Day 20

Yesterday was Day 20 of this whole mess, and it ended up being Heather's last day in the rehab/rest home. She had a great day with visitors and women from our family and church learning how to do her physical therapy. On monday Heather had decided she wanted out of that place. They told her they would work on getting everything ready for her to get out but it would take a couple days and it all depending on her being able to go potty without the catheter. We conquered that on tuesday and they were getting her ready to go. Friday for sure would be her last day there according to her insurance as they would only pay 7 days. Well, I was thinking maybe she would go home on thursday (today) as she asked to get out early. Well, Wednesday night came and they put a roomate in heather's room and she decided that was time to go home. She ended up coming home in Scott's car and several men carried her upstairs in her wheelchair to their condo. It was late as the place had to get her meds together and discharge instructions. I do this on a regular basis and i know how hard and time consuming it is to get it all done, especially on short notice. Heather had a great day yesterday even before she got home. Hannah spent all afternoon with her. When my dad brought Hannah there she told my dad to set up the movie and then to take a walk. So he did, he walked for two hours while Hannah and Heather snuggled in her bed and watched Kit. Hannah then stayed all night cause she wanted to ride home with her mommy. She did not go to bed til around midnight because she was so excited for her mom to come home and to see the newly decorated house.

Today I went to work as Heather's official home health nurse. Day 1 of post hospital life. When I arrived this morning my mom (who spent the night at her house) had her up in the wheelchair. I got there and wheeled Heather to the table and she fed herself breakfast and I gave her all her meds. We were successful in getting to the bathroom today which was our big worry. We used a portable toilet, but she was able to get up from the couch, use her walker, and get into her room to use that bathroom. We were pretty excited. She sat up until about 1:00 when she started to feel tired. she layed down pretty much the rest of the day. i was starting to worry as her cheeks were flushed in the afternoon and she seemed really tired. But she has not been sleeping so hopefully it is just all of that catching up with her. She watched lots of tv shows that were recorded for her while in the hospital. She will start radiation on monday next week. We are so grateful to all the wonderful people that will be coming over to sit with Heather and to help her with her therapy. Women in the ward have been having the kids over to play which really helped today as it gave Heather a couple of hours of silence to rest. Even a mother from the school came over today and brought some fun things for Hannah and Aaron to do to keep them out of Heather's hair and to occupy them. It was really sweet to see even people from outside our family and the church helping out. I am so glad Heather is home and I know she is. But nothing is better than watching those two little kids take care of their mom. Aaron was trying to feed Heather some water while she was lying down. He basically gave Heather a shower. Hannah likes to push Heather around in the wheel chair and make sure she is ok. She told me today that she is going to take good care of her mom cause she is going to be a nurse when she gets bigger.

A break from the Saga

Here are some pictures of tristan and I, and Heather and Scott and the kids at Christmas time. We went to an outdoor shopping area down in South Corona where they have free Cinderella carriage rides at Christmas time. We had so much fun with them and then we went out to dinner after. These pictures are long over due but i finally found them on my computer. My favorite is down toward the bottom with Tristan and the two kids. They love their Uncle Tristan and let me tell you the feeling is completely mutual. I love watching them together. When ever I come over to their house by myself, Aaron wants to know where Uncle Tristan is. I guess Aunt Cherise is not enough :( You can click on the images to make them larger. They are a bit dark and hard to see small.

Day 19

The above is a picture from Sunday, Heather's first real day of therapy. The physical therapist calls it the giant and the midget. Who is the giant?


I worked all day but was able to go visit heather after work and get the update from my family then. Apparently Heather used a walker today. She still can't really use her left leg and pick it up but hopefully it will get stronger. She is getting more fine motor control with her hands! We had a good visit and more of our extended family came to visit which really cheers up heather. It helps to pass the time and is much better entertainment than the t.v. She really enjoys her visitors. Everyone left around 8:00. I cleaned up Heather and got her all ready for bed. We watched movies and hung out unitl 10:00. I wanted to stay longer but heather was really worried that I would fall asleep on the way homne since i had been up since 5:00. Heather and I have always been very close, we were up at BYU together, which made us really rely on each other. Since we moved in July by her, i have seen her pretty much everyday. We run all our errands together. But this time with her has been my favorite. I have enjoyed watching her interact with so many people and spending our alone time together at the hospital.

Last night Hannah called Heather before bedtime and was very upset. She was crying and talking a mile a minute (complaining about her little brother). Heather reassured her that they would set some rules about the computer when she got home. Then Hannah started to cry again saying that she wanted to come and see her mother really badly all day and never got to. She went on and on about not seeing heather. This of course made heather cry and then i started crying cause i could hear their entire conversation and they were both crying. We promised Hannah she would get to come today after school. She stopped crying and made Heather choose a movie she could bring and watch with her mom. The choices:Wizzard of Oz or Kit Kittridge. Heather picked Kit. Heather made hannah a poster today and Scott took it home to her. Hannah also thanked her mom for it and told her how much she loved it and how pretty it was. THat little girl is so complimentary. She is so proud of the make over on the house. She tells everyone all about it and wants them to come and see her house. She asked Heather today over the phone "Can you hear me walking on the tile? Well it really isn't tile it is actually hard wood." Too cute. T

