Light the Night Walk - October 10, 2009

Hello Everyone,

I am asking you to support a cause that is very close to my heart.

Please considering walking with us on October 10, 2009 by joining our team or making a donation in memory of my father, John Boody. Please click on the link below to see our team page.

http://pages.lightthenight.org/snj/Camden09/GPopsTeam#atabc

If you would like to mail a donation (payable to "The Leukemia & Lymphoma Society"):
Erin Ehrenworth
36 Zion Drive
Berlin, NJ 08009

Thank you!
Erin

Thank You

The Boody family would like to thank everyone for their outpouring of support during this difficult time. We were overwhelmed and amazed by the number of people that came to Jack's memorial services. Jack obviously touched a lot of lives and we are so appreciative for everyone's caring and love.

For anyone that was not able to attende the funeral services click here for a copy of the program.

Viewing and Funeral Arrangements

Viewings for Jack will be:

Wednesday, September 16th from 6:30 - 9:00 P.M

and

Thursday. September 17th from 8:30 - 9:30 A.M

McGuinness Funeral Home (Here is a link to the obituary)

573 Egg Harbor Road

Washington Township, NJ 08080

directions here

Mass to be held Thursday, September 17th 10 A.M. at:

Saint's Peter and Paul's Church

362 Ganttown Road

Turnersville, NJ 08012

Funeral service to follow Mass at:

New Saint Mary's Cemetery

515 Browning Road

Bellmawr, NJ 08031

We ask, in lieu of gifts or flowers, donations be made in honor of “John Boody” to the Leukemia and Lymphoma Society (link below).

Leukemia & Lymphoma Society
https://www.leukemia-lymphoma.org/all_donate?item_id=8072

We Will Always Love You Jack

Around 8:45 this morning Jack passed away surrounded by his family at the ICU at the Hospital of the University of Pennsylvania. He fought very hard for almost a month but the cancer eventually caused his blood pressure to get so low there was nothing else the doctors and nurses could do. We are so appreciative for the care at HUP, particularly the staff in the ICU and Oncology department, which gave us the precious extra weeks with Jack. We also would like to thank all the family and friends for their well wishes and kind words and for visiting during Jack’s time at the hospital. He never stopped saying how lucky he was to have such great people around him and I think that is what kept him around for so long since he was first diagnosed with cancer two years ago.

We ask, in lieu of gifts or flowers, donations be made in honor of “John Boody” to the Leukemia and Lymphoma Society (link below).

Leukemia & Lymphoma Society
https://www.leukemia-lymphoma.org/all_donate?item_id=8072

Again, thanks for your everyone for their love and support. I will post more details for the viewing and funeral shortly.

Back in ICU

Update 10:34 PM - Jack has some kind of infection. It could be from earlier when he was nauseous (some of it could have gone in his lungs). Right now it is not clear. Jack's lactic acid level is very high so they are monitoring it. If it gets too high the medication they have him on for his blood pressure will stop working. Right now the blood pressure medication is the only thing keeping him somewhat stable. They still have the jugular line to put back in. His heart rate was still pretty high but they have it more under control. They decided that his blood oxygen levels were so low that they needed to put him 100% on the respirator. Obviously, his cancer treatment is on hold until he is stable for a longer period of time. As I said, for now the doctors still are not certain of the root cause of Jack's breathing issues this afternoon but he is as sick as he has been since he came to the hospital.

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Update 5:12 PM - Jack has been moved back to the Intensive Care Unit. His headache has stayed even with the dose of morphine and he then he began having trouble breathing. The doctors actually gave him medicine to help get the morphine out of his system because they thought there might be a chance it was contributing to his breathing issue.

They believe that Jack may have another infection but I do not have any specifics right now. They are probably going to have to intubate Jack again and put him on the respirator. Fran and Jacks kids are in his ICU are outside his room right now.

If you were planning on coming to visit today or tomorrow I would wait to see if he stabilizes first. I will update everyone when we know more in the morning.

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2:00 PM

We visited Jack this morning to bring him a donut and coffee. The nurse was in the middle of trying to feed him his breakfast. He had a few bites but really wasn't interested in it.

