Can you look at this face and say not my kid, not my problem? Is it that hard if you cannot donate, even enough to skip tomorrows $5 coffee but to share to those who could. To ask others to share, to hand out fliers, talk to bosses anything?
Nicholas got another round of Chemo yesterday. Finished another round of his chemo pills the weekend prior. Counts are stable. His liver count dipped 3 points which concerns me given the warning of liver failure on his chemo pill. Always loving every day God gives us as a whole family!
Tuesday Nick will have chemo if his counts are good. His ANC was 5850 but his platelet count was only 115 which needs to come up atleast 60 to minimum allowance for Chemo. This should also be the start of round 10 of 12 rounds of Temodar. This also means we are that much closer to being done with treatment. Would love to do an End of Treatment Party but we shall see what we can do bills never stop.... Next round of MRI's are in July. Thank you to all our supporters thus far. Keep sharing keep asking maybe we can get some good coverage. Still planning to put on a fundraiser just gotta hammer out details.
Looking for good thoughts and prayers for Nicks blood work appointment tomorrow. Allot of the time after 5 days on Temodar his platelets plummets but we've had some bleeding on and off from random places today.
One year ago this is where we were. Last night taking a shower it hit me. One day my son can go from running in the yard playing then get a head ache throw up go take a nap and feel okay. The doctors saying its an infection possibly bacterial. Then in surgery for 6.5 hours to find out half his body doesn't work. A kid who loved to help work on cars, take them apart, dig in the dirt play with sand wanted to play with construction machines. He would find any excuse to go to junk yard to watch the machines. It was like a punch in the gut all over again. Feels like being told its not an infection there is a large mass on your sons brain. I can't believe its been a year. Now to watch him look out the window and know he wants to go outside but he wont ask. He wont ask because it means pushed in his wheel chair or pulled in a cart because you can't pedal with 1 good leg.
Nick after surgery
Nick had chemo today. His counts were really good. Liver count is still normal. His birthday slash 1 year party is this Sunday.
Got his hair cut and looking good. 7 days till his birthday.
Today we (Nick) had a lab appointment for blood work. He just finished his chemo pills but blood work wasn't horrible. Need to keep an eye on his liver counts. April 13 not only does he turn 9 but it marks 1 year since diagnosed. Even on days when he's down because he doesn't feel good life today he's felt nauseous all day, our when he can't run and play like he use to, it kids won't play with him he still tried to find something to laugh about. Church one day they did an experiment kids were supposed to meet kids they never met before, they all avoided him. Broke my heart but he shook it off and pretended hehad fallen asleep. He remind me all the time no matter what you can find something positive to focus on. All the times he could complain or lay down and use it as an excuse he doesn't.
I know I am over due for an update. Life has been crazy. Nicholas has a period of time where nose bleeds were just coming every day and some were truly bad. Now we are 16 DAYS away from not just his birthday but 1 year since diagnosis. He is such a strong kid and fighter. PLEASE share our link you know people or you know people who know people that can help. We just need to get to them!!
Okay so tomorrow I plan to update some pictures. Maybe even see if it'll let me load the video from almost a year ago when he sat up the first time. Things are crazy hectic. Emotions and CBC's have been up and down. HOpefully with some warmer weather things will get better. Nicks Birthday is April 13th almost the 1 year mark (same day) of diagnosis so there is an address listed to send cards or anything for him too!! Thank you!!
Now we have @Themmidwestboys in our battle feels like our chances are growing! Need to find those who can help and just wait.
We have not given up. We're still here please share. We indeed understood people were spending for the holiday.
Never give up! We need to just keep Nicks link spreading and keep sharing. We're bound to find the people that will help.
This money is also Christmas, gas for getting around, vehicle repair, kids needs etc
POST POST POST!! We have to get the coverage and it seems when posts are overly shared or gone viral they get news attention. Maybe this is what we need to do. Take to twitter, facebook and pinterest and just blast it like crazy!! I hung some fliers and a few locations they are missing. If anyone wants to hang fliers I don't know if you can print them but I can either send you one, email you one or something and make copies or I'll make copies and snail mail them. I personally sent letters to a few places like Gas Monkey Garage and Chive Charities Even if all someone can do is post fliers I'll take it!!
Lets get the word back out there. We keep posting and sharing and hanging flyers we are bound to find someone!!!
Been 23 days had over 270 visitors and over 400 shares on fb 2 on twitter. We need to find out why people are just glancing by and not helping.
Feels like we are right on the edge of finally finding the community of people we need to get this ball rolling for my son !! Did you know less then 5% of money donated to National Cancer research goes to childhood cancer research?
Remember even if you can't donate pass the link get it to those that can!! We appreciate all the help we can get!!
Praying hard today that good people find their way here and can lend us a helping hand financially! Hes a great kid and deserves so much!
Nicks top fav shows Duck Dynasty!! WWE (notice the Cena shirt!!) He also watches Total Divas, Dog and Beth and tattoo shows like bad ink.
This is a very important cause!