Days 17 and 18

It is 11:20 pm and i am just home frome spending time with Heather. I have to be to work at 6:00am for a 12 hour shift, so this will be a quick blog about the last 2 days events. Sunday Heather's friend from college Dianna was here and got to the nursing home before they even opened the doors for visitors. I was so glad that she and Heather got to spend quality time alone. She was such a great support to Heather and was cheering so loudly for Heather while doing her Physical therapy. They got Heather to walk a bit using parallel bars and someone assisting her. It was so much more than we ever thought she would be doing at this time. Heather had lots of visitors on Sunday. My father and i got to spend time with her during the day and then i left when Scott brought the kids and other friends and family came. My sister Heidi got to bring her whole family which ment a lot to Heather. But most important, Heather got to have the kids there a lot. Aaron would come up to the bed and lay his head on her feet and rub her legs. He seems to understand that mommy does not feel good and was giving her loves.

Monday (Day 18) did not start out the best. I got a text from Heather at 4:30 this morning while i was asleep. It woke me up and i was worried something had happened. Now that Heather can use her hands better, she requested her cell and was madly texting everyone last night. I was the lucky recipient of her early morning texts. I wrote back because i am a good sister and felt bad taht she could not sleep. My dad got to the facility early to be wtih Heather and help her with breakfast. SHe had occupational therapy early and he had Heather try and dress herself (obviously she needed help but did ok), and he got her up into the wheel chair and had her brush her own teeth over the bathroom sink. Yesterday i brushed Heather's teeth for her in bed, so it was nice to have her do it herself. Tristan was done with school at 9:00 this morning and we met up at the facility after he was done with class. We walked in while Heather was brushing her teeth. My dad was beaming with excitement at Heather's progress, but pulled me aside to tell me that Heather was very upset when he got there. She had not slept at all and told scott this morning to get her out of the place. She was determined to break out and was very upset. Tristan my dad and i went to occupational therapy with her in the gym. We all sat in a circle and did our exercises with Heather with the resistance bands. It was fun and cool to see her doing better. We stayed for a bit and Heather sat up in the wheelchair and we discussed how important her therapy is and how she can't go home until she can get the catheter out and can tinkle on her own. My dad was a trooper and was there from 8:30 to 8:00 at night. What a great dad! Heather had plenty of visitors today as well. My cousins came which made her day, and ward members came at night and entertained her. I promised i would not leave until she went to the bathroom. They took out her catheter at lunch time. Finally after everyone left at 9:00 she was able to go to urinate. They even checked her bladder after and she had emptied it completely. It was very exciting for us. Next step will be to do it in the toilet instead of a diaper. I stayed with Heather and changed her diaper and clothes before i left. I love being able to do that for her so that strangers do not have to. I was the last to leave tonight and it was sad to leave her alone. The plan was for her to come home Friday, but it sounds like Heather and Scott have put things in motion to be home wed or thursday.

Day 15 and 16

Day 15: This was Heather's last day at St.Joseph's hospital. I went and visited her in the morning and then went sraight to Long Beach to my job there. I work every friday night til 11:30pm. This is why there was no entry last night. Heather was able to sit up on the edge of the bed yesterday with physical therapy. SHe was moving so much better, she could raise her right hand and touch her chin. THey decided with that improvement she was eligible for some rehab therapy to try and get her feeding herself again and to get her to use the walker so she can get out of bed and go to the bathroom. In order to do this, she would have to go to a skilled nursing facility which most of us would call an old person's or convalescent home. I know this idea was not the one Heather was hoping for, but it was the best. At home she would not get the amount of therapy she needs or as aggressive therapy. Scott went and looked at the facility and reported that the average age is 90 and Heather would have a roomate and the food was not great. I am proud of Heather for picking the more difficult choice,which will ultimately be the best for her. She was in such good spirits yesterday and her rash looked so much better. I scratched her head for her, fed her ice chips, and put a movie on for her. But mostly we just chatted which was fun. We were joking about how she would be the hottie of the rest home and all the old pervie men would be pinching her bum. The nurse came in to see what was the noise in heather's room and was surprised to see heather laughing pretty hard. Heather told her that we were just cracking jokes and messing around. It was so good to see my sister back. Late afternoon friday they moved her to a nursing home around the corner from the hospital.

Day16: Well it was Heather's first night in the rest home and she did not like it. She woke up at 3:30 in the morning and thought it was 3:30pm and that nobody had come to see her. She said she cried and a nurse came in and told her it was the morning. It relieved her a bit but she still just cried herself to sleep. Today when my parents came to see her in the morning she started crying again. Said she did not like it there cause the food was gross and nobody came to help her. But while my parents were there, the physical therapist came and got her up and did an assessment so they can start working with her tomorrow. Heather had so much more strength and contorl today and surprised herself, that i think she finally realized how fast she can progress with this rehab. It made all this worth it. I was expecting her to not be the best since she had such a rough night. When i got to the facility around 5:30 Heahther had a full room of visitors and was sitting up smiling and talking. She was so alert and as she talked she used her hands to talk. SHe was able to move her left hand so much. Not the best strength but able to move it all around. And she could scratch her forehead with her right hand. It was so exciting to see this. She could move her right leg quite well but still not much help with the left. She was not nodding off after talking, she was so awake and stayed up until we left around 10:30. We made sure she got a sleeping pill tonight. Scott is not allowed to stay with her so she gets really anxious being there along. I hope she can get a good night sleep. My dad drove all the way tonight just to drop off a mini portable dvd player for Heather so she will have something to do. She was really excited. She also got to see her kids today. Hannah was pushing (or trying to) Heather around in the wheelchair. She loves to take care of her mom. Some of heaher's work friends came to visit which was so nice and brought gift cards to the grocery store, restraunts, and target. It was such a blessing and wonderful thought. Dianna and Stephanie were both able to fly in for the weekend and i know it just lit Heather up. This is probably why she was so spry today.

