last Chemo today, Hooray!

I am happy to report that today was mom's last chemo treatment. This is a photo of mom and dad waiting to go in for her appointment.

To celebrate this momentous occasion dad purchased her some new shoes. She is so excited to not have to wear "sick shoes" anymore. (I wonder what she thinks about my sick shoes- I have running shoes, crummy ones, and even tennis shoes for going out I LOVE wearing what she considers "sick shoes").

She was like a kid in a candy store about how excited she is about having these new shoes. She says she's finally beginning to look like a woman again. Again, I am going to refer back to myself- I LOVE wearing what she considers a man's shoe. But this is the first time that she has enough balance and is walking well enough to wear these new shoes so she's very excited.

today was also the 6 month anniversary of her getting sick (well of when she was transferred to Sacramento).

poor Gigi

Gigi had her 73rd birthday on December 9th. Happy Birthday Gigi! Sorry for the belated post but it's been pretty hectic since then. So for her birthday she was super sick. Finally, on the 10th we brought her to the doctor then rushed her to emergency room where she was admitted into Kaiser in San Rafael. They found out that she had a very infected gall bladder. The plan was to put her on antibiotics then send her home so that the infection could clear up and have it removed later. In the meantime, they were getting ready to release her from the hospital when she had a heart issue that made the doctors pretty nervous- a heart rate of 179 I believe. That turned out to be an atrial fibrillation (which can lead to developing blood clots and stroke) so she will be put on medications to help this issue. Anyway, back to the gall bladder. She was just not getting any better so on Saturday, the 13th (I believe) they decided to do emergency surgery. The surgery did not go as smoothly as planned because the gall bladder was so infected that it burst which lead to a much more complicated and evasive surgery where she lost quite a bit of blood and consequently had to get 2 pints transfused straight into her jugular. Although she was still in quite a bit of pain she was discharged on Wednesday, the 17th around 11 am. We ended up back in the ER that evening and again she was admitted for what they thought to be an obstruction. She is still currently in the hospital and will hopefully get out before Christmas.

yummy Pomegranates

If you know me very well you know that I LOVE pomegranates. When I was a kid a family around the corner had a tree in their front yard and I loved to go and beg/borrow/and steal their pomegranates. I couldn't understand why they would just let all of those yummy pomegranates go to waste! So in high school my dad planted me a pomegranate tree, however, the fruit has been less than desirable until this year. Take a look at this yummy goodness. I went a little crazy on the photographs but let me tell you these have been amazing. I love it! Sometimes a good thing is definately worth waiting for...

confessions and questions

Although I am behind on reading my friends blogs I LOVE reading them, however, I NEVER comment on them. I don't know why- I am the same with MySpace and Facebook. I just don't really write, I am trying to do better but I don't. I love reading all of the comments on my blog, reading notes and e-mails but I am awful at writing people back. How rude is that?! Its the same as thank you notes, I am awful at sending them. Truthfully, it is very rare that I don't write one but I NEVER send them. So that is my confession for the day. I am terrible at keeping in touch and selfishly love reading about you even though I never say so. I am actually addicted to reading about everyone else. It's fun to see how creative all of my friends are and I am so jealous at what good parents and adults you all have become. You are amazing, I just wanted to let you know.
Oh, and my question is this- how do you follow someones blog? I am guessing that if you are a follower it will automatically tell you when there is a new post or something but I just don't know how to do it. It's funny that I am supposed to be a "techie" but I don't know how to do any of this stuff.
One last note about the things I am jealous of and also very amazed by- this follows my comment about the creativity of my friends. Other than the amazing home preschools, the cute and creative blogs and attempt at being just really great people- I love that you are following your passions and starting blogs and websites about your interests. Photography, online scrapbooking, crafts, art, digital works of art, invitations- seriously I am so impressed. A lot of you are great homemakers and are now becoming entrepreneurs. I am really in awe of you.

our Thanksgiving Holiday

We went to Amie's house in Southern California for Thanksgiving and had a blast. We spent nearly every day at the beach, Kobe LOVES the ocean. He spent the whole time playing in the water.

Blake on the other hand spent his time clutching onto Gram. Finally after the 3rd day he went in the sand, but that was far enough!

We went to the marine mammal center to learn about sea lions who had been rescued.

Blake ran a muck at Amie's house and got into everything.

We played at the park and had tons of great fun. Thanks Amie for having us, we were all so sad to come back especially when it took us over 11 hours to get home due to holiday traffic- FUN!

Fun with Uncle Eric

"See No Evil, Hear No Evil!"

Eric and war face

I want to be just like Eric

Eric's Sidekick

Buddies

sick, sick, sick

Today mom suffered from the most difficult chemo treatment yet. She felt the effects so much faster this time and so far it's been more intense and has lasted longer. Her nausea is awful and she has body aches all over. Luckily she was able to get a little bit of extra sleep- my thought is its best to just try and sleep through when you feel like crap! Hopefully she will be back to normal tomorrow.

Chemo Day...

