Hi all, it's Kari! I havent blogged in awhile... a couple of reasons... while Mimi was getting her radiation and doing really well, I took a vacation to see my mom in Florida and then when I got home, I had a major influx of business! It's my busy season (im a photographer) so while im in demand I have to run with it!
I do have some uplifting news to bring you tonight... but ill back up a bit first. I was with Nuna on Monday when we took Mimi into see the Oncologist and ill make no bones about it, she was in REALLY bad shape. I was so worried about her and didn't feel like anyone could do anything fast enough to make her feel better. I left the hospital just praying, please God... just bring her comfort and stamina while they work to try to get the right combination of whatever it is to make her feel better.
God provided. I have stayed away and helped a bit with JJ on Tues and Wed. Got up there tonight to find her sitting up in bed and looking at least 70% better than last time I saw her. She was barely responsive on Monday when I left. In talking with her tonight, she doesn't even remember much from Monday or Tuesday... guess that's just as well. But it does give you some insight to how rough it was.
I think the main things I need to bring you up to speed about are first the medical things: On Wed. morning the oncologists told her that there was an additional brain tumor and the original tumor had grown. I think that hit Mimi hard. Almost a slap in the face I imagine... here she has been so willing to give it a go and suffer some to hopefully prolong and heal and then that news... you can imagine im sure.
Well.... then on Thurs. morning they came back and said they talked with the tumor board and they re-examined the films from the MRI and in fact there was NOT a second tumor. The original tumor has grown, but not in the way they thought it had. They actually showed her the films and that brought her a much needed renewed sense of hope.
So, back to the "rash" that has caused her this new set of trouble... the explanation she is being given at this point is that it is due to the effects of the Dilantin (a anti-seizure) medication, they give this to pretty much everyone who has brain surgery from what they tell us... just to be clear, she has never had a seizure. Her diagnosis, for this rash, (per her nurse tonight) is Stephen-Johnsons Syndrome (she at least has all the signs and symptoms of SJS, so they say). It's a mild case of SJS, however, SJS is VERY serious and we are just so thankful that it did not progress further. Her skin is healing but still very painful. To give you a visual idea, from the top of her head down to her abdomen area, it's a blotchy red, blistery, patchy type of rash... very angry looking inflammation. The top of her head is super sore from the radiation still, but not as painful as her ears. One of her ears was just one big blister. Imagine a curling iron burn on your ear ladies... and multiply that. Yeah... ouch. On top of that she has Thrush (yeast infection inside of her mouth) a side effect from the radiation and the rash. The nurse explained tonight that what we see on the outside of her body is just the same as it is inside. The Thrush is healing and they are giving her Nystatin to help that... definitely helping A LOT!
Tonight, I got to spend a few hours with her. She asked me to bring my scissors up with me and cut her hair. I went to cosmetology school right out of high school so I do a tad of that on the side. Anyway... I gave her a haircut! Her hair is falling out in some spots, but it's still full towards the front. After her haircut she got into the shower. Cant use soap or anything on her skin (again imagine a burn), but we rinsed her down and got a new gown and everything on and she looked like a million bucks! Once she was all done, she came and sat out in the chair for a bit (can you see the improvement?!) Huge difference to her being barely responsive on Monday. We had a good chat about everyday stuff and about my pre-teen! Thanks Mimi for the thoughts... I love that about you... you always have such a gentle perspective from both sides to every situation. Im sure you all can relate to that about her.
I left there feeling so happy. I have so much JOY being around her and I am so happy to see her feeling so much better. Now if you will just pray for additional healing, comfort, and peace... I think those three things will get her home quickly! We all know that's where she wants to be!
Thank you everyone for your prayers and thoughts. Tina and I will continue to keep you updated as things change/progress.
Friday, July 31, 2009
Tuesday, July 28, 2009
Long overdue...
