Pain...Swelling...Physical Therapy...Pathology Results...Incision Pics

11.15.14

The last few days have been very long and tiring but Jimmy is feeling a little better every day.

The plastic surgery team wanted Jimmy to be on complete bed rest with no movement for at least 48 hours after surgery. They wanted to make sure to give his incisions time to start healing and they especially didn't want the incision with the graft to bend at all. It is critical that the graft site heal properly since the grafted area is covering the prosthetics. This meant that Jimmy was to stay on his back at all times under told otherwise. The plastic team is also keeping an eye out for infection at the incision sites.

The vascular team wanted to continue to have the blood flow to his left foot monitored on an hourly basis to make sure the prothestics were functioning properly.

The orthopedic team is the head team for Jimmy's care and they have been waiting for pathology on the mass to check the margins. They are working in conjunction with a pain team to try and keep his pain under control.

On Wednesday afternoon, 11.12.14, the plastics team gave Jimmy the okay to be moved from ICU to a regular room since the pulse in his left leg was consistent and regular and they felt that monitoring less frequently would be okay. They were finally able to manage his pain and it didn't encompass every minute of the day for him. Since he had not been allowed to eat anything for the first 48 hours after surgery, he had now been told he could have clear liquids.

I also have to mention this. The nursing care in ICU was superb but today the nursing care stinks. Since Jimmy couldn't move or be moved until today, he had a catheter and had been having to used a bed pan. Sorry to mention but its a reality. The pad underneath of him wasn't changed between incidents and was dirty. The nurse told me that they would get to it next time. This made me angry. All of the doctors are concerned about infection and the nurse seemed very unconcerned. Well, needless to say, I brought it up with Dr. Weber, his orthopedic surgeon who did his surgery and is in charge of his care. She said she would take care of it and to please let her know if anything else seemed inadequate or detrimental to Jimmy's care.

Physical therapy came by on Thursday, 11.13.14 and wanted to get him started. Jimmy is only allowed to sit up to a 45 degree angle but he's been given the okay to start PT. The goal for today is to get out of bed and into a chair, since he is now off of complete bed rest. Well, it took two people to get him out of bed. For him to just sit up causes excruciating pain. The abdominal incision is pulling and the groin incision is compressing...neither of which are a good thing. He is not allowed to sit straight up except to get up and down for fear of bending the groin incision where the graft is located. To see Jimmy so helpless and to have two people help just sit up is hard to watch. Even though the chair is right next to the bed, they gave him a walker so he could have some stability on his own and allowing him a little bit of independence at the same time. Well, he got in the chair and they wanted him to stay there for about 30 minutes to an hour. He lasted 15 minutes before he was in too much pain to continue sitting in the chair. Then he had to get back in the bed. Thankfully, they had given him instant IV pain medication to help take the edge off before even starting the process of getting out of bed. Finally, he was back in the bed and he was exhausted.

Jimmy had also been cleared for regular food on Thursday but wasn't really that hungry. I had hoped he would have more of an appetite but with the pain and the medication, he just didn't feel like eating very much.

The doctors are now concerned about infection. They removed the bandages and his incision sites are very red and very swollen. The plastic surgeon seems to think he does have an infection even though he is on two strong antibiotics. Jimmy has also been running a fever over 100 and that is somewhat concerning. This is something that will have to monitored closely. They are also concerned about his healing properly. Since he had radiation, the healing process is much slower. Below is a picture of two of his three incisions. He does have an incision about 7 inches long on his right leg where they were going to try and harvest veins but decided to use the prosthetics instead.


Groin and abdomen incisions


Close up of the groin incision

The swelling and pain in his leg, abdomen and groin have been a constant factor and most likely will be for a while. Jimmy was on a morphine pump for pain but today, they believed that he was okay to start the transition to oral pain medication, since he obviously can't go home on the IV pump. Jimmy didn't want to get rid of it but they didn't give him a choice. The sooner he progresses in the steps it takes to go home, the better. They have also started to transition him to oral medication for his blood thinner as well. They are continuing to monitor his blood levels to make sure they have the right dose.