So today is chemo day, we are just getting ready to head out the door for another round of cytoxan. So this is round 5 of 6- we will be glad to have this portion of the recovery over! So she got up early and took her first bath (nothing like soaking in the tub to calm you when you are nervous), did her make-up and now we are heading out the door. Wish us luck!

It seems every other time is difficult so hopefully this round will be easier...

Happy Labor Day

So 29 years ago today my mom went through excruciating pain in order to get me into this world. So Happy Labor Day mom, I love you more than corn pops! You really are so good to me and my boys. I really love you so much. Thank you for being my very best mom.

Happy Birthday Kobe!

Kobe is 6 today...

6 things I love about Kobe:

1. He makes me laugh harder than anyone I've ever met
2. He is way too smart for his own good
3. If anyone could talk their way out of a ticket, it would be Kobe
4. He is so sweet that all the girls at school love him and already are fighting over him
5. Even when his brother is tackling him to the ground he still smiles and doesn't get mad
6. He party's like a rock star and has ALL the right moves

I love you Kobe Michael, you are my pride and joy. Not only are you handsome and intelligent but you are the kindest person and you have the biggest heart of anyone I have ever met. You bring laughter and love into our lives and we would never be the same without you!

Great

Mom is doing really great. Not much to report on but she is really doing very well. She still has therapy three days per week and then appointments typically on the other two. We are always very excited when we get a day off. She is walking on her own now, still a tad wobbly but by herself no more walkers or anything. Next week she is being reevaluated by her therapists so hopefully I will have more to post.

Slacking...

October 17, 2008
Neurology Dr. Jonathan Artz


I took mom to see Dr. Artz for the first time on the 17th. He spent the first 20 minutes of our appointment (yes it took that long) reading her chart and taking notes. Every few minutes he would say "Wow, did this really happen?" Wait, (to himself while reading) did she have an aneurysm or did they coil it off before it happened? then he'd read a few more seconds and say "both!" then he looked at us and said, more than once I might add, "it's extraordinary she's alive!" It was really interesting talking with him. He like all of the other doctors and people who hear about her case are amazed by her progress.


October 19, 2008
She's been out of the hospital for one month today! Oh, and it was three months ago when she was admitted into Kaiser Sacramento and diagnosed with CNS Vasculitis.


October 21, 2008
This marks three months from "dooms day!" It was July 19, 2008 which started her 24 hours of mass destruction. This is when the majority of her brain damage occurred. It all started on this day around 4 pm when she suffered her first seizure.


October 22, 2008
Kaiser Santa Rosa


Mom received her fourth round of Cytoxan. This round is proving to be one of her most difficult yet. She is really feeling nauseous. She is doing well but it's just not feeling too hot. Luckily for her she's basically been sleeping a lot today. Hopefully she'll be back to feeling normal by tomorrow. Interesting information: I found a little book about the nurse who was administering the chemotherapy to my mom. She was a cancer survivor, it was very interesting reading about her journey. There is a woman who is a cancer survivor who started the Foundation for Stories of Cancer Heroes (http://cancerheroes.org/) and she started writing the story of her own survival story. Now, this foundation will help survivors or the families of those who have lost their lives from cancer. The books are printed by Heritage Makers and are very touching and beautiful. It makes me realize even more that every person has a story and it is so rewarding to be a part of so many lives. I realize even more that anything can happen to any of us- we always think "bad things (like cancer, vasculitis, disease) happen to OTHER people, it would never happen to me".
I would like to make a book for my mom at some point, I do think however that I will have some time because as I look at her story for the last three months I realize that it changes daily so I would like to maybe do it for her one year anniversary. I hope you are all well. Please let us know if you need anything.

progress, progress, progress

So Mom is very excited to report that she no longer has to wear her AFO- (Ankle-Foot Orthosis). Often times with stroke and brain injury there is injury to nerves and muscles that are known as dorsiflexor muscles and cause drop foot. It is very typical for people who have drop foot to have to wear an AFO for the rest of their lives and those dorsiflexor muscles do not come back. However, with mom she has only had her AFO for about a month and she's already worked the muscles back so much that she can now lift her toes and it does not impede her walking. As of yesterday she no longer has to wear this very uncomfortable brace. We are very happy for her.
Also, we saw her rheumatologist today and he was very pleased as well with her progress. She is walking very well and her memory is improving daily. Here is an example of her memory: The speech therapist does a test called auditory memory scan (or something like that) where they give her three random items to remember, for example rose, hamburger, hat. Two weeks ago she could not remember after 30 seconds that her therapist even told her to remember anything, then last week she could remember for up to a minute with visual cueing (for example to picture a hamburger wearing a hat and holding a rose, then to give her clues like it's something you eat, something you wear and a type of flower). This week however she was remembering for up to two minutes with no cueing. This has been her biggest trial (well after she got well I mean) so far but she is really doing amazing. It is really neat to watch this progress daily.

steps

So the amazing feat of the week, other than just moms improvement each day, is that she cruised up like 20 stairs. Previously she'd get exhaused with only five steps and she was able to walk, very quickly I might add, all the way up and then down about 20 steps. It was truly amazing and she is improving each day. She is walking better now and although her balance still has issues she is doing a lot better.

last on Chemo for awhile

Chemo Progress-

Wednesday afternoon- Chemo administered. She was tired and nauseous that evening and went to bed early.

