I don't have words to express myself or our feelings right now. We are missing John so much already. I'm constantly reminded of how lucky we all were to be graced by this young mans presence. He's the sweetest, wisest, and handsomest brother I could have ever asked for. I have no other words.

We appreciate everyone's prayers and support.

There will be a viewing from 7-9 pm Tuesday July 12th at

Mountcastle Turch Funeral Home

4143 Dale Blvd

Dale City VA 22193

703-680-1234

The Funeral Service will be at Mclean Bible Church Prince William Campus

Wednesday July 13th at 12 noon

10002 Battleview Parkway

Manassas VA

please pray for 3:30 meeting with drs.

7/5

Hello All... I appologize for not posting anything sooner. This has been a long and hard weekend and the words to write have been hard to find. John is past the number of days that he should have been on a ventilator for and his body is still not withstanding removal. We've had 2 collapsed lungs in the past 3 days (happening a total of 5 times so far). We are not sure that the treatments they are giving are actually improving anything with John. The Dr.'s have stated that next Saturday is the last day we can keep him on the ventilator without having brain damage due to all the sedation. Please just pray for John's comfort and peace, and the decisions the family has to make through this time. Please just pray for a peace a wisdom beyond understanding.

Also, just pray for all the ways God has been moving here. We've had so many different experiences with different families and different babies... and we're constantly reminded that so many are in just as much need as us!

For those of you from Prince William -- in serving us you've served so much more! We had a special delivary of Popeye's yesterday and soo much we couldn't eat it all so we offered to share with the other family in the waiting room. We began to talk with them and quickly learned that they live in the coverstone community that Pastor Rick has been working in. Their children know and attend what Pastor Rick does. We were able to share food that day and Mom brought some food that you all have delivered to the house (as they have an abundance). So in serving us you are serving our church family at coverstone as well. Thank you all so much for your continued support. Just wanted to share briefly so you can see the way God is moving!

6/30

Quick update on John John. They had to put a tube in the left side of his chest to drain fluid from his lungs. They had talked about trying to get him off the ventilator but with this new development they are not going to be able to do that. Thank you for your continued prayers and support, for everyone whose visited and brought food by the house, and for everything else you all have done!

6/27

Last night was the roughest night John has had. They spent over 5 hours trying to get him to breath... on the ventilator. He is getting worse day by day in spite of the treatmen they are giving him for his lungs. This is a life threatening infection. They had thought they would be able to treat it... but there is always the possibility that it is stronger than the medicine. Johns tired. Hes tired of the pain. The conversation he had with mom before coming to the hospital is becomming more and more real every day. He told her he wasnt afraid of death... but he was afraid of pain and suffering. He asked her to promise not to let him go through that. We have not been at this point before. Making decisions for his sake verus making decisions for our sake so please pray for peace of mind, clarity, and guidance. John is suffering greatly and mom promised him he wouldnt hbave to anymore. if they take him of the vent he will not breath on his own. This is a tough time and your support is greatly appreciated.

6/26

johnjohn is doing the same. hes settled at Inova PICU. hes still incibated and ready to get that tube out!!!! he's pretty aware of everything going on and can respond by shaking his head or squeezing a hand. It is horrible to see him like this and hard to deal with the amount hes suffering. Thats all I can say for now. we have a long and hard road ahead of us. Please pray for the family and emotions. and obiviously fo John to be healed.

everyone is back and settled in at Inova! thank you for your prayers.

secured vebtilator with horrible looking mask! were on our way!

the transport team is here but giving us a hard time about taking him on the ventilator.. please pray! for safety

All clear! We leave at 8! Pray for Johns transport! Dad is meeting him at Inova since hell get there faster! :)

Please Pray

Please pray for a bed to be available for John at Inova PICU tomorrow morning at 5:30. That is when this hospital will call. If there is no bed available we are stuck in Pittsburgh for another day/until one becomes available. So please... we are all itching to come home, INCLUDING John. It's good for him to be able to hear other familiar voices then me and mom. So please if your up at 5:30 pray for us then... if not, before you go to bed! ;)

Thank you!!

