Grandpa

So Jett and I are home now. We left yesterday. We would have loved to stay longer but my work has ready been so understanding and staying longer would be pushing it. Hopefully we will be back soon. And hopefully next time we can steal Kerisi away. His program isn't so understanding ;).

So the final pathology came back yesterday of the brain tumor. The original pathology was a frozen section that was done intra-operatively so it wasn't as complete as the results that are in now. Anyway the final pathology is that the brain tumor is a high grade glioma. What that means is the cancer is a primary brain cancer and it's of high grade type which in a nut shell is not good. They have transferred him to another hospital...the CPMC hospital on California street. It's specialty is cancer so they can do all the necessary testing there and the oncologist is there. It's also where they do all the treatment for cancer. The oncologist has now informed us that the cancer will be able to be treated with chemo and radiation. He thinks the prognosis is between 3-4 years. Grandpa is aware of this and now if course is ready to get back to work. We will see how it all pans out. Overall he is doing much better. He passed his swallow study so he is finally able to eat. He is getting stronger every day and hopefully will be able to go home by the end of this week :). Please continue to pray for him and my family. Everyone really appreciates all the support and love you all have been sending. I'll continue the updates. Much love.




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Grandpa and Jett

Best Friends...




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Baseball

This is at the Giants game when Jett was 6 weeks old

Biopsy Results

Today was a good day! Grandpa was doing better than we have seen him since this all started. They started giving him steroids last night to help with the swelling in his brain. He started talking and comprehending so much better today. I spent about 2 hours straight this morning going over everything with him. He wanted me to tell him what's been happening from the start. He is so incredibly smart. He was understanding everything that we were talking about and speaking in medical terms about what the doctors have been thinking and saying about his diagnosis. He is very happy that he is surrounded by all of his family and that he has so many amazing doctors taking care of him.

So he had his biopsy today and be results are that the tumor in his brain is a metastatic adenocarcinoma. What that means is that he has cancer somewhere else in his body that has spread to his brain. The good news is the brain lesion is treatable with direct radiation which will happen soon.

At this point we are waiting for the oncologist to come by and start their workup. There are many possibilities where the cancer originates from. It's an adenocarcinoma which is good in the fact that it is treatable with chemo. All we really know is that the road to recovery is going to be long and hard.

Here are some pics from today. Jett and grandpa are such buddies.

Another Update

So the roller coaster continues. Grandpa spiked a fever again last night so the doctors started to wonder if he was getting the right treatment. My aunt Lucia asked one of her colleagues who is an infectious disease doctor to go see him. Her partner ended up looking over the case and said the whole picture didn't make much sense and wasn't completely consistent with being HSV encephalitis or encephalitis at all for that matter. So they decided to do another MRI of his brain...this time with contrast. A walnut sized mass showed up on the scan. It's in the left temporal region of his brain. We don't know for sure what it is yet. They are doing a brain biopsy tomorrow. It is most likely a glioma which is a brain tumor. It could be either low grade or high grade which makes a big difference with prognosis. The pathologist is going to be there during the biopsy tomorrow so we will know right away. Grandpa started to wake up a lot more than he has been. In fact at times he is completely lucid and aware of the situation. He just got off the phone with my grandma and listening to them talk was the most precious thing I've ever witnessed. They were talking about when they first met and how happy they've been. He knows he has brain cancer and he's scared. We just have to pray its a low grade tumor. I'll keep everyone updated.




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Oh and by the way...

As you can tell from the photo in the last blog Jett and I flew out to SF to see grandpa. Kerisi wasn't able to come because of work. I took some medical leave and happen to go to a very understanding program luckily. Jett gave grandpa lots of kisses today.


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Grandpa

So we have a lot of new updates. We transferred grandpa to CPMC (California Pacific Medical Center) yesterday from Marin General Hospital because we didn't like the care he was being given. They didn't agree with his diagnosis of stroke so the further investigated everything. The did a lumbar puncture and re-read the MRI and it turns out he had encephalitis. He never had a stroke. The encephalitis was caused by Herpes Simplex Virus (HSV). Turns out 95% of the population have some form of HSV. In most of us it lies dormant and never shoes it's ugly face. In 0.2 of every 100,000 people it travels across the blood brain barrier and causes encephalitis. This was the case with grandpa. He is now receiving the correct treatment of acyclovir and we are hoping a praying for a full recovery. We feel much better now that we have a proper diagnosis. Crazy how far off the other hospital was. Goes to show you should never assume or rule anything out when it comes to medicine.

