What is this world coming to when it is nearly a month between updates and pictures are only courtesy of my iPhone?! I MUST get better at this!
Charli was a rockstar for her tests at Childrens earlier this month!
On one of the few nice days Charli spent a long time in the "house" on the swing set. She named the area the "love club"!
a VERY excited Charli to go to her first sleepover! These girls had a great time, stayed up until after 1:00 if I remember correctly! What a fun experience!
This little boy cannot wait until spring gets here, though he has pretty much decided (and I might have to agree) that spring will never come and Summer will be next!
we love a good mustache around here! Charli said we were Mario and Luigi!
Just a regular night at our house! Not sure who won...but since their butts are now online, I guess it was me! ;-)
I'm a lucky girl! I posted on facebook last week a picture of no-bake cookies to my sister stating that it was a rough day and that she could make me cookies! She declined but a few hours later I had a ring at my door. My childhood friend, Missy, was standing at my door with a plate full of (amazing) cookies! Made my week! A bit later I got back on facebook to brag about her and my sister-in-law (Amanda) had made me some too! She delivered them the next day, but my 'wonderful' (or less than wonderful in this case) husband at them all...I had a crumb two days later!
GREAT kite weather!
In an effort to gain two new pets Charli posted 6 posters around her room that all stated "Hamstre and Gold fishs" (Hamster & Goldfish). Not sure I know what she is getting at!
I remember making this when I was little...pretty sure I was older than 6 AND I am pretty sure I wrote boys names and dream jobs on the inside. I know Charli will get there eventually, until then I will treasure her messages! "I love God and Jeesis To" and "I hope you have a grat day".
While tucking her in last night I mentioned that her room was so quiet. I asked Charli if she wanted her radio back on to which she replied "No mom, that is when I talk to God". Melted my heart.
I hope I update before Memorial Day, but I can't make any promises based on past behavior.
Just in case ..rock your summer ya'll!
Hi, I am searching the internet for some answers and I found your sites and your family. My daughter is 2 yrs old and she is almost on her 4th cycle of intermediate risk chemo. It is on her spine. I am wondering ablot your daughter, I know she had 4 cycles and it was on her spine as well. The doctors tell me that they still expect to see it on MRI, but there is not enough room to go back in for another biopsy. Did your daughters ever go away or is it like scar tissue? I also made a site for my daughter, any information you can give me would be an immense help to me. They call my daughter a "mystery". My daughter's site is www.Londonsstoryneuroblastomaandlch.com My name is Kerri, my daughter's name is London. Thank you so much and GOD Bless.
ReplyDeleteHi, thank you for getting back to me. We are from Rhode Island. All of London's test miraculously came back negative, all but the MRI. The MIBG scan neg, the 2nd CT scan neg, the bone scan neg. The only thing that shows it is the MRI. Her pathology on her tumor was "favorable" no MYCN amplication, right amount of chromosomes,etc. So even though she was older than the 18 month cut off, they are treating her with intermediate risk chemo. Cycle 4 is next week, then we talk about what to do next. They expect her MRI to show it(hopefully scar tissue). There is no room to go back in for a biopsy to check if its inactive. I am in the deciding phase of should we stop after 4 cycles or go to 8? London is not a text book case-I'm told. I was told that having the "favorable" this should never have went to her spine. My husband and I are at a loss, and don't want to make the wrong choice. I find your story of your dtr and your family very helpful and brings a lot of hope to us. Thankyou again. Kerri Hinz (mom of London)
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