Thursday- very nauseas and tired all day. Felt pretty awful for the majority of the day and had no appetite.

Friday- actually felt pretty good but still a little worn down and tired quickly. Energy level was pretty low and still didn't have an appetite. She is very excited to say that she is getting so strong that she doesn't have to wear her AFO (brace) around the house and is determined to have it off completely this week.

Saturday- all symptoms are completely gone her appetite is back and she has no more nausea. She was stir crazy after spending so many days inside but she's not supposed to be around too many people so no shopping so we went for a drive and got a Chai Latte (her new favorite).

Sunday- Mario and I had our garage sale this weekend and so Amie took mom went for a walk (well she rode) and then they sat and criticized that my prices were too high :) So she is getting her feistiness back and is feeling much better.

She is walking a ton more now and is trying to do a lot more on her own although her stinking protective family isn't letting her do too much on her own which is frustrating for her but we still need to work on balance and her dizziness first.

Thank you for all of the cards and flowers. I have to tell you that one awesome thing about short term memory loss is that not only is she excited when the mail comes and she gets a card but for the rest of the day (and the passing days sometimes) when the card is sitting on the counter she goes rummaging through the mail and gets excited all over again so see that she got a card. She really likes hearing what everyone is doing. We've been pretty busy and haven't had time to print all of her e-mail to read so if you want add a letter and let her know what's new with you- she'd love it. If you do a letter try to make it a larger font and double space it. She's reading better but small fonts all together gets a little difficult.

We do appreciate you all. Please let us know if there is anything that you need. I know that everyone is going through life’s trials and we'd like to help in any way that we can.

not feeling too hot

Mom is pretty weak and nauseous today. She is sticking pretty close to the bed today but it doing pretty well.

chemo day

So mom started Chemo today and was very nervous. She was so afraid to be getting chemo and didn't understand why she needed it. I did find out some more information about it though.
Cyclophosphamide is used to treat various types of cancer. It is a chemotherapy drug that works by slowing or stopping cell growth. Also known as Cytoxan this drug is used in many types of cancer, kidney disease, lupus, rheumatoid arthritis, leukemia as well as vasculitis. There are quite a few other conditions that it does treat.

forward progress

Mom is continuing to get stronger every day and is starting to walk better as time passes. She still needs assistance but mostly for balance and occasionally taking too short of a step. She gets exhausted very easy and we are having an interesting time trying to figure out her limits. She is having a great time doing things that used to be so basic such as helping with dinner, playing with the boys and playing games.
Physical Therapy has been coming to the house and are very pleased with how well she is doing. Not that it is any surprise, everyone is really happy with how well she is recovering.
We will be starting another round of Chemo tomorrow, I hope it goes well. We are very nervous but hoping for the best!
I will try to come up with some more interesting reads for everyone. Take care I hope all is well!

home sweet home

WooHoo, we got mom home! Thanks for all of the notes, e-mails, flowers and just for everything really. Mom was very excited to get home! Her first big adventure was that she had her first manicure and pedicure in quite some time- they look great by the way.
A New Challenge:

As we were sitting in the lunch room the other day I saw this elderly couple sitting together sweetly reading a stack, a big stack, of cards and I thought wow, that is really cool. In this day and age it seems like we do everything over the computer. The second part of that is yesterday when mom came home we were sitting in the kitchen and I was browsing mail. She just kept asking what came in the mail and was there anything interesting. She was so excited that she did get a delivery of flowers- thanks so much for that!

So I was thinking that I have read mom pages and pages of notes and e-mails and a few cards but thought how fun it would be to inundate her with cards. So if you have a bit of time pop a note or a card in the mail and send them to the house: 1325 Marian Way, Petaluma, CA 94954

thrive

NO MORE IN-PATIENT REHAB!

GRADUATION SHIRT...!

and on to the next adventure.... Mom is really Thriving!

three days left

So today was really good. Mom was in great spirits here and is really looking forward to her last days here at Kaiser Rehabilitation in Vallejo. Actually, we are hoping this will be her last hospital stay for quite some time! She walked a ton today with a walker and is so much stronger than even yesterday. It's amazing to be able to see day to day progress.

weekend fun

Okay, so mom's day out started at noon on Friday when she left the hospital. She then came to watch Kobe play soccer and score 3 goals. Working out the kinks of getting her into the house was interesting but actually went very well. She is super exhausted from all the wheeling, walking and transfers. After a yummy Jack in the Box meal she is finally taking a break and relaxing in her own bed.
We mostly spent the weekend relaxing and playing the the boys. We tried to do as little as possible and just enjoy being HOME! Today was very sad because mom was worried about having to come back to the hospital. When we drove away she was so bummed but now that we are here she is relaxing and realizing the she is exhausted. So all in all it was a really fun weekend, we have a few things to work on at the house to make everything easier but everything went really smooth.
Thanks for everything, The count down is on until she goes home. 4 days (we leave early Friday so it doesn't count).

