Out with 2008...And The PICC Line?

John has been extremely tired and has been sleeping most of the day since yesterday. He has gotten up and ate and taken a couple little walks around the unit. His white blood cells are hanging steady at 280 and he has needed platelet transfusions every morning. The doctors are happy with how his skin is starting to look better. His legs are still weeping fluid and still has some blisters on his legs and arms.

He called a little bit ago to say that while he was turning on his side in bed he pulled his picc line out of his arm. He said it really didn't hurt. They have plans for him to get a hickman put in tomorrow. We will be trying to stop that in the morning. We will be asking for another picc line or some other kind of central line. They have finally gotten the infection taken care of from the last hickman and he does not want another. So we will see what happens in the morning. That's about all for tonight.

Happy New Year to you all.

White Counts On The Rise...

John had a busy day. His white blood cells are rising he now has 300 so far there are no leukemia cells floating around they will continue to watch them as his counts keep rising. I missed rounds this morning but John said once his counts are high enough and his skin has improved and he is clear of infection and leukemia he will be able to come home prior to transplant like he did last year for a couple of weeks.

We went to the eye doctor today to make sure he is not getting graft vs host in his eyes; they believe it is from his skin that is leading to irritation of his eyes. They gave him some eye drops and an ointment to keep them lubricated. We got back from that and he took his first shower since being admitted on Dec.10th. It wore him out but I was able to get the majority of the flaking skin off and he looked and felt a ton better. His skin is starting to calm down he has a long way to go to back to normal though. The blisters on his legs are weeping so we have to keep changing his sheets and padding that soaks up the fluid.

He also took a walk to the lounge this morning. He is very wobbly and can't attempt this by himself yet. He was able to check the blog and read all your comments. He had much more energy today but was exhausted at 4:30. He had a few visitors. The Tulino's came after their appt. Carrie and Stacey from Taussig, he kept them well entertained. His mom and my Dad came after work. My Dad brought the news that the local talk radio was saying that the Browns should go after Coach Meyer. John thought that was funny and he would be crazy to even think of talking that job. It is looking good for John to be home to watch the Gators on the 8th. That's all for tonight talk to you soon.

Counts On The Rise...And Another Room

John has been feeling a little better today. He is still extremely tired and worn out. His skin biopsy came back as dermatitis; but the oncologist, nurses, myself and John all know that it is graft vs host disease (gvh). His oncologist who is on service now (he's had him in the past) says it is grade 4 gvh. The steroids are definitely helping it isn't spreading as much and is not as inflamed as it was. He still has a long way to go to get rid of the blisters and for his skin to heal. His eyes have been bothering him and seem to be worse today we believe that it is in eyes now. He is getting eye drops and the steroids will also treat that as well. His kidney function levels were elevated somewhat today if they continue to go up they might have to put him on a dose of 1 of the anti rejection meds he was on. He doesn't need to get gvh of his kidney since many of you know he only has 1 to work with. We will see how his levels do in the next coming days.

His white blood cells are starting to come up so we will see what they are producing in the next few days; there are still to few to tell at this point. If they are producing leukemia cells he will need another round of chemo before he can get the chemo prior to transplant.

He has changed rooms. The nurses feel it would be better if he was across from the nurses station due to him being unsteady on his feet and at times he likes to try things on his own before thinking. He also still out of it as he calls "loopy and not quite all there". It is much better for him, nurses and staff to keep a eye on him until he starts feeling better. He really misses his dogs he keeps dreaming they are laying next to him and he starts to pet his legs. That's all for tonight will update you all again tomorrow.

Onto the BMT Floor...

John & Gordo

John & Moe

Jessica & Moe

John has now moved to the bone marrow transplant (BMT) floor. He is happy to be there he feels "more emotionally and physically stable" on this floor now. We don't know if they will keep him there straight up to transplant or if he will come home leading up to transplant.It will all depend on his recovery from everything he has going on at this point. His counts really aren't moving up yet so there is still some time that he will be at a high risk for a number of things. He is extremely tired and when he is sleeping he is talking or fidgeting. His skin is not as flaming red today but he is covered in some nasty blisters that are leaking everywhere. They have doubled his steroids because that seems to be helping in the treatment of the skin issue.

He is in one of Luke's old rooms now; John was across from Luke when he was in this room now. He was talking and half sleeping today he said it's not the same without Luke to go through this again. He has a lot of the same nurses on this floor that he did a year ago. He has his favorite nurse Moe with him today. There are some pictures attached of Moe and one of Gordo and John from this afternoon before he left for the airport. That's about all for today. He will be getting some much needed rest today and night and we will see the docs in the morning.

A Day Of Gifts...

John had a better day today. He was more awake and alert for most of the day. He didn't have any episodes of a-fib or fevers last night or today so if that continues he can possibly go back to the oncology floor tomorrow(Saturday). His skin is now blistering all over his arms and legs. Dermatology has him on all needed creams and have increased his steroids to help in treating this problem. They are leaning more towards a chemo burn or graft vs host disease. The results of the biopsy will be in by Monday until then they are treating it as if it were both of these; so treatment really wouldn't change.

I had another ultrasound this morning. It is no longer identical twins. The smallest no longer has a heartbeat and will just reabsorb itself. The other still has a good heartbeat but is small. So I go back again next Friday for another ultrasound. It was very hard to tell this news to John but I couldn't keep it from him. He was sad and thought it was his fault.

John got a big surprise this afternoon. One of his closest friends from college (Gordo) flew in from New Jersey today to see him. He was so excited to see him. He is staying until tomorrow and hanging out with him tonight in his room. My parents, brother and his girlfriend came tonight for John to open his Christmas present; a Keurig single cup coffee maker) he can't wait to get home and use it. The biggest gift that was opened was for my Dad. We had been planning to get my Dad a GPS system for the farm to put on the tractor. John was upset that he wouldn't get to see my Dad open it so they brought it to the hospital. My Dad was so surprised and it made John's day to see him finally get what he has been wanting for a long time.

That's about all for tonight. Hopefully he will have a calm and restful night and possibly move back to the oncology floor tomorrow.

Another Christmas At The Clinic...

Merry Christmas. John was sounding good this morning when I talked to him before I left the house. When I got there he was extremely tired. He was hoping he could take a shower today but the docs want to give his skin a few days to settle down. It is very ugly; there are a few pictures of it below...you get to see what he is dealing with. We still don't know yet if it is from the chemo or it is graft vs host of the skin. He is on a number of different creams to treat it and they have put him on prednisone (steroids) 80mg to help with treating it. I was able to get him cleaned up and we cut his hair because it is starting to fall out and is itchy. That took about 30 mins and he was incredibly tired.

He was able to read the article in the paper today and he said what a good job Bob did on it. He did go into a fib last night but was able to get out of it quickly. He has to go 48 hrs without any episodes of a-fib before they will take him back on the oncology floor. We will be unwrapping presents on Saturday morning at the clinic because my brother wants to be there for it. So we will have more pictures up on Saturday. Hope you all enjoy your Christmas with your families.

Ghost of Christmas Past...

The Star Beacon did an article on John's story which appeared in today's paper. Click HERE to view the entire article by Bob Ettinger. He did a tremendous job capturing the spirit of John & Jess and their love for friends, family and most of all, each other.

A Calmer Christmas Eve...

John is now out of cardiac ICU. They did not need to shock him back into rhythm as they thought last night. They were able to get in back to normal throughout the night using fluids, magnesium, and potassium. We have had a very rough few days on the floor he was on and we refused for him to go back to it. The oncology floor can't take him back yet due to the a fib last night and high fevers. He is now on the heart and lung transplant floor. This was chosen because it has the telemetry (monitors to keep checking his heart rate) and they are familiar with patients that require similar care as he does. This floor also takes Bone Marrow Transplant patients when that floor is full so they have an idea more than the other floor. The oncology team will still be following him closely while he is on this floor. It is nice because it is in the new part of the clinic so everything is brand new.

He is extremely exhausted. He has a very bad rash still not sure if it is from the chemo or if it is graft vs host disease flaring up. Dermatology was in today to take a skin biopsy so we will know more when those results are in. He does still have fluid around the back of his heart the doctors don't believe that is sending him into a fib; they think it is the infection that he is fighting. It doesn't help that he has no immune system right now but they have all the antibiotics going that they can to fight it for him. Hopefully by the end of next week into the following week his counts will start to recover to help him fight it. He was having many conversations with people last night while sleeping. It was actually funny to hear him saying the things he was. He was talking to my Dad, Coach Meyer, and the dogs. Hopefully he will get some much needed rest the remainder of the day and night. Merry Christmas to all.

Trying Day To Say The Least...

Jess asked me to post a few details about the day, which has not been very good. Between a upsetting visit from ENT, and a fever of 105, John's heart went back into a- fib and he is back in the cardiac ICU. They have been trying to get his heart back to a normal rhythm since 4:00 p.m. or so with drugs. It has not worked so far. Jess was called back to the clinic when they were passing the 615 exit on Rt. 90.

They are exploring the option of trying to shock his heart back into rhythm. There are risks in doing this because of his platelet counts, but at this point it is felt the benefits outweigh the risks.

Jess is going to try and call me later tonight with any updates and I will forward them on the blog to you...please keep him in your prayers tonight. This is one of those critical points in his recovery.

-Jim Timonere

A Better Day...

John is having a much better day than yesterday. I couldn't make it due to the weather and a full day of morning sickness. I was able to stay in contact with him and the doctors. He did get a picc line put in after a platelet transfusion. He won't need to be a pin cushion as much anymore. He will be getting 2 units of blood tonight. They were waiting on the blood bank to send it up. He did go into a-fib last night along with a fever. He has not had any a-fib issues today so that is a good sign. They have now determined that the issue with the a-fib is from an infection. Infectious disease believes they have it covered with all the antibiotics and now have added another to hopefully get this taken care of. The doctor said things are definitely better than yesterday and they will keep checking on him through the night.

I talked to him around 6 he was definitely more perky. I think that had to do with the fact that the majority of his favorite nurses were visiting him. He can't wait to get back to his nurses. They have all become more like family to us now than just his nurses. He said he was still very tired but not as bad as he was where his eyes would shut mid sentence or while drinking water. They have started some lasix to get rid of some of his extra fluid. Hopefully it will be a quite night with no issues and see what tomorrow brings for us. Thanks for all your thoughts and prayers.