Monday 7/25/11

Jon's recovery is progressing! He's walking, talking and moving around more comfortably. Two of his chest tubes were removed today which took some of the wind out of his sails for the rest of the day. He was in bed trying to sleep when Jen and I left around dinner time. The final chest tube will probably be removed tomorrow or Wednesday.

Some of you have asked about sending him cards at NIH. At this point, we hope for him to be home by the end of the week so please send them to his house. If he's still in the hospital, Anne will bring them to the hospital for him.

Jon and Anneliese Bruce

1901 Lennox Dr.

Unit 37

Sykesville, MD 21784

As for visitors, he's focusing on regaining his strength and recovering. Jon asks that we wait awhile ...he'll have lot's of time to catch up when he gets home :)

Please keep praying that his strength an appetite return quickly and that he will grow strong for his treatments which begin in about a month. Please keep Anne in your prayers as she is trying to work and take care of Jon. She is an amazing wife...beautiful, sweet, strong and funny!

Every day I come home to cards and messages of encouragement from you.... I so appreciate your love, support and friendship.

Friday 7/22/11

Today has been a great!

Jon started his day in the ICU and ended up back in his "old" room less than 24 hours after his surgery. His nurse Neil (really awesome male nurse) was extremely pleased with Jon's progress. He was up walking this morning! After he came back from his walk, he sat in the chair and was watching ESPN when Jen and I arrived. Mrs. Sue had spent the night with him, so we sent her home to get some much-needed rest. Jon drank some chicken broth and ate a chicken finger and some yogurt for lunch.

[Jen taking over here for a bit so Anne can get Jon some ketchup!]

After lunch, Jon relaxed for a while and talked with Dr. Hong (one of the fellows who performed his surgery) and the very nice anesthesiologist whose name we can't remember. Both doctors seemed very pleased with Jon's progress. Later, Jon took a lap around the ICU and relaxed some more before getting the awesome news that he was going to get to leave ICU for his "old" room.

Around 4, Neil came in to get Jon ready to move, which took a while because of all the tubes, wires, electrodes that were hooked up to him, and he was very happy to leave a few of them behind. Not long after, he was settled in his room (which everyone keeps saying is the best room around because it has a lovely view). One of the first thing he asked was if he could take off his compression stockings, and he was SO happy to have them off and to have Anne scratch his legs.

Right now, Jon is about to eat his dinner (Hawaiian pizza with french fries and a vanilla Boost plus) and take a nap before doing a few more laps. He's also trying to talk Anne into rubbing his feet ;)

Water

Woo Hoo! The doctor said Jon can have clear liquids! He was very excited by this news and made sure the nurse knew! ;)

Update From ICU

Jon is out of surgery and in ICU (Intensive Care Unit). He is still groggy but asking questions and talking every once in a while. He's still asking for slurpies because he is so thirsty. The remainder of the time he is sleeping. He is on a lot of pain meds to help him, which is good. Since they decided to proceed with the larger incision, Jon will be in much more pain. The doctors have prepared for this and have him not feeling any of this pain yet. He said his pain level is at a 2, which is actually lower than what he was saying before surgery. He has a total of 3 chest tubes (2 going towards his head and one at an angle) and TONS of stuff hooked up to his left arm to monitor absolutely everything. He will be here overnight so that the nurses will be able to monitor him closely. Then he will return to his regular room down the hall.

His spirits are good, and he is handling this with the best attitude possible. :)

update...

José, Jon's nurse, called at 9:53 to inform us that they had started about 5 minutes before his call.

José called again about 10 minutes later and made me freak out a little when I saw the number come across my phone. He wanted to let us know that they had looked around with the microscope and had decided to go forth with the larger incision. We were hoping to get this news because it seemed like this would surgically remove a little more cancer out of his body. He will be much more sore with this procedure, but it seemed like Jon was hoping things would turn out this way as well. He told the doctors yesterday, "I don't care about the pain. Please just do what you think is best." Jon, as well as the rest of us, have an extreme amount of confidence in his surgical team! 

José called once again at 10:37 to let us know that the doctors had removed Jon's pleura and that they were able to get the cells they needed. They were in the process of making sure there was no bleeding or complications before finishing things up. I was told to call José at 11:37 if I haven't heard from him. 

We are in the waiting room now hoping to hear from José any minute :)

Surgery has started!