Overall it has not be a good day as Jack has been complaining about a severe headache. This is this really the first time that he has said anything about real pain before so it got us a little nervous. The doctors are going to give him a small dose of morphine to help with the pain but they want to limit it so that it doesn't impact his lucidity. His ability to talk and interact is how they have been tracking his progress since the brain surgery a few weeks ago.

His overly hydrated still which will take awhile to go away. They continue to help with Lasix pills.

The alternate day schedule for Campath with will continue.

I will provide more detail later today.

Friday Night

Didn't go over tonight to visit Jack so this will be a short update.

Fran and Matt said he had been pretty tired today. His hemoglobin is still low but not low enough that he will need a transfusion. He was given more platelets today though.

Fran and Matt helped Jack eat his dinner tonight and he was a little more awake after that.

His white blood cell count is slightly higher today (in the 300's) than it was yesterday. The doctor's have said that the medicine appears to be working. Apparently the white blood cell count isn't the only measurement they use to determine its effectiveness.

Erin and I will be going over early tomorrow morning to bring Jack some more Dunkin Donuts coffee. If we talk to the doctors I will post another update then.

Thursday Night

Jack was very tired today. His hemoglobin level was very low which prevented the hospital from providing him his physical therapy today. He will need to wait until his he has a blood transfusion and is a little more rested before they will be able to get him up to try and walk and do the other therapy. This can possibly happen tomorrow depending on his condition.

He was scheduled for the blood transfusion and then he got another round of Campath (a higher dose this time) this afternoon along with the Benedryl. So, he will be even more sleepy probably. I was told the Benedryl is given because people tend to have allergic reactions to the Campath but Jack has been tolerating it well.

Christina and and her mom visited Jack this morning to make sure he ate his breakfast. They brought him some Dunkin Donuts coffee which he had been craving.

Matt saw him in the afternoon and said he was asleep and out of it most of the time and refused to eat any lunch. His appetite is probably affected by the low hemoglobin and overall lethargy. Fran and Erin said that Jack was more alert when they saw him this evening. They were able to get him to eat some dinner.

Wednesday Update

The nurses said that Jack had good night last night. He was pretty awake when we came to visit. I fed him some vanilla ice cream that the nurse got for him and he enjoyed that.

Today Jack's white blood cell count was in the 350s (a little lower than yesterday). It is fluctating a little each time that Jack gets the treatment. Matt talked to the attending doctor today and they are going to continue to monitor the Campath treatment for at least a couple of more days. It is still too soon to make a determination if another drug is needed. Jack is supposed to be visited by the lead oncologist Dr. Goldstein (his primary doctor from the first chemotherapy from a few weeks ago) to discuss his progress and next steps.

Jack had physical therapy again today. It was done on the side of the bed and they helped him move his arms and legs and sit up a little. They told him they are going to try to get him up and out of bed to try to walk around tomorrow. He keeps talking about the "special" socks they gave him with the little grips on the bottom. We'll see how it goes but it will literally be baby steps probably to start with.

Marybeth and Scott came to visit today and Jack was telling her about his visit from Father Mike (a friend of the Marybeth's mom) who came to see how Jack was doing. Father Mike was here a few weeks ago to pray with the family when Jack was going through his surgery and the time in the ICU. I forgot to mention it but a rabbi also stopped by the other day when Fran asked to get communion for Jack. Apparently, the only person volunteering in the Pastoral that day was a rabbi. Jack was happy to get the visit from the rabbi anyway. Jack finally did get his communion yesterday from Father Mike and he was very appreciative of that.

Hopefully, I will have more info about Jack's treatment by Friday.

Tuesday Night

Jack had a lot of visitors today. He was still talking about his neighbors Kathy and Jack visiting yesterday and was so appreciative of it. He likes having people here to talk to and enjoy his music with.

Fran talked to the nurse earlier today and found out that Jack's platelet count was down to 21 again. His white blood cell count is up over 400 now but the doctor's are not ready to try and different treatment yet. They are going to give it a few more days (probably until Thursday or Friday) and then reassess whether to change medications.

Jack was in the therapy chair for awhile again today but he was complaining the his back was sore. He is back in bed now and got a pillow from the nurse so he is a little more comfortable.