End of February through March and into April, Nicholas had complained of headaches, ear aches, sinus problems, threw up every time he ate his eyes hurt and just seemed like everything was going wrong. He would randomly fall his balance got so bad he refused to even try to ride a bike. He even randomly fell down steps. His pediatrician kept brushing me off saying it was growing pains. Then when we got him in it was double ear infection, sinus infection, strep throat and even possibly needed tubes in his ears.
April 13, 2013 he turned 8 years old. That night we were in the E.R his vomiting wasn't any better, his headaches were more intense and he almost seemed to have a mini seizure. The E.R doctor said to take him home give him more Motrin for the headache and finish his antibiotics for the sinus infection and follow up with his pediatrician in a couple days. I looked at my son finally asleep in the fetal position on a gurney coat over his eyes hand on his ear looked at the ER doc and said NO! This isn't a sinus infection it's not growing pains, something's wrong. An 8 year old boy doesn't go from playing trucks in the sand riding his bike around the driveway for hours and wanting to help take cars apart, to sleeping almost 18 hours a day, unable to concentrate, throwing up every time he eats crazy migraines and being super sweet to snippy and nasty. Not to mention sinus infection wouldn't cause his left eye to go lazy!! I told him if he discharged us I'd be right back.
So, he ordered a CT scan. Seemed like it took forever for them to come back. I was pulled into a room and told there was a sizeable mass on the left side of my son's brain. He was being admitted.
We spent April 14th getting tests, nausea meds, and popsicles and watching movies. That night I crawled into his bed and held him through a headache turned seizure, then he slept.
April 15th surgery. Time would reveal his left side didn't work. With therapy, he got minimal use of his left hip and knee. He can't move his ankle or toes. He can lift his left arm but that's about it, nothing from elbow down. He was left handed before surgery. He is learning to write with his right very well. Vision in his left eye is seriously diminished and will turn to use his right. Things have been hard for him but he hardly complains. He so wants to go out and play and get dirty like he used to and doesn't really understand why he cannot.
Nicks diagnosis is Glioblastoma Multiforme stage 4, Stage 4 Brain Cancer. He is at Toledo Children's Hospital Floor 5 Oncology every week for either blood work or Chemo Therapy. He started out by having to undergo 33 rounds of radiation. He is on steroids to control swelling and fluid buildup as he does not want a drain put in his head he has become very self-conscience as the steroid and not being able to run around has caused significant weight gain. He requires a wheel chair as he can become fatigued or joint pain. He has a standard buy off the shelf wheel chair which is causing him to get a curve in his spine and a fitted one is required. We live in a very old home which is in need of repairs and updates. We need a wheel chair ramp on the house for him and somehow obtain a wheelchair friendly vehicle. On top of this, we have bills adding up daily.
We understand many people are on hard times but, understand,anything helps and is so very, deeply appreciated!! We also use PayPal through: toledosweetie69 @ yahoo.com. We have not set up a bank account where people can donate yet. My son spends a lot of time left out of things as not much is available for one handed children. We strive to enrich his life as much as possible. For anyone that would like to send cards or anything we do have an address we are using for mail. 4140 South avenue Toledo Ohio 43615. Again anything can mean everything! , - See more at: Fighting this takes so much out of him. Sadly less then 5% of any money donated to Cancer research goes to Childhood Cancer research. When I say he is my hero and where I draw strength i'm 100% serious.
For those that have issues with fees assocaited with go fund me he has a page on you caring page.
This kid loves Duck Dynasty, Fast n Loud, WWE, Bad Fish racing and a few other things. His life use to be outdoors, playing in the dirt, helping in the shop loved big machines and just being a boy. Now that is greatly hindered. Even riding his quad bike is hard because of the weakness in his left leg and inability to use his left arm.
we understand our number wont build the house my son needs but were afraid the full number will scare away people from helping.
Today we had our 3 month MRI. He got Zofran ahead of time but when they added the contrast it still made him throw up. I don't understand why with Zofran he still got sick. Poor baby!! Got some new pictures I have to transfer onto here and I can share.
Happy New Year Everyone!!
So far things have been pretty good. We have rough patches when its Temodar time. We still do not have use of the left arm and pain spikes in the left leg and foot at times. His next MRI should be in January if my thinking is correct. Crossed fingers prayers and the whole nine yards!!
Here is a cute picture of some Christmas items he received. Very good looking man if I do say so myself!!
Happy Saint Patricks Day!!
We had to spend most of our day at the hospital today. Arrived at 9am. Got accessed and blood drawn then waited. Waiting always seems to take forever!! Blood work came back and all his counts were low so rather then chemo he got a transfusion for plateletts. We'll be back next week and see then.
We recived a letter from the people that run the clinical hes on that reports have come in of liver failure so they are giving people the option to pull them off Temodar (Temazolomide) or leave them on. If I take him off then his treatments are done and I think hes off the clinical. We reviewed his blood work over the last 8 months and his liver counts havn't changed so we are going to remain on the last 4 cycles of the temodar unless they change then I will not do them again.