Happy Memorial Day

Thank you to all the men and women that have served, are serving, or will be serving our country. You are forever in our thoughts and prayers.

toothless

Madison lost her second tooth

Thursday May 27

Right before dinner

Which was hamburgers and hotdogs, and corn on the cob – her favorite.

Tough to eat when one is toothless

But she made it work.

And thanks to my Kodak Play we can all squirm thru, I mean watch J extracting said tooth. GAG!!! Enjoy…

Terrified

I started this post, mentally last year, actually writing it May 28, months before school starts. Sitting at my desk at work with tears streaming down my cheeks.

I’ll start with saying that I do have an older (handsome, smart, funny…) son that is already in school, Jr. High; yes he survived, and yes he is happy. I understand the logic. But that does not make this any easier. I am terrified of the idea that Madison will be starting school this year.

I have thousands of reason. Some sane and lots of insane mommy reason - like, she just needs me (or maybe it’s I just need her). I don’t want her to be scared or frustrated or hurt or sad or… I think you get it. I think she got a pretty crappy start in this world and deserves nothing but happiness now and forever (remember I said insane mommy reasoning).

I know she will love being in school. She wants nothing more then to make lots of friends. She will be happy (and maybe sad, scared, frustrated… and that she will be ok). I know she is waiting to soak everything in. I know all of this. I’m still terrified.

I didn’t want her to start out being labeled, you know the “sick kid”, or the “cancer kid” she has been cancer free for 3 ½ years. J and talked about not even saying anything to the school since she was released medically with no school restrictions. I agreed, until I went in the gymnasium during the tour of the school, and one of the gym walls is a rock wall. Yep, a 4-5 foot high rock wall. I spilled. She is labeled. She will have restriction placed by mom – no harness free rock wall climbing. Let me explain, the cancer is not my biggest concern anymore. My concern is the hole the cancer left in my daughter spinal cord (c1 – t2 for the medical types out there). This hole promised to put my daughter in a wheel chair twice, both of her tumor resections. This hole promised additional surgeries including removing 2 of my daughter’s ribs to fuse to the vertebrae to assist in holding her head up. This hole cause Madison’s neurosurgeon to be amazed every 6 months that she is still holding her head up on her own. So yes, this hole forces this mom take some extra precautions to make sure Madison is safe. I won’t be there to protect her.

I am scared that she will get hurt. I’m scared that she will have her feelings hurt. I’m scared that she will be scared.

Remember me?

Terrified.

WAR

Yesterday, there was a small war going on between Madison and the Boys. A war of the signs. It started with the boys closing the door, in Madison’s face, and not letting her in their room. So the brilliant mom that I am had Madison get a pen and piece of paper and her create this…



Translation, for those that do not speak/read Madison – NO BrOtHErS ALLOWEd. And a picture of mean scary mom, because, she told me, sometime I am mean. She felt better. Better, until she saw the Boys retaliation sign…

NO 5 YEAR OLDS ALLOWED IN DIS (yes it said dis) ROOM. She was crushed. She told me her day was ruined and that she had the meanest brothers in the whole world. I gave her lots hugs and kisses and tried to explain that her brothers must have thought her sign was cool to make one for their door. She was still crushed.

Maybe 15 minutes later, she has me follow her to look at “something”. I followed her back to her brothers’ closed do to find that she had crossed off the 5 on the Boys sign and fixed it with a 12 (the age of both Boys). She was so please with herself. She opened the door to let the boys know that they were not allowed in their room anymore, and walked away satisfied.

I had to go to work, but I heard the war is continuing while I am away. I couldn’t wait to get home and see the newest creations. I had been texted that Madison’s includes that she is 5 years old and that she is a princess, both completely true. I don’t know if the Boys are still tormenting Madison playing along or not.

Edit: I came home to several new signs. My favorite: REMEMBER I AM ONLY 5 YRS OLD. I say that to her brothers all the time.

