Tumor reoccurance

The radiosurgeon called Sean today and told him that the first tumor has reoccured. They have decided to do all over brain radiation and he has an appointment with Cottage hospital Monday to discuss things further. They will possibly start the radiation Tuesday, we are not sure. He will also be on an antibiotic,chemotherapy pill and anti nausea pill.
Sean is upset of course. I am going to try and take him to the movies this weekend, maybe dinner or something. Please keep him in your prayers.

Update on Sean

Sean had radiation today and while at the cottage house he mentioned to the nurse some of the symptoms he has been having as of late. He hit a 103.0 fever last night which somehow I broke and fast. It scared me when I took his temp and frantically began tactics until it dropped to 98.9. The nurses at cottage decided to send him downtown to have his blood drawn as it was a scheduled day to have it drawn to check his white blood cell count anyways. Once there we were told Sean was going to be admitted and he was very angry as no one had even did blood work yet. After doing blood work he was told that he had signs of neutrophenia and most of his blood work and how off it was was due to the chemotherapy. He was sent home and was told that if he had a fever spike to return to the hospital. Otherwise they would contact us later with any further blood test results. He was told to stay out of crowds and to report any changes in his temp or so forth. I will keep this updated.

Seans Temp

Seans temp spiked this evening to 101.5 and I have been pretty much sitting on him. At around two this morning it went down to 97.7

CAT Scan

We went to Seans CAT scan appointment today and suprisingly it took no time to get his scan completed. He had to drink a concotion two hours before and once we got there it took maybe ten minutes for the scan to be completed. He said the drink he had to take made him feel gross but other then that all went well. We will know the results soon I hope.

Seans first chemotherapy treatment

Sean went for his first treatment yesterday morning. We were to be at the hospital at 8:00 am which surprisingly we arrived on time after allot of morning traffic on the freeway. When we arrived they took us to a different part of the cancer treatment floor that we had never been to and took Sean into a room. They checked his port and inserted the necessary tube for his treatment. The nurses were very nice and offered us several things from crackers to drinks while we were there. They then took us to where they would administer the chemo and set up a television in front of us. We watched a video that gave information on the treatment and what to expect as far as side effects. While we watched the video they gave Sean Benadryl in his port and a few other medications to control any nausea he might expirence. They then started the chemotherapy in his port and he fell asleep almost immediately. It wasn't from the chemotherapy but more from how comfortable the room and chairs were. I had a hard time myself staying awake. After the first bag of medication was finished about an hour and a half had passed. They then began the second bag and Sean watched a movie while the treatment was finishing. After the second bag was finished we were able to leave. Sean decided he felt fine and wanted to drive home. He never complained of any nausea and seemed in a very good mood once we arrived home. I expected some sickness or something after a few hours but by the time we laid down for bed he still felt normal he said. This morning was the same and all day he has been in a good mood. This evening he was a little tired and thankfully has not had any vomiting or noticeable side effects. He has some blood work scheduled for next week but besides the blood work and checking his white cell count he is free from the treatment for a few weeks.

The Port a Cath

We arrived at a new hospital pretty early this morning. The reason for the difference in hospitals is there are only two that do this type of outpatient surgery around us. Also this particular surgery was booked up close to three weeks and they needed Seans in place by Monday. Once there they took him back for prep and handed us an American Pager which looked like a table coaster with lights. They told us they would let us see him before the procedure and would alert us when we could. About an hour or so later we were allowed to go back and see Sean. They had him in a gown, with an IV and he seemed a little drowsy. They took him back for surgery around 11:30 a.m. and told us that when the Pager went off for us to come back and check with the receptionist on how he was doing. I had forgot to mention that yesterday they molded a piece much like the mask they made for Seans head for his chest. It had seemed to bother him a little last night(possibly the heated needed to create it) and he was coughing more then normal so he didn't sleep as well. Once he was on the bed for surgery today he had pretty much passed out for that reason alone if nothing else. When the pager went off we were allowed to go back and see Sean. He was eating lunch and seemed in a very alert and positive mood. I asked him how the surgery went and he told me he could not even feel the port. The nurses around him were suprised he was as active as he was and that he was literally ready to go home. They explained a little more into what the port is and how it is used. The port a cath is connected to a catheter that is connected to a vein. The purpose is to deliver drugs quickly and efficiently through the entire body by way of the circulatory system. The reason this is a good ideal for chemotherapy patients is that the treatment can be toxic and should not be delivered through skin or muscle tissue as it can damage them. I have not been able to see the port as they have dressed it well to keep it clean and dry. He doesn't seem to be too affected by it being there besides a little tenderness. He is in a great mood and is acting as normal as can be. He is coming off the steroids which hopefully he will be able to sleep a little better once off them. I do hope they leave him be fore the rest of the week before Monday so he can rest. They mentioned the possibilty of hospitalization during the first chemo treatment and Sean won't hear of it. We will see what happens Monday but at the moment he is doing very well.