Well, this is Tina and I figured out how to update the blog myself so here goes....it's been a long month. Mimi started radiation on July 9 and had received 11 treatments. She started on Tamedor the pill form of chemotherapy on July 20. Up until Saturday July 25, she seemed to be tolerating the treatment; typical side effects like tired, weakness, some confusion some redness/tenderness on the scar area and of course her hair started thinning.
On Saturday July 25th, she awoke with some red blotches on her face, ears and upper body. Nuna took her to the ER and after a long day there, they felt it was an allergic reaction and gave her some Benadryl and Pepcid AC and told her to follow up with her doctor the following Monday. She got worse on Sunday and began to become more confused; not really sure if it was morning or evening and even more emotional. Carissa and I went over to visit that night and she thought it was Sunday morning. Her blotches had spread and she now had multiple blisters on her face, ears, neck and back and her head was quite red. Nuna planned on calling the doctor for an appointment Monday. They went in on Monday the 27th to see Dr. Trimble at the Oncologist office. They got her in the examination room right away and once the doctor examined her, they sent her over to Allegiance right away to be admitted.
At this point, she is at Allegiance for an undetermined amount of time. She is hurting from the blisters which look like really bad grease burns, and she has thrush which is a bacterial infection in her mouth. She can hardly swallow from the blisters/thrush. Her hair is falling out in clumps and her eyes are infected so they get matted shut easily. She does not want to see anyone because of how she looks. She told me before she would want everyone to remember the last time they saw her; at church, while scrapbooking, going shopping, at a family event, gardening or wherever you may have seen her and remember her that way.
I would ask for prayers for her, not only for healing of this infection but mostly for peace of mind and comfort. She loves all the cards that have been sent and is so grateful for all of her friends, church family and family who support her and Nuna during this time. She wanted everyone to know that the prayers and cards and meals and flowers and thoughts and calls and visits have all meant an awful lot. She wants everyone to know that God does know our hearts and he will take care of us no matter where we are and no matter who we are as long as we know and believe in him.
I would also ask that you pray for Chuck (Nuna) as he is faced with the loss of wife and life partner. They celebrated their 32 anniversary this year and he has been an awesome dad/grandpa for us. He is dedicated to taking care of Mimi the best he knows how. He has been with her the past two days without much of a break. He truly loves her and he wants her to be painfree and comfortable. JJ also needs prayers to get through this as best as an 8 year old can. He too has had many losses in his short life.
Thank you all for your support of our family. We are not strangers to loss and my prayer is that we will only grow stronger for one another each and every day. One day at a time is what is in my bedroom above my mirror and when I arise each morning that is what I see. It reminds me that I cannot look back on yesterday with sorrow, nor look at tomorrow with worry; I can only look at today and do the best I can to make the most of it. God bless each of you and please continue to email or snail mail any messages you want to get to Mimi/Ruthann/Mom.
On Saturday July 25th, she awoke with some red blotches on her face, ears and upper body. Nuna took her to the ER and after a long day there, they felt it was an allergic reaction and gave her some Benadryl and Pepcid AC and told her to follow up with her doctor the following Monday. She got worse on Sunday and began to become more confused; not really sure if it was morning or evening and even more emotional. Carissa and I went over to visit that night and she thought it was Sunday morning. Her blotches had spread and she now had multiple blisters on her face, ears, neck and back and her head was quite red. Nuna planned on calling the doctor for an appointment Monday. They went in on Monday the 27th to see Dr. Trimble at the Oncologist office. They got her in the examination room right away and once the doctor examined her, they sent her over to Allegiance right away to be admitted.
At this point, she is at Allegiance for an undetermined amount of time. She is hurting from the blisters which look like really bad grease burns, and she has thrush which is a bacterial infection in her mouth. She can hardly swallow from the blisters/thrush. Her hair is falling out in clumps and her eyes are infected so they get matted shut easily. She does not want to see anyone because of how she looks. She told me before she would want everyone to remember the last time they saw her; at church, while scrapbooking, going shopping, at a family event, gardening or wherever you may have seen her and remember her that way.