I could not have asked for a better day. I am so pleased with heather's progress and can't believe how much better she is in just one day. I can't wait to see her progress with the rehab. It will be so nice to get her home when the time is right. She is in a nice place that does not smell and she does not have a roomate at this time which is wonderful. Her rash on her forehead is almost gone and it is much improved on her back. Now we just have to conquer the full bladder and not being able to void on her own. She had that catheter for so long and now she just retains her urine. She had to have a catheter placed again today. I hope this problem will improve as she continues to get better. Sorry for the long post but it is two days worth of info. I just can't believe how good she was doing today, I can't stop smiling!

Day 14

Today I woke up early and cleaned the house and got the laundry started. I went and spent the afternoon with Heather at the hospital. It was really fun. She was awake and really interactive. Three women from her ward came over and gave her a manicure and pedicure. Her ward is so wonderful, the people have been so good to Scott, Heather, the kids and to our family. I am so glad Heather has such wonderful friends in her ward. Heather and I watched Dodgeball together. Heather would nod off here and there, but there was one time when she all of a sudden said, Hey I never saw that before. Did you notice that sign before. I started to laugh because here she is with a brain that sometimes does not work, but she could read this sign in the background of the movie that neither of us had seen before. She did better swallowing and drank quite a bit of her chocolate shake and ate lots of ice chips. She even had one of my m&ms. When i left the hospital they were coming to work on heather's port a cath. It is a permanent device that is in her arm which they access by sticking a needle in so that she does not have to get IVs every time she needs chemo therapy. Well this port is Heather's third and it has been a fickle one. Now after all this time despite continuous fluid flowing threw it while in the hospital, it clotted. It will allow fluid to go in, but won't let blood be drawn from it. They have tried some clot busting medicine but it did not work. Today she was to have a 3 hour infusion of some stuff that will break up the clots in an attempt to get it to work again. I texted Scott tonight and he said it was successful. YEAH!

On a side note, Heather asked Scott to call me tonight to tell me i am the smartest nurse/nurse practitioner ever. Today while i was there i asked heather about her rash. She said the doctor came today and still said looked like reaction to radiation. I told Heath that if it was not gone soon when she goes home i will write her a prescription and we would just do the anti fungal medicine ourselves. Everyone in the room was just kind of laughing about that. Well turns out when the oncologist came tonight he said hey looks like you have a fungal rash. YEP people I was not so crazy after all. I was bummed today after i talked with Heather since my diagnosis was wrong. Now i feel so much better. They ordered a cream and scott said it is already helping and the rash looks better. YEAH! Still waiting to see if Heather will come home tomorrow. She has been having fevers for the last few days on and off. But when she does get to go home Heather is in for a treat. I had mentioned before about the extreme home make over that people in Heather's ward are doing on her condo. It looks great. Before Heather got sick, my dad and she had picked out some laminate floor to put in and today it was installed thanks to Heather's ward and they finished the place by doing the living room and dining area. It looks amazing! Thank you!

Day 13

Not much to update, unfortunately I only went to the hospital once today. I went tonight from 7:30-9:30 with my husband and my parents. I had the day off today and planned on spending all day at the hospital. However with this all going on the last 2 weeks, I have not done laundry or any deep cleaning. I have done the light cleaning, but felt like with family and friends starting to come and stay with us I really wanted to get my house back to pre hospital life. I have neglected my home, laundry, cooking, and my personal life. Today i just needed a bit of time to clean and organize. I still did not get to the grocery store. We are down to whats left in the back of the cupboards, there just is no time. I woke up so tired that i just laid on the couch and watched some recorded stuff i have not watched. I finally got off the couch at 11 and started cleaning. I felt so guilty about not being at the hospital but i was stressing out about getting the housework done. It was a tough choice. Truth is i think i had some depression issues today. It was the first day i did not have to be at work or get up early to go see Heather in the ICU and make sure everything is ok. So i had no real motivation to get up and i finally had to deal with everything. I have been on autopilot just going through the motions of life and work and living at the hospital. But i got my act together, cleaned for a bit and then i went to play with Heather's kids for the afternoon. Hannah and i are so close and she had mentioned to me on the phone the other day that i don't come over anymore. This is because i am always at the hospital. I had a great day with the kids and my parents. Tristan joined us for dinner and we all went to the hospital. I plan on spending most of the day at the hospital tomorrow and finishing up my cleaning. My dad is staying with us tonight in our new guest bed. I am really excited Tristan's parents gave us a double bed so that people can stay with us at this difficult time. My mom is staying with the kids and I wanted my dad to just come over and relax but be close enough to go help my mom in the morning.

