Thursday, June 27, 2013

Still waiting

We have played the waiting game with doctors before but for the most part I have found that when things are serious they get done quickly. It's almost scary when the doctors want to do things quickly. When Jeff was in the hospital one of his nurses once said "the only time you need to worry is if you see nurses running." This is also true with doctors. If you see doctors rushing to get things done, it's time to worry. I'm not sure that offers much comfort for Jeff while he sits here waiting for some answers. I got a phone call the other day and because the results to all of Jeff's tests would not be in, the doctors are now going to review Jeff's case on the 3rd of July instead of the 26th of June like we hoped. Jeff did have an appointment with his surgeon who basically could answer none of our questions. He informed us that the tumour, where it sits now, is no longer operable and another surgery is not in the future for Jeff. His official answer to most of our other questions was, "that is something you will have to talk with the oncologist about." This left Jeff frustrated since we have been having a hard time getting an appointment with them. The resident working with the surgeon did however take a look at the MRI images of Jeff's back. She only did a brief overview but mentioned that she could not see any significant lesions. Meaning it doesn't look like the cancer has spread to his back or spine. We still have to wait for the official report and the oncologist but hopefully she was correct in her findings and the good news continues.
 Jeff has decided that if the doctors give him treatment options, he would like to be treated in Edmonton. This may mean more waiting for his files to be transferred and the doctors in Edmonton to get their ducks in a row. Although I do think that might be the easiest option for us. 
Jeff continues to be tired (extremely tired) and is dealing with a broken toe along with a weak right leg. He is super anxious to get something started and is ready to start fighting. 

Friday, June 21, 2013


By Tuesday morning I was getting a little worried because Jeff only had an MRI booked for wednesday but no other tests booked and we hadn't received any phone calls scheduling them. Last week the nurse from the Tom Baker sent all the requisitions and we expected the testing to start right away on Monday. I phoned the Tom Baker and things got rolling. By 11:45 we were in to see Jeff's family doctor and then over to the hospital for blood work, barium for the CT, and then an ultrasound. Next was the CT which he had around 3 and then we were down the hall to emergency after that. 
Earlier in the day Jeff mentioned his right leg was a little limp. I panicked and e-mailed Jeff's surgeon asking if it was something of concern. The surgeons immediate response of "come to foothills ER to be assessed" sent me into an even bigger panic and I sent Jeff to the ER. The doctor in the ER watched him walk and did some neurological testing which ruled out anything major such as a bleed or stroke. He decided his limp leg was due to the surgery and didn't give much more information than that. When Jeff's surgeon told us the risks before his last surgery, one of the big ones was that he may be paralyzed on his right side.  So a limp right leg is conducive with the lesions from the surgery. I am still a little concerned about his leg and keep watching him to see if it is getting any worse. So far it seems to be ok. 
On Wednesday morning we were back in emergency for a scheduled lumbar puncture and later that afternoon he had his MRI. We were really happy to hear the mobile MRI was in the area and we didn't have to travel to Edmonton for that. Now testing is done and we wait. The doctors at the Tom Baker are meeting again on the 26th to discuss Jeff's case. We hope to hear from the doctors soon after. 

Tuesday, June 11, 2013

Phone calls

We were anxiousley waiting all weekend in for a phone call with news of what was going to happen next for Jeff. By tuesday, jeff couldnt wait any longer. He had a contact number for the brain tumor clinical nurse and so he gave her a call and left a message. On Wednesday morning she called him back and explained that the doctors planned to discuss Jeff's case at rounds that afternoon and decide on an appointment date. It wasn't a lot of information and Jeff had actually taken the waiting very well until now but after this phone call he kind of broke down. He needed more information and he needed it right away. He has been scared to think about what this whole cancer situation might mean for him and when he was told he had to wait even longer it was too much. I called the nurse back and told her we needed a doctor to phone us and explain to us what germinoma is, what treatment options could be, and what all this means for his future. She said she would have someone call us after rounds to explain a little more about his case and what they are doing or thinking in terms of treatment. Later that day we did get a phone call. It was the neuro oncology nurse and she explained everything to us. Germinoma is a cancer that doesn't have one set treatment plan like some of the other brain cancers such as a glioblastoma which is treated the same way every time. Every treatment plan is different with germinoma and that is why they need to look at Jeff's whole situation ( the bigger picture) to decide on a treatment plan from him. Usually germinoma is highly sensitive to radiation and chemotherapy but depending on the type and where it is, they have a lot of different ways they could deal with it. Right now they need to do further testing and most of that can be done in Cold Lake or Edmonton. It should take a few weeks for the testing to be done and results from those tests to get back to Calgary. After all the information is in, the doctors will discuss his case again in rounds and they will decide what needs to be done next. 

We wanted to let everyone know how extremely overwhelmed we are to see the love and support we have. I can't put into words how much gratitude I have for all the help and love we have felt. We know prayers are answered and we can feel your prayers working in our lives!

Saturday, June 8, 2013

Round 3

Jeff has been having routine MRIs and in October 2012 the drs noticed his tumor wasn't getting bigger but had increased in density. With these result they decided to keep a closer eye on it and check him again in a few months. His next MRI was in May 2013 just a few weeks after our precious baby boy #2 was born. I had been noticing things weren't as sharp for Jeff (its really hard to explain what its like for him. He would tell me things a few times and forget things we had a conversation about earlier but remember everything the minute i would mention something. I kind of think of it as him having a fog in his brain and things just aren't so clear.) and he had been feeling extra tired, barely able to make it through the day with out a good night sleep and a few hour nap in the day. Also his vision was becoming worse and I noticed he was starting to turn his head when he would look at things. With these symptoms and the new results of the MRI, we were called in to see Jeff's neuro-ophthalmologist and neuro surgeon. The news wasn't good. Jeff's tumor had grown drastically in the 6 months between MRIs and his doctors were worried. Jeff's surgeon wanted to do another surgery! Our hearts sank as we sat in that office for a 3rd time with horrible news. This surgery was just a biopsy and less intrusive than the first two. If everything went well, the dr told us Jeff could be in and out of the hospital that same day. Surgery day was last Tuesday and I am happy to report everything did go well. A lot of prayers were said and Jeff was in and out of the hospital that same day. He was actually kept awake for this surgery and talked with the doctors the whole time. There would be times when they would ask him to move his hand and had him talking to make sure all was well. When he was out of surgery, I couldn't even believe they had just messed around in his brain! He got 2 stitches on the side of his head and 4 little cuts from where we (yes WE, the dr let me help!) screwed on the box to keep his head in place. This was nothing compared to his last 2 surgeries. He has been extra extra sleepy and a little cloudy but I am glad that part is over. We had planned on results to take a few weeks and had a follow up appointment with jeffs surgeon booked for the 26th of June. That is why the phone call Jeff got was unexpected and scary. On Thursday morning Jeff got a call from the Tom Baker Cancer Centre. The biopsy had shown his tumor is now cancerous. A type of brain cancer called germinoma. For me, it still hasn't sunk in and Jeff is handling as best he can. He is terrified and unsure but for the most part he stays strong for me and the boys. He tries so hard to help out and make my life easier. We are still unsure where we go from here. Jeff had an appointment at the Tom baker for Tuesday morning but soon after got a phone call telling him the drs want more time to look at his situation and make a plan. They said maybe Thursday but we have to wait for a phone call next week to see when we can meet with them. We have so many questions and are anxiously waiting.