The Petscan

We went to Seans Petscan today, early this morning. I hardly have felt as if I have slept for a month or slowed down. The steroids are making Sean cranky and he tends to take naps in the the evening now. When we got to the doctors office we sat down in the lobby and only had a short wait before they came out to get Sean for his scan. We were not allowed to go with him and was told that it would probably take near two hours for them to finish. Sean had been instructed to take a Zantac prior to the scan and he was druggy when he came out of the procedure area. He told me that he laid on a bed for awhile and fell asleep. He was then moved to a slab type table and he said he literally didn't recall the scan. He said he did know that they scanned him from his head to around his knees. He had not been able to eat anything containing sugar the day before as they were going to give him glucose and some other type of liquid the day of the scan. Sugar to my understanding could affect the scan results. Once we returned home he acted normal as if it were any day and we are to know in theory the results or something the 4th.

The day after the bruise

Seans bruise is looking alot better and the scar on his head is healing up well. He has a scan scheduled for the 29th then on the 4th of March we have an appointment with the chemotherapy doctors.

Speaking on the topic of cancer, my older step brother passed away today from liver cancer. He was diagnosed around the end of last year and to my knowledge his disease was pretty advanced. I was told by his wife a few days ago that he was in pretty bad shape and I was planning on making the trip to go see him this coming weekend. I recieved word today that he passed away around noon and did so peacefully. He was thirty four. Rest in peace Mark.

The Day After

Sean got up this morning and had an awful bruise where the steroid IV was during his treatment yesterday.

The Radiation Mask

Here is a picture of the mask they made for Sean to wear during his radiation treatment.

The Staples

Here is a picture of Seans head after the biopsy. There are twelve in total.

The Tumor

Here is a picture of the first scan of Seans brain.

Radiation treatment.

Well we got to the hospital pretty early, around eight a.m. When we got there they told us that they were going to hook Sean up with an IV and go ahead and do a CAT scan before the treatment. They also molded and made a mask that he would be wearing for the treatment.
I figured it would take a few but it really only took about thirty minutes and he came back out into the lobby. They told us we could go get breakfest and that he needed to be back by 11:15 a.m. We went down to the cafeteria and had some breakfest(lunch to me) and walked around until about eleven. When we went back to the radiation floor we waited close to an hour before they came and got Sean. They told us he was going to get treatment and afterwards we could come in and see him. It didn't take as long as I had expected and when the nurse came out and got us I was suprised. When we went in I was expecting him to look drowsy or something but he looked normal and ready to leave. They removed his IV and the nurse instructed us on what to watch for for the next day and a half. They told us that it would be a few weeks before they checked him again and everything went well with the treatment. Sean now has an appointment with the lung doctor the first of May. the good thing is we will get a few days to rest before having to go back to the doctor which is good.