Now for what everyone actually wants to hear. Heather was doing well today. She was talking and with it tonight. She has moments where she can't think of the word she is looking for or can't remember what she just said. She told the nurse's aide her pain was an 8 out of 10 and then the nurse came in 1 minute later and Heather told her the pain was a 5. My dad told her she had just said an 8, and Heather smiled and said "Oh I forgot that!" Unfortunately Heather now has a very bad rash on her back and a little on her forehead. They think it could be reaction to radiation or to the laundry detergent from the hospital. I saw the rash tonight. My nurse practitioner diagnosing skills (which are still developing) tell me it is a fungal rash. I think it is from her sweating and lying on her back and the sweat on her forhead. We get this a lot in our little kids. I mentioned that to the RN and suggested a anti fungal powder to use. This is the first time i over stepped my bounds but i did it nicely. I suggested, did not say do this. I asked that they have the physician in the morning look at it and see what he thinks. I can't wait to spend tomorrow with Heather now that she is alert.

One more thing i would like to add. Heather's radiation is being pushed back for a couple weeks to allow her skin to heal from the surgery site. The case manager who is arranging all the discharge stuff called the insurance company today and they will not pay for an ambulance to pick Heather up from her house for 5 days and take her to radiation. The lady then called the CARE ambulance company and asked if they have discounted rates that the family could pay for to have heather transported. The company must have been so moved by the story cause they have agreed to transport Heather for those five days for free. I can't believe it. I was so excited i cried. Just a small way Heavenly Father is blessing us and helping everything to work out to get Heather home. I work with CARE ambulance at my job and I am planning on writing the company an enormous thank you letter when i have the time. I will let everyone know if Heather's plans for Friday discharge is still happening after i visit tomorrow.

Day 12

I got a text this morning at work from scott saying Heather was doing well, awake, talking, and even wanted some toast. Since she was doing so well, i worked really hard to get all my work done so i could get over there about 1:00 and spend the rest of the day. Unfortunately things never work how i plan and i barely made it to the 3:00 family meeting Heather's nurse paged me about. We met to discuss what Heather's wishes are. We all know she wants to go home when she feels safe enough to be there. She wants to try and get more mobile and to eat better. We discussed hospice care (end of life care to keep you comfortable til you pass away) and palliative care which is what Heather wants to do. This is when there is no cure such as is Heather's case, but you still want to do measures to try and keep your disease in control. Heather told everyone today that she wants to fight, to show her children that their mother did not give up and is fighting to be with them. So palliative care it is. Heather will do radiation next week if all goes well and then chemo after that. At any point she can decide to stop these measures and do hospice care. The team of women we met with today were awesome they have amazing resources. They are trying to arrange everything to get heather home with the needed equipment and meds and other necessities. They are even trying to figure out how to get her to her radiation appointments everyday since she can't walk or get in and out of wheelchair. Also, she has to get up and down the stairs to get in and out of their condo. The discharge planner is working on getting an ambulance to come and get heather for 5 days to go to radiation. We will see if that is approved by insurance, or maybe she will go to a skilled nursing facility where they can also transport her to her appointments, then can go home from there.

It was nice to see Heather awake today, but by the end of the day she was so tired and starting to not make sense again sometimes. She has her up and down moments. Still can't move very much. Her throat is sore from the breathing tube she had in which makes eating difficult, but she is trying. Hopefully we will have her out of the hospital this week. She is out of the ICU as of today and plans are maybe home friday.

Day 11

I happened to check my voice mail today at work and got a message from my dad saying the hospital called Scott this morning and told him Heather was not doing very well. Of course i get that message awhlie after the fact since i don't have cell reception in the hospital. I ran over to St. Joes from my work and happened to run into one of the neurosurgeons who operated on Heather. He is a peds neruosurgeon. I told him that he operated on my sister and he said he knew that and wanted to know how she was doing. I told him i was on my way to find out and he offered to come with me. So nice and comforting to know he was there. He checked her numbers and spoke with other docs and nurses and told us that her Ct from this am looked good. He orderd her drain to be clamped and told me that she had a rough night with high hear rates and agitation so they were diving her lots of sedation. He believed this to be the cause of her lethargy, not any problems with her brain. What a relief.

Later i was paged by Heather's nurse to come to a family meeting (scott and I) with Heather's actual neruosurgeon doctor Ho. He told us that It could be hydrocephalus as Heather's drain was clotted off, or it could just be the progression of her disease, but that she was really weak today. She could talk and understand, but could move less and was having more pain. We discussed our options. We decided to choose between two. Pull out the drain and let they hydrocephalus accumulate and take Heather home to die in the next day or two, or choice number 2, to place a shunt in her brain. THe shunt would function like the drain she has, it would be inside her body and go into her abdominal area where the fluid would be reabsorbed by the body. This would take care of the hydrocephalus or fluid in her brain and then she could go home and woud eventually die from the cancer who knows when. Problem with that is, she won't be able to have the quality of life we hoped the surgery would give her. SHe is too weak to move and she can't eat. We decided to do a repeat cat scan and see what it showed this afternoon after having her shunt clamped today. If it showed hydrocephalus then we would have to pick an option.