6/23/11

Prayerfully today will be our last full day in Pittsburgh. The doctors have developed a treatment plans that is very very long in the implementation. Therefore they are sending us back to Inova at 8 AM tomorrow so long as nothing changes. John John will be flown back (via jet... ambulance to airport, jet to va, ambulance to hospital.) Mom and I will drive down, and Dad will be at the hospital to meet them -- since they'll be there faster than us. John is still on a ventilator. He will be transported directly to Inova PICU again. He will be there for a long time, a long treatment period, and we are by no mean in the clear with him. We know what needs to be treated but the time period of treating it will be long and hard. John is still suffering immensely. Mom even prayed today to heal him or take him. This is by no means the end. We're excited to be coming home, and that makes this all easier. However, John is just a sick, if not sicker now, then when we brought him up here. He's stabilized, and we know what is going on. But basically we've only just begun this battle.

So thank you for your prayers, but please continue. There are not as many updates anymore because we are in a waiting game to clear the fungus and pneumonia. So please pray for a speedy healing with that. For all you who have signed up to bring food and check in on grandma and everything like that, we would really appreciate your continued support in that way. Truthfully mom will still be living at a hospital... just closer to home. Thank you all for the love you've shown. We really appreciate it. Pray for safe travel tomorrow!

Thank you!

6/22/11

Hi All,

Nothing's been updated, because not much is new. John had his first good night last night in a while. We think it's highly due to the nurses. The past few nights we've had a rough nurse and John has had rough nights... Last night we had gentle and it was an easy and good night. The Dr.'s are supposed to be visiting with more today... but at this point its a waiting game for this infection in his lungs to clear. They did a catscan and can see exactly where the spots are... they are switching med's around to help fight it better. However please pray for this infection to clear because they said it's fast spreading and HARD to kill... and they can't take out the kidney... which is hurting John, until its gone!

Thanks for all your prayers and support. And thanks to everyone who brought food to the family over the weekend! They really appreciated it, where so surprised, and so grateful! Thank you for being so supportive in all ways!

6/20/11

God is working here! John is the same today as he was yesterday. They have been treating the fungal infection in his lungs. They did a cat scan... found teeeeeeennie tiny swelling in the brain. So they took him off the sedation med to test his responses. He was able to squeeze the dr's hand and give a thumbs up so they said he should that if it was an infection he wouldn't be able to do that and they'd see more on the scan.

We ran into another family today... similar story to the young lady from yesterday. However they are the grandparents... the mother committed suicide friday (the babies been in the hospital since wednesday and was "taken away" from her thursday. The grandfather had a heart attack IN the ambulance on the way with the baby. Child protective services has been called on them and the four year old has been placed in foster care. The had been in the hospital a week earlier with her seriously vomitting and a fever. Fever induced seizures run in the family and her older sister has them. The fever was at 101 and they requested medicine. They hospital released them saying we only give that medicine if the fever reaches 102... The next day at home she had a seizure they called and rushed her to the hospital. Then the hospital has reported them for shaken baby syndrome... even though the child had a seizure that THEY warned would happen and were sent home without medicine for. BJ prayed with him, he was clearly angry upset and confused. And after we left he told his wife that he wanted to be baptized by the same minister that recently baptized the 4 year old. She found us later to thank us and to tell us how closed off his heart has been. How angry he's been at God. That he's never had any sort of religion in his life and all he's been doing is thinking and talking about this since earlier today. She said hes calmed down and keeps saying that he trusts God to get them the babies back because they didn't do anything and he knows he's a God who gives justice. Praise Him!

Needless to say it's been a blessing to have BJ here. He's provided such an emotional break for Mom and I, and especially John. John John loves his big brother, he loves his presence, and he loves his voice. Even through the meds John responds to BJ so well and it's been a blessing to have him! He's leaving tonight (late night drive) so please pray for his travels as we all want him safe! And SPECIAL SHOUT OUT THANK YOU!!! to Kishore for stepping up big time and making it possible for us to have BJ this weekend! We needed that and we love and thank you for it!

Thank you all

6/19/11

Hey all...

So we have some good news, and some bad. The good news is we're receiving answers! Yesterday those answers weren't thrilling, but they were answers... and had us coming home the end of this week. However we received MORE answers today which will definitely delay that process.