weekend

Wow, I am really excited to write that this weekend they are allowing mom to go home for one day. She will have classes on Saturday and then will head home, we have to get her back on Sunday evening. This is a very important step in her road to recovery. This will not only help her to get reorientated with home but will also help us as a family figure out what barriers and obstacles we encounter so we can come back with a whole new set of questions. We are going to learn what works and what doesn't and try to figure out what we need to do for her to come home.
So, if you were planning on visiting her this weekend she won't be here. As this trip home is going to be so short and she is going to be so exhausted we'll have to postpone visitors again. Thanks for everything, she is going to be home soon and hopefully life will start being "normal" soon. We'll keep you posted as to how everything goes.
We appreciate you all. Take care and we'll talk to you soon.

slacking

Sorry, I have been slacking on my blog posting duties. I am at rehab with mom learning as much as possible so I can help her when she comes home. She is actually going to be home soon. Our projected discharge date is the 19th of September- we can hardly believe it! She is so excited to be coming home. We are busy with plans for getting the house ready and installing a ramp and some railing so it will be safer for her there. She is walking really well with a walker and we are planning on her being pretty mobile that way. For outings and excessive walking we will still use the wheelchair but she is not going to be wheelchair bound. Some great news is that she is meeting all of her goals and is actually exceeding them. She is doing so much better than the doctors ever thought possible in this short amount of time (although we knew better than that!). The great part is that her progress from day to day is very noticeable to everyone (except her but we are hardest on ourselves aren't we).
We really want to thank you for everything. The cards, flowers, donations, love and support have really been such a wonderful blessing and we are so grateful for each one of you! Thank you from the bottom of our hearts.
Now, I have a job for you. Please e-mail me at christienoelle@yahoo.com with your name so I can make a list of everyone who is reading this blog. My mom asks daily and I really don't want to miss anyone. So if you e-mail me with BLOG VISITOR in the subject line so it doesn't go into my junk folder. I would love to make this list for mom so I can read it and put it in her book.
Thanks again, we will write more soon.
Christie

rehab

We have just about completed our first week of mom's rehab. So far the training has been very good for mom. Her short-term memory and shaky eyes are certainly not getting better but most everything else is. She is getting so much stronger every day and is starting to walk with a walker during one of her classes. She is really exhausted every day after completing all of her workouts and it is all really hard work but she is improving every day. She is so excited to come home and we are only anticipating her hospital stay to be for two more weeks. That does not mean that her treatment process will be over but it would mean that she is more ready to come home and continue the process from home and frequent trips to outpatient rehab.
We have had a couple of mishaps at this hospital and are really pissed off but over all her care there has been very nice. Yesterday a nurse pulled out her feeding tube accidentally and then today a stupid nurse left her in the bathroom in her wheelchair (I was right outside the door but didn't know the nurse left) and all of a sudden poor mom came flying out the door. She had fallen out of her wheelchair. She hit her face and head, it was really awful. We were both crying and I felt terrible!!!! They have taken some more measures to make sure this doesn't happen again but it was really a stupid thing for this lady to have done. Today was basically just one crappy event after another. You know those days that you should just not even get out of bed type of days. She is fine but also is very timid and nervous again- which I think is definitely reasonable!
On the other hand though she is continually improving and doing very well. I will give more details later.

transport

Well I am glad to finally post that mom is IN Vallejo Rehabilitation. She was transferred early this morning (Monday, September 1). Today she didn't get to do too much but tomorrow will be her first big day. I toured the facility a little today and it seems like its going to be a great place for her. This facility has some great ratings and outcomes from what I have heard.

More to come later, I am very tired after a long weekend of moving and a long day of dealing with Blake at the hospital- that is a chore trying to keep a toddler quiet in a hospital! This week I am hoping to spend with mom so I hope to have a lot of new and exciting information to post.

Oh, I am looking for a new mostly part time (2 to 3 days/week) sitter with some occasional extra days while I am at the hospital, if there are any applicants please send me an e-mail with your days/times available, possible start date and what you charge per day. It will just be for Blake as I will most likely send Kobe to the YMCA.

one step up, another step back

I was hoping to be posting really great news about seeing mom in Vallejo tonight, however, I am not. Poor mom had a minor setback today and is going to have to stay in Sacramento for a few more days. She is super bummed about it and so are we but they just need to make sure everything is okay before they send her out the doors.
I guess what happened is this morning she was doing just fine. She was talking to my dad and everything was good. I am not exactly sure at this point what happened but maybe she took a nap and when she woke she was toying with some tape. When dad asked her about it she said "Who are you?" or something like that and he then asked her if she knew who she was; again she didn't. The nurses were called in who immediately got a hold of the doctors. The ran a bunch of tests including a new MRI to see if she had another episode (seizure, low blood sugar, stroke anything). I don't know if they don't know the results or just haven't really said anything but so far it looks like everything is okay. She stayed in this state for about an hour and a half and then just as quickly as it came on she was back to normal.
I spoke with her a few times tonight and although she is sad she loved talking to Kobe and hearing him sing to her. So basically, there was something that hopefully is nothing that I really don't know too much about :(
Thanks again for all of your well wishes. We love hearing from you and appreciate you all. I will post more as I hear...

it's extraordinary, really!