Josè the nurse just called (9:53) and said they just started about 5 minutes ago.

Surgery Morning

We arrived at 6:15 this morning, and Jon was already up going to the bathroom and brushing his teeth. They did a few things to get him ready to go to the operating room. The nurse brought him some really sexy (compression) stockings. She wrestled them on over his ridiculously large calves and had him pull them up to his thighs! He was ready to go with his gown and stockings on. However, no one was there to get him yet. He waited patiently in bed for his "chariot" to arrive. He took a nice nap for about 45 minutes, and then they finally arrived.

They wheeled him down many different halls, and I have no idea how we got where we were going! We arrived in the operating prep where the nurses checked him in. We met Josè, the nurse that would be in the surgery with him, and the anesthesiologist also came to get started. I said goodbye and kissed him. I had to leave when it was time for him to get his epidural catheter (for pain management).

We are currently in the waiting room waiting to see him one more time before he goes into surgery. He will probably not remember seeing us, but we will remember seeing him ;)

I will continue to keep everyone posted throughout the day.

Wednesday 7/20/11

From Jon's Mom using Anne's very cool computer :)

Today was a good day! We received lots of encouraging news.  Dr. Rosenburg, the National Cancer Institute Surgery Branch Chief, told Jon today, "Our goal is to get rid of this completely...you will be getting the most effective treatment...this is the best chance the world has ever seen..."  That is just wanted what we wanted to hear!

Jon will be having surgery tomorrow to rectify the fluid issue in his lungs and get a tissue sample for Jon's potential therapy.  He will have a 5-7 day recovery and begin his treatments in about 4 weeks.  It's called Cell Transfer Therapy and was developed here at NIH.  According to Dr. Rosenburg, "it's the best treatment available today."  Very simply, it involves generating cells from Jon's own cells to grow up and put back in his body to fight the cancer.

Jon's been walking today, eating more, and he even took a "shower."  He has an amazing "drill sergeant" nurse named Michelle that we just love.  She keeps Jon up and moving.  We are confident in his doctors and feel that he is getting wonderful care here.

His surgery is at 9am tomorrow...please keep him in your prayers.  We will try to give you an update tomorrow afternoon to let you know that he's out of surgery and recovering!  Thank you all again for all your prayers, encouraging words, support, and many acts of kindness.  We are so grateful!

Comments Fixed!

Sorry Everyone!

I had to change a setting for people to be able to use the comment feature on the blog. Should work now :)

Tuesday 7/19/11

Jon didn't have a great night last night. He had some stomach pain that kept him awake until 3:00 am. He said all he wanted to do was curl up in a ball, but he couldn't. He finally fell asleep and was able to rest for a little while before they took him to get a CT scan and another chest x ray in the morning. Once he returned to his room, he was able to sleep comfortably for the rest of the morning.

When we arrived around 1:15, he looked comfy and told us all about his morning: his Boost for breakfast, the scans, the doctor visits, and his night. He also told us he was visited by the "good looking" nutritionist who came to explain all the different smoothie and shake options they had to offer and marked the ones that would be most beneficial for Jon and what his body is going through. After we settled in, he asked us to order him some food. He already had his mind made up. He wanted the Biocare frozen drink (lactose-free, partially-frozen drink made with Italian ice or frozen fruit, ginger ale, and whey (milk) protein.). He just needed to hear the flavors and chose strawberry. I tried his drink; it was pretty good! He also wanted blueberry yogurt with granola. I mixed his yogurt and granola together, and he began to eat it. He was slightly upset because the granola had raisins in it, and he didn't want to have to pick them out of his teeth. He finished the yogurt and then laid back down again. 

He rested for about another hour, and then the nurse said she would like to see him try to get up and walk. After the pain meds took effect, he decided it was time to walk. The nurse knew he was uncomfortable moving, so she said that even if he could just move to the chair it would be better. He sat up and asked us, "Can someone follow me with a wheelchair, just in case I get light headed?" The nurse said that if he did decide to walk, she wanted to walk with him. As he stood up, he told me, "I don't think I am going to make it very far," but before we could find the nurse Jon was off, sprinting down the hallway. Mrs. Sue followed right behind with a wheelchair. The nurse finally caught up to us about halfway through. She was very pleased to see how well he was doing. He completed a FULL lap!