Part of me wanted to let her go, she was suffering a lot today. But then when the doctor was trying to unclog the drain, it was causing heather so much pain that she became more alert and was functioning well cognitively. Then i felt like it would be killing a perfectly awake and alert person to just let her go. I was split. I went to talk to Heather as she was in so much pain. She told me she did not want to do this anymore. I asked her what and she said be in pain. I promised her she would not be in pain. She said she wanted to go home. I told her she would get to go home soon. Then i told her i had to talk to her about something tough. I told her that she had to help make a choice. That her cancer was so bad and her brain was not working right that we need to either take out her drain and send her home or put a shunt in. I then told her that if we take out the drain her hydrocephalus will come back and she will die over the next couple of days. I assured her it would be at home and that she would not be in pain. Or she could choose to have the shunt place and drain the fluid to her stomach area and go home. SHe would eventually die still as we could not longer cure or fix her. It was very hard to bring this up but I think since she is congnitively intact periodically that she should be aware and make the decision. She said she knew she was going to die and what would her kids think. I promised her they would be taken care of by all the family members on both sides who were there today. Not to worry about them and to focus on herself and do what is best for Heather and what she wants to do.

My mother and sister were able to have wonderful goodbye conversations with Heather but i had to go back to work so i did not want to be a wreck. Luckily her scan looked good today and showed no hydrocephalus. We ended up not having to make a decision for now, but i am sure there will be plenty of more difficult decisions ahead. She will likely have the drain removed tomorrow and go to the medical floor. Hopefully she can go home this week. What will the plan, i don't know???? That is my next thing to find out tomorrow. How much time, will we have home nurses, how will she get feed at home, will she need a hospital bed etc. So many things to work out! I really have to say what a wonderful family Scott has. They have been so helpful and supportive. You can tell how much they care for Heather. I am so glad she is so loved by them. Thank you Chapmans.

Day 10

Short update. Tristan and I went to the hospital before church today. Heather was asleep so we just visited with Scott. She woke up when we were leaving and asked why we had to go to church. They clamped her drain this morning and her pressures started to rise will we were there because they were giving her a bolus of fluid. SHe has not been able to drink or eat much and was getting dehydrated. But the fluid they were giving her to re-hydrate her makes the pressures in her head rise. They were able to come down quickly then they would go up again. We were only there an hour. When we returned after church she was asleep again. I spoke with the nurse and he said her pressures went over 25 and they had to open up the drain again. So that sets us back a day on our plan. However, it would be worse to have the drain pulled out too soon, and then the fluid accumulate. So this is better overall. Hopefully they can clamp it again tomorrow and watch her for 24 hours then pull it out on tuesday. Your thoughts and prayers are much appreciated.

Happy Valentine's Day (day 9)

I was able to celebrate my valentine's day just how i wanted, with Heather that is. I was at the hospital from 11:00 to 5:00. She is still not back to herself prior to surgery, but better than when the day she had emergent surgery. She is with it and able to answer everything, but she talks to you with her eyes closed. It is really funny. I think she just wants to rest and keep out of pain, so she lays there very still but will talk with you. But she can open her eyes. She got some morphine last night for pain and had some fun hallucinations. She told my brother that a bunch of cancer patients were in her room and somebody brought medical marijuana in and they all were fighting over it. But Heather did not want any cause it made the others throw up. She told us this with a straight face and really believes it happened. It was pretty funny. She also thought she was wetting the bed and that nobody cared. I explained to her she had a catheter in, but she insisted she did not and started to get angry with me.

Her perception of time is off. She thinks a couple minutes is a long time. So if you ask the nurse to get ice chips, she thinks it has been a really long time and gets impatient. This is not our typical Heather, but it is common to be negative and a bit mean after brain surgery. People often have different personalities after brain surgery, and i hope this is not heather's permanent new one. Funniest thing is that sometimes just when we think she is out of it or saying something crazy, she totally surprises us. Her nurse's name today was Jacob and he kept asking Heather what his name was. Finally she told him she would never forget it cause of Jacob on lost. He asked her who that was and she told him an entire explanation and synopsis of lost. How does she remember all of that???? She also said that a song was stuck in her head....."Don't cry for me Argentina" from Evita. Heather was such a crack up today. I left to go get her a jamba juice but buy the time I walked to my car, got to the place, got the drink, parked again and walked to the hospital it had been 30 minutes. The entire time I was gone she was mad at me and kept asking where I was and saying that I probably would never come back.

Heather still cannot move her left leg. It is very upsetting to her. I keep reminding her to give it time. Her strength in her arms comes and goes. She still has a drain in her head to remove extra spinal fluid and keep the pressures in her head low. Tomorrow the plan is to clamp the drain and monitor the pressures in her head without the ability to remove fluid. If she can keep them low like that then on Monday they can take out the drain and she can resume physical therapy and get out of the ICU. All in all she is mentally there and just wants to get better. Her Cat scans show her brain has improved much since the surgery and there is plenty of room around her brain stem for spinal fluid to pass now. Lets hope we continue to progress from here on out.

HAPPY VALENTINES DAY!

Day 8

Who would have thought that the girl that blogged about once a month would be so devoted. Scott asked me today how i find the time to blog. Funny how i was not quite so busy before but never blogged and now i am in constant chaos yet i manage to do these updates. My husband hates all my spelling errors and that i don't capitalize the letter i and first names in these posts. please note i write these late at night as fast as my fingers will type and don't proofread.