Sorry about the lack of postings, I guess sometimes life catches up...

Anyway, superb news...

So, yes, she was transferred to E- Wing which is on the first floor at the hospital in Sacramento. They got her standing again and she's getting so much stronger everyday. Also, she is able to scoot herself off of the bed and into the chair- seriously amazing. Previous to this they would lift her into and out of the chair and now she's doing it on her own.

Are you ready for more good news?

She is being transferred to Vallejo Rehabilitation most likely tomorrow. This is incredible because it means it's nearing the end of her hospitalization. They are anticipating her being there for 4 to 6 weeks. This is a HUGE step for my mom. It is here where she will learn how to do everything again and really work those muscles. She will have intense physical therapy for three hours per day.

The best news about all of this is that mom is actually proud of herself for what she has accomplished. She is very excited about this next step and is super excited to start working hard and getting herself better. She asked me to thank everybody for your support and loves hearing everyone who is writing and asking about her on a daily basis. She sometimes asks me to read her the e-mails and notes, or will just ask "So, who's contacted me today?" This is really nice and she remembers everyone so far. Even those notes from her old classmates who say "I don't know if you'll remember me or not..." and she says of course I remember.

Fantastic news!

Note: I know everyone is thinking, woohoo we can come and visit and I believe that is the case but we need to be careful as to not overwhelm her. So once I find out the visitation schedule I will let you know. Also, I will let you know when she actually is transferred. It seems that we are always told oh it'll be today but like everything else even to get a room ready for her downstairs in Sacramento took like 4 days. Yippee, even more progress!!!!

super duper...

So I got word today from Gigi that physical therapy came today and mom was able to stand up (with help of course) for about a minute. They have tried this a few times before and she just couldn't so this is really super. Go Mom!!! We are all so proud of you.

Also, the doctor said she is ready for rehab. I think they will be transferring her very soon. She should also be transferred downstairs maybe even tonight, I will let you know. This is all going very fast! I am super excited...

chemo is aweful...

I am finally getting a bit of a preview of what people go through who go through chemo and it is very sad. My heart goes out to each of you. I understand that the chemo my mom gets is not even as bad as what cancer patients endure and that makes me ache for cancer victims even more. I have explained to mom why she is getting the chemo and so she continues to fight but she is very sad and not feeling too good. It is incredible to me that something so toxic can do wonders for those who endure it.
On the other hand though, this evening her spirits were up a bit and she is really wanting to do as much physical therapy as possible so she can get to rehab and get home. Even with all of the pain and sadness though she is continually an amazement to us all including the doctors and nurses. Oh and sadness is very typical of neuro patients I am told.

mistake

Some information, updates and corrections:

• First, today has been one month from mom's last bleed so that is awesome
• Chemo was NOT started on Monday, it was actually started yesterday 8/22
• She still has not been transferred out of the Critical Care Unit as anticipated
• Contrary to what the doctors thought it seems that all the main parts of the brain that were affected are not causing mom too many problems- mainly speech, vision, hearing and memory
• We found out that rehabilitation will be in Vallejo (still no transfer date yet)
• Rehab will last 4 to 6 weeks

So how is mom doing?

• She is very sad and in a lot of physical and emotional pain
• She is trying to be brave and is still fighting very hard
• She is communicating and her voice sounds just the same :)
• She is getting stronger every day
• She still has a long bumpy road a head of her but this past week has been AMAZING
• She is a miracle in the works, how fortunate we are to be a part of her life!

Gigi and dad have been holding down the fort since Amie and I have to be to work during the day. What troopers, I appreciate them so much. Thank you to everyone for everything- we are so blessed to have you in our lives.

A side note: Kobe started first grade- I just can't believe how BIG he is getting. He sure loves his Gram and is constantly worried about her, like the rest of us. He has been able to talk to her a few times and I think that helps both of them to stay strong. They truly are an anchor to one another.

Kobe loves this picture- it is when Gram first saw his haircut from shaggy to spikes and is so surprised at how much older he looked.

a big day

Sorry, it seems like I just can't get off the computer today but I promised I would keep everyone updated.

She got her tracheotomy out today!

it's been a month

I know it is a necessary step but I am sad to report that today they will begin round two of chemo. She will get this treatment once a month for six months.
Remember though "that for some forms of vasculitis that do not respond to steroids (prednisone) alone, cyclophosphamide (Cytoxan) may be a life–saving medicine.
More good news is to realize that today is the one month anniversary of when she was admitted to Sacramento Kaiser. It is quite a miracle that we have come this far and that her brain is functioning so much (well more than what "they" thought). Mom is strong, she'll keep showing them. That is just like her, when someone says its impossible or tells her its not going to happen that is when she steps up to the plate and shows them just how wrong they can be! Go mom!!!

a note for Christine who's dad is fighting a similar disease (vasculitis that is attacking the organs rather than the brain):
For example, before the introduction of cyclophosphamide in the treatment of Wegener’s granulomatosis in the 1970s, Wegener’s was almost invariably a fatal illness, even with high doses of steroids. Now, with the combination of cyclophosphamide and prednisone, more than 90% of Wegener’s patients respond to treatment, and 75% enter a disease remission. so KEEP FIGHTING!!!!
http://vasculitis.med.jhu.edu/treatments/cytoxan.html

TOO SOON

Sorry, I posted too soon before I got an update....