After he finished showing everyone how determined he can be, he was very tired. He made it back to his room and slid back into bed carefully. After he laid down for a few minutes, we noticed him with his eyes closed looking angry. I asked him what was wrong, and he said the tube was bothering him, and he wanted more pain meds. I was able to find the nurse who brought more medicine and had him feeling much much better.  Soon he was asleep. You will be happy to know he was taking pretty deep breaths while sleeping!  :)

After a while, the doctors made their rounds, and our room FILLED up with 6 people: a doctor, the fellows, and our nurse. The doctor started off by saying that his chest x rays looked good. His lungs are fully expanded! They are also able to see more of what is going on, which is a thickening on the base of the lung. Right now, the doctors are waiting for the thoracic surgeon to schedule a procedure called Pleurodesis which will hopefully stop the fluid from forming. Dr. Sherry is hoping that they will be able to fit him in this week to get things moving. Until we hear when the surgery will be scheduled, Jon will continue draining. 

This evening, he had a pretty high fever that they are monitoring, but now it has started to slowly come down. He is not in much pain right now--just uncomfortable because of the fever.

I will try to have another post tomorrow evening--unless we have surgery news. If that happens. I will post as soon as I find out!

Comments

Hey Everyone,

Thank you so much for keeping up with our blog! It is so exciting to see how many people are viewing each day. Please feel free to post any questions or concerns or just say hello! ;)

I have had a few people ask how to leave comment. If you look on the left side of the blog, you will see the words "Join This Site." Click on this, and it will take you to another window that will ask you to log in. You log in with an email address (it will accept gmail or yahoo, and if you do not have one of these you can create one for free.) Once you join the site you will receive emails when I post.  :)

I hope this helps! Hope to hear from you guys!

Thanks,
Anne

Monday Morning

Jon had to be at NIH this morning at 7:30 for another Thoracentesis to remove the fluid that is building up in his chest. We left the house around 6:00 to make sure we arrived by 7:30 for his appointment. Jon's mom says I drive like Mario (from Mario cart :)!  We arrived on time and were able to get Jon where he needed to go. As soon as we arrived at the radiology desk, Jon pulled out his iPhone to read the email from Dr. Stewart that said, "Tell them your reporting to Special Procedures to have fluid drained from your lung." The woman at the desk guided us to another waiting room where another nurse looked at Jon, realized he was short of breath, and immediately got him oxygen (he had just walked in from the parking lot). He sat patiently with the little tubes in his nose that he hates so much until they took him back for the procedure about ten minutes later.  
 When I heard him coming down the hall, I peaked around the corner and saw him being pushed by a nurse and pointing for me too look at all the fluid that just removed from his chest! There were three bottles of fluid in a box taped up. Two of the bottles were completely full and the third one had only a little in the bottom. Jon said they were able to to get 2500ml out!! This round of fluid was a little lighter and looked exactly like a Blue Moon beer. I am not sure if it is a good thing that it is lighter or not. Immediately after he came out of the procedure, they took him to get x-rays of his chest and see if they were able to get all the fluid out. 


After reviewing the x-rays, the doctors determined that Jon still had more fluid that they needed to remove! They had to get a little girl in for a procedure first but put Jon next on the list. While he waited for his next Thoracentesis, the doctors admitted him and gave him his room so he could rest. 


He has been sleeping for almost 2 hours and seems to be sleeping pretty soundly (he was lightly snoring and looks really comfortable). They should be coming to get him shortly for his next Thoracentesis to remove the remainder of the fluid, and I will post again this evening to let everyone know how this afternoon goes, as well as what the doctors plan to do next.

1:15 pm - This is Jon's mom!  

Anne and I found this sweet Mac computer station in the Interventional Radiology center where Jon's next procedure is being done.  After looking at his x-rays, the doctors were surprised to see that even after draining 2500 ml from this morning, Jon still has a large amount of fluid in his chest.  There are doing a procedure now to insert a tube in his chest which will be hooked up to a machine that will gently suction the fluid out overnight.  It will be less stressful on his body to have the fluid drained more slowly. He will be sedated for this procedure (he's happy about that) which will take about an hour.  Anne is catching up on some emails, and then we are going to explore the hospital while we wait.  NIH is a truly amazing place.  Everyone is so caring and compassionate, and Jon is getting good care.  Please continue to keep Jon in your thoughts and prayers.  He's a good patient and takes each new development with good humor and determination.  

