Ivee is doing well. We are still concerned about gagging/heaving and swelling in the back of her head. This morning, her little eyes are bloodshot from it! Her daddy wants me to get her in with the neurosurgeon here in Mobile (I don't really want to drive to Memphis, but will if I have too). The swelling seemed to have gone down, but is worse again this weekend. Since our Make a wish trip is next week, I would hate for anything to go wrong while we are in Florida. (We are all sooooo looking forward to going. It is a much needed break from reality and work.) She is suffering from sinus issues as well, which is what we are hoping is the cause of the gagging/heaving. She is on an antibiotic to help get rid of any possible sinusitis, but so far she is still having issues. She has also complained of back pain on and off, nothing consistent, but as a momma of a kid of brain cancer (that can also go to the spine) I am concerned and aware of every complaint. We are in the process of trying to potty train, but this is very difficult for Ivee. She has very little to no warning that she has to go tee-tee, so this will be a going potty based on habit more than based on sensation.
So, please lift up a prayer that Ivee's head swelling is still just trauma from another dosing of radiation, that the back pain is nothing and that this antibiotic takes care of what is causing her heaving. If the heaving has anything to do with her paraesophageal hernia that means another set of test and visits to the gastro doc, whom I don't really care for!
"Heal me, O Lord, and I will be healed. Save me, and I will be saved, for you are the one I praise!!!"
About Me
- Hope Foley
- Born in Atmore, United States
- Wife & Mommy. I have a wonderful husband who loves me deeply and three great kids. I believe in my Creator who guides me everyday. My favorite interest are stage/theatre, music/singing, antiques and art.
Monday, June 06, 2011
Tuesday, May 31, 2011
12 more days...Florida isn't far away
Hold on, this is a long post!
We are all excited about our trip to Orlando and Disney in 12 days, but I am a bit anxious as well! Ivee is still having gagging/heaving in the mornings, and sometimes throughout the day. She also still has the fluid build-up in the back of her head. She still shows no signs of shunt malfunction, but I stay concerned! I believe the gagging/heaving is stemming from constant drainage, and since she has a difficult time with swallowing, it is leading to the issues. Unfortunately, Ivee has a paraesophageal hernia, and the heaving really does a number on her little tummy that has been through the horrors of a nissen fundoplication pyloroplasty surgery. She also has been complaining on and off about her back hurting, and though I'm not overly concerned, it's always there in my mind. (Since her cancer can grow in the spine as well!) I am going to take her to her pediatrician today or tomorrow, I hope, to try to get her some relief from the drainage issues before we take her on her MAW trip.
On a good note, she is doing well! She is walking with the walker better, wanting to walk more, she has finally gained weight on a constant bases (there was a whole year + where she didn't grow at all in weight or height), and she is learning how to potty train. The potty training is taking effort on mommy and everyone's part. She doesn't have a great "warning" mechanism, so we ask her all the time, and many time she concentrates and tries to go. She has a few accidents here and there, but we all know this is going to be a long work in progress, like everything else in Ivee's life.
A funny Ivee story from the other night. She doesn't like to eat by mouth, and struggles with doing so, but sometimes she asked to eat. 2 night ago she said, "I'm Hungry." Here is the conversation that transpired.
I asked, "What do you want?"
"Chocolate pudding."
I thought to myself, "Great, I know we probably don't have any in the fridge." I looked and all I could find in there was vanilla. So, I held it out and showed her and said, "Ivee, all I have is vanilla."
She gingerly sang, "Chooocooolate."
I gingerly returned, "We don't have chocolate, all I have is vanilla. Is that okay."
She shook her head telling me no.
I said then, "Ivee, I don't have chocolate."
Then she cocked that little head to the side and said Oh, so sweetly, "Go get some!"
Well, after I stopped laughing, I found some mix in the pantry and made it myself! She manage to take 5 small bites...baby steps!
Today, our St. Jude friend, Brandon, has his MRI. Praying for great results for him and praying that God has shrunk or completely killed all of Brandon's tumor! Many other St. Jude friends are returning for treatments of chemo soon. Praying for Haley, Lucy, Justin and Allyson!
We return to Memphis on June 24th for Ivee's check up and MRI. Praying for NERD (No Evidence of Recurrent Disease)!!!
On a final note, this is copied from a friends CB site. If you can find the time, please help to make our lawmakers aware! I will typing my own letter about Ivee and making the government aware of my child!!!
More funding is needed for childhood cancer research. Funding was cut this year by 10% when the NCI (National Cancer Institute) budget was cut by the federal government. NCI funds the COG (Children's Oncology Group) hospitals where over 90% of all children with cancer are treated. COG hospitals develop treatment protocols and carry out research important to development of new and innovative curative therapy. There is a way that you can help to urge your senator to increase funding for childhood cancer in the 2012 fiscal year. All you need to do is ask your senator to sign-onto the letter that has already been sent to their office by Senators Reed and Isakson. This letter is asking the Senate Appropriations Committee to fund the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008.
The Caroline Pryce Walker Conquer Childhood Cancer Act of 2008 was passed unanimously by the senate and appropriated 30 million dollars a year toward funding efforts for childhood cancer. The funding was for fiscal years 2009-2013. Even though the Act was passed unanimously the appropriated funds have never been allocated as promised. The Senate Appropriations Committee has never voted to fully give the allocated funds from the budget. In 2009 there was no funds allocated. In 2010 only 4 million was allocated but none went toward funding research. The 2011 allocations were difficult to find but might have been 10 million and I wasn't able to determine where the funding went.
How can you help to convince the Senate Appropriations Committee to fund the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008? By asking your senator to sign-onto the letter written by Senators Reed and Isakson. In your letter make sure that you state that you are a constituent. State why you are supporting funding for pediatric cancer. Reference the letter written by Senators Reed and Isakson. You can attach the 2 page document if possible in your email. I posted the link to the PDF file below. Give your address and ask to be informed of their decision.
There isn't a lot of time since this letter needs to be signed by your senator by June 8th.
If you are reading this then I know you have an interest in finding a cure for childhood cancer. I have sent the letter below to both my senators today. Feel free to use parts of my letter to send to your senators. I read a blog today that said in 2010 more money was allocated by our government to help fish migrate than to find a cure for childhood cancer. Does that mean that our leaders think fish are more important than our children? Let our leaders know what is important by sending your senators a letter today.
My letter follows:
Senators Jack Reed (D-RI) and Johnny Isakson (R-GA) are spearheading a bi-partisan effort to get as many senators as possible to sign-onto a letter to the Senate Appropriations Committee requesting increased funding for pediatric cancer initiatives in Fiscal Year 2012. Your office has recently been sent a two-page correspondence from Senators Reed and Isakson. I would like to urge you, as my senator, to sign-onto this letter.
As a mother of a child who was diagnosed with cancer, I am frightfully aware that more funding is needed. My son, James, was diagnosed with a common form of childhood cancer, yet his odds of 3-year survival are listed at only 48%. There are many children with far worse odds than my son. If he had been diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) he would only have a 1% chance of survival. It is clear that advancement in treatment of childhood cancer is greatly needed. 2/3 of children who survive have long-term debilitating side effects from treatment. Some of those side effects are fatal. Cancer remains the leading cause of death by disease for children in America. Every year 15,000 children are diagnosed and more than 2,000 children lose their battle. As your constituent, I ask that you sign-onto this letter addressed to Chairman Harkin and Ranking member Shelby of the Appropriations Subcommittee for Labor, HHS, Education and Related agencies. The letter requests the appropriation of funds consistent with the goals of the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008 (P.L. 110-285). The letter requests funding from the 2012 fiscal year budget for childhood cancer research, surveillance, and educational programs. The NCI (National Cancer institute) consistently spends less than 5% of its annual budget on childhood cancer research and publicly states that more could be done on its website. The letter asks the appropriations committee to provide funds for NCI to increase research efforts for childhood cancer.
To sign, contact Kate Mevis with Senator Reed at Kate_Mevis@Reed.Senate.Gov or Tyler Thompson with Senator Isakson at Tyler_Thompson@Isakson.Senate.Gov by June 8th 2011.
You can download the PDF file of the letter at
http://curechildhoodcancer.ning.com/forum/attachment/download?id=2253982%3AUploadedFile%3A116271
Please inform me regarding your decision about signing the letter. My address is 3300 Morning Star Drive, Helena MT 59602.
I hope you can find time to help with this.
We are all excited about our trip to Orlando and Disney in 12 days, but I am a bit anxious as well! Ivee is still having gagging/heaving in the mornings, and sometimes throughout the day. She also still has the fluid build-up in the back of her head. She still shows no signs of shunt malfunction, but I stay concerned! I believe the gagging/heaving is stemming from constant drainage, and since she has a difficult time with swallowing, it is leading to the issues. Unfortunately, Ivee has a paraesophageal hernia, and the heaving really does a number on her little tummy that has been through the horrors of a nissen fundoplication pyloroplasty surgery. She also has been complaining on and off about her back hurting, and though I'm not overly concerned, it's always there in my mind. (Since her cancer can grow in the spine as well!) I am going to take her to her pediatrician today or tomorrow, I hope, to try to get her some relief from the drainage issues before we take her on her MAW trip.