Thursday also brought physical therapy again. We are all concerned about the steps in our house that Jimmy will have to climb. That's the end goal for him...to be able to navigate steps. They therapist got Jimmy out of bed today and the goal was to get out of bed and just walk to the bathroom and sit in a chair for a while today. Woo hoo! He was able to do both. It wasn't easy or quick but he did it. He is very, very sore and his left leg is very weak. He was able to sit in the chair for about an hour though and that was really good. We do know that Jimmy will lose some mobility in his leg but at this point, we don't know how much.

By Friday the pathology results were in on the tumor. Dr. Weber said that the tumor was 90% necrotic thanks to radiation but the 10% still alive had been continuing to grow. The said the margins were good except for some microscopic cells that were still active. She did not expect Jimmy to have anymore radiation because the statistics did not indicate that radiation would help. She did say that Jimmy would most likely have to consider chemotherapy again sometime in the near future. Since the cancer is in his bloodstream, there is still that possibility that it will come back again. Have I mentioned how much I HATE CANCER?! Jimmy is adamant that he won't do chemo again but I want him to at least consider it if it will save his life.

The concern all day today is to change one of his two remaining IVs. It has been in for 5 days (they are only supposed to be in for 4 days) and needs to be replaced. The problem is that Jimmy literally has no veins that are viable for an IV. They are all collapsing. Two nurses came in today to try and find a new location for the IV without success. They said a doctor will most likely come by and figure out a way to get a new IV inserted. They said ultrasound may have to be used.

Friday also came with some emotional ups and downs. Jimmy has said all week that he didn't have any idea how involved this surgery would be and he had not expected all of this. Today he was really depressed. I want to help him but today I did not know how. I just told him that everyday was a day that he was taking a step toward getting better and being able to go home. He's worried about his mobility. He's worried about working. He's even a little scared but I'm sure he won't admit it. I know I am worried about all of those. Today was a bad day emotionally for me. I felt like just breaking down all day long but knew I couldn't because I didn't want Jimmy to see. I have been running nonstop since Monday morning. I'm worried about shuffling Logan to and from school, while still making sure he gets to swim practice and keeping his life somewhat normal. I'm trying to make sure I'm at the hospital early in the morning to talk to the doctors and I stay all day so I can help Jimmy and keep him company. I'm getting about 4-5 hours of sleep a night and the traveling back and forth to the hospital (about an hour each way) is definitely starting to take its toll. I am completely stressed out. I'm exhausted and I have a constant headache. I cried as soon as I left the hospital today and called my best friend. I can always depend on her to cheer me up...that's what over 30 years of friendship can do for you...so, thank you Lisa!

Well, it is now Saturday 11.15.14. Logan gets to come and spend the day with his Dad. He is looking forward to just hanging out today in the room today with us. I have missed him so much this week and I feel a little guilty for shuffling him around but I know I didn't have a choice.

Jimmy had physical therapy again today and he walked down the hall about 20 feet and back using the walker. It was slow going but he was doing it. He is having trouble moving his left leg forward because the muscle that was removed controls the ability for him to lift his leg. She physical therapist also wanted him to try a step on crutches as well. It was such a tedious and difficult process for Jimmy but he managed to do the one step. By the time he got back in bed, he was completely pooped. Each day has been a little better and everyone is happy about his progress.

The doctors have been in and out all day and of course, another nursing issue has come up. Last night when they changed Jimmy's bed, they put the linens in a chair. They actually had to change his bed twice because they washed him up in his clean sheets and got them wet, so they changed them again. There was also a couple of pillows with blood on them in the pile too. Well, it turns out that these dirty linens stayed in his room all evening and ALL NIGHT LONG. When the plastic surgeon came in this morning, he was pissed. Since Jimmy's incisions are uncovered and more susceptible to germs, not to mention the fact that he already has an infection, this was completely unacceptable care. Sometimes I wonder how some of these people have jobs. Maybe they are just desensitized to it all.