We are still waiting to hear about what his doctors decided in their meeting this morning regarding his treatment.  Anne will update tonight if there is any new news.  If not, I'm going to insist that she get some rest and take a break.  She is so loving and caring of Jon, but all the hurrying up and waiting can be exhausting. 

On a lighter note, I tried to supply some healthy snacks for the two of us to nibble on while we waited.  I bought two bottles of "natural" (Anne's note: UNSWEETENED) green tea in two different flavors.  Mine tasted like perfume and Anne's tasted like "dirt" :)  I think I'll try a different brand next time!



The tea that tasted like dirt :)

Friday 7/15/11

Jon didn't have to do much today which was good after his eventful day at NIH the day before. He slept in and then made his way downstairs. Dr. Stewart called to let him know that they had looked at his scans and planned to remove the fluid with the same procedure as before. Once they removed some of the fluid, they will decide if he should have surgery to keep the fluid from coming back. Jon has to be at NIH at 7:30 Monday morning, and they told him to be prepared to stay a few days. It finally feels like things are going to start happening, which will put him on the road to getting better.

Like she has been doing everyday since I have been back at work, Jon's mom came over for a visit to check on him. She brought him one of his favorite soups: miso soup. He ate that for lunch and then continued to watch tv and take it easy. When I got home, we figured out what kind of pizza we were going to order and waited for Pat, Roscoe, and Melia to get here. We had a movie night so Jon could see some of his friends with out doing too much. We ate pizza and watched Unstoppable, which was good!

Once everyone left, we made our way up "everest" and went to bed.

Thursday 7/14/11

Last night, Jon was exhausted from his trip to NIH. His mom and sister took him down there so he could get more scans done to give the doctors a better idea of what is going on in his body and what they are going to do about it. He had an MRI done as well as a CT scan. The MRI was extremely hard for him because they needed him to hold his breath to get clear images. He was able to get through it though. After waiting a little while, he was called back to get his CT scan. Once this was completed, it was time to go home.

Jon got home around 7:15 and headed straight to the couch where he stayed till it was time to climb "everest" and go to bed.

Thursday

Jon had a good day yesterday. He was able to sleep in and spent a lot of time just hanging out on the couch. We ate the wonderful baked chicken that Jon's sister made for dinner. Aunt Lauren and Uncle Russ stopped by to see how we were doing and visited with us for a little while. After they left, we continued to watch TV and hang out together.

Jon has an appointment today at NIH to get more scans to help the doctors prepare for upcoming decisions. Should be pretty painless--just time consuming! His mom and sister are driving him down.  Hopefully they will have a post a little later.

Sorry this post was a little late ;)

Tuesday

Believe it or not, we had a good night last night. Jon had a little trouble falling asleep, but once he fell asleep it was a good sleep. He got up, showered, and even trimmed his "lazy mans" beard. He ate some fruit before we all--Barry (Jon's dad), Shawna (Jon's stepmom), Sue (Jon's mom) and I--loaded into the Ford Expedition (the type of car is important later) to head to NIH. It was a long trip, but not as long as the trips some people make. We are thankful to have such an amazing place so close to home.

When we arrived at NIH, we pulled up to security and all piled out to go through the metal detectors. We got our name tags, and Jon even received a new name! His name tag was spelled "Jonathuan," haha. On our way into the hospital, we had to park in an underground garage and tapped the PVC pipe stating that the garage clearance was 6 feet. We were a little worried we might hit the top, but at that point there was no turning back! We SLOWLY entered the garage and made it in ok, but only by inches! Jon went in, and the car was parked fine :)

Jon climbed the few stairs to get to the department he was supposed to go to to get his blood work and EKG done. He went back immediately while we waited in the waiting room. Once he returned, we went to the 3rd floor to meet with the doctors.

We waited for a really long time... I sent a few work emails. We laughed. We discussed what was going on. We talked about questions we had and anything else that came to mind. After a while, we met Dr. Ashley Stewart, a very nice young lady who introduced herself as a fellow (she was in her FELLOWship). She was one of Jon's doctors. She asked about symptoms, took notes, and explained her understanding of everything. She checked Jon over and explained what treatment plans she would suggest. After she explained everything, we asked some questions and then waited a little longer to talk to Dr. Sherry (he has been one of Jon's doctors since his first melanoma case). As we waited, we discussed the treatments that Dr. Stewart had explained and prepared our questions for Dr. Sherry (Barry did most of the questioning, which is great because he understands all of this so well).