Not much to say today. They kept Heather on the breathing machine over night and sedated. The neurosurgeon came today and like the pressures inside her head and all her numbers and vital signs. They decided it was ok to let her breathe on her own. I got there abouty 1:00 today as i had to prep for my class i teach at long beach today. She still had the big breathing tube in her mouth and it was so hard to look at her like that. She was mouthing things to me but i could not make out what she was saying. She wanted that tube out. They took it out and when they asked if it was better now she said yes. Music to my ears!!!! I was able to talk with Heather and she said she did not want to hear about her surgery. SHe told me she could not walk still. HELLO! You just had brain surgery like 16 hours ago are you crazy? I told her it would take some time to build that up and she would not get some strength back for the next few days. I could only visit for an hour today. I have been at work all night but called my parents to see how heather is doing and they said Scott told them she is getting back to her old self as she is ordering him around. Bet he has never been that excited to be bossed around by his wife.

Day 7 (not such a lucky number after all)

I woke up today in a daze, exhausted and not really sure how i even drove to work, but i ended up in my usual parking space at 6 in the morning. Work was so crazy busy and i did not get over to see Heather early as I had hoped to. I was so worried about her all night and just new something was wrong. I called Scott and he told me she was sleeping non stop and not really talking at all. She had been having headaches and they were giving her morphine and a bunch of meds for her nausea. I had been up all night thinking about how i thought maybe heather was still having some sub-clinical seizures and that is why she is so exhausted. I wanted to investigate that today when i saw her. Then I spoke with my dad in the afternoon and new something was off when he told me he went to see Heather and her right arm was turned in clenched like a person after a stroke. I was able to get off work around 3 and go over to see her. A friend and Scott's father were there with her. Heather would open her eyes a little bit and say one word answers with her eyes closed and go back to sleep. At least on wednesday we got s few sentences before this happened.

So the investigation begins what is causing this? Here were my top three diagnosis': 1) Over medicated/sedated
2) Seizures that we can't really see and so her brain is not functioning properly
3) Increase in size of tumors or swelling in brain.
Easily could be over medicated, but would not be causing her right arm to curve like that. Luckily the pain specialist came by and she agreed Heather appeared over sedated. She explained they had started 3 new meds the night before. I still was not satisfied as she was groggy yesterday. I asked her to tell me everything heather has had. She looked it up and we were both surprised to see that Heather had only received one dose of morphine that morning. None of the other meds had been given as she was comfortable and sleeping all day. That rules out the over medicated. Then i realized my worse fears were true it was something wrong in her brain. I would have demanded they do a cat scan, but lucky for me they were already on there way to come get her for one. probably should have been done yesterday but at least it got done. I had asked earlier if the CT was because they were concerned about acute changes or if it was pre op preparetion. They said preop prep, but I knew better as she was to have an MRI for that tomorrow. I figured someone else was suspicious too. Glad they were cause it was almost too late.

The scan showed lots of increased swelling in her brain. The radiation she has been getting has caused her brain to swell but it has no where to expand cause the tumor is in the way. SHe had been slowly dying but now it would be quick. The doctor felt that there was not time to wait til the 1:00 surgery tomorrow and said she would not live through the night. He said it is now emergent surgery and he would not beable to do the MRI to guide him during surgery and Heather would now need a drain coming out of her brain to let out fluid. Also he would be taking out more of her skull to let her brain expand for future radiation. So not best case scenario but it was done. Perhaps later i can talk of the sweet and selflessness i was able to witness as my brother in law told his wife that if she wanted to go home to her father in heaven or if that was God's will it was ok for her to go. He said his goodbyes in case she did not make it. So SAD but sweet to watch. Heather was so at peace. Eyes closed but that big smile on her face. She was less and less responsive as we waited about one hour for her to get to surgery. But that is acutally pretty quick.

Long story short, Heather had the surgery and it went well. when they cut in the tumor was already trying to come out the hole they made cause there was so much pressure. They were able to remove it and i believe the second one as well, and place a drain to drain the fluid. She was already able to wiggle both feet and blink appropriately. She will be in ICU and on a ventilator overnight. Hope to get her off that tomorrow. Right now she needs to rest and let her brain recover. So we are asking for people not to visit right now. If you come by please just spend a few minutes. She will not have radiation for a whole week. The surgeon was very optomistic of heather regaining some of her function. Thanks for everyones prayers.

Hospital Days 5&6

Tuesday 2/10: Heather was asleep when I went to visit her on my breakfast break but she awoke when her nurse came in and seemed alert and in good spirits. The neurosurgeon came in and explained to Heather that she had so many lesions that he could not remove all of them. He started talking about the big tumor pushing on her brain stem and how he could easily remove that one, but that it would not change her outcome and cure her. After that he turned to me and asked if I had any questions. I told him that I had been discussing this with Scott and wanted to know why they still could not remove the tumor. I explained that she could not walk well, use her hands anymore, hold her head up straight, and stop vomitting. I asked him if we removed the tumor would it improve these symptoms. He was very receptive and explained that removing that tumor would be simple and low risk and it would help to give heather the quality of life she would want in her last days. He said if she had less than 3 months to live it would not be worth it. I told him she had til the end of the year. He even said that if it was his sister he would do it and heather could go home and be able to use a walker and get to the bathroom and see and talk to her children. I explained all of this to heather and it was the first time i really saw her smile wtihout showing a front for a visitor.