When we got to the room tonight Jack had some volunteers playing guitar and singing to patients in the Oncology Department. They played some Grateful Dead and then Jack asked for John Denver and they played "Country Road" and everyone sang along (including Jack). It was a really nice surprise!

Labory Day Update

The doctor came in last night before we left and updated Fran on Jack's condition with his recent coughing and breathing difficulty. They said that he does not have pneumonia but his lungs were inflamed. The doctor recommended that if Jack started taking in longer, deeper breaths (as much as he can handle) this could help to alleviate his current condition.

They are still treating Jack for this swelling in the legs by putting some air compression pads around them. Apparently, this helps the bodily naturally get rid of the fluid build up.

The attending physician we spoke with today went over some of the plans for Jack's cancer treatment. They said they were going to stay with the current schedule of every other day with the Campath at least for this week. The oncology team would then meet with the family later in the week to determine if the drug is working as much as they would like or if they need to try a new course of treatment. While is current white blood cell level is half of what it was when he first got here it is still much larger than they would like.

Jacks current white blood cell count was between 300 and 350. He looked a little tired still but was very talkative and was thanking people left and right for the cards, for visiting and for the kind words that were posted here on the blog. The nurses said he ate all his breakfast, and when we got here he was in the middle of eating some meatloaf and mashed potatoes. He gave his chocolate chip cookie to Josh (who was very excited again to see G-Pop).

Jack was content to sit and listen to music most of the time that we were here. He has always loved his music and it is very comforting to him. He kept asking for more of the pineapple soda with ice (he's gone through like 3/4 of the 2 liter bottle already).

Jack had a few comments for people that Erin wrote on the "Thoughts and Prayers" section.

Jack Still Very Tired

Update 3:50 P.M. - After the original post today Jack woke up a little and was able to put his glasses on and see Josh. He said "Hi Josh." Josh blew him a big kiss :)

One of the attending doctors came to look at the Jack this afternoon to assess him since was so tired lately. He said there is a possibility that Jack may have had a seizure, since was recently take off his anti-seizure medication. They are going to do a EEG shortly but the doctor mentioned it may not show much. The doctor did a battery of tests like asking Jack his name and where he was and the month and Jack did fine. He was able to move his extremities, except for his left arm which he could not lift up and he is having a little trouble keeping his eyes open.

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2:18 PM - Since yesterday afternoon Jack has been very tired and really not as responsive as he had been a a few days ago. The doctors scheduled him for another CAT scan to see if anything was going on that could explain his current condition. For now the results were not conclusive but will need to be reviewed by the specialist before they can determine if anything neurological maybe going on.

His white blood cell count was still near the 300 mark again today. They are not giving him another round of Campath until tomorrow. The infectious disease doctor was here this morning and gave Jack a complete workup and is concerned about how swollen he still is. They are giving him Lasix still for this but it honestly could take weeks for his body to absorb all of the excess fluid. The doctor believes that Jack does have some type of infection that is causing his lack of energy.

Fran said she was able to get Jack to eat a good breakfast this morning but he didn't seem interested in lunch when we were there. We brought Josh today and he kept telling Jack to "open his eyes". It was pretty tough or Jack to do this but he did squeeze his hand and acknowledge he was here.

Continuing Campath Treatment

The doctors said that Jack's white blood cell count is in the 300s today. The attending oncologist thinks the reading from yesterday (150s) must have been incorrect. He was actually in the 300s for a few days before. They did three days of the Campath in a row and they are now going to start doing 30 milligrams every other day going forward. The doctor mentioned that all of the current white blood cells that they are detecting are actually cancer based PLL cells. This means that they are non-functioning white blood cells. They have him on preventive antibiotics since his immune system is so depressed. His swelling is still concerning the doctors and they have him on Lasix to try and control it. They have to be careful to do it on a limited basis because doing it too fast can hurt his kidneys. Apparently, it can take a long time for the body to recover from being provided so much hydration (like he was in the ICU).

Overall, the doctors think that he is progressing but it is still to early to tell how the cancer medicine is really working.

His blood sugar was slightly elevated (in the 210 range) and he seemed pretty lethargic while we were here. He was actually sleeping most of the time. Fran said he was much more awake yesterday. His dinner was delivered today so we are going to try and make sure he eats... nobody was here with him at lunch time so we are not sure how much he actually ate. He pulled his feeding tube out again but the nurses said that as long as he is eating they won't put it back in.