John's working kidney (the one that came from BJ) is no longer working. It has a decent amount of "scarring" which is irreverible damage. It needs to be removed because once the kidney goes bad it does more damage to the body. This was Friday -- we didn't share because BJ was driving up and didn't want that to be on his mind on the drive. Then Saturday the Dr.'s had more results... there was a clot in the kidney. This could have happened for multiple reasons. They want to take the kidney out and section it in order to do a full biopsy and figue out what happened to the kidney. The longer they leave it in his body, the more it dies and the less use it is to him. Once it is removed he is permanently on dialysis. This changes only if he can get another transplant. However the insurance needs to approve that. Which is why the biopsy is ooooo important because it will show whether what happened is something John's body will do again, or because of a virus. (One option is that he had a virus at first and his body created antibodies to fight it off... those antibodies recognized his kidney as foreign and began fighting that). IF that was the case, he could get another one potentially.
So that was the end of yesterday and with that they were planning on taking the kidney out ASAP which would be tomorrow, monday morning.

However, today we received some more news... There is a fungal infection in his lungs. He can't breath on his own. They cannot take him off the ventilator (which needs to happen for the surgery) Also, if they were to open him up with this infection it would be life threatening. Therefore we most likely will not be coming home this week. However they are trying to treat it as fast as possible because time is of the essence when it comes to removing this kidney.

So allow me to share another john john story from a previous hospital visit. His mom, the nurses and doctors, bj and I (us more as observers) were having a conversation in his room. And john was having a rough night... He raised his hand and said can I say something. And he said I feel like this is when I play my video game (i can't remember which one he said...) and I'm doing so good and I think I'm at the end of the level and a secret door opens, and It's like starting all over. Do you understand my metaphore. -- NO JOKE! and one of the nurses said... noooo? And John frustrated that she didn't get it said Everytime we feel like were at the end, like we have an answer, it's like starting all over.

That just made us all stop in our tracks. And mannn that is what I feel like today. They told us we were going home soon... and now we don't know. But pray for John. What's going on in his lungs is very serious for someone on so many immunosuppresent (sp?) medicines.

Thanks for all your support!

6/18/11

Hello Family!

Quick update. We've had some visitors. Thank to our wonderful friend Scott who drove all the way from VA just to be a support to mom. Got her outside the room, laughing, and talking about everything but this. It was a HUGE blessing for him to be here. And Brother/Hubby/Son is here for the weekend which of course makes everyone happy! When he spoke to John it was the biggest response I've seen John give. BJ asked him something, he nodded, he blinked his eyes, he'll lift his tounge if asked (weird, but they drop his med's under his tongue to dissolve.) It's just been a nice change of pace.

As far as John goes, we've gotten some results back between last night and today. More results are yet to come and something in my spirit is saying to hold off on sharing this news. So please continue to pray for the rest of the results and the actions that need to be done to treat it. Also pray that nothing is missed seeing as these results do not necessarily explain everything. But Praise God we are getting some answers, which we've been so desperately asking for. Again, I know you all have been praying so hard for us and are just as eager to know the results... but please be patient. I'm trying to follow Mom's lead, after all, it is her son ;) So please do not stop praying, and check back tomorrow evening for some more updates!

So as we've been here, we've seen so many people in completely desperate situations. Lost, searching for answers, all with babies (their babies, some old some young) that are fighting for their life. It would be wrong of us to think only of John, and to pray only for John. Let me share 2 stories that we encountered today and ask you to please pray as earnestly for these children as you do John.