Coming Home

They let Sean come home on Monday and it was a little weird at first. He was still needing some help moving about and I was just happy he was home. He had a home health nurse come and visit him and we had to go and speak with the neurosurgeon about what was next. On the thirteenth we had an appointment with the neurosurgeon and the pathologist which informed us that Sean would have radiation treatment the next week. The lung doctor told us that they were not discussing chemotherapy at this point, not until after the radiation treatment on his head. On the fourteenth they took out Sean staples and he has had an OT and PT visit him at home so far. He has been in an excellent mood considering and I only have helped him once in the shower since and it was mainly to make sure he kept his balance. He was told not to be driving for two weeks but Sean is fairly stubborn and has not acted any differently then he was before the biopsy. He has been doing most of his normal things like mowing the yard and even managed to play some PS3 with me the other day. His coordination is back almost 100% and he is bored to tears being at home. I have heard too many times lately that hes ready to go back to work. We had a pulmonary doctor appointment Monday which was a waste of time. When we got there the doctor told us that the appointment was cancelled and he shouldv'e been contacted. They wanted to wait til after the radiation before they begin making any appointments for his lung. Since being home he has been eating like crazy and not smoking. He has been really restless and sometimes bored. He says that some things he eats or drinks tastes funny and the steroids that he is still taking makes him sleepy at weird times of the day. He tends to pass out during a movie for an hour and then he is fine which they said is normal on the medication. Tommorow he has the radiation which I am trying to prepare for. I realize he may be a little sick afterwards and just hope everything is better when it is done.

More in general

The whole time we were in the general part of the hospital we never seen but one of his doctors. They had his hopes up Sunday telling him he was going to be able to go home only to tell him he would have to wait until Monday which made me angry. One of the girls who came in to check his sugar and so on was a complete idiot. She was very rough and seemed pretty unprepared to do nothing more but check his sugar. Some of his meds were making his sugar spike which was something they were watching. Up until we got to general he wasn't allowed to have anything like pepsi due to his sodium being so low. Noone informed us if he still had any eating or drinking restriction and I had to literally hunt down the head nurse to find out what was going on. They came in on Sunday and told him if he wanted television they could keep it on and he would still be charged $5.oo a day. Up until then we were under the impression there were free channels(weather) but apparently not. He was so bored and the room was hot and believing we were going home he told her no thats okay I don't want to buy the non free channels. She said they all cost money and shut his TV off. I was pissed. We then found out that there was a Red Wings game on which we watch all the time and that he wasn't getting to go home. He was upset we couldn't watch it and I was mad because he was so restless and trapped in the room with nothing to do. I went to find the head nurse again and told them to turn his television back on as there was a game. She came in and made sure we could watch the game at least.
While in general we never saw a PT or OT and I felt the two days were very unproductive and a waste. I did urge him to use a walker and we walked up and down the hall a little trying to build some strength in his legs. By Sunday he was going to the restroom without me and was eating his meals with both hands instead of me having to cut his food and feed him. He was ready to go home and Monday morning come hell or highwater I was making sure he could.

After the surgery

After the surgery Sean basically got to learn how to make his arm work for him again. They shaved a spot in his head and there were about 12 staples in a line. They said that the tumor had metastized from a spot in his lung and they informed us he probably has lung cancer. After several days of me helping him to and from the rest room and trying to make him as comfortable as possible I was exhausted. I had a few run ins with the staff in ICU including this big waste of space that had the bedside manner of a nazi. While Sean was using the commode and you would just have to of seen the set up this room. There was a curtain seperating patients and the one nurse had fixed the curtain where Sean could use the bathroom without having an audience. This big jerk came in as I was helping Sean stand from the toliet jerking the curtain open being real loud. He yelped "Why was this curtain like this!" and I turned around real fast and shouted"Probably because he is in the damn restroom!" What made me mad was Sean jumped when the guy jerked the curtain which if he would of fell backwards he would have been hurt and I would have lost it. The same guy fussed at Seans mother and was generally rude towards us. Another person who got under my skin was Seans dermatologist. She was just ruthless and seemed pretty unmoved that when she was jerking the patches off his skin that she was hurting him. She checked him head to toe for skin cancer which is pretty common. Pulling his gown open exposing him with the curtain that covered the hall open and people being able to see in his room. She jerked a few patches off him and of course Sean has hair on his chest. Everytime she did he yelped. The one she pulled he made a very loud sound and I just blurted out" I think that might just freaking hurt". She turned around and looked at me and didn't say anything but I did notice she was being a little easier afterwards. One other person that aggravated us was a simple intern. After being up for two days I was exhausted and was dozing in a chair in the room. she came over and told me I was not allowed to sleep bedside and was really quite rude about it. I had no intention on leaving him if I did not have to and I was pissed that she had bothered me. I ended up napping in the car in the garage at one point. We were able to take a shower which seemed to make him feel alot better and they also removed the foley which made him happy. After a few more CAT scans they decided to move him to his own room in the general part of the hospital. The two days spent in the general part was a nightmare. The staff was rude and uninformed about what was going on with Sean. I had no ideal who his nurse was half the time and they really treated him poor compared. They wanted to charge him five dollars a day for television and a phone which is something I have never seen in my life. Considering every TV in every lobby or waiting room was on I couldn't understand charging patients for TV when visitors were watching for free.

