Meguires Web Page Happy Rebirthday Baby

2 Year POST TRANSPLANT YEAH


Welcome to Meguire's web page.WE WENT TO DISNEY YEAHH! This web page has been set up by Josh & Christie (Mom & DAD)to keep our family & friends updated on Meguires condition.

Meguire was diagnosed on June 4,2003 with Acute lymphoblastic Leukemia or known as "ALL". As you all know this was a huge shock to the whole family & all of our friends , I have to tell you the support has been tremendous & we really appreciate it.

Meguire went through treatment and he had so much to go through as he was in and out of the hospital days at a time. When he was first diagnosed he had a Hickman port put in which is normal and he had so many problems with that port, He had several blood infections which ended us in the hospital days at a time, He had that port in for 6 months then one day when I was doing his cleaning of his line which was a pain in the butt, For those of you that have had to clean these you know what we mean, we had to clean it every other day, then one day while normal cleaning the port fell out so we then decided to have that one totally removed & the port put in that is put under the skin, which is called the(medi-port), and that has been a blessing since he has had this medi-port put in back in November,2003 he has not had any blood infections since the new port has been in .So then things started getting a little bit better he finally made it to maintenance and we thought we were home free , We had Make a Wish foundation come out & took Maguire's wish , which was going to be a Disney Cruise , we had everything set up to go on the cruise July 31 2004 our bags were packed we went out & bought all new vacation cloths for the entire family, We were so Excited we as a family have never been on a vacation so this was going to be great.

Then on June 14,2004 we had our first spinal tap in the maintenance faze when 2 hours later after the normal spinal tap , Meguire's doctor called and talked to Josh and had told us the worst news that we could have taken Meguire had relapsed in his Spinal fluid and we were going to have to start new treatment and Radiation and possible bone marrow transplant. The relapse means that the Leukemia cells have went into Meguires spinal fluid this was the first time Meguire has had the leukemia cells in his spinal fluid & a Early Relapse is not good . So now as you can Imagine this very upsetting for us knowing what Meguire was going to have to go through again but worse. We meet with the doctors & they explained that treatments were going to be much more intense & they wont stop the drugs he needs even if he does get sick , So we then started having weekly spinal taps and very heavy chemo as we still are , We then had to go through a faze of twice a month getting a chemo called ARC for 3 days straight in the hospital so we had the first set of ARC given & he got really high fever's & was real sleepy.Then 2 weeks later had to go in again when this time his fever on day 2 shot up to 104 and they tried Tylenol no luck , When I was helping the nurse to get his blood pressure he then started having seizure's and of course we were very scared at this point because seizures run in Christies family at young ages .So with his fevers sky high & no medications bringing it down the Immediately stopped the ARC chemo & put him on a Cooling blanket this is a Rubber mat they lay under you that's hooked to a portable air conditioner which runs VERY VERY cold water through it , needless to say his poor little teeth were just chattering away , His fever finally broke about 10:30 pm & he did have one more seizure in this time frame.Now the next day after the fever broke Meguire was back to his ornery self he was up playing , teasing the nurses , watching movies , talking on the phone & beating up he brother , So the next day Because of the seizures we had to meet with a child neurologist and he put Meguire on Keppra which is a Epilepsy medicine. They did a MRI scan of his brain & A EEG , thank GOD everything came back normal now he is still on the Keppra just as a precaution , hes also on a shot called neupogen , We have to give him this daily in his leg or arm we let him decide to keep his blood counts up due to the ARC which is a very strong drug with allot of different side affects .Well this brings us to our current status & just 2 weeks after all this ARC problems he's back up & running around. I`m telling you what this whole time Meguire has been on Nemours drugs & in & out of the hospital , through the steroids HE HAS NEVER BEEN DOWN he is the happiest kid EVER if you get the chance to meet our Meguire he will put a smile on your face from ear to ear , he is the most caring thoughtful , ORNERY , funny , playful kid ever he is ALWAYS HAPPY & LAUGHING , its amazing what these children can take if it were any of us adults I just couldn't imagine.