The department was a little short staffed today so they weren't able to get him in the physical therapy (PT) chair today but they said they will probably continue with full PT on Tuesday.

Also, Fran ordered Jack a new pair of glasses so hopefully he will be able to start reading all of the posts people are putting on here. We are also going to bring Josh (his grandson) over for a quick visit tomorrow. He hasn't seen him in weeks so that should lift his spirits.

Friday Night

Jack had a good day today. He received another dose of the Campath last night. His platelet levels were in the 50s which is better than it is has been in awhile.

His white blood cell count was back down in to the low 150s, which is promising. I am not certain about how they are going to continue the medication but I will post this in the next update.

He was able to sit in the physical therapy chair today and for breakfast he had an orange, but the doctors said he will need to stay on his feeding tube for a little while still to make sure he is getting all the nutrients he needs. His other medications he has been taking orally for the last day or two so that is also a good sign.

Most importantly, when we talked with Jack today we found out that he was finally eating a Wendy's Frosty. So for everyone that was pulling for him to get this, it finally happened! Hopefully, he can enjoy these from home very soon. Also, when Erin talked to Jack today he was still his funny self and asked her when our son would be in day care. Jack told her would pick him up for us on Thursday for us :). Probably, just a bit a wishful thinking...

Thursday Night

Jack continues to look better. He was a little tired today though. His white blood cell count was down to around 240 which is better than yesterday and they have him scheduled for more Campath treatments today and tomorrow. His platelets were at 31 which is slightly higher than yesterday and they gave him more today. He asked the nurse if he can have cough drops since his throat has sounded pretty hoarse. She suggested that it might be a better idea to to a cough syrup instead so there is less of chance he will choke on it.

They had a little trouble with his physical therapy... moving him around and getting him out of bed. They are going to try a special PT chair tomorrow to see if it helps.

By the way, Jack finally got his yummy milkshake. It wasn't a Frosty (or a Blizzard) he had to settle for a plain vanilla one from McDonald's. He said it was delicious!

We put a bigger picture of Josh (his grandson) up in his room. Fran also read him all the cards that people have sent him since he got to the hospital. Jack really liked that.

I won't be at the hospital again until Saturday but I will try to get more info when I can.

Wednesday Update

Jack was moved early this afternoon to his new room in the Oncology department. It is much more comfortable and much more private then his room at the ICU. They did another swallow test early this morning and he finally passed. He is now allowed to "ease" himself back into having liquids. He had some Ginger Ale and Diet Root Beer. He is still asking for pineapple soda (any know where to get it?). The Frosty will need to wait a little longer still.

His white blood cell count continues to be in 300s. He had another treatment last night of Campath and will have another one tonight. They are doing the drug intravenously now rather than the injection to see if it has a better effect. The doctors think because he was so swollen he wasn't getting its full impact.

Jack's platelets continue to be low even with the transfusions. The nurse said that this is typical for a cancer patient and, for now, we really can't expect it to get much higher than that. Matt also asked the doctor's about when we would know if the Campath treatments are doing their job and they said it could be another week before they know for sure.

Jack keeps taking his feeding tube out inadvertently so they have to keep putting it back in. The other night it took three tries to get it in correctly. Hopefully, he won't be on it much longer. On a lighter note, a funny story from yesterday that I forgot to mention was that Jack's nurse was a very big football player size guy (named Adam) and when he was going to get the doctor to redo Jack's tube he said "I'll be back". Fran thought is sounded a lot like Arnold Schwarzenegger and we all got a kick out of it.

Tuesday Night

Jack had his third dose of Campath last night. His white blood cell count actually spiked up over 300 again (up from the mid 100s the other day). The doctors have decided to continue to give Jack the medicine every day to continue to see if it positively impacts the white blood cell count.

The doctors have determined that the anomaly from the lung bronchoscopy was actually some kind of infection. They are not certain what type but they have been providing him general antibiotics up until now and he has not shown any complications from it.

