All Blog Posts (842)

New School Section of CureSearch.org!

Visit the New School Section of CureSearch.org!  Whether you are a parent, teacher, or principal, this new section contains practical information and suggestions for ensuring that children with cancer continue their education. Read more here.

Added by Bonnie Douglas on January 25, 2012 at 11:13am — No Comments

All about My Hero!

Justin Alvarez is a very special little boy. He was born to a loving family on January 21, 2001. Justin’s mommy is a breast cancer survivor, so this family is no stranger to the “C” word. However, we were shocked to say the least on February 4th, 2009 when the doctor told us that Justin had a baseball size tumor in the left side of his brain. It was like our happy little family was hit by a freight train and then a week later hit again when the biopsy came back as a rare…

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Added by Stacy Morris on January 24, 2012 at 10:16am — No Comments

My Buddy!

Justin Alvarez is a very special little boy. He was born to a loving family on January 21, 2001. Justin’s mommy is a breast cancer survivor, so this family is no stranger to the “C” word. However, we were shocked to say the least on February 4th, 2009 when the doctor told us that Justin had a baseball size tumor in the left side of his brain. It was like our happy little family was hit by a freight train and then a week later hit again when the biopsy came back as a rare…

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Added by Stacy Morris on January 24, 2012 at 10:14am — No Comments

WHY





Why?

It has been over 5 years since my 9 yr old daughter was first diagnosed with cancer (Rhabdomyosarcoma), and never once did I think “why Ishani”. The truth is it can be any of our kids. 36 kids are diagnosed each day in the U.S. 1 in 300 kids are diagnosed before the age of 19. So why do we think it will NOT be our kid?

But I have repeatedly asked “why…

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Added by Dash Wallooppillai on January 21, 2012 at 9:30pm — No Comments

Max's Love Project is offering Twilight Turtles to SuperKids fighting cancer

Dear PAC2,

My little guy Max, almost five yrs old, is fighting brain cancer. He's doing pretty well so far and we've been fortunate in a million ways. I'm writing because we have something to share with other families. When we got home from the hospital post-surgery and pre-chemo, there was a little toy that made a huge difference in his life. This toy is Cloud B's Twilight Turtle, what Max calls his healing turtle (named Max, of course). The company…

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Added by Audra DiPadova Wilford on January 19, 2012 at 11:03am — No Comments

Children’s Oncology Group Family Handbook now Available!

CureSearch for Children's Cancer and the Children’s Oncology Group are proud to announce that the Children’s Oncology Group’s Family Handbook for Children with Cancer, Second Edition is now available, free of charge, at your local COG hospital.  This newly-updated resource provides parents and families with information about children’s cancer and the many tests, procedures, and treatments involved in caring for a child with cancer.

 …

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Added by Bonnie Douglas on January 17, 2012 at 9:29am — 1 Comment

Good-Bye Angel

JANUARY 17 2012- BEDTIME PRAYERS WITH RHEAGEN...

 

now i lay me down to sleep, i pray the lord my soul to keep.

If I die before I wake I pray the lord my soul to take.

The night before Rheagen died it was just the two of us at seattle childrens hospital, Ryan had taken the boys to his parents house for a couple days so we could be with Rheagen together for the last moments of his life.The doctor expected him to pass 3 days ago but here he was hanging on for life…

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Added by brandie marie robinson on January 17, 2012 at 7:00am — No Comments

Bone Age

Claire went to the endocrinologist for the first time since she left the hospital today. They said shes still not ready to wean down anymore yet, and they noticed all the teeth she has.  They ordered an Xray to check her bone age. They did an Xray of her hand and knee to look at the growth plates.  You can read below to see why.…

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Added by Ashley Onorato on January 9, 2012 at 5:30pm — No Comments

Education

Educate yourself on adrenal cancer, For those who know Claire I'm sure you wish you wouldn't have read this though

 

From emedicine.com (AC is adrenal cancer)

Patients with functional AC may have a better prognosis because they present earlier, unlike patients with nonfunctional variants, who invariably present…

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Added by Ashley Onorato on January 8, 2012 at 11:50pm — No Comments

Set back

Yesterday (1-6-12) was the third day Claires dose was set at every 8 hours instead of every 8 hours.  She has been doing very well however, yesterday my mom noticed her starting to stink again and had to give her a bath in the middle of the day. 

I dont know if this is a step back since her body odor has been gone, or a step forward meaning her other gland is working...

 

Its depressing.

