in his 70's and doing well) and Ralph's Dad who died a couple of years ago in his mid 90's.

Then she starts asking me questions about funerals.... "Will they bury me in the ground? Will I be able to take things into the coffin with me? Will I have a headstone?" Oh my GOD! Where did she hear this stuff? Both Ralph's parents were cremated...no casket, no headstone. We've never talked about funerals because quite honestly, our families aren't "the norm". Most of the folks have been cremated and the ashes scattered or interred very much later. (Ralph's moms ashes were only interred 15 years after she died and after Ralph's dad died.)

Then she starts asking about heaven and who she'll see in heaven....uh, again, where is this coming from? Her religious teaching have been Jewish and Jews don't have heaven.

I'm thinking a mile a minute, trying to answer her questions and put her at ease. She's asking if I can be buried with her, not next to her but can they open the coffin and put us together because she doesn't want to be alone when she dies and she'll wait for me but it will be lonely....and then when I die we can be together...

I keep trying to reassure her, she's crying, Ralph who is also on the bed is saying nothing...not one word, nada, nothing. Later, when I ask him why he didn't say anything he says, 'Well, you were handling it ok, what did you want me to say? Besides, you think faster than me."

So then Marielle asks why we have to die at all. And I tell her that if no people died, there could be no babies. See the world would just fill up with people and no new people could come into the world because it would be too full. She loved that answer. She said, "Ok, then, Mom, it's ok that I die. Because I love babies and I want babies and the world needs babies" I feel much better now. I don't want to talk about dying anymore."

These are the conversations that nothing can prepare you for. I really hope I did it "right" whatever that means. I don't want her worrying about dying or obsessing over it. I did want to give her honest answers, no sugar coating, but I don't want her to be afraid.

A picture is worth a thousand words....

Marielle is not into sports in any big way. She usually will try something once and then state that she is through with that sport and will never try it again. I've tried to explain that, like just about anything in life, practice makes you better. But Marielle doesn't believe that's true, especially with sports.

This weekend, we were at a gathering and a bunch of the kids were playing baseball, very loosely...grab a bat, hit the ball...no bases, just hit it and then someone else gets a turn. So Marielle decided to give it a try....

Can you guess how Marielle felt about it?

She did actually hit the ball by the way!





Thanks, Tiara, for this awesome shot!

Raffle time

Ok, so Marielle is just the sweetest kid around. Seriously. Considering all she went through with 2+ years of chemo, all the pokes and prods, all the side effects, well, you would understand if she were bitter or had a negative outlook on life. Not Marielle.

Here's an example. A couple of weeks ago, the kids went to a carnival. At the carnival, you could play games for tickets and then trade the tickets in for prizes. Ha! No trading in of tickets for my girl. She came home, pleased as punch, with a bag full of tickets.

You see, in our house, tickets mean one thing...have a raffle. So, lately, it's been raffle time in our house.

Marielle selects some of her little trinkets and toys and makes a prize box. Then she distributes tickets and holds a raffle. Last night we had a raffle. When someone wins, she is so happy for them and she helps pick out a prize. So when I won, she came over with the prize box, then whispered, "Mom, I put some cool erasers in because you like to write". When Daddy won a prize, she said, "Dad, I put some boy things in, too, like here's a dinosaur". Then she looked at Rico's tickets and tried to pick one of his as a winner. (She likes to spread the joy around.) We had to play until at least everyone won once.

Now, isn't that just the sweetest thing?!

Perfect!

That's how Marielle's blood counts look. We had our clinic visit today. Her numbers are perfect across the board. Now, if you haven't walked this path, you can't imagine how it feels when we do a blood draw. My mind say, "Look at her, she's healthy, she's strong, she's doing great" and yet I worry until I actually see the results. I try to forget about it but it nags the back of my brain.

See, I just don't know if I could do it again....of course, I know I could if I had to, but 2+ years of chemotherapy, watching your child suffer the side effects, all the emotional turmoil that comes with it, well, it's the hardest thing I've ever done and I really, really don't want to ever walk down that path again.

So, I'm on a high today, hearing that her numbers are perfect, hearing the oncologist say that she's so strong (no lasting Vincristine side effects), she's grown 1.5 inches since summertime and lost .6 of a kilo over that same time period, which means the steroid weight is gone, gone, gone!

So, today, life is good!

Blood draw queen

Since Marielle decided to ditch the broviac, a mere 9 months into treatment (that lasted over 2 years) she's had well over 100 blood draws so far. Yesterday she went for another one. We are now able to go every OTHER month for blood draws, since she is more than a year off treatment! As always, she did really well. I think some adults could learn a lesson from her.