When we visited tonight he seemed to be coughing less but was still very tired. Fran said they did get him into a chair and sat him up for a little today as part of his physical therapy. He was still having issues swallowing so it will be a little bit longer before he can get a real drink. He was swabbed with some apple juice though so that was a little bit better than water. At some point today he pulled out his feeding tube so they had to reposition this evening to make sure it was working properly.

If he remains stable, Jack will be moved to Oncology department sometime tomorrow. Then he will have a room with window and might get onto a better sleeping schedule.

Monday Update

The nurses said that Jack had a rough night sleeping. As a result, he is a little more lethargic today. His oxygen level (in the blood) is in the low 90s. The oxygen they are providing him is set currently at lower at 2. By comparison, yesterday after the breathing tube was removed he was originally set at 4. Ideally, the doctors want his blood oxygen level to be in the high 90s to 100.

He is still asking for drinks but the speech therapist said it will still be a little while longer. The test they did today showed that his gag reflex is still to weak to take liquids. Ironically, the nurse said it would be more likely that he would get something like Frosty rather than water first since it is more viscous and less likely to get into his lungs.

Jack had another CT scan this morning and the neurologist said that everything looks normal from that perspective. The team has him scheduled to start physical therapy tomorrow, probably to do things like get sitting him up and moving around his extremities. Focusing on things that may have been impacted by the stroke. Tonight the nurse wanted to see how his left side was doing and asked him to move his left foot. He wasn't able to do this but he was able to squeeze the nurse with his left hand.

He is scheduled for his third dose of of Campath tonight. There is chance if his condition continues to improve they will move him out of the ICU and into the Oncology department. They will not know for sure until after the treatment.

Understandably, Jack keeps saying he wants to get come up and come home. We reassure him that he has come a long and way and just needs to be strong a little longer so he get healthy enough to get out of here.

I have been reading the thoughts and prayers from everyone to Jack each night and he enjoys hearing them... so keep them coming!

Sunday Update

Good news. They took out Jack's breathing tube. He had been on "minimal" settings for most of the day and they decided he was ready to come off the respirator. Before this, he had had been writing to everyone that he wants all kinds of drinks (grapefruit juice, coke with lime, a milkshake, 7UP). Now that the tube is out he keeps asking for a shake to all the nurses and doctors. The lead doctor said he will probably need to have the physical therapy team take a look at him and set up a program to get his left side stronger. He told the doctor that if he gives him a shake he'll move his left arm all he wants. Obviously, he hasn't lost his sense of humor. :)

Before Jack can get any drinks the doctors said that the speech pathologist will need to wait to see how he handles a swallow test tomorrow. Apparently, patients that have had a breathing tube in for an extended period of time tend to have issues with their gag reflex, so if we gave Jack a drink too soon there is a chance he might get it in lungs and he would have to be put back on the respirator.

They are continuing to give Jack platelets as his numbers were still on the low side. The white blood cell count is down from yesterday (around 130). His temperature has been perfectly normal. The pulmonary fellow said that the culture from the latest bronchoscopy did show abnormalities and the lead physician said he would be surprised if the cancer cells were not present in Jack's lungs based on the first biopsy results. The are scheduled to give Jack his final dose of Campath tomorrow and will evaluate his levels then.

Jack's lead doctor is actually rotating off from his care today and we are going to meet a new one tomorrow who will take over his treatment. So far, the doctors have been excellent in keeping us informed and the nurses have kept Jack very comfortable. Hopefully, there will be more good news to come.

Second Round of Campath

Update 9:30pm: Erin spoke with Fran tonight and she said that Jack's blood pressure has stayed in check even after the Campath treatment. This is a good sign so far because it probably means that the medicine isn't what caused his blood pressure to fluctuate the other day. Jack was also still feeling the effects of the sedation from earlier.

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I took Chris to visit his dad early this morning before bringing him to him up to Wilkes Berre PA where we were meeting his uncle to take him back to Syracuse University. Jack was resting when we got there but he nodded when we said Chris was there to say good bye (at least until next weekend) before going back to school. The nurse said that he had a pretty uneventful night. He was back on the feeding tube again and was set at around 70% oxygen on the respirator. He asked me for some water, so he was still very thirsty like he has been the last few days.

