Not much to report

Heather is doing ok after her injection on wednesday. She has the same aches and bone pain she has had everyother time she gets a shot. She has pain pills but she only takes them at night cause they make her pretty light headed and tired. She sounded in good spirits over the phone when I called her today and seems to be tolerating the pain. But with Heather you never really know. She is such a trooper and never complains. Every single health professional we have seen says the same thing, "Heather you always have a smile on your face no matter what." They all look forward to her visits and check-ups because they love her so much and she is so happy despite her situation. I know they all have a special bond with Heather and an interest in her because she is such a miracle. It is easy to get attached to those kind of patients. I know from experience. I recently lost one of my favorite patients, just on Monday.

Her funeral was today but I had to work and was unable to attend. I had taken care of her for the last 8 months in the hospital. We even threw her a huge sweet 16 party a couple of months ago. This patient was the sweetest person I have ever met and like Heather never complained and always smiled. She was much worse off than Heather. She had an unknown connective tissue disorder that eventually took away her ability to breath on her own, she had a tracheostomy and eventually was on a respirator which then ment she could not talk anymore. She could also not walk. But her mind was intact. She was 16 and taking home school courses and doing calculus and college level stuff. SHe spoke mutliple languages beautifully and she was able to write to communicate. Her family was also so sweet. They showed such sincere grattitude for everything and the love of her parents especially her mother who never left her bedside for one minute for the last 8 months was inspirational. I saw a lot of my mother in her. I loved this sweet young women and I was able to tell her how much I loved her and what an example and inspiriation she was to me a few days before she passed. I arrived at work monday morning about 10 minutes after she passed. Her family stayed in the room for several hours and said their goodbyes. Later her nurse needed help cleaning her up and preparing the body. I gladly volunteered to do this. The nurse was surprised since now that i am a practitioner I don't do direct patient care. For this girl I would do anything. I would want somebody who loved me to be the one to clean me up, bag me up and take me to the morgue. I love doing that part. It is hard but it is so peaceful and the spirit in the room is always so strong. I wanted to do right by her and make sure she was presentable and reverently placed in her shroud and body bag. It is so final with that last zip of the bag and that is always the hardest part. But I am glad I got to be the last person with her at the hospital. It are those bonds you have with patients that make it worth while for those of us in the medical field and I know that Heather has touched many of those who care for her in this special way.

Consultation

On thursday (yesterday)Heather had her MRI and then in the afternoon I left work and went across the street to meet her on my lunch break. I went in with her to meet the doctor to discuss the gamma knife procedure. The doc came in and said lets go look at the scans. But Heather did not really want to look at him. I think that took the doc by surprise that a patient did not really want to see what was happening in her own brain. I explained that she was so sick in the hospital that she did not see any of them and she does not really want to see how bad her brain looks. So he gave us the news that on this MRI there are about 17 lesions he counted. Lots more than i was expecting. Luckily they are all 2 cubic cm or smaller. He explained how the gamma procedure works and the requirements to do it. You can not have too many lesions which he said 17 was a lot but not too many to do. He also said that it would only take half a day and he could treat all the lesions and it would take care of them. He would not have to cut into her head or brain at all. They put a frame on her head and attach something that looks like a spaghetti collander and the lasers shoot throught hundreds of holes but all the lasers end up hitting the same single point. It is all programmed by a computer and after it treats the first one, the computer moves the collander thing to the next lesion and fires the lasers then moves to the next etc etc. He told Heather that it is pretty aggressive but in young people who are healthy other than her cancer that is the time to be aggressive. He also said he wishes there was something like that they could do for all the disease in her body since her cancer has not been very responsive to her chemo. We just have to hope and pray we can get her cancer under control in her body so that it will not spread again to her brain after we get rid of all this.

The gamma is great cause it does not damage any of your brain tissue, it does not involve opening her up, and it is not radiation which is so bad for you. Heather has another MRI in 4 weeks as the doctor thinks the radiation is still taking effect and could improve some of the lesions. After that MRI we will formulate the plan. He already wrote the perscription for the MRI and his secretary is working on getting the authorization for the MRI and for the gamma. I hope the insurance will approve it.