When i returned later Heather asked me to tell Scott about the surgery. Later that night Scott and Heather talked with the oncologist and told him they would like the surgery done. He asked Heather if she was ready to fight? And if she wanted to he would fight too. He told Heather to think about it and she told him there really was nothing to think about. That she wanted to do it. I have mixed feelings. I really do think that the surgery is a good idea. Heather will never get home or get around if she does not have her tumor removed that is causing most of these problems. If she will live till the end of the year, then she deserves to have a good quality of life and not be nauseated 24 hours a day and to be dizzy and weak all day long. I know people may not agree with that as some of my extended family have raised questions. It is not a choice to prolong life, just make what is left tolerable. The tumor is very superficial and it will be a very easy procedure where they won't even take or touch any brain tissue. I have taken care of kids who have had this done and they go home in 2 days. Heather will continue her radiation after that. I just don't know if chemo is the way to go as it will then make her so sick and she may be miserable. But is guess you don't know how sick or bad you will feel until you try it and Heather has lived with chemo for pretty much her last 2.5 years of life.

Wednesday 2/11: Went to see Heather today. My sister Heidi was at her bedside while Scott went home to shower and play with their little boy. Heather was asleep within a few minutes she awoke thorwing up. It was a lot of emesis. she then had to go to the bathroom but said she could not walk today. I had to grab someone to get a bedpan. I then put heather on that myself and cleaned her all up. Heidi was so glad that I am a nurse cause she said she had no idea what to do. Heather could not use her legs today. She is not walking at all today. She slept the whole day. She would wake up and say hi to her visitors and have about 2 lines with them and fall asleep while they answered one of her questions. Not sure if it is all the anti nausea meds making her groggy or the radiation catching up with her now that it has been 3 treatments. Her heart started to have irregular beats. That can also be due to the tumor on the brainstem or her electrolytes. She is to have an echocardiogram of her heart tonight. She is on IV nutrition now instead of just IV fluids. She looked today like she did the day she came to the hospital. She has been doing so good and was so excited about the possiblity of feeling better after this surgery that it was heartbreaking to see her like this today. I felt so good yesterday and today and at peace with the decision for surgery and now so bummed she is not doing well.

Hospital Days 2-4

So excuse the greasy hair (hence why i am wearing the hat) and my adult onset acne and non make up face. Heather has a good style going on too. I asked her if she stuck her finger in a light socket when she got up this morning. Too cute I love it!

I am sure that after the post on Saturday people are curious to get caught up. I am proud to say there is not much to say. On Saturday Heather was a new person. Still weak, but had color in her face and her spirits were up. She was able to get to the bathroom in her hospital room with the walker. That is about as much physical activity as she can endure. She did not get radiation over the weekend so maybe that helped her feel stronger. However, she did have an MRI on saturday so the neuro-surgeon can take a better look at her brain. A cat scan is like a polaroid it shows you an image quick and id's big tumors or masses. The MRI allows you to see more of a 360 view and you can see all parts of the brain. The MRI ended up showing that instead of 4 lesions that are on the original cat scan, that Heather actually has 10. It does not change the current plan as she is still going to get radiation. But of course must i say it again, can we just get a break from constant bad news???

Heather is having difficulty holding her spoon or cup to feed her self, but not giving up. I told her it is ok to be a little sloppy to maintain some autonomy and still do some stuff for herself. She can not hold a pen well to write and her soduku (don't know how to spell it) puzzle was a bunch of scribbles instead of numbers. She had a bad Saturday night with some vomiting and nausea. She does not get good sleep either at night. She has been doing better with the vomitting yesterday and today and they are going to give her some sleeping meds tonight.

We don't know when she will be getting home. Her condo is on the second level and it would be so hard to carry her up and down those stairs daily to get her to and from radiation. She still needs to be in the hospital as she cannot eat much. So the next step will be what to do for nutrition. Iv fulids is electrolytes and sugar, but not nutritional. There is some IV stuff you can get called total parenteral nutrition that has all kinds of vitamins and stuff in it. So she will either need that or a tube in her nose to feed her. I hope not that. Plus i still think that will make her barf.

Today the neurosurgeon came and told heather the results of her scan. After he left she pretty much put it together that her life would be short. Later when her friend came to visit she sat there brave and told her friend she would be dying and thanked her for being a good friend. That is my Heather gracious and kind even in a moment like this. Thanks to everyone who has emailed or commnented on this blog. The memories and love you have shared for Heather with me are precious. People we have not seen or spoken to in years have some how found this blog and some even have shown up to the hospital. It is amazing how wonderful our network is as members of the church.

Address

Some people have wanted to send cards to heather which i think will be wonderful. Even if she does not end up coming home as soon as we hope, we can bring them to her in the hospital and i know that will cheer her up. I am hesitant to just post her address right here on the blog. So if you would like her address please email me at cheriseluedtke@hotmail.com and i can send it to you.