I met Eyad on the elevator today. He had clearly just been crying. We got on and he started asking me why we were here. I started telling him, being reserved about details. (it's tiring to repeat the same story so many times). I asked him why he was here. He said hi s daughter age 11. had an intestine transplant. He stated that they'd been in the hospital for 5 months because of this. He continued to tell me his story, and ask more about John. Then he asked where we were from, if i had a job there, if we had a place to stay here, and if we needed money! You're first response is people don't just go around offering money. But he was genuine, knows the stress, and we in a desperate place himself. He's from pittsburgh and said he moved here recently and knows what it's like to be in an unfamiliar place. Please pray for him and his family, and beautiful daughter (he showed me a pic)

Also BJ and I were in the parking lot a few minutes ago, getting some stuff from the car. The whole thing was an act of God that we ran into her, sparked a conversation about the music she was playing, and people here are so lost that all are ready to spill their situation in hopes that someone has the answer, that someone can relate, that someone will validate who they are and what they are doing! She was telling us all about her baby Ronnie. He's two almost three, and has all sorts of heart issues. She used all the technical terms, so I quickly got lost. However it's life threatening stuff with his heart. He has valves put in and can easily go into arithmia's (sp?). They live in Eerie, 2 1/2 hours a way... where the dad, along with their two other daughters stays while she's here with the baby. This has been going on his whole life. He has a similar story to John John where doctors have given him wrong meds' or non FDA approved med!!! No Joke. He's coded. (as has john, although not recently) She doesn't trust the cardiologist and was about to change dr's so the Dr. wrote a letter to child services stating that she thinks she's an unfit mother for this child. The woman is NOT unfit. She is the only one advocating for this baby! They are making her go every three days to give a urine sample (3 hours away)!!!! and she's been doing it for 6 months never one dirty. She said she's never used drugs or anything. She's young, and her baby has major health issues, so they don't trust her... even though she is doing nothing but fighting for him (John John and Mom have a similar story). There is a lot of fighting, and a lot of advocating that has to happen. She also talked about the HUGE financial burden it is to drive back and forth, to spend most of the week away from your other babies, to be seperated from family, and to be fighting against the dr's because sometimes a mothers intuition out trumps the dr. who sees' the baby as a test subject. Please pray for Ronnie's health, and for Christy, his mom!

And pray for all the kids here, who don't have parents like John does, or like Christy. Because so much can go wrong if the staff isn't watched, if parents don't advocate and fight. Please pray protection for all the children! And pray for the medical staff here and at all hospitals.

Thank you all for your continued support. Will update more on John tomorrow!

6/17/11

Today has been a smooth day for John, mostly because he's still sedated.. but truthfully that has caused him to be way more comfortable. It's been a blessing because the Dr's have been able to run a bunch of tests that would have otherwise taken a couple days to accomplish because they don't need to do individual sedations for each procedure. However, we are still praying that he wakes up out of it fine, and that it does not affect his memory.

They started things around 11pm last night. They put a catheter in his upper right leg to run into his heart. We haven't been able to get cardio vascular people on board that this is something other then a kidney issue so the PICU dr's ran it. They are able to do about half of what cardio people can do... they can't go as deep. Cardio will only come on board if hte PICU dr's find something. (This has been the only issue we've run into with the Dr's not cooperating so far.) Today they ran a camera in to check out his lungs, and they did a bone marrow biopsy. So we've got everything covered and hopefully after this weekend somebody will come back with some conclusive results.

Literally I don't know how to spell all the ology's of the departments, but infectious disease, skin, heart, lung, bone, and kidney, are all working to find out what's attacking John. Please pray for their searching that a result may be found!

Also, a HUGE HUGE HUGE thank you to all family and friends who have financially come beside us to help secure the Ronald McDonald house placement, who've sent giftcards for food, etc. We really appreciate all of your support and it makes this time so much easier!

6/16/11 8:00PM

Praise God, John John went through the insertion of the breathing tube and surgery fine. He went in around 12 and came out by about 4:30. What we thought was going to be horrible (he's had a breathing tube before) actually makes him look so much better then before. Tonights nurse came in and told me she didn't realize what a handsome man John was last night because of the mask. His color is back, his breathing is relaxed (the machine is doing most of the work for him) but we're averaging 15 a minute. And what I think is best of all is his heart rate is down! His chest was beating so hard yesterday when i touched it that I was afraid for it! Apparently so were the Dr.'s which is why they said they needed to put in the tube regardless of whether he had surgery today or not. The other good thing is they put in a feeding tube as well. This will put food straight in his belly as opposed to the IV drip which put nutrients in his blood. Hopefully this will curb his appetite. He hasn't eaten or drank anything since Sunday. He's a 14 year old boy. He's hungry! The only thing with the tube is they have to keep him pretty heavily sedated. I'm not sure the complete logistics yet because I missed the initial conversation, and haven't wanted to push mom to talk about it more than necessary. I don't know when the initial dose wears off... but when it does the sedation level will depend on how he wakes up. They said because of the discomfort the tube can cause they tend to keep people pretty sedated on it. When i get better details I will update!