When the doctor's came around this morning they said that his white blood cell count had actually spiked up to over 200 (about three times more than it was yesterday). They decided to give him the second shot of Campath at that point. They will continue to monitor his condition and decided if and when to give him the final dose. During the day today Jack was actually very aware but at one point became very agitated and anxious so the doctors gave him some Benedryl with the Campath injection as well as a sedative. Because of this Jack was much less responsive this evening.

As of this morning the results of the bronchoscopy were not back yet to determine if the cancer is in his lungs. This information will likely impact what the doctor's decided to do.

Friday Afternoon

They are keeping Jack on a low dose of the blood pressure medication and the levels are staying relatively normal. They had him much lower on the oxygen but had to raise him back up to 100% while they did the bronchoscopy to get another tissue sample from his lungs. The results of this will determine if the cancer is in his lungs. His platelet count after his most recent transfusion is in the 60s which is much better than it was during the day yesterday. His white blood cell count is around 72 (continuing to go lower each day), and the doctors believe that the cancer medication (Campath) may be able to get the count down even closer to normal levels. First, the oncology team is going to review his status tomorrow morning and then decided whether or not to continue with the next dose of Campath. They want to be certain that the drug isn't what caused his blood pressure to fluctuate yesterday.

Stabalizing Jack's Blood Pressue

This morning Jack's blood pressure became erratic and the doctor's were very concerned about it. They were able to get it somewhat under control with additional medication but can only provide so much medicine for it. They will continue to monitor his blood pressure level regularly. He is also running a temperature which the doctors believe to be related his infection, but with his condition it doesn't always show up tests so they are giving him a different antibiotic to treat it.

Jack has been very aware and responsive today. He even was trying to mouth something to me when I came in the room. After a little back and forth the nurse was able to figure out he wanted a Wendy's Frosty :) (I thought he was saying "Frost"). Jack had to settle for some water from an oral swab. He was squeezing my hand very tightly today and did open his eyes a few times when he heard people he recognized.

Jack's fluid resuscitation (or fluid replacement) levels have also fluctuated. The doctors continue to vary how much hydration his is receiving but they noticed he was showing a little swelling in his legs so they need to make sure they keep a close eye on it.

They completed the first round of Campath overnight but it is too soon to see what kind of effect it may have had. The good news is that his white blood cell count continues to go lower and today it was actually the lowest it has been since he was admitted. He is scheduled to get another round of the medicine overnight tomorrow but the doctors are waiting for more test results before deciding whether or not to proceed. They said they will either use the same dose or a smaller dose but will not increase the dosage as they had originally planned.

Starting Treatment Tonight

Jack had a high fever last night and throughout the day today but it did finally break and it is lower now. The doctor's said this is pretty normal for his condition. Jack was pretty lethargic today and did not feel as well as he had the last couple of days. He was actually resting when I went into see him tonight.

A clarification from yesterday is that Jack's form of cancer has actually been diagnosed as T-cell prolymphocytic leukemia (T-PLL). It represents 2% of all small lymphocytic leukemias (SLLs) that I wrote about yesterday. For more information on this particular form of the disease click here.

The doctor's have started him on a new type of antibiotic to make sure it can still continue to be effective, since your body can build a resistance to them. His platlets were pretty low today but his white blood cell count has continued to go down.

They have said based on recent tests they have determined that some of the cancer cells have made their way into and around Jack's lungs which may have been causing some of the pneumonia like symptoms. They are starting the cancer treatment (Campath) tonight in a small dose and they will do it two more times with two days between each injection. They are going to do some type of test to see if his body has any kind of reaction to the drug. The nurse also mentioned they were going to do another scope into his lungs to get sample of the fluid/tissue for testing.

Update on Cancer Treatment

The doctors discussed Jack's recent movement with his left side and said that he will have continued weakness on his left side which will require some rehabilitation and assistance.

The doctors have diagnosed Jack's current cancer as Small Lymphocytic Lymphoma (SLL), which is essentially the same as Chronic Lymphocytic Leukemia (CLL) but it presents itself primarily in the lymph nodes rather in the blood and bone marrow. For a more detail explanation of the disease click here.

They are going to try a new drug therapy called Campath (click here for more info). The doctors explained that this drug had some success with Jack's form of cancer. They will need to clear up his pneumonia first, before they can start this treatment.