Gigi is with mom today and she just called to tell me some really great news. They replaced mom's trache today and she spoke. When I was there Friday, the speech therapist checked her and her vocal chords were not strong enough to make more than just a few small sounds. Today, they changed a part as she was able to verbalize. Her first words were "Mom, I am in so much pain!" Very sad but also amazing. One main part of the damage in her brain had to do with speech so this is truly a miracle. So you see, we are being blessed with many miracles. It is very sad to see mom in this much pain and to watch her so helpless but we are also very blessed. Thank you all for your support! Keep praying, our united prayers are being heard.

fund info

First, Thank you to all of you who have donated to the Tammy Larson Fund. The support has been overwhelming- Thank you from the bottom of our hearts.

Also, it has been brought to my attention that when you go into a Wells Fargo branch that they are having a hard time finding her account. I guess it is considered a business account and that is why they can't find it. So, if you go into a branch let them know that the account is a business account by the name of the Tammy Larson Fund.

I am sorry that I haven't posted too much on mom's condition recently. It is difficult to put into words what is happening now. Physically, mom is doing very well except that she is becoming more aware of her constant pain. Emotionally she is very aware of parts of her body that are not working well and is continually frustrated. Keep praying that we can all get past this portion of her condition.

I hope this helps. Thanks again! We appreciate all of your kindness, thoughts and prayers on our behalf.

I will keep you updated as to when she can have visitors, until then I will try to be better at posting even when I don't have too much info.

How is she doing now?

I have been at the hospital with mom for the last few days and it has really been an experience. She is a tough girl and she has truly been through the ringer. I have liked being able to be with her, and she smiles now which warms my heart. Okay, for the details:
Neurologically speaking she is doing well. We still do not know the damage although her recent CT scan shows that the top of her brain is healing nicely however, there is still a lot of residual damage to the brain stem. Still, we won’t know for a very long time the extent of the damage on her body physically. We learn more every day but for now we are still waiting and slowly working those muscles in her body to compensate.
Physically, she is getting stronger every day. She has a lot of movement from her left arm and leg and is gaining more control with those movements. Her right hand is definitely getting stronger and she can squeeze her hand very tightly now and lift her arm. She is also coughing which is a good sign. The more she coughs the faster she can clear her lungs and possibly start weaning off the trache. The other part of weaning her off is if she can swallow and her neck muscles are definitely getting there. She has a little weakness on the right side of her face (not noticeably when you look at her) which includes part of her tongue which also adds to the difficulty of swallowing (like when you get numbed at the dentist). However, they are testing her swallowing little by little and once she shows them that she’s stronger she’ll be able to get weaned off the trache by making the opening smaller and smaller until they can take it out and close it.
Emotionally, she is becoming more alert each day and this causes quite a bit of frustration. She can feel her pain more because she is more aware of it. Also, she is becoming more aware of the things that are happening to her which is a very scary process. She doesn’t understand everything yet which is also very difficult in knowing that you can’t move and do things right but can’t comprehend why it’s all happening. We continually tell her that she’s had bleeding and that she’s in the hospital and she is definitely aware of that but they want to just gently remind her each day so that she can slowly learn more about her condition. I guess we are all in that same position! They are not trying to fool her about the difficulty and the long process and that also makes it hard emotionally. All in all she is holding up okay. There have been many tears and worries but also plenty of patience and smiling. Waking up and realizing that this is not just an awful nightmare is also very difficult for her. Basically, she is coping as well as can be expected under the circumstances.
As far as surgeries go, she did get our Neuro Drain out so now her head and face are completely clear of any “stuff”. It’s nice being able to see her face! There are no other surgeries in the works now.Chemo starts again next week, let’s hope and pray that the side effects will be tolerable and not give her too much trouble.

new baby...

Congratulations my friends!

a few things...

Mom is having a bit of a hard day today, she's really alert but that means she's in a lot more pain.

Quite a few people have been asking about visiting. While she is in the critical care unit the doctors said we shouldn't have friends visit. However, the good news (well it's good meaning she's doing better- but the care in the CCU is phenomenal!!!) is that there is a chance she'll be moved out of Critical Care in the next two weeks.

On a side note Caleb and Alison are having their baby today! She's in the hospital now working hard to deliver their baby girl. Congrats Unkie K, I am so excited!

Finally, I opened the blog on a different computer, Please let me know if yours is showing up funny. The side bar showed up at the bottom on this one. Interesting!

amazing...

Kobe, Blake and I headed to the hospital today to see mom and Gigi. When I came in they had mom sitting (it's a chair that turns into a bed that they can strap her into but it gets her sitting upright) anyway, it was so good to see her sitting. So the blinds to her window were open quite a bit so Kobe could see her- this was the first time. I was pretty worried about letting him see her because he's only 5 and I didn't want him to be too scared or anything. It was an okay visit, she just had some meds because she's in quite a bit of pain from the trache so she was a little out of it.