I would ask for prayers for her, not only for healing of this infection but mostly for peace of mind and comfort. She loves all the cards that have been sent and is so grateful for all of her friends, church family and family who support her and Nuna during this time. She wanted everyone to know that the prayers and cards and meals and flowers and thoughts and calls and visits have all meant an awful lot. She wants everyone to know that God does know our hearts and he will take care of us no matter where we are and no matter who we are as long as we know and believe in him.
I would also ask that you pray for Chuck (Nuna) as he is faced with the loss of wife and life partner. They celebrated their 32 anniversary this year and he has been an awesome dad/grandpa for us. He is dedicated to taking care of Mimi the best he knows how. He has been with her the past two days without much of a break. He truly loves her and he wants her to be painfree and comfortable. JJ also needs prayers to get through this as best as an 8 year old can. He too has had many losses in his short life.
Thank you all for your support of our family. We are not strangers to loss and my prayer is that we will only grow stronger for one another each and every day. One day at a time is what is in my bedroom above my mirror and when I arise each morning that is what I see. It reminds me that I cannot look back on yesterday with sorrow, nor look at tomorrow with worry; I can only look at today and do the best I can to make the most of it. God bless each of you and please continue to email or snail mail any messages you want to get to Mimi/Ruthann/Mom.
Wednesday, July 1, 2009
updates!
First of all thank you so much to all of you who have taken the time to stop by to visit Mimi... it means much more than I think we can express to any of you... It seems to me that Mimi really has turned a corner. By that I mean she seems to be on the up swing of things. She is staying awake and engaged in conversation and out of bed for MUCH longer periods of time and even seems to just radiate a lot more of her "known for" happiness! I couldn't be more thrilled to hear that...
I had a thought the other night about those times when we are so down and out and lose faith and hope and I was disappointed that I hadn't shared this with Mimi sooner... actually I haven't even as of yet but believe me I will! DUH Kari!
After the last scene of my life flashed before me, I looked back at the footprints in the sand. I noticed that at many times along the path of my life, especially at the very lowest and saddest times, there was only one set of footprints.
This really troubled me, so I asked the Lord about it. "Lord, you said once I decided to follow you, You'd walk with me all the way. But I noticed that during the saddest and most troublesome times of my life, there was only one set of footprints. I don't understand why, when I needed You the most, You would leave me."
The Lord replied, "My son, my precious child, I love you and I would never leave you. During your times of suffering, when you could see only one set of footprints, it was then that I carried you."
The last part speaks VOLUMES to me and Mimi's situtation and when she has felt so down over the past few weeks... Not to worry he promises... "it was then that I carried you." Wow... powerful.
Mimi went for her radiation "intake/first appointment" today and I asked Tina for her update just to be sure we got the full story and Mimi didn't forget something and Nuna didn't add some medical words that he coined (wink wink) ;-) Inside joke... Mimi's short term memory isn't fabulous and Nuna isn't the greatest with medical terms... he tends to add them! They sure are silly! Anyway... here is Tina's take on what transpired today, I just copy and pasted it from the email she sent me... figured it sounded perfect so why try to summarize it myself?!
The appointment today started at 10am and by the time we were done it was 12:45pm. It was emotionally tiring for me and mom and dad were exhausted too.
First of all the staff at the Paul Tajeda Oncology/Radiology Center at Allegiance Hospital were wonderful. We met with a nurse, a physician assistant and an MD all during that 2-3/4 time slot along with an oncology therapist who fitted her for a form/mold that has holes in it including for her eyes to wear over her head, neck and shoulders during her radiation treatments. The purpose is to keep the body in the exact position (as precise as it can be) for each of the 30 radiation treatments. It keeps the upper body from moving.
