I now believe that if your child wishes for a trip to Disney the address to this forum should be included with the other MAW info, it would have been awesome to have this info 8 months ago! I have been lurking here for about a week, I have finally decided to give it a try with our PTR.
A little background info on the wish princess. Ona (on-a), also known as Princess Ona, Princess Barbie Ona, Miss Ona and stinky, now 8 years old. Aside from being delivered by emergency c-section because of fetal distress, Ona was born a happy healthy chunky monkey. Other than some reflux and some allergy induced asthma as a toddler she has been relatively healthy.
Ona enjoys all things girlie, anything artistic, animals and travel.
This gets a bit lengthy but I always feel like I am leaving important info out!
Just over a year ago when Ona was 7 she started complaining of a sore throat, being tired all the time and throwing up, a trip to acute care found that she had strep. Two months, a trip to a pediatrician and the ER and one terrifying call from Ona's summer camp, I was on my way back to the ER and this time I was not leaving without an answer.
Ona's summer camp had called and told me that they found Ona sitting in the corner of the room curled up in a ball, when they tried to talk to her she would only respond by crying or "I dont know" they had helped her stand twice and she immediately collapsed. I picked her up and carried her into the ER, after explaining everything to the doctor, he started listing tests and scans that they would perform to find out what was going on. I started feeling better, we would have answers, I only felt better for about 20 min when the doctor showed me the CT scan. Right smack dab in the middle of a grey picture that they told me was the inside of my daughters head was a very large something that i knew shouldn't be there. The most emergent issue was the hydrocephalus the mass was causing as it was blocking CSF (spinal fluid) from draining. Ona was moved to a procedure room sedated and a drain tube was placed to remove excess fluid, and they prepared to move her to the PICU in Sanford Children's Castle of Care. Family members were called and began arriving at the hospital, we wouldn't really get more answers until tomorrow.
The next day we finally met with a neurosurgeon who explained that Ona's mass was most likely a malignant tumor called a medulloblastoma, that sat in the 4th ventricle right at the base of her spinal cord. If not removed surgically she would only have a few weeks, oh yeah and it was the size of a baseball! Dr. Gust also recommended we seek 2nd opinion if we felt the need and he recommended we speak with another neurosurgeon at the hospital, Dr. Asfora who is ranked top 5 nationally. After speaking with both docs we wanted them both but if we could only have one we wanted Dr. A, on June 9th Ona went into surgery and we were fortunate enough to have Dr. G scrub in and assist between his procedures, in a way we got both. Dr. A told us that she did well and he thinks he got it all but there was some bleeding so the follow up CT the next day will help us to be sure. That night Ona was minimally conscious, she fought the breathing and other tubes, and when I didn't produce the ice cream she demanded she kicked me out of the room!
After the CT the Dr told us they saw a small amount of tumor that he suggested be removed, and so it was, we received a similar post op form the Dr and had a similar night with Ona getting frustrated with us and the tubes and me getting kicked out of the room again.
Two days later Ona is minus a feeding and breathing tube and down to only two hy-vee's as Ona calls them, I am beginning to recognize my child under all that medical stuff and partially shaved head.
Sunday June 19th, 12 days after diagnosis and only 9 days after her second brain surgery, Ona is recovering so well that she is released, she will continue with therapies daily for months to recover her balance, strength and coordination. The other big issue is that since surgery she stopped attempting to speak or even mouth words, this is a common side affect from brain surgery called muteness where the child knows what to say but they are unable to actually communicate, it is most often temporary we are told. I didn't really believe them and had convinced myself that she was just being difficult. 2 weeks after surgery I hear a raspy gravely voice say "he smells like rotten strawberries!" it was Ona talking about our stinky cat that has gas issues, and it was the most beautiful thing I have ever herd.
Mid July Ona begins radiation treatments on the tomo machine, has surgery to install her power port and begins chemo. Over the next 8 weeks she has 31 radiation treatments, and 6 doses of chemo, we spend a week in the hospital because of side affects from treatment, her hair falls out, she looses 8 lbs, has to have not one but two feeding tubes placed with in a day of each other because shortly after an attempt to feed the tube comes up with everything else, she appears on the news 2times and there is talk of Ona being in a hospital ad campaign. At some point in time during the summer MAW contacts us because Dr. A nominated her for a wish, upon hearing this news Grandpa freaks out because he thinks only terminal cases are approved for wishes. The wish team comes and Ona wishes to go to Disney with her family, timeline is unknown for months while we figure out how treatment goes.
We get a couple week break from treatments, Ona starts 2nd grade and they film Ona and I for tv and radio commercials and Ona has a mini photo shoot for print ads. In September Ona has her first MRI since treatment began Ona it is clear....no tumor. What the doc calls maintenance chemo begins in October, and the next 7 months consist of one week in the hospital for chemo, a few good days 2 bad weeks where she would get multiple transfusions of red blood cells, platelets and shots at home from mom. A good week and then we start again. Ona had her final chemo treatment 3/23/12 and all 3 MRIs since September have been clear!
Originally we were supposed to leave for FL on 4/15 which means that We should be enjoying 80 degree weather instead of here in South Dakota freezing out toes off! You learn quickly that with treatments they don't always go as you would like and the schedule goes out the window. We are now set to leave 5/17, which I realize is only 30 days from today, I thought I had most things figured out until I went searching for wish stories from the families and found the wish trippers thread. I am now in a OMG OMG OMG OMG mindset, as I read other PTR and tell myself repeatedly I didn't think of that!
