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.