A turn for the worse

Well as if the last blog was not depressing enough. Here is the latest news. For about one week now Heather has been very sick. SHe has been throwing everything up not eating, and can hardly walk. For about a month my sister Heidi and i have been commenting on how mentally slow Heather has been. She takes sometime to process info and to respond to you. It seems like sometimes she does not even remember she was talking to you. On Wednesday night i went to Heather's house and there i had to help her get into the bath tub and i had to bathe her and wash her hair. Nobody should have to do this to there 31 year old sister. It was all i could do to not ball my eyes out. It was extremely hard because she is so disfigured from her double masectomy. While i was getting Heather out of the tub she had to sit on the floor because her left leg would not work. I begged her to go to the emergency room but she said if she was still sick in the morning she would. Well she did go to her oncologist the next day and they rehydrated her. I was pretty upset that they did not give her as much fluid as i thought she should get. She was to go back to the doctor on friday (yesterday) and get more fluid and an ultrasound of her stomach to see if there was fluid in it causing her to throw up.

I have been sick so i slept in yesterday and turned my phone off, something i never do. I awoke to here that at 0800 in the morning on friday heather had a huge seizure and was taken by ambulance to the ED. She was sitting in bed getting ready to go to the doctor and my mom handed her her toothbrush and she could not hold it. SHe then started screaming she was dying and had a good seizure. My mother called 911 and Scott (Heather's husband)kept trying to keep heather breathing while my father gave her a blessing. When the ambulance got there she had just stopped seizing and all she could say was she wanted her daddy to hold her. So my father who is petrified of hospitals bit the bullet for his baby girl and rode in the ambulance. At the E.D. they did a cat scan of her brain and found that she has four tumors in her brain. The largest one is 4 cm and is pressing right on her brain stem. Hense why she has had memory problems recently, not able to move her leg very well, and all her throwing up.

I was extremely upset by this as she just had a scan which we got the results only 4 days prior. THey did not mention any problems in her brain. As i probed for answers to this i found that her last scan two weeks ago only took pictures from her neck down which is why they did not know this. I just don't understand how come the doctor did not scan her brain after he knew her cancer was in her bones. Being a medical professional i know that once it is in the bones, the next place it takes up as residency is the brain. Heather already had radiation therapy on her brain yesterday, and will for the next 12 days or so. However, they are coming to talk to her on Monday after she gets and MRI to discuss if surgery is an option and if heather even wants to do chem or radiation. The oncologist met with Scott cause Heather was so mad at him she did not want to talk to him. He told Scott that heather's days are numbered on this earth and if everything was done to treat her the longest she would live is to the end of this year. I don't think she will make it that long. My guess is 3-6 months, and quicker if she does not get any treatment.

I don't know how to keep going on at this point. Obviously life will and others have done it when there loved ones pass, but right now i am so angry and upset and feeling guilty that i did not push harder to get her to the specialists at UCLA. She chose to get a second opinion here in orange county rather than there and i felt i had pushed enough. I now realize that is not true. I failed my promise to do all that i could to cure her. I just wanted to update everyone as i know Heather's friends and family read my blog since she does not update hers often. I feel so much for my parents who have to loose a child and for Scott who will loose a wife at the age of 32 after only almost 7 years of marriage. I am grateful that Tristan and i moved so close to them so that i can be here for Heather at this time and that I can be there for her children for the rest of my life. I have promised her to help raise them as my own children, that is the least i can do for her.

Much thanks and love for all who have our family in their thoughts and prayers and to my husband who held me til 0400 this morning when i finally stopped crying and fell asleep.

Latest Heather Update

Well the Terry/Luedtkes have all been sick. I think Heather's kids started it and unfortunately she got it really bad too. Both my parents were sick and now Tristan and i have it. It is the worse cold i have had and the longest. Due to our illness I did not get to update my blog about heather's latest scan and some people have been calling me to ask how it went. It looks like her bones are improving with this new chemo and bone strengthener, and the tumors she has in her liver and lungs shrunk. However, there are now more tumors in both the liver and lungs. Can we just get a break here???? So the new plan is to do some very strong IV chemo. IT is the same IV chemo her previous doctor wanted to do, but this new doctor felt it is very strong and dangerous and should only be tried if the oral chemo failed. Well it looks like we are back to where we were a couple of months ago. The oncologist has talked to over 15 other doctors and they all say heathers case is baffling. How can it shrink some and yet new ones grow. Everyone is trying to put their heads together in the oncological world and figure this out.

Heather has been very sick on this oral chemo she has lost 15 pounds in the last 2 weeks and she throws up all the time even on her week off chemo. She is very weak, pale and frail. She can't keep anything down so she is so dehydrated. She can hardly walk around the apartment and she has to have help to get up and down the stairs to there condo. I hope this new iv chemo will be like the last where she is so sick for a week but then has a couple good weeks. Thanks for everyones thoughts and prayers. I will keep you posted.

On a side note. Heather's daughter Hannah just loves her uncle Tristan. THey were playing in her room the other day and of course Hannah wanted to play pretend as always. She has quite the imagination. She told Tristan that he was a boy from school and he wanted to play with Hannah cause he thinks she is also a boy. But Tristan is to act surprised when he finds out that Hannah is a girl. She just looks like a boy cause her head is bald from her cancer. Ok does that not break your heart that a 5 year old is role playing this all out. She also told me that she thinks a boy in her kindergarten class has cancer cause he has funny looking hair that Hannah thinks is a wig. I cant believe a 5 year old knows so much about this.