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!