Emilee was unresponsive today (except for two “uh-uhs” when she didn’t want something). She is slipping away rather quickly. Most the day was a mixture of tears with small moments of laughter as we as family members worked together and embraced the sweet spirit in her room.
The hospice nurses and health aides have been stopping in and working to keep Emilee comfortable. She mostly communicates that she is in pain and we are working hard to relieve that. Please keep praying for pain relief for her.
In case you didn’t know, Emilee is an incredible scrap booker. Her mother got her on a good path by keeping memory books since she was born. Emilee has stayed in the habit and has left over 20 big thick books of scrapbooking memories of her and her family. Your comments, memories, and favorite stories will continue in one of her scrapbooks to be kept for her children and grandchildren to see. Please keep the messages coming for David and the boys and share any experiences or stories you would like to. Emilee’s parents express thanks for the kind messages, flowers, meals, etc. that have been coming it. It has really touched them.
I’m putting together a memory video with photos of Emilee through her lifetime. If you have any photos of Emilee you would like to submit, please send them to jkilstrom@gmail.com. I can’t guarantee they will get in the video, but I will try. --Jennie Kilstrom
Monday, March 2, 2009
Sunday, March 1, 2009
Comments
I will be printing off and reading the comments and e-mails left for Emilee to her. She may not respond, but I know she is aware part of the time of those around her and the comments left for her will be heard. So, please keep writing any memories, thoughts, etc. for her and her family and they will be read. Thanks!
-Jennie Kilstrom
-Jennie Kilstrom
Sunday, March 1
Hi, it's Jennie again. Emilee is still having a hard time and under a lot of pain medication. It's been difficult to watch her suddenly struggle so much. For those who visited 7 or 8 days ago, you know she was able to receive visitors and talk for a long time. I was sharing a Barbacoa chicken wrap and folding laundry with her 9 days ago and talking about life, family, etc. for hours. But the past few days she is really struggling and is resting a lot. Thank you to those who are fasting and praying for her and her family today.
On a brighter note, David told me she craved her favorite Roxberry Mango Madness smoothie on Saturday and was able to have a little that.
The family has expressed a few things that neighbors, ward members, and extended relatives can help out with. Call the Ellis home to make arrangements. Here are a few ideas:
-Invite the boys over after school to play games, hang out, go on a activity, etc.
-Invite the boys over after school and help them out with homework.
-The boys have membership to the American Fork recreation center and could use a ride over and supervision while they participate in activities there.
For those of you who like to cook, here are some food suggestions:
-After school type snacks or quick breakfast type things you can grab and go like healthy muffins, banana bread, pumpkin bread, or really anything you make and want to share extra with (especially something that can be freezed and used later). The family really has enjoyed the desserts but their waistlines have suggested perhaps something a little healthier if possible. :-)
Your words of support through posting on this blog, writing a note, sending a e-mail, or talking to David, Brenton, Jonny, and Nathan really help them feel loved. Keep it up and thank you again for it.
On a brighter note, David told me she craved her favorite Roxberry Mango Madness smoothie on Saturday and was able to have a little that.
The family has expressed a few things that neighbors, ward members, and extended relatives can help out with. Call the Ellis home to make arrangements. Here are a few ideas:
-Invite the boys over after school to play games, hang out, go on a activity, etc.
-Invite the boys over after school and help them out with homework.
-The boys have membership to the American Fork recreation center and could use a ride over and supervision while they participate in activities there.
For those of you who like to cook, here are some food suggestions:
-After school type snacks or quick breakfast type things you can grab and go like healthy muffins, banana bread, pumpkin bread, or really anything you make and want to share extra with (especially something that can be freezed and used later). The family really has enjoyed the desserts but their waistlines have suggested perhaps something a little healthier if possible. :-)
Your words of support through posting on this blog, writing a note, sending a e-mail, or talking to David, Brenton, Jonny, and Nathan really help them feel loved. Keep it up and thank you again for it.
Friday, February 27, 2009
Friday, February 27
I edited the post a bit on 2/28/09. This is Emilee's sister-in-law, Jennie, updating this post. David asked me to help out until he and Emilee can write their own post. I'll give a brief update of the events of the past few days.
Emilee chose to end chemotherapy treatments and to use hospice care. It is defined as follows: "Hospice care is suitable when you no longer benefit from cancer treatment and you are expected to live 6 months or less. Hospice gives you palliative care, which is treatment to help relieve cancer-related symptoms, but not cure the disease; its main purpose is to improve your quality of life. You, your family, and your doctor decide together when hospice care should begin."
Hospice also covers pain control symptoms, mediation between doctors, nurses, therpists, etc., home care, family counseling, bereavement, etc. if that is what David and Emilee decide in their plan. Basically, it is a service in the home that will help Emilee be comfortable and manage her health needs as well as providing support for the family.