2nd chemo treatment

Sorry for the absence. I worked tuesday through friday and then on saturday we celebrated Hannah's birthday and then headed to a stake conference night session, and on Sunday I rested and got ready to start the week all over again. There was not really anything to report so I did not feel the need to write much. Heather was tired from her chemo last tuesday, she did not have the strength to get herself up and around like she had before. She was a bit discouraged that she was loosing a lot of her muscle and motor function, but we just kept telling her it was from being so week. She had her second chemo treatment yesterday. I ran across the street from work and met she and my dad and Heidi there and talked with them for a minute until my pager pulled me back away. She received her chemo and also her bone strengthener. I believe she is getting her injection today which helps her to make white blood cells. This is the worst part of the chemo for her and starting friday she will be in a lot of pain from it. She will not get any treatments next week. On Thursday she has her appointment with her neuro surgeon to see how her wound she had cleaned out and sewn up is doing. Maybe they will take out the stitches since it will havebeen 2 weeks since her procedure. We are also meeting with neuro surgeon from my work Dr. loudon who assisted in Heather's emergency craniotomy. She will have an MRI on thursday morning to see how her lesions in her brain responded to the chemo and to evaluate her for a gamma knife procedure.

Several weeks ago this surgeon asked me how Heather was doing when i told him she had just come home and was using a walker he said you know we can do so much more since she is this strong and is functional we can do gamma. Ok i was not sure what he said and gamma was one of the options of what he said but i had no idea what he meant. Well last week i was in a different unit doing physician rounds and I saw an article on a bulletin board that said Dr. Loudon leading california gamma knife specialist. What, did they say gamma. I read the article and he uses a gamma knife which is basically a laser to cut out tumors and lesions. You don't even have to open up the skull. I knew then that he infact had said we could do gamma on your sister. Well i was going to try and find him and what do you know the next day he finds me and says we really need to talk about your sister and gamma and we needt to get started. He told me to come see him that day and we would go over her scans together. So i called and the secretary took my message and i never heard back. That was Thursday last week. Well Monday i see him again and he asks why i never came over. I told him how i had called and he said just to call a different receptionist that she is expecting me and to make an appt for Heather to come see him. I did and we had an appt for today. But Heather has not had a post operative or radiation MRI only a CT and he can't see all the lesions on that so he ordered an emergency MRI on tuseday and she is already getting it on thursday. It is so nice to know somebody with some pull around the hospital. His secretary also noticed that Heather was seeing the other neuro surgeon in the same office on Thursday to see her stitches and they changed her appointment to Thursday at 12:15. So what a long thursday we will have. A 8:15 MRI then a 12:15 consult for gamma knife and a 1:00 appointment.

I am really excited to see what the options are for Heather. I always thought Dr. louden was strictly peds but he did a fellowship in adult brain tumors and sees adult patients as well. He makes radiation and gamma plans for them. I think he will definitely be an asset to us as his specialty is brain tumors and treating them. I have had the most wonderful comfort since I read that article and he is seeking me out to help. What a blessing. I love the tender mercies of the lord, seeing that article, the doc coming up to me, and the fact that they were able to arrange everything so quickly to get her in. I will write on Thursday night all about our day. But for now i have to go to the dentist.

Chemo again!