Mother's Day

For Mother's Day this year J and the kids got me a Kodak Play Sport. I love it. I love the videos of the kids. I love that we can take it in the pool. I hoping this summer I will get videos of Madison learning to swim. I hoping Austin warms up to having videos made of him.

One of the best things have been Madison "sneaking" it to her room and make videos were no one is watching her. Her real thoughts. I love going thru the videos and find her singing, or talking about her day. J has warned me several times that if she drops it I won't be able to take it to the pool because it could break the seals. After finding this (posted below) video I told him it is worth the risk. She can "sneak" the camera when ever she wants.
I cried watching this one.

Family Pictures

Griffin Grand Kids

Happy Easter

I never got around to posting about Easter. At very least I want to post the pictures. So here goes...

Top - Austin, Luke, and Madison
Bottom - Keira, Cameron, and Kailey

My Beautiful nieces Keira and Kailey

Austin and Madison

My handsome nephews Cameron and Luke

Fancy girls - Kailey, Madison, and Keira

Me and my 2 awesome kids.

(one of)My beautiful sister(s) Angie and her adorable boys Luke and Cameron

Nothing says Easter like playing in the sandbox in beautiful dresses and cute Easter clothes.

Blowing bubbles, notice the nail polish matches her dress, we got lucky with that one.

Madison decided on a couple games to play with her cousins - this is "the egg and spoon race".

and this is after Austin won the race. She was a little disappointed.

She wasn't too happy with the Easter Egg Hunt either, one of her cousins beat her to one of the eggs.

Kailey

Keira - I wish I had taken a picture of the egg Keira painted, it was a beautiful purple/black swirl.

Madison coloring eggs.

My awesome son Austin; who thinks he is getting too old for the games and egg hunts, but stills plays along to for me. (he won the egg and spoon race - and gave his prize to his little cousin Kailey)

Madison - My baby is turning into such a beautiful little girl. I can't believe how fast she is growing up. Pictures like this make me want to hold on to her even tighter.

Pierced

Madison has been asking to get her ears pierced for about a year. After this last MRI we decided that it was time, and today was the day. She did great. She was a little hesitant at first; she said that she still wanted to get them done but that she was nervous. One of the girls that did the piercing explained to Madison that it would be really quick and that it would not hurt. Madison asked if she could sit in my lap. Once that was ok'd she was ready to go.

lining up the dots

my brave little one, I had to ask her to hold my hands, I think I was more nervous then she was

1, 2, 3,...

go.

She has earrings.

One Word Wednesday

Heroes

CURED

Today Madison had an appointment with Dr M (neurosurgeon). Madison's scans are clear, we guessed this already. There was a lot of other discussions about Dr M's move to Banner Desert, that he wanted his focus to be on the patient and not big business. Some where in this conversation Dr M said that he feels Madison is CURED. That we will continue cautiously, watch for signs, and continue 6 month scans for now... but he feels that the tumor is gone FOR GOOD. Dr M talked about lifting some of the limitaions that have been placed on Madison. For now, no tackle football, wrestling, gymnastics, or trampolines. Other then that we need to start letting her be a 5 year old girl. She needs to go to school, and play without limitations. I can't imagine a better day then today. We are incredibly blessed. So, I'm going to go enjoy time with my little angel's on earth.

Snake and Lizards

The bribe reward for Madison doing a great job during her MRI this week was a trip to Az Reptile. Last week, J stopped by there creepy crawly shop and asked if he could bring Madison in to hold a snake. They said to go ahead and bring her in. So......

Snake handling she did. And she loved it. (Madison has fallen in love with Bindi the Jungle Girl and all the reptiles Bindi gets to hold. She asked if she can have a snake in her room to scare her cousins play with.) I hear the guys at AZ Reptile were amazing, I didn't get to go. (dang that work thing). But J let me know that they were amazing. The were very patient with my princess. They let her hold several snakes, and lizards, and 2 of the cutest turtles that I hear grow quite large, like eat my midsize dog big (not that i think they would eat my dog but they get that big).