Physical Therapy came and worked with her today for the first time which is really great. She had to be stable in order for them to do this so that is a good sign in and of itself. She has lost A LOT of muscle but surprisingly still has quite a bit. Still not too much movement from that right leg but other than that she was doing pretty good. She was exhausted after therapy so they put her back to bed.

They took the ventilator out today since she was basically breathing on her own, they are going to monitor her closely to see how she does. So far today she's doing really great without it. They do have some moist air and a little oxygen just to help her lungs but she's breathing on her own now.

Later in the afternoon after we returned from lunch they put her in the chair again. Gigi and Kobe bought her some new lotion and cherry flavored carmex (Kobe said she would like it better if it was cherry). So as I was lathering her up and talking to her she looked at me and mouthed "I love you". I was surprised because this was the first time I've seen her without the breathing tube in her mouth so I hadn't see her do it. On our way out I let Blake come in to say goodbye and she moved her head closer to him so I brought him to her and she kissed him and told him that she loved him. He just kept looking at her and so she closed her eyes, turned her head and then came back and mouthed "boo!" I could tell that she was really trying to play with him and trying to help him not be so nervous of all the tubes so I asked him to show her what a bear says. Finally, he turned toward her and said "ROAR" and she smiled- not just grinned like before she actually smiled! So I then asked him to to show her his elephant (which is her favorite thing that he does) and she smiled even bigger. It was really great to see!

After I told Kobe about it and he wanted to come in and see her and talk to her some more. So Gigi and Kobe came in and I helped Kobe to give Gram a kiss and she mouthed to him "I love you baby". He began talking to her and telling her that he was going to be in the first grade next week and she shook her head and said "No Way". Kobe can't really read lips so I just told him everything that she was saying and I said she said No way, she just can't believe how big you are getting and she shook her head to let him know that is exactly what she was saying. So then he told her that he can swim without floaties on and she mouthed "Wow" and smiled at him. When they were walking out the door and little Blakey was waving to her she waved back with her right hand.

This is all truly amazing and a huge miracle. It was really so great to see all of this. My dad and Gigi have seen bits and pieces of this but it was the first time that me and the boys got to see it too. Kobe was pretty upset when we left but even though I am worried about him I really think it was good for both of them to see one another. They truly do adore each other.

Sorry for all the run-ons and bad typing I just wanted to quickly update about this great day for all of us.

finally I have news

Okay, Gigi just called to let me know that mom finally made it out of surgery. They were supposed to do it yesterday but it kept getting postponed so she just got wheeled up to her room. Gigi has not yet been able to see her but she peeked in and mom looks good. It's always good news to see her coming back into the room.

Will add more later. I want to thank everyone for their thoughts and prayers. Especially I want to thank our heavenly father for taking such good care of mom. Each passing day that she is progressing is truly a miracle!

some good news

I had a few minutes and figured I'd pass along some good news, I know we can all use it!

I am back at work today and was feeling especially bummed until I got a good call. So this morning mom is very alert. She waved to the nurse, is lifting her head, and as had her eyes wide open for quite a few hours.

If all goes well with the scheduling they are going to do her tracheotomy and g-tube procedure this afternoon.

I will post again when I find out she made it out safe and sound.

What’s happening now?

On, Friday August 1, 2008, I received my last angiogram application of Verapamil. This was stopped because my arteries are getting stronger and having less spasms, as well as, they can only do this for so many days in order to not cause more damage and they have done all that they can do for those particular arteries. So, what now you may ask?
Currently, the doctors are working to remove the neuro-drain from her head. In order to do this they need to raise the pressures in her brain to make sure that she can tolerate the required amount of pressure (20 ICP). If she can tolerate the pressure then they are ready to remove the drain, if not, then they will change the drain to a more permanent system where the body would absorb the cerebrospinal fluid elsewhere.
Also, she is still on the ventilator but breathing on her own. However, they have decided to do a tracheotomy because they are worried that she is going to have problems with mucus and other secretions getting into the windpipe because of difficulty swallowing. She is not awake and conscience enough to cough anything up and swallow correctly. Also, this gives them access if she does end up needing air at any time as well as allows them to still suction her out. Installing the tube will also offer her more comfort (currently it goes through her mouth and she hates it) and the ability to speak at some point. When they do the tracheotomy she will not be able to speak for 10 days until the lining around the incision builds up, otherwise air can come inside and create more problems.
Lastly, they are going to do a gastrostomy in order to install a tube directly into her stomach for feeding. This will eliminate the tube that currently goes through her nose. In time they will test her to see how she can swallow but for now they are trying to save up her extra energy for her to get herself better rather than wasting energy on eating.
She is very tired right now and is spending a lot of time sleeping. There are really no other changes. The doctor says to remember that this road is going to be full of peaks and valleys and that her healing is going to be very slow and will take time. However, she is still doing a little better each day. Thank you for continually keeping her in your thoughts and prayers. We really appreciate all of you!

