Richard Venezky

Hi Everyone,
The past few days can only be described as amazing. Dad has come a long way since last week. It’s difficult to put into words how Mom and I felt walking into his room today. He was sitting in a chair drinking out of a straw. He had already been through his first round of physical therapy (in his room) and is scheduled to go down to the physical therapy room tomorrow morning. One of the doctors even came in to let us know that Dad could start to eat solids again (I think it means thicker soups and applesauce)!

Yesterday we saw Dad sit in a chair for the first time in days after having his NG (nasal gastric?) tube removed. Today they started to remove more of the tubes, bags, fluids, etc. His room began to look a reasonable size again as each piece of large equipment was wheeled out. When I left they were getting ready to remove two more rather large machines, which will make it much easier to get to the CD player.

We even heard the first comment about Dad being able to come home for a bit before the next round of chemotherapy. I don’t completely understand the next round but will get more information as we get closer to it. The plan is for him to rest for the next two to three weeks in the hospital. The rest part is very important because now that Dad is feeling better he’s aware that he’s tired but he’s got lots of people talking to him. I definitely don’t mean to imply that he doesn’t want to hear from anyone but I did witness a really nice nurse’s aide ask a few too many questions while Dad wanted to nap. And since no one else in our family talks too much… this shouldn’t be an issue for the rest of us (for those of you who don’t know me very well, I’ve been described as a talker). So the amazing news is that Dad is doing much better but it would be great if we all continue to hold off on calling until he can catch up on his sleep. Try to imagine 20+ days of sleeping in a hospital bed with nurses coming in to check on you every few hours. Unfortunately, that was the easy part…

So once again we want to thank everyone for all the good wishes, letters, cards, pictures, food, and gifts. Please accept this email as a thank you note. I had the opportunity to read some of the cards to Dad this past week and I’m smiling just thinking of the joy each one brings. I wish that I had the time to write back to everyone and to thank you all individually. In addition, I am reading everything you send back to me, even if I don’t reply.

Thank you again.
Please let me know if there is anyone I’ve missed on the email list.
We love you,
Dina

—-
Where we are now…
Dad still has the catheter in his chest and a very low blood count making it really important that he doesn’t get cut or bruised. He is starting to eat again but needs to take things slowly. In addition to the previous restrictions, no heavy spices, creams, or anything that could upset his stomach. Ideally, everything should be made in a sterile environment.

I am on my way back to California and will write again soon.
For anyone who is interested, Dad will be giving out peanut butter cups on Halloween. I’m not sure what he is going to dress up as but I’m thinking hospital patient is the current fallback.

I’ll include a picture of Ben in the next update - he had a good weekend with his Dad and somehow outgrew his bouncy seat.

Hi Everyone,

It’s been a tough week but things are looking up. Before I begin I want
to apologize to anyone who hasn’t heard the news, I will forward the
first two updates to you when I get back to California. I also want to
mention that the medical information that I am including may not always
be exact, for instance in the first update I thought the chemo ran for
14 days straight when it was really only 7 and then 7 to rest. In
addition, my father does not proof read these before I send them so
please excuse any spelling/grammar errors. I’m happy to have my
allowance docked for any errors when this is all over.

When I last wrote Dad’s fever had decreased from 104 to about 101 and we
were all hoping it would continue to come down. Well…the fever did
finally come down but in the process other issues became more critical.
Dad refers to the past week as living in a David Lynch hell. As we
begin to piece together what he was going through (the hallucinations
were very real) we all agree and are thrilled to have him back.

Dad was having difficulty breathing and the doctors were having
difficulty figuring out why. Dad was also having difficulty with his
stomach. The doctors have been working very hard to fight what they now
believe to be a heart and a fluid problem. The heart issue involves a
valve that is leaking such that Dad’s lungs are filled with fluid. The
fluid problem, from what I understand, is that Dad’s system was unable
to get rid of all the fluid that was being pumped into his body. So he
is on several different medications to alleviate these issues.

I can’t describe how much better Dad is today than a few days ago. Elie
and I went back to Delaware on Friday after we were told that Dad might
have to go on a respirator. Luckily, the medications he is on have
helped significantly such that he is now only wearing a small oxygen
tube (the cute one everyone uses on television to show that someone is
in the hospital) that is set to a very low level of oxygen. Friday
morning he wore an oxygen mask that pushed 100% oxygen into his lungs -
I forget the pressure. By Friday evening he was down to 50% and
yesterday they started to remove the pressure component for brief
periods of time. Dad still has a tube that runs down his nose and into
his stomach to alleviate pressure, making it hard to talk. Once the
tube comes out we hope that he will be able to start eating again (he is
getting food intravenously but I think even the hospital food is
beginning to look appetizing).

I will be sending more frequent updates so please let me know if you
would like to be taken off the list. The updates are meant to help my
Mom and Dad give out information to the people they care about and to
alleviate the phone calls to the house. (I’m sorry if there is someone
I’ve missed, it doesn’t mean that Mom and Dad don’t care.) Please do
not call the hospital. It is going to be a long road and we need the
nurses to concentrate on Dad.

Dad says thank you to everyone. He really appreciates the cards and
gifts but he wants to make sure that everyone isn’t spending too much
time worrying about him. We all love to read the letters and we bring
new mail to the hospital everyday. Mom has been doing an amazing job. At
this point we are really excited with Dad’s progress and are hoping to
see the growth of white blood cells in the next week or two.

