3/31/11

Today was a very long day for all of us. Baby started the campat today. He did ok the first 1rh but then started to get very sick. He threw up a few times. They got some meds in to stop that than he spiked a fever. Moor meds and the fever broke.

He did not eat much lunch but i don't blame him. I would not want to eat if i was him. He is still drinking so we have that on are side. We just ordered dinner so it shuld be here soon. Then off to bed for a nother round of the meds in the am . We have 4 moor days of strong meds than some rest.

Thank u every one for cards he got 31 today and i think we will get moor tommrow...

3/3o/11 bed time

We are trying to get lil one to sleep it is not working . He seams very hiper tonight not cool... Hw just had his first dose of pre meds. Cemo starts in the am so i have put all are friends on a mission. Tommrow is cards for baby day. All u need to do is go to www.chop.edu 1/2 down u can send a free card to baby to show your love. U will need his info room 3c06  John Merchlinsky.. This is FREE so please show the love all cards will be taped to his door and a photo will be posted in a few days ...

3/30/11

Hi every one we are at Chop. Baby is in his room and doing good. Tonight we start the pre meds and Tomorrow the campass. "thats the cemo" We will be here 5-7 days depending on how he is doing.

There is a on line gift shop that u can send baby things or you can send him a card for free ....

http://www.chop.edu/  it is listed under send a ecard. We will tape all cards to his door. We would love for him to cover the door with love. There is also the link to the on line gift shop there .

3/30/11

We made it to chop after a much needed nights rest. We are checking in but it may be 1 pm un till we have a room.

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3/29/11 Update 2

We got the call from Chop we check in tomorrow at 12:00. The good news is we will be both staying in his room. Here at the house they wanted him to relax and have a good time before tomorrow. He was given tickets to the Phillies pre season game with indoor seating.. Not sure that he will understand the game but it was a nice way to say we care...

We will be leaving here soon to go there than back to the house for the night... Hope to post some photos and let every one know if he liked it or not ...

3/29/11

We woke up not knowing how today wood go. We got a call from the Ronald McDonald house. Thats where we are now. Things are going ok and they are very nice here. Baby got a new toy when we got here. Are room is huge. We have the room for 7 days to start and we will go from there. Baby checks in to the hospital in the am if all goes as plan...

Lil man is cranky right now so i must go and tend to him will try to post moor later! ?

Baby John sends his love...

3/28/11

Today was a adventure. We got to Philly and had to fiend the Salvation Army.They are very nice there and it was good to get to meet them. We found out when we got here that once again the Roanld Mcdonald house was full. The hospital has put us up at the Sheraton for the night.There was a little confusion when we got to the hotel but it got sorted out in good time.

Chop got every thing that was needed from GMC today . This helps to get things where they need to be. One of 3 things happen now they get him in tomorrow or we stay here one moor night or a room at the house opens up and we go there for a night...

Baby is doing ok he got a lot of sleep today. So I do not think he will sleep tonight but we will see.

3/27/11 Thank you to the East End

Thank you to every one who came out to support John last night. I have never seen so much support in one room at a time. The funds raised last night are a very big help for are little man. For every one that would like to stay up to date on every thing he has a blog. You can go and enter your email to get updates every time something new is posted . If you are reading this post on the blog just put in your email.... 

Please pass this blog on to all your friends. We welcome on line support as well... We would love to build awareness and keep every one who has helped in any way up to date on how every thing is going .

3/26/11

Today is one of the benefit events for Baby's fund.

Today  MARCH 26 FROM 9PM TO MIDNIGHT @ THE EAST END IN COAL TOWNSHIP A $15.00 BENEFIT FOR A SICK LITTLE BOY JOHN MERCHLINSKY IV...BEER,FOOD AND LIVE MUSIC BY BLIND BY SUNDAY. HE IS THE GRANDSON OF ONE OF OUR OWN. COME ON OUT AND HELP THE THE LITTLE GUY. TELL YOUR FRIENDS...

3/25/11 not a good day

So after playing phone tag we run in to a stop sine. It seams to be not all the test are back yet. Well this is what shows for last min tests.So now we are looking at the admission date of 3/29 or 3/30... If  Gmc gets the test to CHOP in time. Second on the list is that he will be there for 5 days , They will send him home for 11days than be back there for who knows how long. They where trying to get us at the Ronald house for the 11 days but that's not gonna happen . Whos knows if we will even stay there at all at this rate.


 I have to call monday and i they are not ready i have to call Tuesday.This also will push back Cameron date for the marrow harvest.....

3/24/11

Wow all i can say is what a day we had . For the second day in a row . We where at GMC today 830 am-330pm. We had moor test today they included a CBC,CT Scan with dye,Eco and EKG. Now we are hoping they get the results to chop stat...
John is home and doing well after 2 long days. Chop called and may have to push stuff back by 2days but we wont know until Friday. The Ronald McDonald house dose not know if they will have a room for us Sunday night so we have to call in the am. Why dose there need to be so much stress???

3/23/11

Wow all i can say is what a day we had . We woke up to snow and tried  to make it to geisinger 1/2 we had to turn around could not see do to the snow. We called GMC they pushed his time back by a few hrs. We got there and he had to get sedation. They had alot of work to do 4 teeth removed, A good cleaning,Fluoride treatment And his teeth got reshaped.
Johns mouth is sore and he is not aloud a cuppy for 2 days they are afraid that it will pull out the clotting this should be fun .. Now on to tomorrow another long day at GMC he has a ECO then 5 ct scans . Check in time is 915 hope to be out of there by 4 but who knows..

3/19/11

The phase one transplant day is 3/28 so its back to chop very soon
The phase 2 date is 4/20 when they take the marrow from Cameron .

3/3/11

We received the call today Cameron is a match . He will be his brothers doner....

2/14/11

We got a call from the transplant team . We have to go to chop on March 9th to have the consult with the transplant team. It looks like the transplant date is gettin closer

1/29/11

John had a CT scan on Tuseday Feb 1st and Lung surgery on Feb 14th. He will be at Geisinger for this recover time is 1-2 weeks. In hospital with 6 weeks at home.
Next will be the Bone marrow transplant at CHOP no date set until he is recovers from surgery. All we know is this will require 5 Months at Chop

Back to day one

John is 19 months old and suffers from Severe Congenital Neutropenia.

He will under go bone marrow transplant in March . John has already had 2 bone marrow biopsy's done as well as 2 blood transfusions.

He has undergone a lot of other test as well .

Neutropenia is a blood disorder that can affect anyone. Some people are born with it. It can happen after a viral infection. In some cases the cause can be a side effect of a drug, or exposure to certain poisons. People can get neutropenia when treated for cancer with chemotherapy drugs. Sometimes it happens for no known reason.

Severe neutropenia can lead to serious problems, which require prompt care and attention as the patient could potentially develop a bacterial, fungal or mixed infection at any time. These infections can be life threatening when the patient is persistently severe neutropenic and it is therefore important that if the patient develops any signs or symptoms of an infection, then he or she should be seen by a doctor as soon as possible and treated with medications to fight the infection (such as antibiotics).

 

We want to inform friends and family of his progress and reach out to others going trug the same thing we are.