Jimmy did have quite a few family visitors today and has seemed in good spirits all day. We have had a nice day just being together. I can't wait for Jimmy to come home so he can sleep in his own bed and he can eat his own food and I won't have to worry about Logan getting to and from school and activities.

Thank goodness Jimmy is getting better every day. He is alive and the doctors did not have to take his leg and for that I am grateful. I appreciate my friends and family helping me out all week. I don't know what I would do without you. Thank you again to everyone that has sent their support and prayers to our family. We are eternally grateful.

I will continue to post and update on Jimmy's progress.

Tumor is Out...10 1/2 Surgery is Over...FYI...GRAPHIC PICS from surgery below

11.11.14

Well, surgery is over. It took 10 1/2 hours...much longer than we expected but with a positive outcome.

I briefly described in the previous blog about how the surgery might go. Well, here's how it went...

After Jimmy went into surgery, the first doctor to work on him was the vascular surgeon. He placed an IVC filter in Jimmy's right leg. This filter is designed to catch blood clots before they reach his lungs. The filter is a little less than an inch long. Here's a pic...


He had to stop taking his blood thinner one day before the surgery and has not yet resumed taking it. Also, since he has a history of blood clots in his lungs and deep vein thrombosis, the doctors decided this filter was necessary.

After the vascular surgeon put in the filter, the orthopedic surgeon, who is the Chief of Surgical Oncology at Penn and in charge of Jimmy's case, she proceeded to take out the tumor. She found that the femoral vein and the femoral artery in his left leg, along with nerves were completely encased in the tumor. She had to remove an entire muscle from his leg...the iliopsoas muscle. This muscle controls the ability to lift your leg up like when you climb stairs. She did have to cut both the vein and the artery and take those pieces with the tumor (the vascular surgeon would repair them later). When she came out to talk to me after her part of the surgery, she said it was a very hard surgery and took longer than she expected because of the size of the tumor. She said the tumor was really deep and she had to remove a mass larger than the size of a softball from his groin. She sent the mass to pathology to confirm that she got clear margins around the tumor. The pathology will take a couple of days to complete. The incision is about 10 inches long.

The vascular surgeon was taking a second turn and his job this time around was to repair and/or replace any vessels that has to be taken out with the tumor. Since the main vein and the main artery in his left leg both had sections removed, he needed to repair these. They had already prepared an incision in his right leg to harvest veins from but soon found out that this was not an option due to the size. The vein and artery are both larger than the veins they wanted to harvest and would not provide adequate blood flow so the surgeon decided on a prosthetic for both the femoral vein and the femoral artery. The prosthetics are made of a material similar to Gore-tex and have ridges for flexibility. I am posting pictures of what they did during surgery...THEY ARE GRAPHIC but I think very interesting to see. Again, this is very GRAPHIC. The picture on the top is before the prosthetics were put in. The middle white thing is just gauze but you can see on the top and bottom of the incision the vein and artery where they have been cut. The artery is the one with the thicker wall. The bottom picture has the prosthetic. It kind of looks like PVC pipe. You can also see a little piece of his right leg where it had already been prepped for vein harvesting. I hope I didn't offend anyone with this pictures but there are people going through this who do want to know what to expect and that's why I'm posting them.

Before prothestics

After prothestics

Now that the vascular team has done their job, the plastic surgery team can begin. While it sounds like "Oh, they are just going to make his incision pretty and close him up", let me assure you it is no joke what they did.

They had to close up the incision on his right leg where they had planned to harvest the veins. Its crappy that that was an unnecessary incision but an easy one to close up. It is about 7 inches long. The tumor site, however, was a different story. As you can see from the pictures, the incision was really big and really deep. In order to fill up the space, they needed to insert another muscle from somewhere else in his body. Given the length and the strength of the muscle needed, they decided to take one of his abdominal muscles...the rectus abdominus (also known as the six-pack muscle). In doing so, he now has a 3rd incision down the length of his abdomen also about 10 inches long.

Each doctor told me separately how difficult of a surgery it was and the reason it took so long. Each team of doctors seemed optimistic that Jimmy will have a good outcome after he heals.

After surgery, I was finally able to see him...he was sent to the ICU. I was so relieved just to lay eyes on him and see that he was okay. He was very groggy and in an incredible amount of pain. It is so hard to see him that way since he is always so stoic when it comes to pain. He is now hooked up to several monitors, has four IVs and is hooked up to oxygen. Here are a couple of other pics I took...the second one is a picture of his 3 drains. A little gross I know but they are very necessary.






11.11.14
I went home really late last night and came very early to the hospital...only getting about 4 hours sleep but I wanted to be at the hospital when the doctors arrived to check in on him. Even though I spoke to them yesterday, now that I've been able to process everything, I have some questions and need some reassurances.

The doctors have collectively said that his incisions look good and he has had a consistently good pulse in his legs and feet. They have put him on complete bed rest for 48 hours to give the muscle they transferred time to start healing. As for eating, Jimmy was only allowed ice chips last night and this morning but he has been given the okay for clear liquids now. The big problem today has been pain. He is in horrific, horrific pain. All day long they have been trying to get a cocktail of medications that will work for him and give him some relief. They switched things around a couple of time and in doing this, the pain got ahead of him and it has taken a while to get it under control. He has also been running a slight fever most of the day as well. Finally though, it seems like they have found the magic potion. He is resting and even getting some sleep. I'm very happy to see him sleeping.

As for me, I am extremely exhausted and I need to go home and spend time with Logan. Thankfully, friends let Logan spend the night last night so he was taken care of and had a little fun in the process with an unplanned sleepover. It also allowed me to be with Jimmy and for that I am grateful. But, tonight I want to hang out with my son...I miss him.

I want to acknowledge all of you who have supported us and sent us your well wishes, thoughts and prayers. They are so meaningful and I truly believe the prayers are working. So THANK YOU! xoxo

I will update again soon.

Fever...Shaking...Swelling...Pain...and now SURGERY TODAY!

11.10.14

The last few weeks have been stressful and again I have found myself not wanting to write anything. I think I've been in denial.

Anyway, the week after Jimmy got out of the hospital last month, he started having these violent shaking episodes accompanied by a high fever. They would start like a cold sweat shiver and increase to a full blown violent shaking of his entire body. They would last about 20 minutes and were very scary to watch. Jimmy would be freezing cold during these episodes. We thought he might be having some sort of seizure the first time he had one and called the doctor right away. They said to monitor him and, if they persisted and his fever was 101 or above, to let them know. Of course, we knew that this would most likely mean he would have to go back into the hospital, which is something neither of us wanted, especially Jimmy. After the first episode, he would have them about 3 or 4 times a day and this lasted almost a week. Jimmy was adamant about not going to the doctor or the hospital but I was so scared that something bad might happen if he didn't. He is very stubborn and he dug his heels in on this one (even though I didn't agree). I think it made him feel like he had control over something, since all of this has been completely out of our control.

Jimmy has also been having a lot of swelling in his leg and foot, due to the accumulation of radiation and constriction of the tumor. Here are a couple of pics of how his leg looked.


Swollen, red and irritated

This skin was dry and starting to crack

Its was so much bigger than his right foot

With the help of Logan, we wrapped his leg with antibiotic ointment and put fun Spongebob and Crime Scene band aids on his foot where the skin had already broken...haha

Thankfully, the fever, shaking episodes have gone. The swelling comes and goes depending on how much time he spends on his feet...more than he should, of course.

In the last week or two, the pain has come back with a vengeance. We found out that the tumor grew a lot even though he had 25 rounds of radiation. There is some concern about this because it means there will be more area to remove during surgery and the fact that the tumor was not all necrotic. Having active cancer cells is never a good thing to have during surgery. His pain medication has increased and I have had to drive Jimmy around a little bit, since he can't function very well on the medication.

As for Logan, he's been really busy swimming and getting ready for the season. He practices 3-4 times a week and is getting pretty good, if I do say so myself. He loves it and that's what's important. Because of that, we've decided to take a break from karate for a while and concentrate on swimming. Since I can't get him to both, he had to make a choice and he picked swimming this time around. The first time, he wanted to do karate. As long as he's enjoying it and having fun, I'm okay with what that. Right now, he needs to keep busy and enjoy life as an 11-year old boy. He's got way too much on his plate already worrying about his Dad. He is so sensitive and caring that I worry about him too. I just want him to be a kid and not feel like he needs to be strong or worry about anything.

As for me, I a stressed out mess. The last few month or so has been hard. With two near-death emergency room visits, the fever and shaking episodes, the increased pain and swelling and with surgery looming, I have been depressed, sad and anxious all at the same time. Thank goodness for anxiety medication, therapy and friends who don't mind listening to me vent. I know sometimes you might get tired of hearing it, but I am grateful for your friendship and compassion. For those of you also going through this kind of thing as a caregiver, I highly recommend taking time to evaluate your own health and do what you need to do to stay sane and healthy.

Last week, after we met with Jimmy's doctors for pre-op appointments, the sadness really set in. I think I was trying to pretend like this wasn't happening again but talking to all of the doctors made it all very real again. It was like a slap in the face of reality...here we go again. When they start talking about all of the risks of surgery, it is very scary. We know that Jimmy will have some permanent loss of function in his left leg and we are hoping that's all he will have...of course, there is always the risk of him losing his leg. The doctors seem certain that this won't happen unless he develops a severe infection that can't be controlled. All in all, it was a very long and draining day...we literally spent over 8 hours meeting with the different doctors and for Jimmy to have final scans before surgery. We were glad to get that over.

Well, TODAY IS THE DAY OF THE SURGERY. I am writing this at the hospital since I have plenty of time. We've have been at the hospital since 6am and the surgery is planned to last at the very least 6 or 7 hours. If they run into anything out of the ordinary, it will go longer. Since the tumor has grown and it is encasing veins and the main artery in his left leg, this is not going to be a fun surgery or recovery. There is quite a team in the operating room today...an orthopedic surgeon, a vascular surgeon and a plastic surgeon will all be working on him. The vascular surgeon will be putting in a filter in his right leg to prevent clotting. Since Jimmy has deep vein thrombosis in his left leg and blood clots have already broken off from the tumor before, they want the filter as an extra precaution in addition to the blood thinner medication he has been taking. He will most likely be on this medication for several months after surgery. Once the filter is in place, the orthopedic surgeon will remove the tumor. She said she will take whatever she needs to get all of it out. That means she will take any tissue needed, including muscle and veins and a portion of the artery may have to come out too. The vascular surgeon will be on hand for reconstruction of any blood vessels. Of course, they won't know exactly what they will have to do until they get in there. That's the scary part...the unknown. After the orthopedic surgeon is finished with removing the tumor, the plastic surgeon will come in and close things up. Again, he won't know how he will be able to do that, until the orthopedic surgeon is finished with her work. There are two types of flaps that he can choose from for closure...one where he can close the incision with remaining tissue or another where he has to remove tissue from another portion of Jimmy's body to close the incision. Nobody really knows how its all going to go until the surgery starts.

So, as I wait today, I am again asking for your thoughts and prayers. Jimmy was very nervous this morning (me too but I tried not to show it to him...he knew though) and I am praying for an easy surgery and a positive outcome. I pray that this is the last of cancer that we will have to see...only God can decide that but I hope He's going to give us a break.

I will update as soon as I can.