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.