When Dr. Sherry met with us, he explained his game plan and discussed various treatment options in addition to answering all of our questions. He said many things to us that made us feel good including that he wants to get rid of this just as much as we do. He scheduled a chest x-ray before we left to monitor the fluid buildup in Jon's Plural Effusion (this link really helps me picture the fluid that is in Jon). After he gets a look at the xray, he will figure out the best way to remove the fluid and keep it from coming back. Dr. Sherry and his team will  meet on Monday to figure out the best approach  to use. Jon will probably have to go to NIH this week to get some additional scans done to help their research and give them more information. Once we know what the treatment plan will be, I will post it. I hope to have some more information soon!

Once we finished with the doctors, Jon headed to get the chest x-ray that Dr. Sherry had ordered. Then we finally went to get some food in our bellies. Jon ate a WHOLE chicken sandwich and little soup. His appetite seems to be coming back! Yay! We headed to the car and slowly, carefully drove out of the very low parking garage.

...
Just to clear a few things up for anyone who is confused :)
Jon does not have lung cancer. He has melanoma that has progressed to his Pleura.

Jon is young and healthy, and his team of doctors is looking for curative treatments. We are trying to take it one day at a time. Thank you for all your thoughts, concerns, and prayers. They are greatly appreciated :)

Right now, we are resting and watching TV.

Goodnite :)

Monday

I spent the morning with Jon today. He'd had a rough night and didn't get much sleep due to night sweats. Regardless, he was on the sofa smiling when I arrived with fresh fruit and stuff for dinner.

While he was resting and I was puttering, I had a chance to enjoy their new home. I think you can tell a lot about a person by looking at how they live. Their small townhouse is a peaceful one. Anne and Jon have created a lovely home together. Everywhere I look are family photos and cards: anniversary cards, birthday cards, and get well cards; some handmade by Jon's little brother and sister are evidence of how many lives he has blessed and how much he is loved by his family and friends.

Anne's lovely touch is everywhere...splashes of color and "wise words" scattered throughout make this a home of love. My favorite is in their bedroom and says,"Always kiss me goodnight." In case you don't know, Anne's maiden name is Goodnite :). Of course, there is a sticker on Jon's bureau that says,"Fish tremble at the sound of my Voice." As I watch him sleep peacefully, I know that God is watching over him too. Please keep him in your prayers.

Monday Evening

When I got home from work, Jon was on the couch waiting for our friend Taryn to stop by. She was dropping off homemade zucchini bread, and Jon was pretty excited about this. We visited with Taryn for a little while, and then she went to work. As soon as she left, Jon wanted a piece of zucchini bread...and then another! I went upstairs and worked while Jon rested on the couch and watched TV. I came down periodically to check on him, and he was always right where I left him: in the corner of our couch, remote in hand, Towson blanket on his legs.

Once I was finally done working for the night, I came down to watch TV with Jon, and he would not watch anything other than the home-run derby! Once 9:00 came, he agreed to switch back and forth so I could see a little  Men vs. Wild with Bear Grylls and special guest Jake Gyllenhaal :) Then I fell asleep on the couch, and Jon woke me up at 1:00 to climb "Everest."

Sunday

Today was our first full day at home, and it felt nice to wake up next to Jon. I got up earlier than him and took Fisher downstairs so he wouldn't bother Jon.  He was able to sleep in without nurses interrupting his sleep ;)

His night was okay.  As usual, he had a slight fever that went up and down like a roller coaster.  Although he was able to take a shower, it took a lot of energy out of him, so he had to rest before conquering our stairs--or "Everest," as Jon has began to call them since he has come home from the hospital.

Jon had a good day hanging out on the couch and watching 3 consecutive Indiana Jones movies on the SyFy channel.  For lunch, he asked for a Subway club, ate 3/4 of it right away, and finished the rest of it later.  He also snacked on things through out the day: a Special K protein shake and Texas caviar (something similar to this), packed with beans for some healthy vegetable (Jen-approved) protein.  He finished off the night by spending some quality time with Seth.  They watched True Grit.