Added by Ashley Onorato on January 7, 2012 at 2:53pm — No Comments

going in with 3 coming out with 2

  Ryan came and picked me up, we dropped the boys off at Ryan's mom and dad's house so we could spend this time together with rheagen, even if it is in the hospital it's the only place i want to be right now, When i walked in Rheagen was in the bed and leslie was sitting in the lounge chair reading him. Rheagen is sooo swollen, the tumor must have doubled in size because his chest is all puffed out. he has this terrible cough and is in so much pain that he cant even get up to go potty. It…

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Added by brandie marie robinson on January 6, 2012 at 7:00am — No Comments

Jay’s New Year’s Resolutions

It’s always fun at this time of year to hear and read about everyone’s New Year’s resolutions. Whether they be focused on healthier living (anyone else see an increase in people at your gym this week?), wiser spending or more whimsical in nature, they have the ability to inspire us to try and do better and be better.

In addition to some loftier…

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Added by Alex's Lemonade Stand Foundation on January 5, 2012 at 4:38pm — No Comments

Accepting denial?

Accepting denial?  I realized a few days ago I am in denial.  This has nothing to do with Claires progress but perhaps it might help other parents.  My husband and myself still have yet had time to stop and comprehend or grieve or even cry about anything thats happened. Day 1 was an immediate trip to the hospital. Day 2 was surgery and Day 3 on was take care of claire.  We haven't had a moment to stop and say My daughter has cancer.... my daughters having surgery...my daughter.. Every moment…

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Added by Ashley Onorato on January 4, 2012 at 7:56pm — No Comments

12-30-11 - dose change

12-30-11 (Friday) Her oral steroid changed from 5mg Q6hrs to 4 mg q 6 hrs.  Everything seemed to go pretty well no noticable withdrawl signs.  Shes even started to take an hour nap during the day.  Sunday I noticed after she had been sweating all day long that her body oder was gone.  I ran and told my husband right away. Something is happening!! Still today 1-4-12, her body odor is still gone. I hope this means we are moving forward…

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Added by Ashley Onorato on January 4, 2012 at 7:30pm — No Comments

Worst Possible Birthday

January 4th 2012

Today is my 29th birthday, we had planned on taking rheagen to a little tree house retreat just he and ryan and i so we can spend so time alone without any distractions. He doesnt want anyone else around, not even his brothers. But the pain is becoming more and more intense asn the hours pass by and we cant take him anywhere like this. Ryan took him to the hospital today to have his medication adjusted but the doctor wants to keep him at the hospital so he can have…

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Added by brandie marie robinson on January 4, 2012 at 7:00am — No Comments

Worst Possible Birthday

January 4th 2012

Today is my 29th birthday, we had planned on taking rheagen to a little tree house retreat just he and ryan and i so we can spend so time alone without any distractions. He doesnt want anyone else around, not even his brothers. But the pain is becoming more and more intense asn the hours pass by and we cant take him anywhere like this. Ryan took him to the hospital today to have his medication adjusted but the doctor wants to keep him at the hospital so he can have…

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Added by brandie marie robinson on January 4, 2012 at 7:00am — No Comments

A New Year

January 2nd 2012

Rheagen's pain is so terrible, last night he couldnt sleep at all, every few minutes he woke up screaming about a headache, "my eye, my eye, my eye" I hate seeing him like this. Ryan and i both paniced a couple times when we couldnt tell if he was breathing or not, that's when it hit me, he's going to stop breathing and there is nothing we can do about it. he loves when i run my fingers through his hair massaging his scalp. He has to wear a blind fold because any…

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Added by brandie marie robinson on January 2, 2012 at 6:30am — No Comments

12-23-11 Log

05:00am - 3 cc meds

08:00am - 3 Tbsp cereal

09:00 am - 4 oz formula

11:00am - 3 cc meds

12:00pm - 3oz baby food

01:45pm - 3 oz formula

03:00 - 4 oz formula

04:45 pm - 3 cc steroid

07:30pm - 2 bowls cereal

11:15pm - 3 cc meds

 

So far Claire is doing great on 2mg/mL give 3 mL Q 6 hrs

Added by Ashley Onorato on December 29, 2011 at 8:43pm — No Comments

12-22-11 Log **

Dose change

01:00am - body temp 96.2 F under arm

02:00am - body temp 94.9 F under arm (was actually 93.9 but you add a degree since its the armpit)…

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Added by Ashley Onorato on December 29, 2011 at 8:31pm — No Comments

12-??-11 Log

Its hard to keep an accurate log, I know its important incase something does happen you have a record of what you did that day

Not sure what day this is..

 

2:15am - Body temp 95.3 F

2:30am - gave 3cc Steroid

10:00am - 3cc Steroid

11:30am - Zantac dose

 

04:10pm - Tylenol w/3oz baby food / Body temp 96 F

06:00pm - 3cc steroid

07:45pm - 3 1/2 baby food

10:45pm - 6oz formula w/ rice &…

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Added by Ashley Onorato on December 29, 2011 at 8:00pm — No Comments

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