4/28/11

Cameron has come to see john today for music therapy. Transplant went well yeasterday and the boys are haveing some fun time.

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4/24/11

Today they start the Melphalan. They call this one a Puckey Chemo. Wow what an Easter gift this is. Please keep john in your taughts today. We are hoping this will go well for him. He is been doing well so far so i have not had much to update.

His big brother Cameron comes out on Tuesday. Then Wednesday they will do the transplant. This will be a good day and a hard day all in one. Not sure yet what time Cameron goes in to sugary . Hope to give another update tonight .

4/18/2011

Just some quick news. Chemo back on tommrow at 10am. Do not for get bandana day on 4/20 . NEW TRANSPLANT DAY 4/27.........

4/17/2011

It has been such a week now is the first i had for updates. We started in room 3c7 baby was doing good and started chemo. Oppps road bump baby has/had Roto virus. Had to stop the chemo. Also had to go on iv fluids only as every thing that went in came right back out. 

We are starting to do ok and tommrow we talk about when the chemo re starts. We are now in room 3c13 its a bigger room. We will be here now for 2 to 3 months since lil one got sick. He is on isolation. I will keep every one posted on how things are as i can. We is back on pediashure n jello. wow what a diet .


 If any one can thing of any fundraiser they would like to do or wants to make a donation to help us be here with him please contact me ... You can sand him ecards on chops web page ....

4/12/11

Ok so heres whats up. Lil man was in the or from 8am-3pm . He had a 2nd central line placed . He did awsome but was very tired . He got to his room he is in 3C7... If you want u may send e cards. Chop also has a small on line gift shop that u can send items like toys,Food Vouchers for parents ect.. He starts moor chemo tonight. 
We are taking turns betwen the ronald house and the hospital with the shuttle rides each way. As much as we bouth want to bere there it dose not work well over night.
Cameron had his first train ride home after blood work for his brother...

4/10/11

Ok so baby was sick today as well. Hopein this is not a new helth isue and that its only a sideafect. We gave out some of the i support john bands. Van is ready and we will head out for chop tommrow.....

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4/10/11

Up at 4am with a sick kido . Baby started with trowing up yeasterday. Called chop the called in zofran. Yayaya a nother med. But if it helps its worth it.

Hope today he can hold things down we have to pack to go back to chop. We hit the road monday...

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4/9/11 get ready to send photos

We are haveing a Bandana Day for Baby John on 4/20 so if u have on put it on for the day . This is not an offical one on there weba page just something we taught would be cool to do.Send us ur photos please ….

 They  were created by friends of Alicia’s because of an experience she had when she returned to school after chemotherapy treatment. The chemotherapy had taken her hair but not her spirit; she was determined to finish school and wore a bandana to cover her head. On her first day back, four different teachers asked her to remove her bandana, not realizing why she was wearing it. Alicia was embarrassed and devastated and so were her friends and family.

After Alicia lost her battle with cancer, her friends decided that the school needed an event to raise awareness about the struggles cancer patients face. Now, Bandana Days are held in elementary, middle and high schools across the country to raise awareness and money to help ARVF fulfill our mission.  New this year we are Banding together for the future.  Our Friendship Bands are made from our bandanas by volunteers and raise awareness of hospitalized teens. Our teen kits each contain a friendship band.  These friendship bands can be sold along with the bandanas or alone. Please contact us if your school or community organization is interested in organizing a Bandana Day/Friendship Band Day. info@arvf.org.

4/6/11

So we r still wating on a med that needs the ins to give a pre auth. Cant pay out of pocket its over 1000 for just a week of it. Gez this stinks

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4/5/11

Ok so its not much news but babys green bands will be in this week. We go back to chop monday cameron goes with this time for blood work.

Baby will go in to sugery tue to have a 2nd central line put in thean moor chemo will start...

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4/5/11

We r home for a week tryed to pick up one of babys meds but we
need aprovel from the ins it sucks when a kid can not get the meds he needs.

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4/3/11

Ok so once again we have hives from the meds. Lets hope all goes well tonight if so we will come home for one week . We will not be aloud any visitors  when we are home. I am sorry or this but drs orders we need to keep in a isolate room. No feavers so far today so all is well so far with that..

4/2/11

Ok so baby John did not get sick today on the chemo. BUT he broke out in a rash and hives. They are giveing benadrill we will go from there. If he is fealing ok later he will get a 1hr block of time in the play room.

He likes to get tangled in his lines right now we has 3 lines going in to his broviack.. so its very interesting. No fevers so far today so this is a good step. We got a email from Gabes Chemo ducks today they want to use his photo n storie in there news letter so if u want a copy u need to go over and get on the mailing list...

4/1/11 campath

So today was not good the cemo made baby very sick again. Hope for a good tommrow. Only 2 days left of the first round of cemo.

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4/1/11

They are getting ready for the campath for day 2 so im posting some cards . These r the ones who dont fit on the door... moor to come later

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