More to come….

some questions answered

What are they doing to help her in addition to the daily angiograms?

This is a photo on mom’s IV pole not even at its fullest. There are so many intravenous medications that she is given on a daily basis. In addition to regular IV fluids she is getting Magnesium Sulfate to open up collateral circulation and relieve ischaemia (a restriction in blood supply), mannitol, many different antibiotics including Vibramycin, quite a few different vitamins (iron, b12) and on this pole you can see that she is also getting her blood transfusion. This is also where they hang her nourishment for her feeding tube. There are many other things that I just don’t know or understand but you can see that she is getting a multitude of things to try to help her get better.
What is the angiogram steroid?
Okay so I have more information on the daily treatments that mom is getting. The type of spasm that she is having in her arteries is called vasospasm. The treatment that she is getting is an infusion for vasospasm called intra-arterial verapamil. Verapamil is the name of the medicine that is being administered directly into the artery through the angiogram. I know that I explained this but I wanted to give the drug information.

Is the Verapamil working?
Her angiogram is showing that she is still demonstrating spasm but that some parts are slowing and getting stronger. Overall she is not getting worse and hasn’t exhibited any new bleeds. This is good news!

How much is and will she progress?
Each day she is still progressing and getting stronger, however, when you look day to day her progress is slow. That is what they keep telling us is that this is a long road to recovery. Treatment for this condition is long-term and may have significant risks. Many months may need to pass before one can tell what degree of recovery will ultimately occur. We are just relieved to see minimal progress each day, however small- progress is progress in our book.

What is Vasculitis?
Vasculitis (meaning inflammation of the blood vessels) confined to the brain, the spinal cord and its covering is referred to as central nervous system vasculitis. Central nervous system (CNS) vasculitis is a rare disorder. Central nervous system vasculitis can be classified as primary (primary angiitis of the central nervous system or PACNS) when there is no other disease or condition present that may cause blood vessels to be damaged.

Why steroids?
This disease is often treated with a short course of glucocorticoids as well as other drugs such as calcium channel blockers that relax “tight” blood vessels. Such a powerful combination of drugs is used because without them this disease is nearly always fatal. With successful therapy, patients may have partial or complete recovery. Unfortunately, the brain is an organ that has a very limited potential to regenerate itself. Thus, if a patient has experienced a massive stroke, he or she will continue to suffer the deficit of that stroke even if the vasculitis is successfully treated.

What is the neuro drain for?

A ventriculostomy is a tool to measure the pressure in your head called intracranial pressure (ICP). It is important that this ICP was inserted because it helps not only to drain the extra cerebrospinal fluid and excess blood but also measures the pressure in her brain. Keeping the excess fluid out reduces the pressure. Three days a week they are testing the cerebrospinal fluid (CSF) for infection (I am sure they are testing it for other things as well).

http://www.upstate.edu/uhpated/pdf/ventriculostomy.pdf

good thoughts

Dr. Akins (mom’s doctor) came by today (Wednesday, July 30, 2008), to give us an update on mom’s condition. So, here it goes. From a neurological standpoint she is the same to slightly better than yesterday. She is doing some communication with her eyes and is moving her left arm. At this point we still do not know the outcome but he did say that anything is possible. However, he said that if there were no hope that they would not continue working so hard to save her.

They are going to continue with the angiogram steroid treatments daily. Yesterday, (the 29th of July) they applied treatment to all three arties and are planning to do the same today. Dr. Akins did say that at some point the blood and vessels will calm down and stop spaziming, until then they will continue this treatment. We were told that the average patient has this spaziming anywhere from 4 to 14 days but that she is “NOT the average patient”.

Also, blood brings oxygen to the brain and she is a little anemic so they are going to start giving her a transfusion of a couple pints of blood. They want to keep as much oxygen as possible in the brain so they will watch closely and make sure she is getting enough but not too much blood.

I waited long enough to post this that I now have a report for today. Dr. Amar did the steroid treatment today (July 30, 2008) and she is now back in the room and doing fine. He pointed out that today is 9 days since her last and largest bleed (it happened Monday, July 21st) and that typically they have 12 days (again they noted that she is not a typical patient) where the vessels are actively spaziming. So, the good news is that her arteries have not gotten worse and are actually looking a little better in some areas, still not in others, but overall she is looking a little better internally. They will do the procedure again tomorrow and will keep treating her as she is slowly healing. The road will still be long and bumpy but when you look at it as 9 days, versus day by day, she is really doing so much better.

Please know that we do appreciate all that you are doing to pray for her and our family. Your love and acknowledgement means so much to all of us. Also, if you have any photos that you would like me to add to her book please e-mail them to me christienoelle@yahoo.com or you can mail them to my home address- if you e-mail me then I will give you my address. (Notes or cards are welcome too)

Note: She still has the breathing tube which is placed between her vocal chords therefore she can not talk at this time. This does not mean that she will be unable to speak; we still don’t know that. Also, she is still in the critical care unit and is still critical. These daily milestones are some indication of improvement but she is not out of the woods yet.