Back to work for me in the morning.  Mrs. Sue will be stopping by to check on him while I am working, so tomorrow's post will come from her :)

Saturday...Home Sweet Home!

Although Jon still isn't feeling great, he is feeling better than he has been. We arrived home to find lots of goodies on the counter for all of us, including Fisher (our cat), and a clean house thanks to Mrs. Sue (Jon's mom).  It was wonderful!

Jon immediately went to the couch and got comfortable.  I made sure he had everything he needed by his side and then went to fill his prescriptions. Walmart didn't have the oxycodone, so I had to run to Safeway as well.  Finally, I made it home, prescriptions in hand, to find Jon, Barry and Shawna being entertained by Fisher.

Jon had a few other visitors that evening.  My family wanted to see him before they went on vacation and brought Panera Bread soup.  Jon had just finished some Campbell's chicken noodle soup (his favorite when he is sick); however, he also had room for broccoli cheddar soup, so his appetite seems to be getting better.

Once everyone left, we got comfortable on the couch until I eventually fell asleep, and then we headed to bed around 12:00.

Goodnite :)

Saturday...Day 5 in the hospital

When I got to the hospital Saturday morning, Jon looked GREAT--the best he had looked in the last few days!

That morning, Jon saw a doctor that worked with Dr. Bekele because Dr. Bekele had the weekend off.  After meeting with him, Jon did a few laps and was happy to find out he was being discharged.  As soon as he finished his IV antibiotic, he would be ready to leave.  The nurse started the IV, and we waited for what seemed like FOREVER...  While we were waiting, Jon's room phone rang.  We were puzzled because no one we knew had that number.  When I answered, it was Dr. Bekele!  In spite of his weekend off, he was calling to check on Jon, to see how he was feeling and if he was going home.  This really made me feel like he actually cared about Jon and his case.

The IV was finally finished around 1:00.  I  packed up his things, and Jon asked for his contacts. We loaded the blanket and pillow on Jon's lap and headed for the door for home!  YAY! :)

Friday...Day 4 in the hospital

Thanks to the Dilaudin, Jon was able to sleep a little better, but on Friday morning his fever was still going up and down like a roller coaster.  We were very anxious for the test results that were supposed to be ready sometime that day. 

Around 11:00, we saw Dr. Bekele.  He did not know about the fluid results.  Instead, he came to inform us that there was still fluid in Jon's chest, but since his pain was down they were going to leave it until they knew more about what was causing it. He also prescribed Jon Moxifloxacin, an antibiotic to fight any kind of infection that might be in his body.

We continued to wait for the results for most of the day.  Jon walked a few laps throughout the day and actually seemed to be getting faster :)

Finally, later in the afternoon Dr. Miller finally came to see us.  She said the results had come back, but they were not clear enough for her to make a diagnosis. Because the fluid had some highly suspicious cells, she sent specimens to NIH for a second opinion.  Jon has an appointment at NIH on Tuesday at 11:30, and we should get their diagnosis then.

The best news of the day was that, as long as Jon was not in a lot of pain and as long as is fever was under control, he will be coming home tomorrow :)

Thursday...Day 3 in the Hospital

When I got to the hospital on Thursday morning, I found that Jon hadn't slept very well and that he had a fever of 101.  On the bright side, the headache that had begun the previous day was feeling better.  Jon also had a new symptom: pain in the front of his chest on the right side. We waited to talk to the doctor to find out what was causing this.

Dr. Bekele came in and talked to Jon about his new symptoms.  Believing that the pain might be from where more fluid was causing pressure on the lung or from a small air leak from the previous day's paracentesis procedure, he prescribed an IV-administered pain medication to make his pain more tolerable.  Dr. Bekele also hoped that stronger meds would allow Jon to take deeper breaths, which would in turn help his lungs return back to their normal function.  He ordered another chest x-ray for Jon to make sure there was nothing there to be concerned with there.  Jon walked a few laps and then rested up before getting his chest x-rays taken.

Later that afternoon, Barry and Shawna (Jon's dad and stepmom) stopped in.  They had come to St. Agnes for Barry and wanted to see how Jon was doing.  Jen (Jon's sister) also came to see Jon and keep me company.  After Barry and Shawna left, a nurse came in to give Jon his new pain medication, Dilaudin, through his IV.  She warned that it might knock him out, and as she was still administering it his eyes started to close...  We thought he was sleeping, but apparently not!  As I was composing the latest text update with Jen and trying to figure out how to spell the new medication, Jon said that it was spelled "C-O-M-A!" :). According to him, the Dilaudin made him feel like a "marshmallow," but it helped him get some rest and take deeper breaths.