The next few days

In the course of the next few days Sean went through several tests and way to many needles. As for resting his mother and I spent near four days at the hospital only coming home to rest after the biopsy was done on a Friday. He had doctors checking for skin blemishes, other tumors and so many other things that I don't believe he rested more then five hours. They revealed to us that they had also found a mass in his lung but decided to not go into detail until after they performed a scheduled biopsy for Friday. I was petrified after hearing all the risks associated with the biopsy. They decided to do a pin biopsy where they only removed a small amount of the brain tissue they needed and assured us he would be fine afterwards. Sean had been fairly emotional during all of this which is something really uncommon for him. I was a little out of sorts by the level of his emotion but understood as I would be the same in a similar situation. They let us go with him to the pre-op before the surgery. I myself had cried so much since everything began earlier on that Tuesday that I was suprised I could cry anymore. We sat with him as they prepared him for surgery and I made sure to stick a prayer cloth inside his sock before they took him away. I told him that everything would be okay and that I would be waiting for him when he was done. I told him I loved him and could tell he was close to tears again. I hugged him best I could and blew him a kiss then went around to the other side of the curtain. I made it to the hallway before I began crying.

The ER and MRI

When I got to the ER they had Sean already medicated with several needles hanging from his arms. We(his mother and I) sat with him for several hours waiting for them to move him to his own room. After most of the night they finally moved him to ICU. He was knocked out for the most part and they wanted to attempt an MRI that evening which the way the hospital works ICU only has access to the MRI from seven at night til seven in the morning. They had already did another CAT scan and were checking his sugar,vitals and many other things every hour constantly. They told us they were taking him downstairs for the MRI and we were to wait in the lobby. About ten minutes later a nurse came down the hall and asked me to go to the basement(where they do MRI's) telling me that Sean was "freaking out". I went down to the basement and looked for the right room where they had Sean. He was vomiting and sweating which scared me. There were several nurses around him which would have made anyone nervous. The fact he hadn't had anything to eat surely didn't help with the vomiting. I grabbed a cold wash cloth and started wiping him down trying to cool him off and calm him down. The nurse mentioned something about knocking him out in order to do the MRI and he was shaking his head "no" to the drugs. I told her he didn't want to be asleep and they decided to wait until the following night to try the MRI again. They took him back to his room and let him rest, I sat next to him while he did.

How this started

I met Sean a few years back and since we have been pretty inseperable. He saved my life in his own way and ever since then I had vowed to do my best to repay him anyway that I could. A few weeks back I had noticed Sean kinda walking funny,almost a limping gesture. I mentioned that maybe we should schedule a doctors appointment and he agreed with me to do so. The day of his doctors appointment he had to work. While at work he fell and was unable to get back up. Sean is only thirty two and has never been sick a day in his life. He was sent by his work to the doctor and they decided to do a Cat scan. I recieved a call from him from the hospital that evening telling me about falling at work. He told me I needed to come to the hospital and I asked him why? He asked me if I really wanted to know over the phone and I told him yes. he told me they had found a tumor in his brain and he had been admitted to the hospital. I literally just broke down.