Emilee went to the doctor's for more pain management relief -it's been a tough few days and she has had to take extra pain medication to remain comfortable. She is groggy at times. If you would like to visit, please call before and see if it is a good time to come over -she really enjoys it and it lifts her spirits as well as those in the rest of the family.
David mentioned the doctor removed 2 liters of fluid from her abdomen today. Her swelling in the stomach is still very apparent but the swelling in her hands and face looked better than past times I've seen her.
I'll keep you posted as David and Emilee direct me to do so. You can e-mail me at jkilstrom@gmail.com if you have further questions. Also, the blog background has been acting wacky lately, so bear with me until the problem is solved. Thank you for your thoughts, prayers, comments, visits, and acts of kindness. They are felt and keep everyone afloat. -Jennie Kilstrom
Emilee chose to end chemotherapy treatments and to use hospice care. It is defined as follows: "Hospice care is suitable when you no longer benefit from cancer treatment and you are expected to live 6 months or less. Hospice gives you palliative care, which is treatment to help relieve cancer-related symptoms, but not cure the disease; its main purpose is to improve your quality of life. You, your family, and your doctor decide together when hospice care should begin."
Hospice also covers pain control symptoms, mediation between doctors, nurses, therpists, etc., home care, family counseling, bereavement, etc. if that is what David and Emilee decide in their plan. Basically, it is a service in the home that will help Emilee be comfortable and manage her health needs as well as providing support for the family.
Emilee went to the doctor's for more pain management relief -it's been a tough few days and she has had to take extra pain medication to remain comfortable. She is groggy at times. If you would like to visit, please call before and see if it is a good time to come over -she really enjoys it and it lifts her spirits as well as those in the rest of the family.
David mentioned the doctor removed 2 liters of fluid from her abdomen today. Her swelling in the stomach is still very apparent but the swelling in her hands and face looked better than past times I've seen her.
I'll keep you posted as David and Emilee direct me to do so. You can e-mail me at jkilstrom@gmail.com if you have further questions. Also, the blog background has been acting wacky lately, so bear with me until the problem is solved. Thank you for your thoughts, prayers, comments, visits, and acts of kindness. They are felt and keep everyone afloat. -Jennie Kilstrom
Tuesday, February 24, 2009
Tuesday February 24th
I am feeling a little sad today. I haven't feel well physically and that often affects my mood. I am also still doing research toward making my decision to start hospice or not. I had a nice visit from my brother Daniel and his daughter. They brought me some beautiful tulip bulbs, the kind that grow in water and you can see the roots at the bottom. He even brought treats, as Greg did last night. We never lack for sweets at our house!
We went shopping last night to pick up some maxi-pads to put over the spot on my abdomen that is draining. This morning I noticed it wasn't wet, so the leaking has stopped, at least for now. Thsnk you to whoever added more money to my donation account. David's income has been kind of hit and miss through his changing companies, so it is nice to know that we at least have some money to pay the medical bills. I promise that's all I will spend it on!
I have Dr. appointments tomorrow and the next day, so by the next time I write I should have a little more news for you.
Emilee
We went shopping last night to pick up some maxi-pads to put over the spot on my abdomen that is draining. This morning I noticed it wasn't wet, so the leaking has stopped, at least for now. Thsnk you to whoever added more money to my donation account. David's income has been kind of hit and miss through his changing companies, so it is nice to know that we at least have some money to pay the medical bills. I promise that's all I will spend it on!
I have Dr. appointments tomorrow and the next day, so by the next time I write I should have a little more news for you.
Emilee
Sunday, February 22, 2009
Sunday February 22nd
My favorite time of day is the evening, since David is usually around and I have my pain under control and I can lie down and relax or soak in the bath. My boyw were all visiting friends or cousins until late last night, so David and I snuggled up with the dog and watched I Love Lucy.
On Saturday morning the older boys came home and my parents came over to work on projects around the house. My project was to help make a list of projects for my parents and for others to be able to help us. I took a nap in the afternoon, then my two cousins, Julie and Chrissie and their husbands brought delicious soup and sourdough bread and mint brownies from Kneaders bakery. My parents enjoyed the visit as well and I got to hold Julie's baby Anna who is 5 months old. So cute!
Last night was Little House on the Prairie for our family entertainment. All of us like to try to guess what will happen on the episode, given the music and the characters, etc. Then we have a little scripture study and go to bed. Both boys got to stay up late on Friday night, so I had to make sure they wouldn't be tired for church in the morning.
Today was church, but because of my illness, I wake up almost every morning with pain and discomfort. I have body aches and my abdomen is filling up again with fluid. It takes a half hour and a little breakfast before the pain medicine works and I feel half normal. It is most comfortable for me to lie on my side rather than on my back and it hurts when I roll over. Brenton stayed home with me this morning, as he slightly sprained his ankle last night.