A little background info on the wish princess. Ona (on-a), also known as Princess Ona, Princess Barbie Ona, Miss Ona and stinky, now 8 years old. Aside from being delivered by emergency c-section because of fetal distress, Ona was born a happy healthy chunky monkey. Other than some reflux and some allergy induced asthma as a toddler she has been relatively healthy.
Ona enjoys all things girlie, anything artistic, animals and travel.
This gets a bit lengthy but I always feel like I am leaving important info out!
Just over a year ago when Ona was 7 she started complaining of a sore throat, being tired all the time and throwing up, a trip to acute care found that she had strep. Two months, a trip to a pediatrician and the ER and one terrifying call from Ona's summer camp, I was on my way back to the ER and this time I was not leaving without an answer.
Ona's summer camp had called and told me that they found Ona sitting in the corner of the room curled up in a ball, when they tried to talk to her she would only respond by crying or "I dont know" they had helped her stand twice and she immediately collapsed. I picked her up and carried her into the ER, after explaining everything to the doctor, he started listing tests and scans that they would perform to find out what was going on. I started feeling better, we would have answers, I only felt better for about 20 min when the doctor showed me the CT scan. Right smack dab in the middle of a grey picture that they told me was the inside of my daughters head was a very large something that i knew shouldn't be there. The most emergent issue was the hydrocephalus the mass was causing as it was blocking CSF (spinal fluid) from draining. Ona was moved to a procedure room sedated and a drain tube was placed to remove excess fluid, and they prepared to move her to the PICU in Sanford Children's Castle of Care. Family members were called and began arriving at the hospital, we wouldn't really get more answers until tomorrow.
The next day we finally met with a neurosurgeon who explained that Ona's mass was most likely a malignant tumor called a medulloblastoma, that sat in the 4th ventricle right at the base of her spinal cord. If not removed surgically she would only have a few weeks, oh yeah and it was the size of a baseball! Dr. Gust also recommended we seek 2nd opinion if we felt the need and he recommended we speak with another neurosurgeon at the hospital, Dr. Asfora who is ranked top 5 nationally. After speaking with both docs we wanted them both but if we could only have one we wanted Dr. A, on June 9th Ona went into surgery and we were fortunate enough to have Dr. G scrub in and assist between his procedures, in a way we got both. Dr. A told us that she did well and he thinks he got it all but there was some bleeding so the follow up CT the next day will help us to be sure. That night Ona was minimally conscious, she fought the breathing and other tubes, and when I didn't produce the ice cream she demanded she kicked me out of the room!
After the CT the Dr told us they saw a small amount of tumor that he suggested be removed, and so it was, we received a similar post op form the Dr and had a similar night with Ona getting frustrated with us and the tubes and me getting kicked out of the room again.
Two days later Ona is minus a feeding and breathing tube and down to only two hy-vee's as Ona calls them, I am beginning to recognize my child under all that medical stuff and partially shaved head.
Sunday June 19th, 12 days after diagnosis and only 9 days after her second brain surgery, Ona is recovering so well that she is released, she will continue with therapies daily for months to recover her balance, strength and coordination. The other big issue is that since surgery she stopped attempting to speak or even mouth words, this is a common side affect from brain surgery called muteness where the child knows what to say but they are unable to actually communicate, it is most often temporary we are told. I didn't really believe them and had convinced myself that she was just being difficult. 2 weeks after surgery I hear a raspy gravely voice say "he smells like rotten strawberries!" it was Ona talking about our stinky cat that has gas issues, and it was the most beautiful thing I have ever herd.
Mid July Ona begins radiation treatments on the tomo machine, has surgery to install her power port and begins chemo. Over the next 8 weeks she has 31 radiation treatments, and 6 doses of chemo, we spend a week in the hospital because of side affects from treatment, her hair falls out, she looses 8 lbs, has to have not one but two feeding tubes placed with in a day of each other because shortly after an attempt to feed the tube comes up with everything else, she appears on the news 2times and there is talk of Ona being in a hospital ad campaign. At some point in time during the summer MAW contacts us because Dr. A nominated her for a wish, upon hearing this news Grandpa freaks out because he thinks only terminal cases are approved for wishes. The wish team comes and Ona wishes to go to Disney with her family, timeline is unknown for months while we figure out how treatment goes.
We get a couple week break from treatments, Ona starts 2nd grade and they film Ona and I for tv and radio commercials and Ona has a mini photo shoot for print ads. In September Ona has her first MRI since treatment began Ona it is clear....no tumor. What the doc calls maintenance chemo begins in October, and the next 7 months consist of one week in the hospital for chemo, a few good days 2 bad weeks where she would get multiple transfusions of red blood cells, platelets and shots at home from mom. A good week and then we start again. Ona had her final chemo treatment 3/23/12 and all 3 MRIs since September have been clear!
Originally we were supposed to leave for FL on 4/15 which means that We should be enjoying 80 degree weather instead of here in South Dakota freezing out toes off! You learn quickly that with treatments they don't always go as you would like and the schedule goes out the window. We are now set to leave 5/17, which I realize is only 30 days from today, I thought I had most things figured out until I went searching for wish stories from the families and found the wish trippers thread. I am now in a OMG OMG OMG OMG mindset, as I read other PTR and tell myself repeatedly I didn't think of that!
king up!
for the limo 
for the time we are not morning people
that we can't just go now but she has missed sooooooo much school. Jaidn we will know her must do's when she sees them which I can't imagine would be to far off from Ona's!