Monday Evening

Jack is doing fairly well tonight. He is more alert again. He actually wrote a note to the nurse that said he was "too hot" so they took his blankets down. His white blood cell count is down below 300 for the first time since he was admitted. They think that this is mostly residual effects from the original steroids they gave him and they will continue to give him the low dose. They are going to try tomorrow to being finding the platelets that match his blood type. The transfusion they gave him today should have had him up around a 90 but he was only at 71 so they think he isn't accepting the full dose they are giving him now.

Also, the oncology team is going to meet with the family tomorrow to discuss their recommendation for treatment. I am back to work tomorrow but I will try to get updates up as soon as I can.

Monday Update

Jack was trying to say some words to the nurse this morning. He was also squeezing hands lightly again with his left side. He is still pretty tired. His pneumonia is still present but currently under control. His white blood count is a little lower again then it was yesterday. His blood sugar level around 150 which is good. The nutritional doctor was in to check on him and asked if he was in any pain again and he shook his head that he wasn't. After rounds the doctors said the swelling in the brain and bleeding is still stable. The oncologist fellow discussed another drug treatment that they can try but only when Jack's other issues are resolved. Right now their largest concern is his platelet count. They continue to give him transfusions but his number remains low, which means his body is not producing enough platelets. They also want to start giving platelets that are his own blood type cause his body might start rejecting the general ones.

Sunday Afternoon/Evening

Update 9:19 PM - They took Jack down for his CAT Scan this evening. While they were down their one of the nurses though she felt him squeeze with his left hand. Then he tried to grab his feeding tube by lifting his left hand completely up. This is very positive news as he had not been moving his left side at all practically. It could mean that whatever pressure was causing this left side to be immobilized from the initial brain bleed may have corrected itself. We will have to see how this progresses during morning rounds tomorrow. Preliminary results of the CAT scan show that the swelling has gone down and this most likely means their is no additional bleeding. They will need to do further examination to be sure.

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Update 5:47PM - They are going to give Jack a low dose of insulin shortly. After monitoring his blood sugar level it is a little higher than they would like. They will keep doing readings hourly.

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The doctors have decided to continue to give Jack steroids at a lower dose and they have seen some improvement in his white blood cell count. The central line in his jugular is working so they removed the line from his leg. The are planning on doing another CAT Scan shortly. It is confirmed he does have bilateral pneumonia which we were aware of when he was first admitted. However, the secretions are clear which is a positive sign. He is still on the respirator but only to be given oxygen, right now he is breathing on his own.

Even though it was a little stressful at the end, he was able to listen the Phillies game this afternoon and got some satisfaction from that

Sunday Morning

Overnight, Jack's anesthetic started to wear off and he got very uncomfortable and ended up removing his feeding tube. They put it back in and then restrained him again to make sure that he didn't repeat this. He is back to being aware of people around him and is following commands (squeezing hands, opening eyes, etc). Squeezing people hand's and slightly nodding is how he is really communicating with people right now. The doctor's came by on rounds again about an hour ago and his condition has remained the same. Jack was given a transfusion last night. His white blood cell count is still extremely high and his platelet level is around the same amount it was yesterday (around 60). Ideally, the neurologists would like it to remain above 80 for consecutive days. They have also increased his oxygen levels again to help him breath better. The oncologist mentioned that if Jack can remain stable they may try a low does chemotherapy soon but this will have some level of risk since he had his original chemotherapy about 2 weeks ago. If I get more information I will post another update today.

Note: Added a section to the right side of the page where you can post your thoughts and prayers for Jack.

Saturday Evening

They spent a long time giving Jack the feeding tube and his moving his central line. They ended up sedating him again so he his not as responsive as he was yesterday. He was able to confirm yesterday that he was not in pain, though today he does appear tonight to be very tired. Which is understandable with all the procedures he went through this afternoon. They took another chest x-ray to make sure the new tubes were all properly put in.

At this point Jack has also received three heavy doses of steroids to help combat the high white blood cell count and the doctors are still waiting for it to return to a much lower level.

I will post another update if I learn more after morning rounds tomorrow.