Again, thank you SO much for your best wishes.
Love,
Dina

—-

Brief summary: Dad has acute myelogenous leukemia and received 7 days of
chemotherapy starting on Oct 11th. His immune system has been basically
wiped out and we are waiting for it to return. As such it is very
important that we don’t bring any illnesses to the hospital. When Dad
starts to eat again, he can not have any fresh fruits, fresh vegetables,
or peppercorns (ground pepper). We all wash our hands every time we
enter Dad’s room or when we touch our faces. Thank you.

—-

I’ve attached a small, recent photo of Ben.

From: Dina Venezky
Date: Tue Oct 22, 2002 08:37:37 US/Pacific
Subject: Update 2 - Day 12

Hi Everyone,
Just wanted to let you know how Dad is doing but before I talk about what’s going on now I’d like to mention my conversation on Friday. When I called Friday morning Dad was having students drop papers off at the hospital. He had had a 2 hour phone meeting with someone he convinced to work on a new grant (a large grant for adult literacy). He sounded amazing. The first round of chemotherapy was ending and he was going to have a full week to recover.

On Friday afternoon the effects of the chemo became harder to deal with. Dad ran a fever of 104 all weekend. When I spoke with the nurse yesterday the fever was down to about 101-102 and they were trying to find the source of the infection. Mom and Elie were with him all weekend and Mom continues to be there. We are all hoping that the fever continues to decrease and that the chemo was completely effective. This Friday, the doctors will test Dad’s bone marrow again to see if the chemo was effective. If the chemo didn’t do what it needed to do (I’m not sure about the specifics so we’re waiting to hear what they find), he will receive another round of chemo right away.

It’s hard to imagine Dad in the hospital and the whole experience continues to be a shock. If you have a chance, please send a card/letter/picture to the house in Delaware. Dad can not talk on the phone right now and but I truly believe that hearing from everyone helps. I think hearing stories and taking his mind off of what he’s going through is helpful. Someone brought him a coloring book and he was having people color pages for him (last week) when they came to visit. He was also coloring. If you have time, it would be great to add to his collection or send other similar activities. We are also trying to find things for him to eat (he hasn’t had much to eat since the fever). Of course, the best thing right now is to just think positive thoughts.

We love you and thank you VERY much for your support.
Take care,
Dina

Recap of food restrictions, in case you’re interested.
No fresh fruit or vegetables (everything needs to be cooked)
No peppercorns (they contain spores…)
Here’s the hard one for me…No tasting the food while cooking without washing the spoon (I like to pretend that when I make cookies I don’t eat a lot of the batter but the reality is that I do)

Hi.
I thought I’d send an update on Dad and apologize if this is the first time you have heard the news. Dad is in day four of chemotherapy and doing well. He says that he is being saved from the hospital food by Karen (Mom) and a few others. We have been told that next week will mostly likely be more difficult as the drugs build up in his system. We are all taking it one day at a time and we are very happy with the doctor.

The first round of chemotherapy is scheduled to run continuously for 14 days at which point they will test Dad’s bone marrow to see if everything (the leukemia blast cells and developing blood cells) has been destroyed. Because Dad’s blood count is low and will be much lower, it is essential that he stays as healthy as possible. Below are a few of the guidelines Dad now has to follow.

Food:
No fresh vegetables or fruit (all fruits and vegetables must be cooked)
No peppercorns (there are spores in pepper so no cooking with this spice)
No fast food (not really the same problem for Dad as the others)

Visitors:
No visitors with any illnesses
No babies (dad did get to wear a mask to see Ben last week before the chemo)
No fresh flowers in his room
No plants

Because of the treatment Dad is receiving, having visitors isn’t a good idea at this time. Dad needs to focus on helping his body heal and would not be able to fight off the minor bugs (bacteria, viruses, whatever..) that we all carry and fight without any problems.

Here are a few things we can do for him.
1. Stay positive!! It’s really important for us all to stay as positive as possible (but it’s still Dad so I’m not sure that we want to start making up any cheerleading routines just yet).
2. Do not ask how Dad is feeling. Instead, try to ask “How was your day?” (it’s hard but we don’t want to call and make Dad focus on anything that isn’t positive even if it’s just for a few seconds). Oh, if you call, you may need to let the phone ring for a long time. There are lots of nurses in and out of his room and he can’t answer the phone when his blood pressure is being taken.
3. Send cards, letters, pictures, stories, or anything that you think would cheer him up (to the house in DE - mom will bring stuff over). These will become more important as the weeks progress.
4. Continue to enjoy yourselves. Do something fun. Let us know about it.

Feel free to email me questions about Dad’s treatment, I would like to free up my Mom as much as possible. I almost went insane over the number of phone calls she was receiving at home so please don’t be surprised if phone calls are not returned.

We thank you SO much for your support and know that this is shocking and hard on everyone. I will continue to send these messages as I receive news - please let me know if you do not want to receive them or if there is anyone else I should be sending them to. I appear to have lost a lot of email addresses when I switched computers.
We love you,
Dina

ps The leukemia was diagnosed on Wednesday morning and the type/subtype was known by Friday morning, right before starting chemotherapy. Dad has AML (Acute Myelogenous Leukemia), subtype M1 (Myeloblastic, without maturation) - the type and subtype are both very common.

Ben and Mom in the cafeteria 10Oct02