Please pray for all the tests they are running when he's like this! That they can find the answer, we can remove the tube, treat him, and take him home back to 100%John. The tube makes the procedures easier because 1. it's a passage way into his lungs they can use for a camera to go in and look, and 2. because john doesn't have a chance to get anxious about what they are doing which makes his levels drop, and them unable to complete the procedure.

John John moment of the day! -- (we cherish the moments when we see his personality shine through) As they were taking him down to surgery, mom went to take her blanket off of him (the hospital ones stink, so we had a nice, pretty, soft one on him. She didn't want it to go down cause it might get bloody. As they started to take it off he clapped... which is our sign for I need something (since it's hard for us to tell when he was talking through the mask... and it's been hard for him to talk with the mask). She said she would leave it if he wanted to go down with it... and he grabbed the corner and nodded yes! Then Mom kissed him and said I love you, can you say bye to mommy? and he said "bye mom and candace" -- when every word is effort to get out... it's a moment to cherish when he gives more then asked for and when he shows him John John self!

emergency prayer

they are starting the surgery and need to incibate him. john hasnt responded well to this in the past and has taken a very long time to wake up.

pray it goes well. he wakes up today/tomorrow,and that they can do all procedures needed in that time to determine the cause.

6/16/11 12:10AM

Ok. Praise God! John has calmed down and drifted off to sleep. His breathing and oxygen levels are amazing compared to what they were, but still not what we are aiming for.

We thank you for being a family who doesn't say "oh I'll pray for you" and that's the last time you think about it, but for being a family who hears about a need and drops to their knees before the Lord. Prayer is carrying all of us, including John John through this right now. We need you more than you realize.

Please pray for tomorrow. We need to keep John calm and get his breathing to a point where they can perform the biopsy. The longer it takes to get that done, the longer the stay here will be and we know the ultimate goal and comfort for John is home. Please pray for them to be able to safely do the procedure tomorrow.

Also, the one thing that John John truly enjoys is video games! However, they have a tendency to get him pretty worked up. Especially when on high doses of steroids which make it REALLY hard to control your emotions. When he gets worked up his heart rate shoots up. His breaths get short, and his oxygen drops. All bad. It's a struggle though because he's going through so much so we want to be able to not say no. Please just pray for guidance on how we can make this as easy as possible on him!

Thank you!

6/15/11 9:00 PM - PRAYER NEEDED

Family please pray. We've had our ups and downs today and right now is not an up. Earlier in the day we were able to take John off the massive oxygen mask. When they went to do the biopsy they couldn't because they were unable to sedate him... The amount of oxygen he was taking in dropped about 30% lower than it needs to be and they would have had to incubate him. He was doing well.... but just now his breathing has become distressed and his heart rate is super high. You should breath on average 15 times a minute. Johns been average 40 and they've been ok with that. Just now he was breathing at a rate of 109 times a minute on and off. Please pray. Pray this away! Ask God, and he is faithful.

¹¹ If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him! Matthew 7:11

Ask and believe.

I'll update more later

6/15/11 8:50AM

They will be doing a kidney biopsy today. The time is not definite yet, but sometime this afternoon. Please pray for the procedure itself to go smoothly. For the Dr's to remain as uninvasive as possible. For John to be comfortable and not feel anything. For the results of the biopsy to be revealing to the Dr's about what is going on so we can find and begin a treatment.

Also, pray for John's heart as well as his breathing. The Dr.'s are concerned about his lessened levels of functioning in both of those organs.

Thank you for your continued prayer. We will update after the biopsy!

6/15/11 1:02AM

Thank you again for your continued support and prayers. Today has been a much better day.