Heather went to the neuro surgeons today and he said her incision looked great and it was ok to start chemo. She then went to her oncologist and the CT results showed that two of the tumors in her right lung are the same size. They are her small ones. But she has one larger one that has always been the one to get bigger. It did get a little bigger. I expected that since she has not had chemo for a while now due to her hospitalization. As far as her liver, they could not compare if there are any changes from her PET scan 6 weeks ago as they are two different studies. But it did show increase in the tumors in the liver since her CT in october. We don't know about her bones since they just imaged her lungs and abdomen and pelvis. Good news is it still has not spread to her other organs around her liver. Her kindeys, pancreas, gallbladder, spleen and her bladder are all ok. YEAH!! She started her chemo today. She will get chemo next week again (but i think it might be a different type than today). THen she will get an injection that makes her bones really hurt. It is the worst part of the whole thing, it really knocks her down. The injection causes her bones to make more white blood cells since the chemo kills them all. She has extreme bone pain with it. So two weeks in a row of chemo with one week off then repeat it all again. Unfortunately that week she has off she will be recovering from that horrible shot. Not much of a break. Hopefully she will not get too sick and nauseated with this chemo. We will just have to wait and se since she has not had this kind before.

Infectious Disease

Today Heather had her CT scan and then in the afternoon went to an infectious disease specialist. The neuro surgeon wanted her to be seen to make sure that the open incision was not infected and spreading to her skull. If she were to get a bone infection it would really slow us down and be dangerous. The doc was nice and quick. He reviewed the cultures they sent from the wound and found it to just be staph areus which is a bacteria found on everyone's skin. The surgeon had figured that was what it would be and had already started her on antibiotics to kill it. Luckily he guessed right that Heather just had regular staph aureus. There is a kind that is resistant to most antibiotics that has become more and more prevalent due to the over use of antibiotics and they had to make sure it was not that kind. Fortunately it was not, and they even tested the specimen from Heather's wound and found it to be sensitive to the antibiotics she was already on. The incision looked great, healing well and without any drainage. He felt there was no problem with starting chemo, so next stop neuro surgeon tomorrow to hopefully get cleared. IF cleared then chemo and appointment with the oncologist.

Hole in head

Scott commented on my blog that the incision was actually pretty big and had 8 staples. Heather had it cleaned out and repaired on Thursday. When they got to the emergency room scott filled out all the paperwork for Heather and under the line that asks what is your complaint/why are you there he wrote "hole in head." Heather did great, they had trouble sedating her but she was drowsy enough that they ended up doing local anasthesia to the area and cleaning and sewing it up. She did not remember anything. I came from work just in time to meet Scott and my dad as they were going up to her room to see her. She was discharged at 1:00 that afternoon. They are tapering off her steroids and put her on some antibiotics. She was able to see her favorite ICU nurse Jacob while she was there. Scott went and told him Heather would like to see him. The last time he saw Heather she was not moving her arms very well, could not feed herself or get out of bed, and was not as alert as she is now. Heather will the neurosurgeon tuesday at 1200 and then see her oncologist. If the neurosurgeon says it is ok to start chemo she will start that day.

Back to the O.R.

Today at our neuro surgeon appointment we met with the NP (after and hour of waiting) and she could not believe how great heather looked, especially her incision site that still had stitches in. She removed the stitches, the site looks great. Then i told the N.P. that the home health nurse had removed the steri strips off the other incision where the staples previously were and she had told Heather that it was open and did not look good. I asked her to check, i had not seen it either and boy was it wide open. There were only two staples there, it was a small incision where the drain had been in her head. But the staples were removed before her radiation, and the area opened up due to the damage radiation causes. Today it was bigger than the initial incision was and it was very deep. It had green drainage coming from it. But it did not smell (this is key in the medical field). The doc thinks it is not infected since heather has not had fevers or any pain, and he thinks that the radiation killed all the bacteria if there ever was any.

So where does that leave us???? Well usually you don't want to sew that up because it traps the infection in there. But since radiation was done in that area, Heather's won't heal without some help, it must be stitched up. He contemplated doing it in the office but he decided that it needs wound debreedment. THis is when they go in and irrigate it with saline and scrap off a lot of tissue and try to clean it out. It can get pretty painful. So the next step was to do it tonight as an out patient procedure. Then he decided to do it tomorrow morning. Well of course last minute charley the only time open in the operating room is before scheduled cases. So Heather will have this procedure done in the operating room at st. joes tomorrow morning at 0500. She has to be there at 0400 since it was too late today for them to process any of the paper work and get her signed up. When the doc gets in there and sees what is going on he will decide if Heather needs to stay in the hospital and get IV antibiotics. So we still don't really know the full plan. He said he may even want to keep her overnight in the hospital to get more IV antibiotics.