On a good note, she is doing well! She is walking with the walker better, wanting to walk more, she has finally gained weight on a constant bases (there was a whole year + where she didn't grow at all in weight or height), and she is learning how to potty train. The potty training is taking effort on mommy and everyone's part. She doesn't have a great "warning" mechanism, so we ask her all the time, and many time she concentrates and tries to go. She has a few accidents here and there, but we all know this is going to be a long work in progress, like everything else in Ivee's life.
A funny Ivee story from the other night. She doesn't like to eat by mouth, and struggles with doing so, but sometimes she asked to eat. 2 night ago she said, "I'm Hungry." Here is the conversation that transpired.
I asked, "What do you want?"
"Chocolate pudding."
I thought to myself, "Great, I know we probably don't have any in the fridge." I looked and all I could find in there was vanilla. So, I held it out and showed her and said, "Ivee, all I have is vanilla."
She gingerly sang, "Chooocooolate."
I gingerly returned, "We don't have chocolate, all I have is vanilla. Is that okay."
She shook her head telling me no.
I said then, "Ivee, I don't have chocolate."
Then she cocked that little head to the side and said Oh, so sweetly, "Go get some!"
Well, after I stopped laughing, I found some mix in the pantry and made it myself! She manage to take 5 small bites...baby steps!
Today, our St. Jude friend, Brandon, has his MRI. Praying for great results for him and praying that God has shrunk or completely killed all of Brandon's tumor! Many other St. Jude friends are returning for treatments of chemo soon. Praying for Haley, Lucy, Justin and Allyson!
We return to Memphis on June 24th for Ivee's check up and MRI. Praying for NERD (No Evidence of Recurrent Disease)!!!
On a final note, this is copied from a friends CB site. If you can find the time, please help to make our lawmakers aware! I will typing my own letter about Ivee and making the government aware of my child!!!
More funding is needed for childhood cancer research. Funding was cut this year by 10% when the NCI (National Cancer Institute) budget was cut by the federal government. NCI funds the COG (Children's Oncology Group) hospitals where over 90% of all children with cancer are treated. COG hospitals develop treatment protocols and carry out research important to development of new and innovative curative therapy. There is a way that you can help to urge your senator to increase funding for childhood cancer in the 2012 fiscal year. All you need to do is ask your senator to sign-onto the letter that has already been sent to their office by Senators Reed and Isakson. This letter is asking the Senate Appropriations Committee to fund the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008.
The Caroline Pryce Walker Conquer Childhood Cancer Act of 2008 was passed unanimously by the senate and appropriated 30 million dollars a year toward funding efforts for childhood cancer. The funding was for fiscal years 2009-2013. Even though the Act was passed unanimously the appropriated funds have never been allocated as promised. The Senate Appropriations Committee has never voted to fully give the allocated funds from the budget. In 2009 there was no funds allocated. In 2010 only 4 million was allocated but none went toward funding research. The 2011 allocations were difficult to find but might have been 10 million and I wasn't able to determine where the funding went.
How can you help to convince the Senate Appropriations Committee to fund the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008? By asking your senator to sign-onto the letter written by Senators Reed and Isakson. In your letter make sure that you state that you are a constituent. State why you are supporting funding for pediatric cancer. Reference the letter written by Senators Reed and Isakson. You can attach the 2 page document if possible in your email. I posted the link to the PDF file below. Give your address and ask to be informed of their decision.
There isn't a lot of time since this letter needs to be signed by your senator by June 8th.
If you are reading this then I know you have an interest in finding a cure for childhood cancer. I have sent the letter below to both my senators today. Feel free to use parts of my letter to send to your senators. I read a blog today that said in 2010 more money was allocated by our government to help fish migrate than to find a cure for childhood cancer. Does that mean that our leaders think fish are more important than our children? Let our leaders know what is important by sending your senators a letter today.
My letter follows:
Senators Jack Reed (D-RI) and Johnny Isakson (R-GA) are spearheading a bi-partisan effort to get as many senators as possible to sign-onto a letter to the Senate Appropriations Committee requesting increased funding for pediatric cancer initiatives in Fiscal Year 2012. Your office has recently been sent a two-page correspondence from Senators Reed and Isakson. I would like to urge you, as my senator, to sign-onto this letter.
As a mother of a child who was diagnosed with cancer, I am frightfully aware that more funding is needed. My son, James, was diagnosed with a common form of childhood cancer, yet his odds of 3-year survival are listed at only 48%. There are many children with far worse odds than my son. If he had been diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) he would only have a 1% chance of survival. It is clear that advancement in treatment of childhood cancer is greatly needed. 2/3 of children who survive have long-term debilitating side effects from treatment. Some of those side effects are fatal. Cancer remains the leading cause of death by disease for children in America. Every year 15,000 children are diagnosed and more than 2,000 children lose their battle. As your constituent, I ask that you sign-onto this letter addressed to Chairman Harkin and Ranking member Shelby of the Appropriations Subcommittee for Labor, HHS, Education and Related agencies. The letter requests the appropriation of funds consistent with the goals of the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008 (P.L. 110-285). The letter requests funding from the 2012 fiscal year budget for childhood cancer research, surveillance, and educational programs. The NCI (National Cancer institute) consistently spends less than 5% of its annual budget on childhood cancer research and publicly states that more could be done on its website. The letter asks the appropriations committee to provide funds for NCI to increase research efforts for childhood cancer.
To sign, contact Kate Mevis with Senator Reed at Kate_Mevis@Reed.Senate.Gov or Tyler Thompson with Senator Isakson at Tyler_Thompson@Isakson.Senate.Gov by June 8th 2011.
You can download the PDF file of the letter at
http://curechildhoodcancer.ning.com/forum/attachment/download?id=2253982%3AUploadedFile%3A116271
Please inform me regarding your decision about signing the letter. My address is 3300 Morning Star Drive, Helena MT 59602.
I hope you can find time to help with this.
Sunday, May 08, 2011
Update from HOME>>>>>
Ending of a great Mother's Day and a sweet little girls 5th birthday!!! My baby is 5!!!!!!! I can't believe that she is already 5, but Oh God, how thankful I am that she is!!! We are getting settled back in at home, and I forgot how difficult it can be. I am a come home and get everything unpacked and everything needs to be in it's place kinda person..BUT...reality has a bite! After scrambling to get the kitchen cleared of our boxes from Memphis and cleaned up, I realized that I am not necessarily in need of being needed....but that I am definitely needed around here! My house is usually what I call "organized chaous" but not everything is where it should be, toilets were not clean and food was on the kitchen walls. LET ME STATE, however, I do not personally hold my husband responsible. My kids know to keep their rooms and bathrooms clean, they know how to clean up the kitchen and how to throw trash away. They just didn't have someone on their case about it, so they didn't care. Daddy would tell them to do things, but he works a fulltime job, planted the garden, made sure the dogs, cat, turtles and chickens didn't die, did feed my kids, and he can't always do the follow up to make sure they cleaned things the correct way. Just goes to show you that no matter what age they are, most kids really don't care about anything until they are the ones that pay for it or own it! My sister was a prime example of that...she was a slob as a kid, but now in her life or marriage, kids and working, she is a great mom/wife. So, my kids aren't perfect, and I will be back on the nag train this week. School will be out in 3 weeks, so I will make up for missing the Spring Cleaning around here. I will begin the unpacking process tomorrow when the kids go off to school. It will be nice to get all the suitcases and boxes put away, at least for 6 weeks when we'll go back for her follow up MRI and visits.
I did get hit with alot of things I wasn't prepared for this week. Like a "surprise" choral concert for Brittney that she just found out about this past Tuesday, vet visits on Tuesday for my dogs and an orthodontist appointment for Britt on Thursday. And I thought I would have a week to settle back in. I hope the homework load is easy this week!
Ivee is doing well, and as of yesterday didn't want to go to school on Monday. She wanted to stay home with momma!!! As of tonight, she wanted to go to school to see Ms. Brooks (her teacher). She only has the 3 weeks left, so as much as I will probably miss her, I want her to go and be with her friends and get in lots of play time, therapy, and learnin'!!!
I am getting really excited about Ivee's make a wish trip in June. She is so excited about "swimming at Disney World." We'll hopefully be having her wish party soon. I think it is going to be a great and very well deserved trip for our family.
Well, I have to go finish the laundry and prepare for cleaning and doing yardwork this week. Continue to pray for Ivee's continued healing. God give her renewed health.
God bless you all....Hope
"Heal me, Oh Lord, and I will be healed.
Save me and I will be saved.
For you are the one I praise."
Jeremiah 17:14
I did get hit with alot of things I wasn't prepared for this week. Like a "surprise" choral concert for Brittney that she just found out about this past Tuesday, vet visits on Tuesday for my dogs and an orthodontist appointment for Britt on Thursday. And I thought I would have a week to settle back in. I hope the homework load is easy this week!