Last night was really rough with basically no sleep for anyone. John's lungs picked up a lot more fluid on the trip up and breathing was really difficult. That coupled with the new environment, not having mom for a period of time, and everything also did not help with the breathing. In the middle of the night they switched his mask to more of a harness on his face, without telling him what they are doing. What a way to be woken up!!?! It freaked him out as it would anyone... which also affected breathing and heart rate.

However today has been much better. We made know that no one was to walk in without introducing themselves and announcing what they were to be doing! We think yesterday was an attack of the enemy to get us to leave or scare us, but we trust and know this is where John will be healed.

The Dr.'s here are on a team. By that I mean all invested departments communicate with one another. There is a succint plan to help John. Everyone since last night has had great bedside manner and treated all three of us with the utmost respect.

Today and tomorrow are primarily get to know John/testing days for the Dr.'s and from there they will beging to talk about what they see. All of them had a decent knowledge of the case when we spoke today as they have been tracking with us since before we decided to come here. That is so comforting and helpful.

Please continue to pray for John's breathing. Right now he is not getting enough oxygen without a mask. Therefore they have to keep him hooked up... the mask he needs now provides pressure to help push out fluids. However, that means it also provides pressure on his face. If he hated the normal mask, you can only imagine with this. Also, because his breathing is so low they will not let him eat. He's so hungry. He's a 14 year old boy for crying out loud. Please pray for his lungs to increase so we can let him eat and be comfortable!

Also, please pray for housing. The hospital has let me stay again tonight as we are on the waiting list at Ronald McDonald house but don't have a room yet. They have bath facilities here so we were able to shower and wash up. My prayer at this point is that they allow me to stay the whole time we're here. We found out today and Ronald McDonald house is not free - (I thought it was) but $20 a night. Which for one night is not bad at all... but for being here indefinitely is not really manageable. The room has so much space and a couch and recliner chair... so Mom and I are both comfy... Just pray they continue to let me stay.

Continue to pray for Mom and myself, as emotions run high in all of this and it's sometimes hard to deal with. We're fighting every day to keep John safe, and as comfortable as possible. Sometimes when there's a procedure that may hurt it becomes a really hard decision about what to do. So just pray for clarity and peace in all procedures.

Thank you!

6/13/11 11:26pm

John john,mom and I have all safely arrived in Pittsburgh. We had a rough start when we got here on our end. The admittance people and all were not friendly at all. We got grief about me being related and you could just feel a tension in the air. We arrived before john and weren't allowed in for an hour. This put mom really on edge... we didn't know what they were doing and no one made any. Efforts at explaining.

After we got back to him things have improved. The drs and nurses have done a great job at showing us how they'll take care of john. They have put us at ease inside this room but were afraid to leave honestly. They have a one overnight guest policy.... so if I walk out to get bags or make a phone call (whichur not allowed to do in the rooom) they won't let me back in... I don't think they serve mom food here like at the other hospital... and as of now ronald mcdonald house has no beds... she says she's fine with me coming back but I can't leave her. This is a scary place,situation and all of the above...

Also one of the hardest things for mom right now is she promised him he would have to go through this... he wouldn't have to suffer anymore. The other night as they were sticking him repeatedly he looked at her and said mom u promised. She feels like she's failing him... I've been trying to talk it out and help her see tha u have to fight for ur kid and he understands that... but the question of when is enough enough keeps coming up.

John still has a horrible cough that's making him really uncomfortable. Its affecting his breathing. They said if they can get him to a lower dose of oxygen then can move him off. PICU and things will be easier for us there...

Please pray for all these things... well keep all posted!

6/13/11 1:23pm

Transporting now by ambulance to pittsburgh... mom and I driving! Pray for the trip! Ill update later

