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:

Childhood Cancer Research - $6.2

Other Research - $143

Prevention - $177

Detection/Treatment - $129

Patient Support - $275

Management - $63

Fundraising - $222

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) 

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......

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"

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.

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

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. 

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.

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!!!!