San Francisco Bay Area Tarantula Society

sntcruzan

Hi,
We seem to be doing alot of emailing about my condition. So, we have decided to open our own Carepage blog page.It will give you the up to currents findings and happenings in my journey to recovery.
Feel free to look and drop me a note from time to time.

http://www.carepages.com/carepages/FredMacsMtWhitney

Fred
_________________
Focus on the prize.

UglyKid2 · Posted: Tue Jun 16, 2009 4:11 pm Post subject:

Here is an update on Fred's current condition. Please join the carepages blog so you can be kept informed. It's easy and free. Show your support for our President!

Fred's Updates

Tough Day for All

It's been a tough day for both of us (Fred and I). Fred has not been feeling well at all. The bleeding has slowed significantly and we are both sleeping better, but he has had a lot of pain in his mouth, gums and teeth. We are thinking he needs to see a dentist. Our dental insurance is not that good. Also, if he does have an infection in a tooth, it will have to be pulled before he gets a transplant.

He had platelets again today. This is the fourth time in 10 days. Today he had a slight reaction to the transfusion and his temp jumped up and he felt nauseated. This is the first time something like this has happened after a transfusion. The nurses were quite concerned and took quick action to try to get his temp down and stop the reaction. He hasn't felt well since we got home. He has to go in tomorrow and get two units of red blood. They will be keeping a close eye on him.

I am feeling the weight today. I've had to abandon work a couple times in the past week because of him not feeling well. I want to be with him, but it adds that extra little stress at work because I'm not getting what I need to done. Last week after throwing out my plans on Thursday to try to figure out the bleeding issue with him, I ended up going back to work from 7 - 11:30 p.m. just to try to keep my head above water. I have also run out of sick time because of all the appointments we've had, so missed hours is now becoming missed pay or reduction in vacation time (which I will need when he is in the hospital).

We are working hard at not getting discouraged and know that we are loved and supported greatly. Our faith is strong and we know God has a plan for us on this journey, but some days just seem a bit tougher than others.

On a positive note, Ian made Little League All-Stars for the third year in a row. This is a great thing for him. It is a bit hard because Fred will most likely not get to see him play any of the all-star games.

We value your prayers and your words of encouragement.

Love,

Fred and Rena

BayLee · Posted: Thu Jul 02, 2009 9:42 pm Post subject:

Here is today's update form Fred's carepage

All Time Low on T -12

Well, today started out with a bit of a shocker. Fred went in for his regular Thursday blood count test and he set a new record. His platelets were at 2 thousand ... count 'em 2. I think the lowest he's been before this was 7, so this was pretty low. We were supposed to head out to Stanford, but the doctor insisted we stop so he could get platelets before we went. He had just been transfused with platelets on Monday, so this is telling us all that the platelets aren't really sticking with Fred at all.

The nurse we had to meet with at Stanford was very understanding and said we could arrive late. We were also scheduled to meet with John, the tarantula-sitter, to hand off the rest of the tarantulas. Fred decided they would be cared for better by him than by me and the boys. So after transferring tarantulas in the Stanford parking garage, we headed over to Fred's new quarters and met with nurse Kate. Her job was to walk us through the entire process from beginning to end explaining all of the medications, the purposes of them, the potential risks and the possible things that could go right or wrong each step of the way. It was a bit overwhelming. Fred then signed the consent form for the transplant procedure.

After that we had to go do one final lab test and head to our appointment for catheter care. Fred will have a catheter inserted into his chest below his collar bone for the medications to be administered and the actual bone marrow on transplant day. This will remain for at least 3 months, so we had to learn how to keep it clean and change the dressing on it.

We came home both totally exhausted and thankful for the friends who helped with the boys and provided a meal for us. It was so nice to eat early and then relax as a family. We watched the movie "Bucket List". Very enjoyable.

Thank you all for your amazing love and support.

Love,

Fred and Rena

p.s. T -12 means 12 days before transplant day ... are you ready Doug?
_________________
Visit me @ Tarantulas.us

"The most beautiful experience we can have is the mysterious. It is the fundamental emotion which stands at the cradle of true art and true science. Whoever does not know it and can no longer wonder, no longer marvel, is as good as dead, and his eyes are dimmed."

--"The World As I See It," originally published in FORUM AND CENTURY, 1931.
- Albert Einstein
"
I speak English, German and Lonish.

UglyKid2 · Posted: Fri Jul 03, 2009 5:40 am Post subject:

For those who don't know:

In an adult, a normal count is about 150,000 to 450,000 platelets per microliter (x 10–6/Liter) of blood.
If platelet levels fall below 20,000 per microliter, spontaneous bleeding may occur and is considered a life-threatening risk. Patients who have a bone marrow disease, such as leukemia or another cancer in the bone marrow, often experience excessive bleeding due to a significantly decreased number of platelets (thrombocytopenia).

Bonedog · Posted: Fri Jul 03, 2009 6:28 pm Post subject:

Let's all send Fred the same energy that you sent Grant. Grant's great and we can do the same for Fred. Sit back, relax and send all that energy to someone we all love. Show us what the Bay Area's made of.