As far as the re imaging of her brain. He said that they typically do it 3 months post of, sooner if problems appear. But Heather is doing so well. She meets with her radiologist in 2 weeks and that doctor will also recommend when Heather needs to have her brain checked again. If it is sooner than 3 months then they will follow that plan. The doc has no problem with Heather starting chemo except for her head wound. If it is not closing up well, then heather should not start chemo as it will supress her immune system and she needs that to heal the wound. So when she goes for her re check next week of the wound, we will know if she can start chemo or not. Oh how i hate uncertainty and not having a plan. Dr. Ho (the neuro surgeon) could not believe it was Heather today. She looks so much better than when he saw her the day she was discharged from the hospital. He never saw her at the nursing home. He tested Heathers strength and movement and they are pretty equal in her arms. Still the problem with her left leg. But he was so amazed. He told her she is a miracle and that he really did not think she would survive the surgery and there were many days post op that he thought she would pass. Thank you to everyone, people of all faiths and religions, for your prayers. So many of my co-workers who have not even met Heather have been praying for her. Friends from my college days and high school have fasted for her. This is a true testimony to fasting and prayer, and most importantly faith.

Meeting with the Oncologist

Well you would probably think that the title of this post means it will be an update, a wealth of knowlege. Not really. The oncologist did not have much to say. He kept defering a lot of questions to the neuro surgeon who we will meet with tomorrow. So more to come on tomorrow's post. Plan is for Heather to get her labs drawn this week and get a CT scan at the end of this week or beginning of next week. The doc said the insurance would not pay for a PET scan since that was done 6 weeks ago. She will be having a chest and abdominal CT. The neuro surgeon will be the one in charge of following up Heather's brain images which will be done with MRI as they allow us to see more than a CT. Plus an MRi is not radiation so the less radiation heather is exposed to the better. We have an appointment for next tuesday afternoon to meet with the doc if the labs look good and the neuro surgeon has cleared Heather to restart her chemo we will start it next week.

Poor Heather had a rough night last night worrying that the doc would tell her today that there was nothing they could do for her. I knew that would not happen as this man is not a man of many words. He still has never told Heather what her life expectancy or prognosis is. He pretty much dances around it. He told Scott but never has told Heahter. THanks for leaving that job to us! I assume we really can't pin point anything until we have re imaging of her brain and know how her lesions are doing after radiation as well as seeing if her tumors in her lungs and liver have grown in the last 4-5 weeks she has been off chemo. Keep you all posted.

Thanks to this weeks visitors. Heather also has a wonderful home nurse who comes a couple times a week and her home Physical therapist will now be coming 3 times a week. She is wonderful and so sweet. SHe is so kind and loves the children too. She will definitely whip Heather into shape.

Done with Radiation

Heather completed her radiation yesterday. She has not had any more vomiting since Wednesday night. She is very tired. She only got out of bed today to come and eat dinner. But once she got up, she felt ok and even went to sit onthe couch after dinner. She said she was really dizzy yesterday but feeling a bit better today. Scott took the kids to a baptism for his side of the family and I made dinner and took it over to heather my mom and dad. We spent a couple hours just sitting around them dinner table talking. Her home health nurse has been coming by and the physical therapist is to come by again this week. THey are both really nice and dedicated at getting Heather what she needs. We have the challenge of getting Heather to her appointments this week without the help of the ambulance company. It will be a challenge to master those stairs leading up to her condo, but once she is on the ground we can get in her in wheelchair or she can use the walker and get in the car. I am going to start lifting my weights in preparation for getting her down the stairs. I am thinking about just throwing her over my shoulders and running down.