The biggest thanks has to go out to the Hematology/Oncology clinic and Dr's C & J for all that they have done for us and Meguire especially, we will be forever greatful,They are always there when we need them no matter day or night.We would also like to say a very special thank you to St Vincent Mercy Medical Center here in Toledo Ohio , our medical insurance has change 3 times due to Josh`s union contract with work , the latest insurance is now 90/10 & St Vincent Hospital is a out of network , we called our insurance trying to get waivers & they turned us down so you`ll never guess what St V`s did they stepped up knowing this was a prior condition & we cant change doctors in the middle of treatments they accepted whatever our insurance pays them & will write off the rest HOW BEAUTIFUL IS THAT , we also had an outstanding balance with them & they also wrote that off , YOU HAVE NO IDEA how much this took off our shoulders , So to ST V`s thank you from the bottom of our hearts your a GODSEND TO OUR FAMILY, We would also like to say Thank you to all of our friends and family who have been here through everything to help us with.

We are now awaiting the bone marrow transplant we are a go & we will be doing this around December, This is going to be VERY hard on us because Meguire & Christie will be staying in Columbus 2 1/2 hours away for 3 months. Josh will come down every weekend & stay Friday night through Sunday afternoon then back home to be to work on Monday , We cant afford for Josh to take off work which upsets him not to be with Meguire every day but he understands Well Meguire had his Bone Marrow Transplant on Feb 2,2005 and is doing wonderful he had some hard times through tranplant but he also did so well the Dr's had told us in the begining that at a minimum our stay would be 45 days so that is what we expected but not our little guy he flew through it and got discharged to the hotel after only 27 days post transplant the dr's were all amazed at how well our little guy did he is just amazing and my hero. Also after about a year in a half we have finally been given the name of the man who saved our sons life with his bonemarrow and his name is Ali N. from Boston,Ma and we are awaiting a photo when we receive it we are going to post it on the site because without this man we don't know where are little man would be right now but thanks to him he is happy and healthy 5 year old boy.

Please sign our gust book so we can visit your page thank you very much for stopping by , Meguire says Hi!!

We will also be updating pictures weekly or as often as we can.

Normal Blood Count Range
White Blood Cells (WBC): 5,000-10,000
Absolute Neutrophil Count (ANC): over 1500
Hemoglobin (HGB): 11.5-13.5
Hematocrit (HCT): 34-40%
Platelets: 160,000-500,000


Here are some new pics from our baseball game at the mudhens game and some pics with of course Guire's cars by the way we counted them 1838 was the final count of just matchbox/hotwheels can you believe it and still counting cuz you know he will get more.>




















HERES A NEW VIDEO OF MEGUIRE & DOMINICK ON BUMBER CARS THISH WAS HIS FIRST TIME EVER!!.
Click here to see Bumpercar movie






These pics are from our Make a wish TRIP to DISNEY World we had a great time. A Very Special Thank You To everyone who made this Happen Make A Wish , Give Kids the World , Disney thank you for the time of our life.


























So that was our Disney trip we have tons of pics but these were just a few anyway check back for updates>

Journal

Wednesday, July 4, 2007 6:40 PM CDT

Hello everyone i know i know it has been 6 months since my last update but my theory is always no news is good news and Meguire is doing wonderful he is getting so big and so smart. He is going to move on to first grade with a little assistance. No big deal though he loved his teacher and he learned so much stuff this year that he didnt know he can read ad his writing has improved tremendously. We are working with him so he can learn to tie his shoes and he is slowly learning to ride his bike without the training wheels. We went for his first clinic visit since December a couple of weeks ago and all was clear and doing wonderful. He is just enjoying the summer and having fun with his big brother. I will try much harder to update more often but summer is very busy for us this year lots of camping and going places so everyone bare with me. Everyone give your kids hugs and kisses nightly your kids are precious and they are a gem so love unconditionally.

The Smith family

Read Journal History

Hospital Information:

HOME FINALLY

Toledo,Oh

Links:

E-mail Author: meguiresmith@buckeye-express.com

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.