There are so many crazy things that happened with grandpas case and looking back at it all we feel so bad we didn't figure it out earlier. First of all any time grandpa had lucid moments he would always say something in respects toward not having a stroke. For example when he first got to the hospital and everyone was telling him he had a stroke he would say no stroke. It's not a stroke. But his phrases were limited we couldn't figure out what he was talking about. Then yesterday when my mom told him we were transferring him to CPMC he said good....they will figure it all out. It's amazing how smart he is even as he is going through all this. We all thought it was so crazy that he had a stroke as he does not have one pre-existing condition for a stroke. Besides his age. And he originally presented to the ER with fever and seizures so in retrospect it seems obvious it wasn't a stroke or at least something else was going on. But since they were saying stroke from the very beginning that's all anyone could think about.

The neurologist we talked to today had a lot of good information. She has a good feeling about his prognosis. We will know more as he recovers and depending on how he responds over the next week or so now that he is receiving treatment. We are just grateful that he has finally been correctly diagnosed and he is on his way for recovery. Thank you for keeping him in your thoughts.




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Grandpa Busts A Move

Let's hope this is what he's doing in his mind right now as he is taking a little break from reality ;).




Ya grandma knows how to break it down too :)


I'm pretty sure we were dancing to tupac











Pooped




....but he still has a smile on his face

Grandpa Busts A Move

Let's hope this is what he's doing in his mind right now as he is taking a little break from reality ;).




Ya grandma knows how to break it down too :)


I'm pretty sure we were dancing to tupac











Pooped




....but he still has a smile on his face

Grandpapa

We have a few new updates on grandpa. We finally were about to get the MRI and it is showing a large stroke in the left side of his brain. He is still pretty confused so we aren't able to see what functional deficits he has. From what we can see so far it seems like he is able to move his right leg and arm (which is what we would worry about from where his stroke is) but he might be having a hard time moving his right hand. It also seems like he is neglecting his right side. We are actually transferring him to CPMC in the city because we have been very unhappy about the care he has gotten at Marin General so far. We still all have very positive thoughts that he will make a full recovery. He is the rock of the Tuffanelli family and if anyone can make it through this it's him. We just keep thinking positive thoughts and saying lots of prayers and hope you all do too. Here are some great pics of grandpa as happy as can be at our wedding two years ago.

Update on Grandpa

So they were able to extubate him...meaning they took the tube out of his mouth and took him off the breathing machine, which is great news. He is able to talk but he's not making a lot of sense at this point. We are still waiting for the MRI and the neurologist to let us know exactly what's going on. He's still in the ICU but hopefully he won't need to be for much longer. Here are some more pics from when they came to visit in June.




At the Eastern market




Funny hat grandma bought for my mom.










Jett and his buddy




At the Henry Ford Museum

Praying for grandpa

My grandpa Denny, Jett's great grandfather and one of his best friends, my moms dad, had a stroke yesterday. He's currently in the ICU and it's too early to know the outcome. We will keep everyone posted. Please keep him in your prayers. We are all putting positive thoughts out for a good recovery. Grandpa is an amazingly strong person and we know he will make it through this. Here are some pics from when him and grandma came out to Detroit to visit us.




Jett absolutely loves his great grandpapa. He is actually obsessed with him. He won't leave his side when we are all together. Insisting on sitting on his lap at all times. It is precious.





At the Henry Ford Museum having fun in the train.




Jett's our driver :)

Hamptons Crew

Here's a picture of all of us in the Hamptons l few weekends ago. From the left to right Kerisi, Aksel, Leah, myself, Julia, Jett, Jason, Michael, Drew...and Chewey

Climbing his wall to get his ball

Video of Jett climbing his wall


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Jett and Kerisi having some juice video

Here's a silly video of Kerisi and Jett drinking juice and eating ice.

Swimming

Here are some videos of Jett swimming.  He is getting pretty good and loves it.  He can't come up from under water yet but goes a pretty good distance underwater, holding his breath, and reaching for us when he's ready to come up.

Video of Jett swimming


Video of Jett swimming at birthday party

Swimming with his ball

7 second swimming video

Jumping

Here's a video of one of Jett's new favorite things.

Jett jumping onto pillows


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Hamptons

Here are some of the pics from our trip to the Hamptons. I'll be posting more later. Such a fun adventurous trip. We went up there with Julia and Aksel and stayed at our friend Mike Sloans house and met lots of new friends at the same time. The Hamptons are amazing. Beautiful. The homes are exceedingly large. People are just what you would expect from the movies. I went to $40 bikram yoga (no different from any other bikram class I have ever been to). It was quite a trip. Jett loved it of course. The people we went with are extremely active so the trip was full of exercise which we love. We also got to hang out by the pool a lot and Jett got pretty good at underwater swimming. We crashed a 6 year old birthday party which was just what you would expect from a kids party in the hamptons. Jett got to drive around a tiny hummer. It was amazing.


This is the pool in the yard we were staying at.


Jett swimming underwater


At the beach





Julia and I biking through the hamptons.











Kate, Sloan, Julia, Jett, Aksel, Masi


The boys eating lobster on the rocks at sunset

Climbing wall

Here's a video of Jett climbing his wall.

Climbing wall video


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