With all the information each of them gave us, it was not hard to become teary eyed knowing all this information was coming in at light speed. The staff was very comforting (especially the RN & PA-go figure) who showed extra care and compassion to mom. They continually asked us if there were questions and kept the focus on mom. After each of them examined her and did a few tests (checking her eyes and strength and feeling…), the discussion of the treatments began. They let her know first of all that she could have her treatment anywhere she chose. The doctor mentioned Sparrow because my cousin Sandy works there and I had mentioned some treatment options and questions that she had me ask about the treatment regimen. She also stated that it was up to mom whether to have the radiation treatment just take the Temodor chemotherapy pills or do nothing. Chuck said he felt good that they shared with mom she had options in her treatment. The Decadron (steroids) she was taking have been decreased to 4mg 4 times a day (instead of 8mg 4 times a day). Mom was glad because her appetite is still quite high. The doctor also mentioned that the steroid could be affecting the sleeping aide she takes (has not been as affective) and the Zololft (anxiety/depression). The Decadron will, of course, be tapered off slowly.
Dr. Soriano shared the pathology report that the GBM was in two pieces; one large section that was able to be removed but the smaller section which was left alone due to location is still there. That is what the gliodial wafer is put in for; to focus on the cancer left there.
Her treatment regimen will be Monday through Friday at a set time each day for 6 weeks. This will mean we will likely need someone willing to do maybe one day each week for six weeks. The option of a van picking her up was mentioned (which is free of charge), however, both Chuck and I agreed that she should not have come to the center for treatments alone.
Side effects are as we probably have all heard before; nausea, vomiting, tender/itchy scalp, thrush, fatigue and of course hair loss. I don’t think any of those are a worry at this point, mom just wants to get things started so she can move on with her life.
It was difficult sitting there thinking ‘can I just walk out of the movie because I don’t like it”; as if this isn’t real but it is. Mimi shared it likes sitting there hearing them talk about someone else and then realizing it’s you they are talking about treatments and hairloss and cancer.
Mom’s stitches come out on 7-7-09 (JJ has a dental appointment that day too so Chuck will take JJ and I will take Mimi, I think…) and then her first treatment is 7-9-09 at 1pm. Then her appointment with Dr. Axelson, Oncologist, will be at 2pm that same day.
So that about sums it up... I will talk with Mimi, Nuna, and Tina about who will be taking Mimi to her appts. everyday... I am thinking that maybe it will be helpful for everyone if we designate a day that each person eill take her. If you are interested in commiting to maybe a day a week please email me and let me know @ strengthformimi@yahoo.com and we will let you know if we need some help. If we don't need you, please don't be offended... I know Nuna would have her there himself everyday... that's just him... but he also won't ask for help (just really doesn't think he needs it and yes he is COMPLETELY capable), so I want to be sure we lighten his load and just make this all go as smoothly as possible! Mimi is very careful to be sure he isn't too overwhelmed... that I think is VERY important to her.
Thank you everyone! Until the next update.... ;-)
I had a thought the other night about those times when we are so down and out and lose faith and hope and I was disappointed that I hadn't shared this with Mimi sooner... actually I haven't even as of yet but believe me I will! DUH Kari!
Footprints in the Sand
Last night I had a dream. I dreamed I was walking along the beach with the Lord. Across the sky flashed scenes from my life. For each scene, I noticed two sets of footprints in the sand: one belonged to me, the other to the Lord.After the last scene of my life flashed before me, I looked back at the footprints in the sand. I noticed that at many times along the path of my life, especially at the very lowest and saddest times, there was only one set of footprints.
This really troubled me, so I asked the Lord about it. "Lord, you said once I decided to follow you, You'd walk with me all the way. But I noticed that during the saddest and most troublesome times of my life, there was only one set of footprints. I don't understand why, when I needed You the most, You would leave me."
The Lord replied, "My son, my precious child, I love you and I would never leave you. During your times of suffering, when you could see only one set of footprints, it was then that I carried you."
The last part speaks VOLUMES to me and Mimi's situtation and when she has felt so down over the past few weeks... Not to worry he promises... "it was then that I carried you." Wow... powerful.