Ivee is doing well, and as of yesterday didn't want to go to school on Monday. She wanted to stay home with momma!!! As of tonight, she wanted to go to school to see Ms. Brooks (her teacher). She only has the 3 weeks left, so as much as I will probably miss her, I want her to go and be with her friends and get in lots of play time, therapy, and learnin'!!!
I am getting really excited about Ivee's make a wish trip in June. She is so excited about "swimming at Disney World." We'll hopefully be having her wish party soon. I think it is going to be a great and very well deserved trip for our family.
Well, I have to go finish the laundry and prepare for cleaning and doing yardwork this week. Continue to pray for Ivee's continued healing. God give her renewed health.
God bless you all....Hope
"Heal me, Oh Lord, and I will be healed.
Save me and I will be saved.
For you are the one I praise."
Jeremiah 17:14
Wednesday, May 04, 2011
2 more days of 2nd dose RT
Yes, two more days, and we are excited. Today was a long day and Ivee didn't really feel like cooperating. Tomorrow we start a late day, not until 11:30. She has a longer sedation time cause she has an MRI following her radiation treatment. Then a surprise for her, hopefully all will go right and Daddy will be coming up tomorrow afternoon. We saw Dr. Merchant today and he is happy with Ivee's progress. He watched her walking out the door today, leaving me behind and she took the nurse and ran off, and he just watched her and said, "She is doing so well. Really walking well and seeming like she is fine." He continued to to say, once again, how nervous it makes him to do 2nd dose radiation, mainly cause of the detrimental effects it can have on breaking down tissue and veins in the brain, and the deficits it can cause developmentally. He is just very pleased that Ivee doesn't seem to be showing any signs of deficits right now. That is what we are continuing to pray for. If I haven't said it before, I'll say it now...I love THAT MAN!!! He is a great doctor, who truly, genuinely, and absolutely has a desire to save my child, but not only that, to give her the best life possible after doing so. He is a blessing from God, and Ivee adores him as well. I'm sure he has a soft spot for her as well, as he has shown in many office visits.
Ivee does have an MRI tomorrow, where we not only will be checking for tumor, but mostly checking for tissue breakdown or weaknesses. Please, send up a prayer that Ivee's little brain, veins, and everything in there look healthy as possible. She has already suffered damage from past surgeries and treatments and has severe scarring in there as well. I'm praying that there is nothing new....at all!!!!!
Also, praying for safe travels for daddy tomorrow and safe travels for all 3 of us Friday. It is always strange to come back home after being gone for 2 months. It almost feels foreign, and then everyone has to all learn to live together under one roof again. Back to the old grind after developing new habits.
On a separate thought tonight, lift up a prayer for my friend Tony Shoemaker. His beautiful and wonderful wife Dee passed away today after battling chronic pain for a few years from a car wreak. She was the sweetest lady and one of the first people to introduce herself and make me feel welcome at our church.
That is all from the Foley's for now. Always many thoughts rambling around in this head of mine, but I can't put it all out there, especially since you don't want to hear them all and some might make you wonder what kind of mind I actually have....it is a bit insane in there at times.
Love from Hope and Ivee
"Heal me, Oh Lord, and I will be healed. Save me and I will be saved. For you are the one I praise." Jeremiah 17:14
Ivee does have an MRI tomorrow, where we not only will be checking for tumor, but mostly checking for tissue breakdown or weaknesses. Please, send up a prayer that Ivee's little brain, veins, and everything in there look healthy as possible. She has already suffered damage from past surgeries and treatments and has severe scarring in there as well. I'm praying that there is nothing new....at all!!!!!
Also, praying for safe travels for daddy tomorrow and safe travels for all 3 of us Friday. It is always strange to come back home after being gone for 2 months. It almost feels foreign, and then everyone has to all learn to live together under one roof again. Back to the old grind after developing new habits.
On a separate thought tonight, lift up a prayer for my friend Tony Shoemaker. His beautiful and wonderful wife Dee passed away today after battling chronic pain for a few years from a car wreak. She was the sweetest lady and one of the first people to introduce herself and make me feel welcome at our church.
That is all from the Foley's for now. Always many thoughts rambling around in this head of mine, but I can't put it all out there, especially since you don't want to hear them all and some might make you wonder what kind of mind I actually have....it is a bit insane in there at times.
Love from Hope and Ivee
"Heal me, Oh Lord, and I will be healed. Save me and I will be saved. For you are the one I praise." Jeremiah 17:14
Monday, May 02, 2011
T Shirt Orders
Ordering the tshirts this weekend. So, order now if you want one. Click the link Team Ivee logo to the right.
Wednesday, April 27, 2011
Is it time....
Almost...... 7 more treatments to go and we'll be home in 9 days...if weather permits. 11 more days and my baby will see 5 years on this earth! As I stated to a lady recently...many people in this world as saddened when their kids birthdays come around. They want them to stay 4 or 5. To keep them little, in their grasp, safe and not let them grow up. Yes, I understand missing that "littleness". But, once you become the mom of a child with cancer, you celebrate (perhaps "overly" celebrate) that achievement. You can't wait for your child to be 6......13........18.......30.....60. You long for them to reach that next year, that next step, that next milestone. I know their may be time when I look at her and I only wish that Ivee could be a normal child.... eating, walking, standing, able to get around, going potty on her own. BUT, if I have to beg her to try food (like many parents have to do anyway), if I have to help her to get around the house in a wheelchair or pick her up to put her in her walker (even if she's 100 pounds), even if I have to change her diaper til she's 15, I'll take it. I'll take every ugly word she might say to me when she's 16 and wants to do what her other friends are doing. I'll take her moments of rebellion. I'll take her need to become independent, even when she can't be, and she throws a fit! I'll take the gagging and the obsessive compulsive ways that she hates food on someones mouth. I'll take her OCD tendencies that tend to make her difficult to play games with. And I'll take her ability to teach me patience, being that she is a child that takes her own time and is never in a hurry (NO MATTER WHAT)! Which is totally uncharacteristic of her mother who always wants to get where she needs to go on time, if not early, and at a constant pace! So, while most mommy's cling to their childhood, I dream of the day my baby gets her license, her heart broken by some stupid boy, graduates high school/college, meets Mr. Right, and travels the world chasing her dreams.
I have so much more on my mind, but I feel if I share it all I will be preaching, and I don't really feel like hurting feelings or getting on a soapbox right now. I will leave you with this bit of information though. Let me state before I move on though, I in NO WAY am telling you where to donate money and that something is more important than the other, but if you are a supporter of funding research for Childhood Cancer, you can't give to just any group and expect Ivee and her friends to benefit from it. More than likely, it won't help them at all. There are some fundraising groups, hospitals or societies that give as much as $.87 out of a $1.00 to their patients and research (St. Jude, St. Baldricks, Alex's Lemonade Stands and more being just a few)
Article:
Do you know where your money goes when you donate?? If you give to Relay for Life hoping to help children, did you know that less then half a penny goes toward pediatric cancer research. Read the info below (just a clip from the article on 1 cancer institute) but for info on all of them and where your $ may go visit this site to know the facts. http://curechildhoodcancer.ning.com/forum/topics/so-where-does-the-money-go
The American Cancer Society
The mission statement of the American Cancer Society (ACS) reads: "Founded in 1913, the American Cancer Society (ACS) is the nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service. With more than two million volunteers nationwide, the American Cancer Society is one of the oldest and largest voluntary health agencies in the United States. Headquartered in Atlanta, Georgia, the ACS has state divisions and more than 3,400 local offices."
Many chose to become involved with the ACS fundraising events, including the "Relay for Life". The funds collected by the ACS are used for many causes. The numbers, in millions:
Looks black and white to us. The numbers speak for themselves with regard to the funding for childhood cancer, but just to be clear, 0.6% of funds are directed towards research to cure the entire suite of childhood cancers.
Imagine you participate in a Relay-For-Life. You raise $1,000. $270 (27%) goes to admin and fundraising costs. Only $150 goes to any research, and only $6 of that $1000 you raised is targeted towards childhood cancer.
(for more statistics on groups like National Cancer Institute, The LEUKEMIA & LYMPHOMA SOCIETY, and more visit the site posted above)
I have so much more on my mind, but I feel if I share it all I will be preaching, and I don't really feel like hurting feelings or getting on a soapbox right now. I will leave you with this bit of information though. Let me state before I move on though, I in NO WAY am telling you where to donate money and that something is more important than the other, but if you are a supporter of funding research for Childhood Cancer, you can't give to just any group and expect Ivee and her friends to benefit from it. More than likely, it won't help them at all. There are some fundraising groups, hospitals or societies that give as much as $.87 out of a $1.00 to their patients and research (St. Jude, St. Baldricks, Alex's Lemonade Stands and more being just a few)
Article:
Do you know where your money goes when you donate?? If you give to Relay for Life hoping to help children, did you know that less then half a penny goes toward pediatric cancer research. Read the info below (just a clip from the article on 1 cancer institute) but for info on all of them and where your $ may go visit this site to know the facts. http://curechildhoodcancer.ning.com/forum/topics/so-where-does-the-money-go
The American Cancer Society
The mission statement of the American Cancer Society (ACS) reads: "Founded in 1913, the American Cancer Society (ACS) is the nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service. With more than two million volunteers nationwide, the American Cancer Society is one of the oldest and largest voluntary health agencies in the United States. Headquartered in Atlanta, Georgia, the ACS has state divisions and more than 3,400 local offices."
Many chose to become involved with the ACS fundraising events, including the "Relay for Life". The funds collected by the ACS are used for many causes. The numbers, in millions:
Childhood Cancer Research - $6.2
Other Research - $143
Prevention - $177
Detection/Treatment - $129
Patient Support - $275
Management - $63
Fundraising - $222
(for more statistics on groups like National Cancer Institute, The LEUKEMIA & LYMPHOMA SOCIETY, and more visit the site posted above)
Wednesday, April 20, 2011
Prayer request...
My Prayer family, lift Up Ivee's friend, Brandon. He has an MRI tomorrow and we are praying for the tumor on his brain stem to be smaller or GONE!!!!! Lift him up in prayer please......
Saturday, April 16, 2011
We're 1/2 way there....
Yesterday was the 1/2 way mark for treatment. 15 of 30 done. We've made many, many new friends here. Ivee performs for them all the time, and gets noticed everywhere we go. It doesn't hurt that she is always dressed like a princess. Who wouldn't notice the child with style :) She is getting nauseated from radiation. I am trying to keep the zofran in her on schedule to help with that. It doesn't take much to gag her. I was chewing gum the other day and it made her gag. Of course I threw it away immediately. Her port has been acting up, but we manage to get it to work every week. She calls it the "bad buddy." She has regained all the strength she had before the surgery. Her walking has improved much.
So, I know that everyone prays for us to return home quickly, and being apart is hard...BUT there are pluses to this journey. Not everything in life it negative. Would anyone ask for this journey...HECK NO! But God moves in all ways. One of the great things about St. Jude and the RMH/Target houses is that everyone is going through what you're going through...so when your 18 and have a bald head, or your face has been ravaged by cancer and you are here for reconstruction, or you have a vomit bag on your mouth...you don't have to be conscientious...everyone here knows what's going on with you and they are encouraging and praying you through. AND we are ALL missing our family and friends, so we cherish getting to know one another so you have someone to talk to!!! It's is bitter-sweet when someone goes home, like Momma Teresa. Boy we miss her around here. Many of us are scheduled to be here until the end of our journey, so we all have anywhere from 2 to 4 weeks. Some will go home for a little while to take a break, then be back for treatment in a month to stay for 4 months or longer. There are always new families arriving as other families leave.
On a plus side, as well, Ivee has been getting lots of mail and LOVES it!!! She wants to go check everyday and see if there is something new. It amazes us how many strangers are blessing us with prayers, cards and gifts.
I always have so many on my prayer list but these are the immediate ones right now. I would ask that you join me in praying for these children.
Aubrey-Facial reconstructive surgery and biopsy
Brayden- They are sending him home, they can't do anymore here for him
Justin-radiation, pray for blood counts
Haley-Like Ivee, reoccurance, 2nd dose radiation
Levi- finishing treatment this Tuesday, protection liver
Emily- radiation, chemo treatment
Brandon-Ivee's new BFF- radiation, chemo, steroids. Protection
Lucy and Miracle-Radiation, pray for blood count, protection
Chasity-Radiation, protection, decisions.
Anderson-Continue to ask God to heal him
Myah-Done with treatment, God heal her!!!
Isaiah-Continued healing
Dorian, Ivory, Lyssie, Noah, matthew- God just heal/save them
There are so many more, but these are the ones going through treatment, reoccurances, at the end of their fighting and need a miracle, and severe medical problems.
God bless you all and keep praying for us all!!!
Jeremiah 17:14
"Heal me, O Lord, and I'll be healed.
Save me and I will be saved
For you are the one I praise"
So, I know that everyone prays for us to return home quickly, and being apart is hard...BUT there are pluses to this journey. Not everything in life it negative. Would anyone ask for this journey...HECK NO! But God moves in all ways. One of the great things about St. Jude and the RMH/Target houses is that everyone is going through what you're going through...so when your 18 and have a bald head, or your face has been ravaged by cancer and you are here for reconstruction, or you have a vomit bag on your mouth...you don't have to be conscientious...everyone here knows what's going on with you and they are encouraging and praying you through. AND we are ALL missing our family and friends, so we cherish getting to know one another so you have someone to talk to!!! It's is bitter-sweet when someone goes home, like Momma Teresa. Boy we miss her around here. Many of us are scheduled to be here until the end of our journey, so we all have anywhere from 2 to 4 weeks. Some will go home for a little while to take a break, then be back for treatment in a month to stay for 4 months or longer. There are always new families arriving as other families leave.
On a plus side, as well, Ivee has been getting lots of mail and LOVES it!!! She wants to go check everyday and see if there is something new. It amazes us how many strangers are blessing us with prayers, cards and gifts.
I always have so many on my prayer list but these are the immediate ones right now. I would ask that you join me in praying for these children.
Aubrey-Facial reconstructive surgery and biopsy
Brayden- They are sending him home, they can't do anymore here for him
Justin-radiation, pray for blood counts
Haley-Like Ivee, reoccurance, 2nd dose radiation
Levi- finishing treatment this Tuesday, protection liver
Emily- radiation, chemo treatment
Brandon-Ivee's new BFF- radiation, chemo, steroids. Protection
Lucy and Miracle-Radiation, pray for blood count, protection
Chasity-Radiation, protection, decisions.
Anderson-Continue to ask God to heal him
Myah-Done with treatment, God heal her!!!
Isaiah-Continued healing
Dorian, Ivory, Lyssie, Noah, matthew- God just heal/save them
There are so many more, but these are the ones going through treatment, reoccurances, at the end of their fighting and need a miracle, and severe medical problems.
God bless you all and keep praying for us all!!!
Jeremiah 17:14
"Heal me, O Lord, and I'll be healed.
Save me and I will be saved
For you are the one I praise"
Tuesday, April 12, 2011
Prayer request...
when you think of it, say a prayer today for Noah and Lyssie. They are desperately fighting for their lives. Also, say a prayer for Aubrey and her mother, Monica. Aubrey will be undergoing facial re-constructive surgery to help restore her face after cancer's devastating effects on her right-side of her face. So many request, but these are the urgent ones. God bless you all.
Monday, April 11, 2011
A long Monday to begin week 3
It's late and I'm tired, but I decided to write a small note. We had a LONG day of appointments beginning with ALL 3 therapies!?!?! I'm beginning to question the sanity of the scheduler in RO clinic!!! As of Friday when I got our Monday schedule, I had a 45 minute break between to therapies, so my plan was to get breakfast then. As we checked in this morning, I saw that all three therapies had been scheduled, followed by Triage (where they access the port, take weight, height, temp, Blood pressure..blah, blah), then the clinic visit to see the doctor, then radiation. All to be done before 1:00 p.m. So, luckily, our OT, Ashley, let me sneak out for a bite. Then Ivee did very well cooperating for all three therapist, thank the Lord. All ran quickly until we hit radiation. They were 1.25 hours delayed getting her to sleep. I was starving, by then, Ivee, who has no appetite, is getting hungry. Once under, I ran to renew my meal card and grab a quick bite. Once Ivee woke up, it took an hour to calm her down. She just sat and cried for home, and daddy. Even calling him on the phone didn't make her happy. It wasn't a fit throwing cry, but my heart is aching and I am home sick cry.
Finally, she is asleep and all was well later. I haven't been sleeping well. Last night I had night sweats all night and dreams that don't seem to end. My family is missing me, especially my husband who had a rough, tough weekend emotionally. He's been doing well, but he really misses being able to have me around for sporadic talks. I miss him as well. Hopefully the kids will be good for him the rest of the week, and hopefully Ivee will wake up better after sedation in the next few days until Papaw and brother and sister come for a visit.
Okay, that was my quick note. Have a blessed night everyone, and read ya later.
Hope
Finally, she is asleep and all was well later. I haven't been sleeping well. Last night I had night sweats all night and dreams that don't seem to end. My family is missing me, especially my husband who had a rough, tough weekend emotionally. He's been doing well, but he really misses being able to have me around for sporadic talks. I miss him as well. Hopefully the kids will be good for him the rest of the week, and hopefully Ivee will wake up better after sedation in the next few days until Papaw and brother and sister come for a visit.
Okay, that was my quick note. Have a blessed night everyone, and read ya later.
Hope
Thursday, April 07, 2011
Week two is almost at a close....
Almost to the end of week 2 of RT. Just 4 more weeks to go after this one is over. We have made many friends here at the RMH. Even have our own supper club...where we banish all forms of hot dog!! Many of you have sent Ivee mail, and that just makes her day!!! She loves going to see if we have a letter or package in the mail. She spends her nights at dinner entertaining our new friends with her mad dance skills. She was really on it last night, and she had her friend Brandon laughing his booty off!!! It was great to see Brandon so happy. He ask to see his silly little friend, he was asking for her this morning. The sample T-shirt that was on back order has finally come in, so hopefully I can give my full approval for them to print the t shirts SOON!!! So, go ahead and get those orders in if you haven't yet.
On a serious note, she is handling treatment really well. We are still worried about what it is doing to her, but most days she is her cheerful Ivee self. The only hard, hard times is the 30 minutes after she wakes up from sedation. I feel like some days I am way too use to this life. I guess after living in it for over 4 years, it just is what it is!! This is what life has been since Ivee came into this world, fighting for life from the beginning. I guess it's like someone who's child has a disability from the day they were born. You know you have to learn to live with it so...it becomes normal. So, I sometimes ask myself....."Why in the world should a life with a child battling cancer for her life feel normal?!?!?!" I see the new frazzled parents just starting this journey, and those days of feeling like that seem like ages ago. Shouldn't I still feel frazzled? Now scatter brained....yeah, that is there. I guess I'm just not going through the motions right now. Maybe I'm just focused or maybe even comfortable in this role. I know that is wrong...but it's just so true.
Okay, I guess I'll quite with that weird stuff and just say.....we miss home, but things here are so familiar that it just seems like home #2. We are in Memphis so often during the year that someone was telling me where the closest post office was by street names, and I knew where she was talking about. I have developed a love for this city and for the people I know here. But, don't worry my Alabamians...we'll be home before you know it.
Much Love and keep on praying for Ivee....the blessed.
On a serious note, she is handling treatment really well. We are still worried about what it is doing to her, but most days she is her cheerful Ivee self. The only hard, hard times is the 30 minutes after she wakes up from sedation. I feel like some days I am way too use to this life. I guess after living in it for over 4 years, it just is what it is!! This is what life has been since Ivee came into this world, fighting for life from the beginning. I guess it's like someone who's child has a disability from the day they were born. You know you have to learn to live with it so...it becomes normal. So, I sometimes ask myself....."Why in the world should a life with a child battling cancer for her life feel normal?!?!?!" I see the new frazzled parents just starting this journey, and those days of feeling like that seem like ages ago. Shouldn't I still feel frazzled? Now scatter brained....yeah, that is there. I guess I'm just not going through the motions right now. Maybe I'm just focused or maybe even comfortable in this role. I know that is wrong...but it's just so true.
Okay, I guess I'll quite with that weird stuff and just say.....we miss home, but things here are so familiar that it just seems like home #2. We are in Memphis so often during the year that someone was telling me where the closest post office was by street names, and I knew where she was talking about. I have developed a love for this city and for the people I know here. But, don't worry my Alabamians...we'll be home before you know it.
Much Love and keep on praying for Ivee....the blessed.
Monday, April 04, 2011
Begin Week two of treatment....
Daddy and the kiddos left yesterday, and there was crying all the way back to the house (I think for Ivee and daddy). He's ready to leave the other two with me. I think there is a greater appreciation for momma now :) Ivee is looking forward to them coming back in a few weeks. Papaw will be bringing the kids up for spring break and their daddy will come up Easter weekend to get them.
Today was a crazy day around here. It seemed like all the kids waiting for treatment were on edge, kind of like a dog who is scared of storms. And it did storm here today...badly. They had to postpone treatments due to power surges, and this made all the treatments behind. Luckily, Ivee got hers before the surges, but these other poor babies were really delayed. The ones that have to be sedated are NPO (Nothing by mouth) 8 hours before treatment. Many are on steroids and they are STARVING when they wake up. So they are tortured to wait until treatment is over. The delay made it worse.
Ivee is cooping very well to our daily life. It's not an easy thing, doing all this, but we always seem to make the most of it. We have an amazing new bunch of "family" members here. We even have a "supper club" going on. It is nice to be able to reach out to these families and feel connected. It is so different then just the 4 to 6 month visits because when you live under the same roof together, you build a more closely knit relationship. I will follow these kids and their parents journeys forever, come what may.
So, when you say a prayer for Ivee, add Brandon, Levi, Emily 1 & 2, Lucy, Hutch, Chasity, Justin, Haley and Allison to your list. I'm sure there will be more along that way. God bless.
Today was a crazy day around here. It seemed like all the kids waiting for treatment were on edge, kind of like a dog who is scared of storms. And it did storm here today...badly. They had to postpone treatments due to power surges, and this made all the treatments behind. Luckily, Ivee got hers before the surges, but these other poor babies were really delayed. The ones that have to be sedated are NPO (Nothing by mouth) 8 hours before treatment. Many are on steroids and they are STARVING when they wake up. So they are tortured to wait until treatment is over. The delay made it worse.
Ivee is cooping very well to our daily life. It's not an easy thing, doing all this, but we always seem to make the most of it. We have an amazing new bunch of "family" members here. We even have a "supper club" going on. It is nice to be able to reach out to these families and feel connected. It is so different then just the 4 to 6 month visits because when you live under the same roof together, you build a more closely knit relationship. I will follow these kids and their parents journeys forever, come what may.
So, when you say a prayer for Ivee, add Brandon, Levi, Emily 1 & 2, Lucy, Hutch, Chasity, Justin, Haley and Allison to your list. I'm sure there will be more along that way. God bless.
Friday, April 01, 2011
Into weekend #2...
So, week 1 dose #5 is complete. I'm not sure I should call it #5 or should I call it dose #38. When this is all over, Ivee would have received 63 doses of radiation to her little body. I have met one other family here at the RMH who is dealing with a reoccurance of Medullablostoma. Even though it's not Ependymoma, we are all in the same boat. Unfortunately, she is having full radiation to the entire brain and her hair is falling out. Ivee's radiation is just focalized on the one spot where the reoccurance was. So, her mommy is going to have to buzz her hair off tonight. Another little girl's hair was buzzed at the beginning of the week, and she has been sporting some pretty awesome wigs today!!!
Ivee's been counting down the days til daddy arrives. She didn't mention anything today, but Emmett planned getting here today before she was to awake from treatment. So, as Ivee awoke from sedation I walked in. They say that the moment she awakens from sedation, is immediately ask for me. She saw me and said, "hey", then daddy popped out from behind me. Her eyes, as drugged as they were, popped open big and she declared, in her soft hourse little voice, "Daddy, you're back!!!" It was priceless. She was telling the nurse that her daddy was back! Then she ask to "Hold mommy." It is so sweet. When she wants us to hold her, she'll say "I want to hold momma" or "I want to hold daddy."
She has been looking forward to getting her "Buddy" out today. A "buddy" is the needle infusion line they put in her port. It stays in the whole week, Monday to Friday. I told her it was coming out today, and she is quite happy that is gone.
So, daddy, Brittney and Ethan are here for the weekend. Ethan is already bored. Brittney is already talking about nothing, and Emmett is touching and annoying me. Ahhhh...home sweet home came to me!!!!
Ivee's been counting down the days til daddy arrives. She didn't mention anything today, but Emmett planned getting here today before she was to awake from treatment. So, as Ivee awoke from sedation I walked in. They say that the moment she awakens from sedation, is immediately ask for me. She saw me and said, "hey", then daddy popped out from behind me. Her eyes, as drugged as they were, popped open big and she declared, in her soft hourse little voice, "Daddy, you're back!!!" It was priceless. She was telling the nurse that her daddy was back! Then she ask to "Hold mommy." It is so sweet. When she wants us to hold her, she'll say "I want to hold momma" or "I want to hold daddy."
She has been looking forward to getting her "Buddy" out today. A "buddy" is the needle infusion line they put in her port. It stays in the whole week, Monday to Friday. I told her it was coming out today, and she is quite happy that is gone.
So, daddy, Brittney and Ethan are here for the weekend. Ethan is already bored. Brittney is already talking about nothing, and Emmett is touching and annoying me. Ahhhh...home sweet home came to me!!!!
Tuesday, March 29, 2011
Let's Order some T-Shirts.......
Team Ivee Shirts
I know this is a lot of info, but I want to make this easy on everyone, including us. Thanks for your patience in reading how to order.
I know this is a lot of info, but I want to make this easy on everyone, including us. Thanks for your patience in reading how to order.
Here are sizes available and prices
Child Sizing: $11.00 Each
2-4 small
6-8 medium
10-12 large
14-16 extra large
Adult Sizing: $12.00 each
Generic sizing t-Shirts: small, medium, large, extra large
Adult Plus sizes: $13.00 each
2X, 3X, 4X
2X, 3X, 4X
How to receive your shirt:
There are a few ways to get your shirt. Choose the best way, and then follow how to inform us in the "How to pay for your shirt".
There are a few ways to get your shirt. Choose the best way, and then follow how to inform us in the "How to pay for your shirt".
- If you live in the Mobile/Baldwin County area, You can pick your shirt up from me in Bay Minette, or I can mail it to you. (see below)
- If you live in the Pensacola area, my sister, Sonia, would gladly let you pick your shirts up from her. Just make sure to follow information instructions in ordering.
- If you live in the Memphis area, I'm sure you can catch up with me at St. Jude or i can mail it. Just email me or follow the instructions in ordering.
- If you live anywhere else, we will mail it to you for the price of a flat rate box. I have listed the prices below (in the "How to pay for your shirt" section). It is based on how many shirts you need mailed to you. Read carefully to choose. .
How to pay for your shirt
We have found the easiest way to receive payment for the t-shirts is through paypal, an online financial payment/buying site. (Instructions are below) It is also the fastest way to place your order. I know some are not very technologically savvy, but the site is pretty easy. (If some still have problems using it, contact me via email and you can mail your order and a check or money order to my home)
When paying, don't forget to total you shirt quantity and prices. If we are mailing your shirt, you will need to include the price for shipping to you total. (example below in blue) The flat rate prices are listed below.
Flat Rate Box quantity and price:
- 1 t-shirt: Small flat rate box - Price $6.00
- 2 to 6 T-Shirts: Medium flat rate box - Price $11.00
- 7 to 12 T-shirts: Large flat rate box - Price $15.00
If you need an example on how to order:
So, for example if you order were:
2 Children's Shirts: 2 x $11 = $22.00
2 Adult Shirts: 2 x $12 = $24.00
1 Adult plus size: 1 x $13 = $13.00
Shipping: 5 shirts = $11.00
The Total would be = $70.00
So your total would be $70.00. This is the amount you would send via paypal.
(Then you would leave the details in the message box)
Instructions for Payment with Pay Pal
To Purchase your t-shirt through PayPal in 4 steps:
1. Click the link (Pay Now) below (or go to www.paypal.com)
2. Go to Send Money
3. Choose Buying Something and then follow the instructions, entering the email address
hopealations@hotmail.com as the recepient address.
4. Paypal will have you create an account, if you don't have one. Don't worry, this is a very secure site. I have used it a long time.
4. Paypal will have you create an account, if you don't have one. Don't worry, this is a very secure site. I have used it a long time.
5. VERY IMPORTANT........Once you get to the check out screen, there will be a place for you to leave a message. You must give the following information:
- Name
- Your shirt size(s) and quantity
- Email address
- Phone number
- List how you will receive your shirt: Mail or pick up
- If mailing your shirts, you must include your mailing address.
After making your payment, please print out your receipt for safe keeping. If you are picking up your shirt, we will email you once your shirt has arrived. If it is being mailed, we will send an email to let you know it has been mailed.
Monday, March 28, 2011
T Shirt Cost
Okay...so T Shirts are going to be the following. Sizes: children's and Adult's----Sizes: S, M, L, & XL = $12.00 -------Adult Plus sizes 2x, 3x, 4x = $13.00. I'm going to set up for the pay pal account for people to use some day soon. Checking shipping options.
Saturday, March 26, 2011
T Shirt Orders in the near future
We are almost ready to begin ordering T Shirts and I am so excited. They are finishing up the artwork to make the silk screens. The verdict is still out on the shirt color I am picking until I see the samples next weekend when Emmett comes up. I believe we have the prices, but they are not final. Em and I have talked about the cost, and we will be rounding the cost up a little, but I don't want to break anyone's wallet!!! The little extra made will go to help with the traveling expense for Em and the kids to come up to see us, and for the lack of having a kitchen here to cook in and having to eat out. (:
I can tell you that we will have children's size down to 2 T and Plus sizes up to 4x. I believe that I will be taking payments through PayPal, as this is the easiest way to do it, especially for those who live out of our area of the Eastern Shore. I also will be able to mail the t shirts to you by flat rate service from the USPS for just the cost of the flat box rate for those who can't pick them up from us. (So those needing it mailed will need to also include the shipping cost. I will let you know what the cost is based on how many you purchase and the box it will have to be mailed it.) I am not living at home right now though, so mailing will have to happen when Emmett or another volunteer can get to it.
So, stayed tuned. Ordering might begin this week....
I can tell you that we will have children's size down to 2 T and Plus sizes up to 4x. I believe that I will be taking payments through PayPal, as this is the easiest way to do it, especially for those who live out of our area of the Eastern Shore. I also will be able to mail the t shirts to you by flat rate service from the USPS for just the cost of the flat box rate for those who can't pick them up from us. (So those needing it mailed will need to also include the shipping cost. I will let you know what the cost is based on how many you purchase and the box it will have to be mailed it.) I am not living at home right now though, so mailing will have to happen when Emmett or another volunteer can get to it.
So, stayed tuned. Ordering might begin this week....
Thursday, March 24, 2011
After another crummy night in Memphis....
She had another horrible night of sleep. She would wake up often screaming and talking jiberish, kicking and pulling the covers on and off. I've never seen her act like this in her sleep, outside the hospital the time she had the reaction to the vancomycin. The only thing that was different about what I've been doing for her is a cough syrup they perscribed. SO, she will not be getting that before bed tonight!!! And hopefully that will solve that issue, I pray.
Ivee's chest xray was compared to the last one they took (in 2008 mind you). She's always had some thickening of the lungs, but there is still a little room for concern, so we are starting her on an antibiotic today as well as some allergy medicine. With all the "new blooms" here and back home, even a typical healthy person could be dealing with all the allergy/pollen JUNK in the air. She has been sounding so awful. I've never heard her with a cough like this. Her lungs are crackly and she has a bit of a weez with the coughing.
Tomorrow they will do Ivee's film. It is like a dry run for radiation treatments, doing all that they would do for it, but without the radiation beam. It will make things more comfortable and ready to begin radiation on Monday.
We are trying to get her better quickly so that she will be ready to start the treatments and we won't have to be concerned about her lungs/breathing during sedation.
I had a pleasant surprise visit with a former student and son of some old friends. My former Pastor and co-worker, Phil Wilson's oldest son, Isaac, dropped in on us yesterday. It was great to visit with him and see what he is doing and pursuing here in Memphis while he is in college. He has an exciting future ahead, and I am looking forward to seeing what it holds for him. He also caught me up on what the rest of the family was up too. Looking forward to a visit from Phil when he comes to Memphis sometime. And even though I had seen Isaac since he was 13/14, it was nice to talk to someone that I had known and had some things in common with. We shared many a dinner theatre experience those many years in Spanish Fort.
On another note, it is kinda lonely here in Memphis right now. I haven't really had anytime to meet the families here, doesn't help that Ivee isn't feeling well. The last thing the chemo kids here need around them is a sick person. It is difficult to get around with Ivee, especially in the cafeteria, since she can't walk. She isn't back up to speed with using her walker and she doesn't feel well anyway. I have only been out of the room for hospital visits and for dinner at night. Plus, I find it difficult to strike up conversations with people, especially when you don't know where they are in their fight. Some families here want to be left alone, and some are struggling just to keep it together. So, I find that I don't want to "intrude" on others. I, as usual, will just wait until the time feels right or God prompts me to speak to someone. Plus, I don't have it in me to just strike up a conversation with anyone, I'm not good with small talk unless it's with a small person...kids that is. They will talk to you about anything if you are willing to listen to them.
Okay, so that's enough whining from me. I'm going to go attend the 4 year old.
Ivee's chest xray was compared to the last one they took (in 2008 mind you). She's always had some thickening of the lungs, but there is still a little room for concern, so we are starting her on an antibiotic today as well as some allergy medicine. With all the "new blooms" here and back home, even a typical healthy person could be dealing with all the allergy/pollen JUNK in the air. She has been sounding so awful. I've never heard her with a cough like this. Her lungs are crackly and she has a bit of a weez with the coughing.
Tomorrow they will do Ivee's film. It is like a dry run for radiation treatments, doing all that they would do for it, but without the radiation beam. It will make things more comfortable and ready to begin radiation on Monday.
We are trying to get her better quickly so that she will be ready to start the treatments and we won't have to be concerned about her lungs/breathing during sedation.
I had a pleasant surprise visit with a former student and son of some old friends. My former Pastor and co-worker, Phil Wilson's oldest son, Isaac, dropped in on us yesterday. It was great to visit with him and see what he is doing and pursuing here in Memphis while he is in college. He has an exciting future ahead, and I am looking forward to seeing what it holds for him. He also caught me up on what the rest of the family was up too. Looking forward to a visit from Phil when he comes to Memphis sometime. And even though I had seen Isaac since he was 13/14, it was nice to talk to someone that I had known and had some things in common with. We shared many a dinner theatre experience those many years in Spanish Fort.
On another note, it is kinda lonely here in Memphis right now. I haven't really had anytime to meet the families here, doesn't help that Ivee isn't feeling well. The last thing the chemo kids here need around them is a sick person. It is difficult to get around with Ivee, especially in the cafeteria, since she can't walk. She isn't back up to speed with using her walker and she doesn't feel well anyway. I have only been out of the room for hospital visits and for dinner at night. Plus, I find it difficult to strike up conversations with people, especially when you don't know where they are in their fight. Some families here want to be left alone, and some are struggling just to keep it together. So, I find that I don't want to "intrude" on others. I, as usual, will just wait until the time feels right or God prompts me to speak to someone. Plus, I don't have it in me to just strike up a conversation with anyone, I'm not good with small talk unless it's with a small person...kids that is. They will talk to you about anything if you are willing to listen to them.
Okay, so that's enough whining from me. I'm going to go attend the 4 year old.
Wednesday, March 23, 2011
Not all is well from the Land of the glass pyramid....
Ivee has been struggling with some congestion last week. Yesterday, she had some moments when waking up, but last night before bed, she just had a huge coughing fit. Then at 3 a.m. this morning, she just couldn't get any relief and she had a fever. I have salined, neubulizered, and cough syruped her. Today, we will get a chest xray, and continue to try to help her. She just sounds awful. She has never had trouble like this before. She wants to actually leave the room today, and this is the day she needs to stay in.
Praying we can get her relief before Friday when she needs to be sedated for a scan.
Praying we can get her relief before Friday when she needs to be sedated for a scan.
Monday, March 21, 2011
Sunday, March 20, 2011
Home Sweet Home in Memphis
Made it to the RMH in Memphis about 5:45 p.m. Ivee is fast asleep in her big girl full size bed. She wanted the "other" bed, but mommy put her in the bed I want her in after she feel asleep. (It can be pushed against the wall!) I have unpacked and put everything away. Now, to just begin our normalcy here. Oh, and the RMH has repainted since I was here 4 years ago. My room is Bright Lime Green (if anyone saw Britt's orig. room, you know what I mean) Boy, I'm going to be nauseated every morning :) For my friends and family, I have a phone number and snail-mail address. Message me if you want them. Also, I have video call on Skype, so if you want a video call sometime, friend me.
Thursday, March 17, 2011
T Shirt designs...
Well, we are working on the design still, cause Em and I can't agree on the front. We have the back done...we think. What are your thoughts on it?
As for the Front, we are at odds. Soooo for those interested in purchasing one, let me know your thoughts on which of the following you would like for the front. Take a vote and let me know. Whatever is chosen will go on the left side pocket area.
Concept A: Above picture
Concept B: Picture to the leftConcept C: Picture to the right
Radiation Postponed
I recieved an email from our RO nurse yesterday. She informed me that Ivee's radiation plan will need some more work, so she will not begin radiation on Monday. I have decided, however, to go ahead and move up on Sunday anyhow. Hopefully, once her plan is in place, we will be able to begin asap if we are already there.
I am in the process of trying to get life here at home taken care of. There is still so much to do on my "to do" list, and I don't even have packing for being gone almost 2 months on there.
I hope to complete the shirt design for our "Team Ivee" shirts sometime this week before I leave so that I can get together with the silk screen/t shirt company. I hope everyone likes what we come up with. For me, I like to be creative, and I want the shirt to have some Ivee flare, but I am trying to make it gender friendly. (This does make me kinda sad, cause my baby is so girly. She would love a "pretty" shirt!!!)
Continue to lift us and others up in prayer. Sooooo many kids out there still fighting the fight. And many don't ask for it, but continue to pray for the neurosurgeons, hemo oncologist, and radiation oncologist that treat these babies. They are the ones whom God uses to continue the fight and give hope to many. These people chose to go to school, to use their skills to help others fight for their lives! They are still trying to make improvements, not only in defeating cancer, but in tying to help these deveolping children sustain a better quality of life!
God bless!
Love Hope
Mother of Ivee the Blessed
Jeremish 17:14
"Heal me, O Lord, and I will be Healed
Save me and I will be saved
For you are the one I praise"
I am in the process of trying to get life here at home taken care of. There is still so much to do on my "to do" list, and I don't even have packing for being gone almost 2 months on there.
I hope to complete the shirt design for our "Team Ivee" shirts sometime this week before I leave so that I can get together with the silk screen/t shirt company. I hope everyone likes what we come up with. For me, I like to be creative, and I want the shirt to have some Ivee flare, but I am trying to make it gender friendly. (This does make me kinda sad, cause my baby is so girly. She would love a "pretty" shirt!!!)
Continue to lift us and others up in prayer. Sooooo many kids out there still fighting the fight. And many don't ask for it, but continue to pray for the neurosurgeons, hemo oncologist, and radiation oncologist that treat these babies. They are the ones whom God uses to continue the fight and give hope to many. These people chose to go to school, to use their skills to help others fight for their lives! They are still trying to make improvements, not only in defeating cancer, but in tying to help these deveolping children sustain a better quality of life!
God bless!
Love Hope
Mother of Ivee the Blessed
Jeremish 17:14
"Heal me, O Lord, and I will be Healed
Save me and I will be saved
For you are the one I praise"
Saturday, March 12, 2011
Update on....Life
Sorry I haven't posted, but it's for different reasons. 1. My phone is not the easiest thing to update on. 2. Didn't have my PC with me. 3. I haven't felt like it and unfortunately, I don't feel like it right now. I'm already pretty tired and we still have to set the clocks forward tonight...grrrhhh!!
We made it home Friday after being back in Memphis since Tuesday. Thanks to Ninfa Moore for going with me and to Tony Moore for letting her go! Ivee was not happy about being back on the road again. We had to stop often on our trip up. She finally gave it up for a nap about an hour away from St. Jude.
Her first appointment on Wednesday was labs, and we couldn't get her port to work. So, we had to fill it with TPA to break up the clot in it, you have to wait an hour for it to work. We were finally able to get it to flush and pull her lab work out. We meet with Dr. Merchant. He once again went over the short term and long term side effects of radiation. Then the dangers of radiation, especially the complete dangers of 2nd time radiation. He stated that so far they have been "lucky" in this, as they have never really seen the severe side effects of 2nd time radiation, but it will one day be inevitable. (I personally don't believe in Luck. I believe in the protective power of my Creator, Healer and Provider. And don't think for one minute that I don't think God uses that man or his abilities and the abilities of others to help our children). I remember Ivee's side effects from the 1st time radiation. She was so tired, her poops were awful and smelt sooo bad. She has scarring from it, and it will probably scar again. There can be effects on growth (which Ivee has to see an endocrinologist when this is done) and there can be balance and developmental delays...among other things.
When it came time for her CT Radiation Simulation, they were 2 hours behind. Luckily, once we got back there they knocked her out quickly. That is great because she was highly upset to go back under. I promised her she wouldn't wake up with another cut or tube down her throat. I can honestly say....I NEVER lie to her. I always tell her what is going to happen. I will never let her say you lied to me or I don't trust you. I started that when Brittney was little and had to go to the dentist. They, the dentist, didn't like the fact that I told "MY" child she would have to have a few little shots in her mouth. We'll...too bad for them...they are my kids and I will tell them what I want, when I want, and I don't sugar coat stuff. NOW, I also don't make it all drama either. (Okay, I'll back off the subject....sorry for the rant)
Thursday was MRI day. She was better for this, but that is because Dr. B (anesthesiologist) is so awesome with those kids!!!
That after noon, Dr. Boop (n-surgeon) told us the MRI looked good. Looks like there is no damage or injury from the surgery. Just some pooling of brain fluid on the top part of the brain. No concern, though, should be absorbed. The infection on her neck is superficial and hopefully should be good to go within a week. Can't really radiate that area if it's still, well, puss filled. Sorry for those with weak constitutions!
Did see Dr. Merchant before we left the hospital that night. (He was working late, and actually had his phone out dialing my number as I walked around the corner of the cafeteria.) He confirmed the MRI results and said that they would call me this week. He just had to finish his part that night for her to start radiation on the 21st.
Sooooo......Em, Ivee and I will drive up on the 20th and get settled in for the 6 week stretch. Em will drive home the next day (renting a car).
Continue to pray for us. Just so much going on in my mind right now. Trying to focus. Alot to get prepped this week for my term of leave from home and family. Take care and thanks for being such a great support group for us!!!!
We made it home Friday after being back in Memphis since Tuesday. Thanks to Ninfa Moore for going with me and to Tony Moore for letting her go! Ivee was not happy about being back on the road again. We had to stop often on our trip up. She finally gave it up for a nap about an hour away from St. Jude.
Her first appointment on Wednesday was labs, and we couldn't get her port to work. So, we had to fill it with TPA to break up the clot in it, you have to wait an hour for it to work. We were finally able to get it to flush and pull her lab work out. We meet with Dr. Merchant. He once again went over the short term and long term side effects of radiation. Then the dangers of radiation, especially the complete dangers of 2nd time radiation. He stated that so far they have been "lucky" in this, as they have never really seen the severe side effects of 2nd time radiation, but it will one day be inevitable. (I personally don't believe in Luck. I believe in the protective power of my Creator, Healer and Provider. And don't think for one minute that I don't think God uses that man or his abilities and the abilities of others to help our children). I remember Ivee's side effects from the 1st time radiation. She was so tired, her poops were awful and smelt sooo bad. She has scarring from it, and it will probably scar again. There can be effects on growth (which Ivee has to see an endocrinologist when this is done) and there can be balance and developmental delays...among other things.
When it came time for her CT Radiation Simulation, they were 2 hours behind. Luckily, once we got back there they knocked her out quickly. That is great because she was highly upset to go back under. I promised her she wouldn't wake up with another cut or tube down her throat. I can honestly say....I NEVER lie to her. I always tell her what is going to happen. I will never let her say you lied to me or I don't trust you. I started that when Brittney was little and had to go to the dentist. They, the dentist, didn't like the fact that I told "MY" child she would have to have a few little shots in her mouth. We'll...too bad for them...they are my kids and I will tell them what I want, when I want, and I don't sugar coat stuff. NOW, I also don't make it all drama either. (Okay, I'll back off the subject....sorry for the rant)
Thursday was MRI day. She was better for this, but that is because Dr. B (anesthesiologist) is so awesome with those kids!!!
That after noon, Dr. Boop (n-surgeon) told us the MRI looked good. Looks like there is no damage or injury from the surgery. Just some pooling of brain fluid on the top part of the brain. No concern, though, should be absorbed. The infection on her neck is superficial and hopefully should be good to go within a week. Can't really radiate that area if it's still, well, puss filled. Sorry for those with weak constitutions!
Did see Dr. Merchant before we left the hospital that night. (He was working late, and actually had his phone out dialing my number as I walked around the corner of the cafeteria.) He confirmed the MRI results and said that they would call me this week. He just had to finish his part that night for her to start radiation on the 21st.
Sooooo......Em, Ivee and I will drive up on the 20th and get settled in for the 6 week stretch. Em will drive home the next day (renting a car).
Continue to pray for us. Just so much going on in my mind right now. Trying to focus. Alot to get prepped this week for my term of leave from home and family. Take care and thanks for being such a great support group for us!!!!
Sunday, March 06, 2011
T Shirts
I need to know who might be interested in purchasing a Team Ivee: Fighting Cancer shirt? I wouldn't be selling for profit. It there were any proceeds they would go to Children's Cancer research. Let me know on here or FB. I need to get an idea before I talk to the company that would make them.
Really....Do I need to drive again...
Yeah...so as you can see from my "heading" I'm not too thrilled to be taking another long drive up to Memphis this soon, but so is the life of a St. Jude Cancer patient's mom. You know, I was so excited when last year we hit the only going every 6 months marker for check ups. It doesn't feel like you just got home to have to turn around and drive right back up. But driving up 4 times in less than two months...now that is al ot of driving. Makes those every 12 weeks visits not so bad. They will fly you up there, which is faster, but with all of Ivee's medical equipment and her constant head congestion, we just aren't ready to try flying yet. I wouldn't fly right now anyhow, not so soon after resection and the infection on the lower half of her suture. Which, by the way, it is looking better...finally.
I believe we are all coming to grips with mom and Ivee leaving soon. I keep running through my head what all I need to show and tell Emmett. He doesn't know much of our daily routine, so it will be interesting and probably a little trying for him and the kids to adapt to one another. They will be fine, though. Things just won't be where I normally put them, and I will be searching for stuff when I move back home.
Ivee will miss them all. She already ask everyday weekday where they all are. She knows they are at work and school, but she enjoys when they come home. She is missing going to school as well. Hopefully we can make some of the last weeks of school in May.
I've been trying to decide what all I need to take with me when we move up this time. From previous experience, I recall coming home with a lot more than we took with us. We were lucky that all of our stuff fit in the van that time. I packed it just so that I could get the 3 kids in the car. It was interesting. The weather in Memphis should be much more pleasant to live in than last time. We are looking at Spring weather instead of July/August weather, which was in a word...miserably-hot!!! I thought LA was hot, but at least we have a breeze here. It was a beat-down-on-you-no-relief-in-the-shade heat that summer of '07.
We do leave this Tuesday for Radiation Mapping and MRI scans. Hopefully will be home Thursday. We'll then have another week home before going up for the radiation dosing. Ivee should be well enough to go to church and other places by this next weekend. We are going to have to find some time to make it to the movies before I go. So many films were released since our hospital stay, and we wanted to see too many of them. It never seems to fail. You don't see anything good at the movies for months, then all of a sudden everything that comes out looks so good!!! We did get to see one movie yesterday. Ivee was feeling great, and our oldest, Brittney who is the best big sister and babysitter in the world, said she was comfortable watching her for a few hours. She is wonderful with Ivee, Ivee adores her, and the medical stuff doesn't scare her in the least. I showed her how to use the feeding pump one time and she has it down! The kids are wanting to see a new movie that came out as well, but Ivee won't be up for watching it. Guess we'll have to find another babysitter for a night so we can take the oldest two out.
Well, I suppose that is all the news for now. Pray for safe travels, and easy procedures this week. God bless!!!!
I believe we are all coming to grips with mom and Ivee leaving soon. I keep running through my head what all I need to show and tell Emmett. He doesn't know much of our daily routine, so it will be interesting and probably a little trying for him and the kids to adapt to one another. They will be fine, though. Things just won't be where I normally put them, and I will be searching for stuff when I move back home.
Ivee will miss them all. She already ask everyday weekday where they all are. She knows they are at work and school, but she enjoys when they come home. She is missing going to school as well. Hopefully we can make some of the last weeks of school in May.
I've been trying to decide what all I need to take with me when we move up this time. From previous experience, I recall coming home with a lot more than we took with us. We were lucky that all of our stuff fit in the van that time. I packed it just so that I could get the 3 kids in the car. It was interesting. The weather in Memphis should be much more pleasant to live in than last time. We are looking at Spring weather instead of July/August weather, which was in a word...miserably-hot!!! I thought LA was hot, but at least we have a breeze here. It was a beat-down-on-you-no-relief-in-the-shade heat that summer of '07.
We do leave this Tuesday for Radiation Mapping and MRI scans. Hopefully will be home Thursday. We'll then have another week home before going up for the radiation dosing. Ivee should be well enough to go to church and other places by this next weekend. We are going to have to find some time to make it to the movies before I go. So many films were released since our hospital stay, and we wanted to see too many of them. It never seems to fail. You don't see anything good at the movies for months, then all of a sudden everything that comes out looks so good!!! We did get to see one movie yesterday. Ivee was feeling great, and our oldest, Brittney who is the best big sister and babysitter in the world, said she was comfortable watching her for a few hours. She is wonderful with Ivee, Ivee adores her, and the medical stuff doesn't scare her in the least. I showed her how to use the feeding pump one time and she has it down! The kids are wanting to see a new movie that came out as well, but Ivee won't be up for watching it. Guess we'll have to find another babysitter for a night so we can take the oldest two out.
Well, I suppose that is all the news for now. Pray for safe travels, and easy procedures this week. God bless!!!!
Thursday, March 03, 2011
Today I am feeling the weight of what is to come. Ivee is a fighter, but putting her body through another round of radiation seems just so unfair. She did amazingly well during the treatments (especially in comparison to chemotherapy), but radiation is just like poisoning the body as well. You just don't poison the entire body. Her little head is already so full of scar tissue thanks to multiple surgeries and 1st time radiation. Here we are, once again, having to damage her brain, tissue, veins, brain stem, all because of this disease of cancer. She already has so much she has overcome, but still has so much to still overcome. God I am asking that your protect my babies head, brain, veins, tissue and brain stem from the devastating effects of this treatment. That you restore her body to health, and that you rid her once and for all of this disease! I Jesus Name!!
....Jesus told them. "I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, 'Move from here to there,' and it would move. Nothing would be impossible." (Matthew 17:20
....Jesus told them. "I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, 'Move from here to there,' and it would move. Nothing would be impossible." (Matthew 17:20
Wednesday, March 02, 2011
News about the News in 5
1. Ivee is doing well. She has crawled today, played with my friend Cathy while I went to the grocery store, has begun to talk a little louder and a whole lot more, and she used her walker tonight. She just came walking down the hallway to the kitchen, surprising and scaring her mother all at the same time.
2. Her neck "wound" (which I will not share the gross details of) is beginning to look better. Still redish in the skin around the suture and "other stuff" but it is not getting worse. We will continue to clean it as we have been and let it air dry.
3. I heard from Make-A-Wish today. We have only been trying to get together on this interview since the end of December, and YES it is March. We were all finally able to meet next Thursday, March 10th...UNTIL....
4. Christy, Dr. Merchant's nurse from St. Jude called. Dr. M wants us back up there next week. Sooo....once again, I can't meet with Make-a-wish which means I can never make this kids wish happen!!!! (Done Venting)
5. This means that next Tuesday I will once again leave for Memphis. We will do her radiation mapping/planing scan on Wednesday and her MRI on Thursday, then come home. He will give us a week at home, and then Ivee and I will be moving up the weekend of the 20th, I assume (date wise). This means that she and I will be in Memphis during the kids Spring Break and Easter. Guess their coming to see momma and Ivee for that week. This would have Ivee and I moving home the first part of May.
WHERE HAVE THE FIRST 2 MONTHS OF 2011 GONE??!!?!?!?! Seriously, It's March? I guess time flies when your world goes into a "loopty-loo" again! Now, if only the time in Memphis will go that fast. At least I know what to expect this time, and I am looking forward to being able to minister to families who may be going through this for the first time. I'm actually a PRO at this now....how sad : (
So, as you continue to pray, and thank you for your continued prayers and just your thoughts of us throughout the day....Pray that we can finally meet with Make-a-wish and get that rolling for Ivee. Pray for our trips to Memphis and our time apart from family. Pray for us financially. BUT our BIGGEST prayer....PRAY FOR NO SIDE EFFECTS FROM A SECOND DOSE OF RADIATION!!!! This is a huge consequence of 2nd time dosing.
God bless you all and thanks for putting up with me.
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