Almost done with radiation

Today was Heather's fourth radiation treatment. She is very tired. She threw up three times last night. It is concerning since that was what she was doing prior to her hospitalization and it was caused by the pressure in her head. Her brain swelled from radiation and she ended up in the operating room having emergency surgery. The tumors are gone that were contributing to the swelling and part of her bone is shaved down to allow for the swelling during this round of radiation. But we are expecting her brain to swell despite the steroids. We just have to hope that her head and brain can accomodate all this swelling. Good thing is that she is stil alert and oriented. We will keep our eye on her and hope there is no more vomitting. She has her final treatment tomorrow and then we meet with the oncologist on tuesday. I am wondering what he will say to us and what her chemo regimen will be. Everyone at the radiation place is so surprised by how good Heather looks and how well she is doing.

Radiation Take 2

I met Heather, my dad and Scott today at St. Josph's for Heather's radiation. This is treatment 5 out of 10. She was able to get 5 treatments in before her brain started swelling and she had the emergency surgery. My dad rode with her in the ambulance and Scott came on his lunch and i ran across the street from work. All went well with the ambulance picking Heather up at the house and getting her there. She met with the doctor and she checked out Heather's surgical site. It has healed quite nicely and they were able to go ahead with the radiation treatment. It was only about 5-10 minutes when she was done and they put her back in the ambulance. She was really up beat and cheerful and everyone at the radiation place could not believe she was the same person they saw before. She had a physical therapist who came to the house and assessed her today and will come back on thursday. The women of the ward and fammily are doing a wonderful job with her physical therapy on the other days. The PT wants her to take it easy this week as she will be very tired from her radiation.

On a random and probably dumb note, I just finished watching the bachelor after show. I have not watched the bachelor in many years. But i have seen the last couple episodes including tonights finale. After the finale they had the after rose special and I could not believe it. All i can say is this thing has to be staged. They must pay these people. There is no way that everything could have turned out that way. The only other explanation is that the two people are lying and they have been talking to each other this whole time (the bachelor and the girl he originally did not pick). What a coincidence that the girl the bachelor did not pick just happened to say she has been dreaming he would call her or show up at her door asking her for another chance. And then all of a sudden that is what he decides to do, dump the girl he picked and pick her now instead. Oh please they have either been having a relationship this whole time, or this is scripted. This is why i dont watch it, and now i am kicking myself for watching last week and this week. Why did i even bother. Now it is 11:30 at night and i can't calm down to go to sleep cause i am so mad at this show and how it turned out. Here comes another sleepless night, how lame is it that its over this?????

Adjusting to life at home

Heather is doing well. There have been some adjustments and hurdles to climb. She had a visit by her home health nurse and they removed the staples from her head. she still has the stitches in i think and they will be removed at the neuro surgeons office soon. I don't have much to update. She has wonderful friends and family that come and visit and bring food and play with the kids. She had a friend from college fly in this weekend just for saturday to see her. I am so amazed at everyone's love and concern and generosity. Our cousins drove all the way just to bring Heather a home made pie. Which i heard was delicious. They are working on getting a better schedule done for having women come in and help Heather with her physical therapy. She spend most of her day on the couch so that she can be out with the kids or visiting with guests. Tomorrow will be her first day of radiation,she will get treatment monday through friday. The ambulance company is to come and transport her to St. Joes. I will let everyone know how that is going. I am working almost every day since one of my co-workers is on medical leave and the other is on vacation. that leaves me to hold down the fort almost every day. I can't wait for the next 3 weeks to be over cause I won't be able to spend very much time with Heather. So I apologize if my updates are not very consitent but I will try.

On a personal note, (what i would blog about if I was not doing the Heather updates) my hubby got an A- on his organic chemisty test. This is a huge deal because he has struggled with chem for the last 2 years. He also got an A on his community Health test he took online this weekend. I am so proud of Tristan for doing so well in school. I know it has been hard for him to concentrate and study hard with all this going on with Heather. He has been by my side for so many long hours and helping out my family. I am so proud of him and hope this semester continues to go this way. We will start applying for grad schools this summer for his physician assistant program and know how important the good grades will be!