Mimi went for her radiation "intake/first appointment" today and I asked Tina for her update just to be sure we got the full story and Mimi didn't forget something and Nuna didn't add some medical words that he coined (wink wink) ;-) Inside joke... Mimi's short term memory isn't fabulous and Nuna isn't the greatest with medical terms... he tends to add them! They sure are silly! Anyway... here is Tina's take on what transpired today, I just copy and pasted it from the email she sent me... figured it sounded perfect so why try to summarize it myself?!
The appointment today started at 10am and by the time we were done it was 12:45pm. It was emotionally tiring for me and mom and dad were exhausted too.
First of all the staff at the Paul Tajeda Oncology/Radiology Center at Allegiance Hospital were wonderful. We met with a nurse, a physician assistant and an MD all during that 2-3/4 time slot along with an oncology therapist who fitted her for a form/mold that has holes in it including for her eyes to wear over her head, neck and shoulders during her radiation treatments. The purpose is to keep the body in the exact position (as precise as it can be) for each of the 30 radiation treatments. It keeps the upper body from moving.
With all the information each of them gave us, it was not hard to become teary eyed knowing all this information was coming in at light speed. The staff was very comforting (especially the RN & PA-go figure) who showed extra care and compassion to mom. They continually asked us if there were questions and kept the focus on mom. After each of them examined her and did a few tests (checking her eyes and strength and feeling…), the discussion of the treatments began. They let her know first of all that she could have her treatment anywhere she chose. The doctor mentioned Sparrow because my cousin Sandy works there and I had mentioned some treatment options and questions that she had me ask about the treatment regimen. She also stated that it was up to mom whether to have the radiation treatment just take the Temodor chemotherapy pills or do nothing. Chuck said he felt good that they shared with mom she had options in her treatment. The Decadron (steroids) she was taking have been decreased to 4mg 4 times a day (instead of 8mg 4 times a day). Mom was glad because her appetite is still quite high. The doctor also mentioned that the steroid could be affecting the sleeping aide she takes (has not been as affective) and the Zololft (anxiety/depression). The Decadron will, of course, be tapered off slowly.
Dr. Soriano shared the pathology report that the GBM was in two pieces; one large section that was able to be removed but the smaller section which was left alone due to location is still there. That is what the gliodial wafer is put in for; to focus on the cancer left there.
Her treatment regimen will be Monday through Friday at a set time each day for 6 weeks. This will mean we will likely need someone willing to do maybe one day each week for six weeks. The option of a van picking her up was mentioned (which is free of charge), however, both Chuck and I agreed that she should not have come to the center for treatments alone.
Side effects are as we probably have all heard before; nausea, vomiting, tender/itchy scalp, thrush, fatigue and of course hair loss. I don’t think any of those are a worry at this point, mom just wants to get things started so she can move on with her life.
It was difficult sitting there thinking ‘can I just walk out of the movie because I don’t like it”; as if this isn’t real but it is. Mimi shared it likes sitting there hearing them talk about someone else and then realizing it’s you they are talking about treatments and hairloss and cancer.
Mom’s stitches come out on 7-7-09 (JJ has a dental appointment that day too so Chuck will take JJ and I will take Mimi, I think…) and then her first treatment is 7-9-09 at 1pm. Then her appointment with Dr. Axelson, Oncologist, will be at 2pm that same day.
So that about sums it up... I will talk with Mimi, Nuna, and Tina about who will be taking Mimi to her appts. everyday... I am thinking that maybe it will be helpful for everyone if we designate a day that each person eill take her. If you are interested in commiting to maybe a day a week please email me and let me know @ strengthformimi@yahoo.com and we will let you know if we need some help. If we don't need you, please don't be offended... I know Nuna would have her there himself everyday... that's just him... but he also won't ask for help (just really doesn't think he needs it and yes he is COMPLETELY capable), so I want to be sure we lighten his load and just make this all go as smoothly as possible! Mimi is very careful to be sure he isn't too overwhelmed... that I think is VERY important to her.
Thank you everyone! Until the next update.... ;-)
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