These are a few a the picture J took for me since I could not be there with them (sniff sniff). As you can see, they had a great time, she was in heaven and didn't want to leave. A big thank you to Az Reptile for giving my daughter her Bindi the Jungle Girl moment.

*** a little side note - the guys at AZ Reptile (blue shirt and tattoos in several pictures) didn't know that the visit to there shop was our again bribe reward for Madison going good in her MRI, they did not know that she had brain cancer, they didn't do this for any other reason then they are amazing people. Again thank you AZ Reptile for making Madison (and J's) day. There is a special place for people like you guys. ***

ups and downs

Last night Madison asked me if I remember my pictures (MRI) when I was a little girl like her. I told her I didn't have pictures like she does. So she asked about Austin's. I told her he didn't have them either. She doesn't understand why she has to have pictures.I really don't know how to explain it to her. I don't know how to explain why she has cancer when I don't understand it myself.

Madison did really well with the mask today

She was scared

She asked for a few more minutes before they put the mask over her face, several times (once for a quick kiss from me, that brought tears to several eyes)

She didn't want to lay and be held down, didn't want to sit a lap, she wanted to stand. Stand?

So I stood right beside her, as she stood and took little breaths thru the mask, waiting for her to collapse - hoping to catch her before she fell

No tears this time - at least none from Madison

The sedation was different - they gave her gas and a sleeping medication to help ease her awake

I asked to have her IV taken out before she woke up. one less thing for her to freak out about. she has had several MRI's with sedation and has always been ok

It took much longer for her to wake up this time, and when she did, she was sick

Pale and nauseous

We were release with a large bucket for the drive home (luckily it went unused)

When we got home Madison and I lay in my bed and slept the day away

Thankfully she woke up this afternoon feeling much better

J reviewed the scans and says they are clear. The official read is next week

I'm glad today is over, it sucks that Madison has to go through these

Today all the kids had dentist appointments. Madison was pretty brave this time. She stated her conditions as we were walking back to the chair. No boy doctor (her dentist is a "boy"), she wanted orange toothpaste, sun glasses before they turned the light on in her eyes, and she did not want them to tip the chair too far back. Once the dental hygienist agreed to her terms, then she would climb into the chair. She did great. I was concerned about her first permanent tooth taking it's time coming in, it’s been 5 months and it’s only about half way in. We were warned when she underwent her 30 radiation treatments as a 2 year old, that the radiation could cause her permanent teeth not to develop (seriously? what else does my princess have to go thru?). Dr M explained that it is normal for big girl teeth to take their time growing in, he also showed me the x-rays that her big girl teeth had developed and he thinks she will have another loose baby tooth soon, that another big girl tooth wants to come in. Madison favorite part is the water and the suction straw, she giggled each time she put her lips around the straw. Austin did great. I didn’t go back with him because well, he’s 12 and doesn’t need mom holding his hand. He got a clean check up. This kid did not get my teeth; he has only had one cavity ever. Zac had 4 cavities, all in-between his teeth. I think we need to focus on flossing with him.

Madison's MRI has finally been approved and is scheduled for Tuesday March 30. In just 12 days. Madison says that she will be a brave girl this time; she just doesn't want to be held down. So, I made a deal that I would help them do "the mask" (sedation) with her sitting up. Let just hope the doctors will agree to my deal or I am in trouble.

Time to get my princess ready for bed, i just have to break her away from Nick Jr. Wish me luck

xoxo
me

park day

 

Today we took Madison and Austin to the park
We had a Subway picnic
Rode scooters
Played at the playground
Climbed the grass hill
and took lots of pictures

I think the kids had fun.

Scheduling

Well, I have Madison's PCH Neuro-Oncology appointment scheduled for April 6. I am still working on getting approval for the MRI, but that usually is the week before the PCH appointment, so late March or early April. I expect everything is good. Madison is doing great, no "signs" anything is wrong. I will stay positive. Prayers, Positive thoughts, (however you choose to put it) are always welcome.

xoxo
me