6/10/11 1:40pm

BJ asked me to send the update! John just finished a treatment of plasma apheresis which seperates his blood. It removes his plasma and infuses a completely purified clean plasma which is something his kidney can't do. They are starting dyalisis right now. The decision has been made for him to be moved to pittsburg at the advise of his primary kidney doctor. Hopkins has seen his records and given a wacky diagnosis. Pittsburg is the only hospital that sees this as a non-kidney issue which it clearly is because its attacking all organs. The entire kidney team here also agrees the root cause is not kidney.
Good news is also that the fluid in his lungs and heart is diminishing. But in order to do that they have needed dehydrate him essentially. However this is a good step there are traces of fluid now they are calling congestion because it isn't even enough to call fluid praise god!
Bottom line: john has stabalized! However the situation is still critical and we are still fighting for his life. We began this process on march 15th and whatever this is has been attacking his life since then. Right now we are treating the symptoms in order to stabalize him but if we can't find and treat the cause this has shown it will continue to attack.
Please pray for the transport. He will be medivaced to pittsburg Sunday. Please pray for the staff at pittsburg that they have the wisdom to see what this is, that they are gentle and proficient with all procedures they do, and that they fully heal john to gods glory! Also please pray as we are deciding who goes with him. Obviously mom is going, dad and bj need to be here for work as much as both want to go, but we are praying through if I go, or if I am more needed to go help at the house with grandma who does not do well without mom.
Thank you for your continued prayers and support. We are better but still very critical and in need!!!

6/8/11 11:54 PM

Hey all! Thank you for your prayers! John john now has a catheder in his neck/ chest! He did very well with the surgery and came out about an hour ago. He's having a dailasis treatment now... were praying the dialasis helps his kidney levels and starts to break up the fluids near his heart and chest. Thank you all for your continued prayers we will keep u updated

The Beginning

This will be the much abbreviated version of the first 14 years of John's life for those who don't know how we got to where we are today. John John was born as a premature baby and while in the hospital a nurse infused his food into his IV line. Basically this means his food was sent into his blood stream. Over the years this built up in his blood, causing renal kidney failure. In 2007 BJ gave his kidney to his younger brother John. Since then everything has been great health wise! In March of 2011 we began our current fight for life. This is the shortest version of the story, and does not due any justice to the strength, perseverance, wisdom, courage, or love that exist within this 14 year old young man. It does not due justice to the trials and struggles he and his family have gone through, but is simply the quickest way for you to know where we come from so you can know how to pray!

For the sake of getting his story updated, I am going to give a very undetailed description of events. Please bear with me as my goal is to get you up to speed as quickly as possible. In March of 2011 John woke up one morning with a rash, it looked like lesions and they were all over his face, mouth, and body. Mom took him to the hospital knowing that any infection inside his mouth can spread to organs, and compromise the kidney. After running a few tests the disease seemed to disappear and Dr.'s sent them home from the hospital assuming all was well and it had passed. A few days later, the rash returned, with a fever... it went away.... they sent him home, it came back with vomitting and now was starting to cause kidney failure... they gave him steroids, and he got better, and was sent home just in time for his brother's wedding. Immediately after the wedding he got sick again. This time he was in the hospital for a good two weeks. They ran all sorts of tests, and ruled out everything major and minor, cancer, lupus, lime disease, virus, bacteria, etc... They got to a point where they found a treatment that seemed to be working, but still couldn't diagnose anything. At this point the Dr's at the hospital admitted that they had done all they could for John and didn't know what to do at this point. John was released home, with a strict treatment regiment where he was receiving outpatient chemo like treatments a few days a week. They seemed to really boost him, and he could ride out on that for the week. By the time he was due for another treatment he usually was feeling pretty bad, but still the treatment boosted him right back to health. During this time, Mom was trying to find a Dr. that could treat, diagnose, and cure him.
On Wednesday June 8th, John was at the clinic for one of these treatments. When his kidney Dr. saw him she noticed his breathing was severely off. She did a quick diagnosis and quickly rushed him to the hospital. They were told at this point that he had signs of congestive heart failure, fluid in his lungs, and kidney failure. At this point the goal of the hospital was to stablalize his breathing, and make a decision as to where to send him, because again, they've done all they could do. Whatever is happening keeps changing and they had no answers.
The next day we began dyalisis to help stabalize John. He was transported to Childrens Hospital in Pittsburgh Monday June 13th. And it is here that we are praying for God to work a miracle and fully heal his child. We are asking you to join alongside us and support us in prayer.

I will post previous prayer emails that I sent out, and from this point on will be posting updates here!

Thank you all for your support, love, and prayers!