After church, The hometeacher came over to administer the sacrament to Brenton and to me. After that, I started noticing that my shirt and pants were wet. At first I thought I had spilled some water on them. Then, when I went to change into new clothes, those clothes started getting wet, too. After a little investigation, I figured out that my abdominal fluid is leaking out of one of the holes they made on Thursday to drain it out. My mom helped me use medical tape and a washcloth to cover the spot on my lower abdomen where I am "leaking." We've already had to change it once. If this continues tomorrow, I should probably go to my doctor and find out what else to do.
This will be my week of research and prayer, as I decide whether to try more chemotherapy or stop conventional treatment and sign up for hospice care. Dr. Shehadeh recommends the hospice option, as he says he has nothing else to offer me, now that the cancer is resistant to every type of chemotherapy. I'll ask the opinion of another Dr. or two to make sure this is the case. If I quit chemotherapy, I will also take more of my supplements and lean toward natural methods.
Thanks for your thoughts and prayers.
Emilee
On Saturday morning the older boys came home and my parents came over to work on projects around the house. My project was to help make a list of projects for my parents and for others to be able to help us. I took a nap in the afternoon, then my two cousins, Julie and Chrissie and their husbands brought delicious soup and sourdough bread and mint brownies from Kneaders bakery. My parents enjoyed the visit as well and I got to hold Julie's baby Anna who is 5 months old. So cute!
Last night was Little House on the Prairie for our family entertainment. All of us like to try to guess what will happen on the episode, given the music and the characters, etc. Then we have a little scripture study and go to bed. Both boys got to stay up late on Friday night, so I had to make sure they wouldn't be tired for church in the morning.
Today was church, but because of my illness, I wake up almost every morning with pain and discomfort. I have body aches and my abdomen is filling up again with fluid. It takes a half hour and a little breakfast before the pain medicine works and I feel half normal. It is most comfortable for me to lie on my side rather than on my back and it hurts when I roll over. Brenton stayed home with me this morning, as he slightly sprained his ankle last night.
After church, The hometeacher came over to administer the sacrament to Brenton and to me. After that, I started noticing that my shirt and pants were wet. At first I thought I had spilled some water on them. Then, when I went to change into new clothes, those clothes started getting wet, too. After a little investigation, I figured out that my abdominal fluid is leaking out of one of the holes they made on Thursday to drain it out. My mom helped me use medical tape and a washcloth to cover the spot on my lower abdomen where I am "leaking." We've already had to change it once. If this continues tomorrow, I should probably go to my doctor and find out what else to do.
This will be my week of research and prayer, as I decide whether to try more chemotherapy or stop conventional treatment and sign up for hospice care. Dr. Shehadeh recommends the hospice option, as he says he has nothing else to offer me, now that the cancer is resistant to every type of chemotherapy. I'll ask the opinion of another Dr. or two to make sure this is the case. If I quit chemotherapy, I will also take more of my supplements and lean toward natural methods.
Thanks for your thoughts and prayers.
Emilee
Friday, February 20, 2009
Friday February 20th
I've been feeling sick all week, but I did have a surprising blessing yesterday. Elaine drove me to Provo to meet with Dr. Garner, the pain management specialist. After examining my bloated belly, he immediately made a call and put in motion a plan for me to go downstairs and have the excess fluid removed. I don't know why my oncologist didn't think of this, but I suppose Dr. Garner's specialty is helping people with pain and discomfort to feel better.
The nurse was first to use the ultrasound and look for a good place to put the needle. This procedure is called paracentesis so it is similar to an amniocentesis. I joked with the nurse that at least there was no baby to worry about when they started poking me. The procedure was quick and not painful at all. The radiologist confirmed a good site to poke and he put the needle in and connected it to a bottle. I filled a liter bottle in less than 10 minutes so the nurse switched to another one. They both had to press and maneuver my belly to get the maximum amount of fluid out. By the end, they had 1.6 liters and it weighed 5 pounds. Wow! Where else can you go and lose 5 pounds instantly! Actually it wasn't fat, but fluid that had come through my liver but my liver wasn't able to process because of the cancer. I still have a swollen stomach, but I can breathe much better and so it was a real blessing. Thanks for your prayers! It seems that they are having a good effect!
Emilee
The nurse was first to use the ultrasound and look for a good place to put the needle. This procedure is called paracentesis so it is similar to an amniocentesis. I joked with the nurse that at least there was no baby to worry about when they started poking me. The procedure was quick and not painful at all. The radiologist confirmed a good site to poke and he put the needle in and connected it to a bottle. I filled a liter bottle in less than 10 minutes so the nurse switched to another one. They both had to press and maneuver my belly to get the maximum amount of fluid out. By the end, they had 1.6 liters and it weighed 5 pounds. Wow! Where else can you go and lose 5 pounds instantly! Actually it wasn't fat, but fluid that had come through my liver but my liver wasn't able to process because of the cancer. I still have a swollen stomach, but I can breathe much better and so it was a real blessing. Thanks for your prayers! It seems that they are having a good effect!
Emilee
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