Jack Gets Central Line Moved & Feeding Tube

UPDATE 5PM: Jack has also developed neutropina which limits the number of his white blood cells. Doctors are recommending we limit visitation to direct family members only for now. If you want to come to see the family there is plenty of room in the waiting area in the ICU.

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Thanks to Christina for providing me an update!

After the doctor's rounds this morning we were informed that they are moving Jack's central line into his jugular because they were concerned about infection. They are also putting in a feeding tube this afternoon to help give him necessary nutrients. He is continuing the be given insulin to control his blood sugar level now it is going to be intravenously rather then with shots.

A chest xray was done last night and the results showed some improvment but he still has some pulmonary adema (fluid in the lungs). They treated it with lasix last night and he was able to get rid of most of the fluid. Based on his EEG from yesterday they determined that he should be given anti-seizure medication because it would very hard for them to determine if he is, in fact, have a seizure because of his current conidtion.

His blood pressure continues to remain stable with medication. They did more blood to see if he is oxygenating, and they put his ventilator back up to 90% to make it easier for him to breath. They gave him additional platlets this morning but do not want to give this very often because of the risk of developing antigens and having a transfusion reaction.

Saturday morning

Update 11 am - Jack's numbers for white blood cells continues to improve. The resident that took care of him overnight on Wednesday came back to check on him and had Jack open his eyes really wide. Until then he had only been opening them a little here and there. We are still waiting for morning rounds to happen to get additional information.

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Jack is still fairly stable and in the same condition he was yesterday. He still has the mucus issue and they are going to do a chest scan this morning to see the extent. Overnight he was uncomfortable and kept shifting around so they eventually restrained his arms. After that he was able to relax some and get some rest.

Friday Evening

The doctors that have visited tonight to say we need to wait to see how Jack's clotting issue progresses. For now it appears the bleeding has stopped. He is much more responsive now after the anesthesia was stopped and he definitely recognizes everyone when they say hello. Right now he can squeeze your hand and nod a little, and tap his foot at the bottom of the bed.

They have been giving him steroids and the oncologist said his while blood cell count is down from the level it was at when he was admitted. He is also over the platelet level that they were hoping he would get to, so these are at least some positive signs.

He has had some excess mucus formation that they are testing, he has been able to cough a lot of it up and the preliminary thought is that it could be pneumonia related.

Post Surgery & Overnight Update

Jack finished surgery yesterday at 6pm. The doctors were concerned that he wasn't clotting properly and continue to provide him with platelets and clotting factor. They are hoping that he will start to heal on this own but have said at this point we simply have to wait. Overnight, there was no major change in his condition. His oxgyen levels they were giving him were reduced slightly. This morning they did take him off the anesthesia (propofal) he was on to see how he would react in terms of response to stimulii. He was aware of people and did squeeze Fran's hand when she spoke to him.

The doctor's did mention that as a result of the original stroke and brain bleed there is probably permenant damage and he will have partial paralysis of his left side. It is hard to tell the extent of the damage until he is completey conscious. We noticed he was only moving his right arm and leg when he moved around last night and today.

They did an EEG test this morning to review his brain activity and we should have those results tonight as well as an update on his overall condition from Jack's team of doctors.

Jack Goes to Virtua and Then UPenn

2 weeks ago Jack began not feeling well and was admitted to Virtua because the test at his family physician showed he had very low blood platlets and he needed a transfusion. Once admitted they determined that the cancer he had 2 years ago had returned. This time very aggressively. His white blood cell count was up to 600 (a normal person's is around 4).

After discussion with the oncologist at University of Penn Hosptial they decided to start chemotherapy again at Virtua and this was done for three days (August 10th-12th). He was than released that Friday night.

Over the weekend he began feeling increasingly weak and light-headed and eventually returned to oncologist on Monday, and then gave him saline to combat his dehydration which was at the time considered a possible side effect of the chemo. That day the white blood cell count was still going up and it became apparent the chemo had not had the desired effect.

On Tuesday, he got more platelets and saw the oncologist again and which point he returned home but still has the same symptoms.

On Wednesday still not feeling well and returned the oncologist. At that point their recommend going to the University of Penn Hospital.

He spent a few hours in the emergency room and was eventually admitted and given a room in the Intensive Care Unit.