Dr. Miller (oncologist) also came by that afternoon to see how Jon was feeling, and she also let us know that even though they didn't have any results yet from the fluid they should have something the next day (Friday).

For the rest of the evening, Jon and I watched TV together until the TV went out because of a horrible storm. Jon took a few laps around his floor before taking some more pain medication and going to sleep for the night.

Wednesday...Day 2 in the Hospital

On Wednesday, Jon saw the lung specialist, Dr. G, who would wanted to remove the fluid around his lungs.

Dr. G came to see Jon around 10:30 and explained what needed to be done to remove the fluid.  This procedure, called Paracentesis, involved numbing the area and using a needle to draw out fluid.  It was scheduled to be done at 11:00.

Even though Jon threw up and felt light-headed during the procedure, he handled it well. The doctor was only able to drain 700 ml of fluid without Jon feeling sick.  Dr. G was not sure what caused him to feel like this: it could have been the pain meds that he took on an empty stomach or the procedure itself.  Dr. G felt that he was able to get enough fluid for the tests he wanted and didn't need to put Jon through it again, so he packed up the specimens and sent them to various places for testing.  Dr. G hoped we would have some results within the next few days.

After the procedure which drained the fluid that had been making him so uncomfortable, Jon felt a little better.  He began joking about the fluid, saying it looked like a home brewed beer.  He said, "This gives home brew a whole new meaning!"

Later, Dr. Bekele came in to check on Jon.  He let us know that they wouldn't really know anything about the fluid until Friday and ordered an MRI to make sure that there was nothing out of the ordinary going on in his brain.  Dr. Bekele encouraged Jon to get up and walk around to help his lungs get back to their original shape.  He also told us Jon would be staying another night.

Once the nurses brought Jon some pain meds, he followed Dr. Bekele's orders and took a few laps around the 7th North floor.  When we got back from our walk, it was time for the MRI which took about an hour.  Jon was hungry by the time the MRI was finished which made us very excited because he hadn't wanted food most of the time he was in the hospital.  He ate his "wonderful" hospital chicken dish and settled in for the night, watching The Matrix.

How it started...July 5, 2011

This whole thing started almost 4 weeks ago with slight back pain.  Jon thought it was muscle-related, so he took some Advil to to relieve his pain and went about his day.  As the pain continued over the next few weeks, though, he began to realize it was not just normal back pain. His pain increased while his energy decreased.  He described it as waking up with a really bad hangover that just never went away. On Monday, July 4th, he decided he needed to go see a doctor, but since it was a holiday he would have to wait until Tuesday morning to schedule an appointment. Meanwhile, he came down with a fever and flu-like symptoms that night.

On Tuesday morning, Jon made an appointment with our doctor to try to figure out what was going on.  Fortunately, our doctor was able to see him right away.  When he got to the doctor, his heart rate was 150 beats per minute when it should have been around 60 or 70 bpm. Our doctor immediately told Jon he needed to go to the ER.  He refused to go to Carroll, which they understood, so Jon drove home and waited for his mom to pick him up to take him to St. Agnes.

St. Agnes is where Jon had his first round of surgeries, as well as a few other procedures since then.  The doctors there actually know him as well as his history, and they care about Jon and his family. 

Barry, Jon's dad, also goes to St. Agnes for his treatments and happened to be there when he found out that Jon was on his way there.  Barry notified Dr. Miller, Jon and Barry's oncologist, and she scheduled CT scans and x-rays to be done as soon as he arrived.  Despite a significant wait in the ER, Jon was recieved immediately thanks to Dr. Miller. 

Once all the scans were finished, we met with Dr. Miller's associate, Dr. Bekele. He told us that Jon had fluid near his lungs in the Pleural Cavity and that this fluid was causing the pain in his back. The doctors decided to admit Jon and drain the fluid the following morning once he was seen by the lung specialist (his name started with a "G," so we will call him Dr. G).  After waiting a few hours, Jon was admitted to Room 735, Bed 1 where he would stay for the next few days.