The best healing power on the West Coast!

Remember POSITIVE THINKING!

sntcruzan · Posted: Sun Jul 05, 2009 7:47 am Post subject:

Carepages have been updated today. 3 days to go...... tick.tick.tick
_________________
Focus on the prize.

llamamama · Posted: Sun Jul 05, 2009 7:54 am Post subject:

Hang in there, Fred! We are all pulling for you!
_________________
The future belongs to no one.

http://sfbats.ning.com/profile/Laurie

BayLee · Posted: Sun Jul 19, 2009 11:34 pm Post subject:

Hi Everyone, Here is an update about Fred from 2 hours ago.
Good News!

Day 3 - Back to Old Room

Posted 2 hours ago
I want to thank everyone for praying for Fred yesterday and today. He was moved back to his old room from ICU around noon today. The doctor said he is 200% better than he was 48 hours ago. He still needs to have negative fluid flow (more out than in), but he looks, sounds and feels like the old Fred. He was actually feeling so good today that he wanted to come home, but that is not yet possible.

I was able to visit with him this evening and he was comfortable and conversive. He is pain free and looking much less bloated than he was. They are still watching him carefully because they don't know why he became so swollen with fluids so quickly. They've run tests on his heart, kidneys and liver and all came back normal and healthy functioning.

I told the doctors that we had a lot of people praying for him yesterday and today and we believe that made all the difference for him.

I began to realize that there seems to be a hidden blessing in all of this. The drug they were to start Fred on to prevent graft vs. host disease could not be started because of his condition. This drug causes significant "mucasitus" which is a breakdown of the lining of the mouth, throat and stomach. It is one of the brutal side effects that most transplant patients must learn to live with in the name of "prevention". However, it is supposed to be given on Day 1, 3, 6 and 11. It could not be given on Days 1 and 3 because of his condition, so the doctors have had to rethink this part of the treatment.

There have been cases where patients have been given prednosone in place of this drug and it has been effective in preventing the graft vs. host disease that can be deadly for Fred. They believe that it will work in Fred's case as well. So Fred will have to endure the side effects of predosone, but not the others that are far worse.

This is a praise and a prayer request, because the greatest risk for Fred at this point is that disease and infections. So please continute to cover him in prayer as they move forward with the treatments. The doctors said that there is a chance that we could see white cells developing as soon as day 10 and this would be a very positive sign of the transplant working.

Also, Fred has not yet lost his hair. They are amazed that he still has his full head, but continue to say that he will lose it. It is just a matter of time. I did post some pictures from the treatment, transplant and ICU in the photo album.

Thank you again for your powerful prayers and your outpouring of encouragement. I have felt very loved and cared for the past two days and I know that Fred also has been so loved and cared for by those of you who went to visit him and encourage him.

BTW, I know he will have visitors on ever day this week except Wednesday. If anyone can make it to see him on Wednesday, that would be great!

Love,

Rena and Fred
_________________
Visit me @ Tarantulas.us

"The most beautiful experience we can have is the mysterious. It is the fundamental emotion which stands at the cradle of true art and true science. Whoever does not know it and can no longer wonder, no longer marvel, is as good as dead, and his eyes are dimmed."

--"The World As I See It," originally published in FORUM AND CENTURY, 1931.
- Albert Einstein
"
I speak English, German and Lonish.

UglyKid2 · Posted: Mon Jul 20, 2009 6:45 am Post subject:

Yeah, way to go Fred!!!

UglyKid2 · Posted: Tue Sep 29, 2009 7:24 am Post subject:

Heres the latest update from the CarePage blog about our SF Bats president Fred McDonell:

Day +75 Monday CMV Negative for Good
Posted 29 minutes ago
Fred has been extremely tired lately and he is getting very tired of feeling tired. However, it seems that we have turned the corner on the CMV and the doctors have decided to reduce the medication that is knocking out his counts ... and just in the nick of time. He tested "neutropenic" yesterday meaning that his ANC has dropped below .5 and he is extremely susceptible to infection of all kinds again. They are reducing the IV medication down from 2x per day to 1x per day beginning today. They believe his counts should recover quickly with the reduction in medications.

In the meantime, we are all beginning to hope and pray that he can come home by the end of October. This is earlier than expected, but I have run out of caregivers.

In fact, we need someone to help take care of Fred next week. Monday afternoon through Wednesday evening. My brother has been delayed in his arrival to come and I really can't uproot the boys for two nights again. It has been a rough haul for them and I will be spending the next week just in getting them back into their routines, Ian especially. If you can be with Fred during this time and come over sometime on Saturday or Sunday for orientation with me, this would be such a blessing.

My brother should be taking over on Wednesday for 1 1/2 weeks and then another friend of ours, Joan will take the next week. After that there is no one to care for Fred. I can take more time off work, but the timing would be very bad and the hit to the finances will be much more challenging.

More later on what's going on at home with the boys. I wanted to get the word out about a need for a caregiver so you would have time to consider it and get back to me.

Thank you,

Rena and Fred

Fred McDonell: