Hair Gone

I just got finished shaving Gary's head. It will be more comfortable for him now. As you see, he looks great as a bald man.

Bronch Done

The bronch procedure is done. They got the sample and Gary did well. We got down to the procedure area and his temperature disappeared- yeah! Don't get too excited it came back when he came back to his room. He was happy to get alittle relief for alittle while. I will be happy when he feels good enough to write his own updates- I'm an engineer not a writer!
He took his first dose of antifungal med- voriconazol. This drug has a side effect of hallucinations or visual disturbances. Gary is kinda looking forward to experiencing it. I am looking forward to it clearing up his infection.
He took a shower this afternoon and lots of hair came out. I will use the clippers to even it out tomorrow. He immediately put on a baseball cap. He will get used to it.
Have a good night.

Bronchoscopy

Well another day at U of M! The fever did decrease somewhat this morning but now seems to be increasing again. He is going for a bronchoscopy anytime - they were supposed to get him at 10am and it is now 11:10. They will take a sample of the mucus in his lungs to see what kind of fungus grows. After the procedure he will be put on a wide range antifungal medication to start killing the fungus. It can take several days to figure out exactly which medication is best so we are looking for the initial medication to help. The infectious disease experts came by but not really sure if they will recommend anything different.
I'm not sure if we have mentioned low calcium levels. He is taking calcium via IV and a few different types of calcium pills. The pills are so large I break them into quarters to be swallowed. Tests indicate that the low calcium levels are not due to kidney issues or parathyroid glands. They are probably from the chemo treatment. The symptoms of low calcium are muscle twitches and bone/joint pain. Gary's levels seem to fluctuate and he can tell when it gets low.
Gary's ANC increased to .3 today. Neutrophils fight infection and they weren't able to calculate them the last few days- we are happy to see an increase.

Still Hot

The fever has continued. The antibiotics don't seem to be working. The focus has switched to Gary's lungs which showed some pneunomia and mouth ulcer. For now the mediport does not seem to be causing the infection. We have been visited by the lung drs and mouth surgeons. They are conferencing and will return with more ideas. In the meantime, Gary is laying here sweating, shaking with chills and literally pulling out his hair. He doesn't feel like eating but the aide just brought a double orange popsicle and he is excited!!
We have confidence that they are going to figure this bug out but it will take longer than we had hoped.

Infection Fighting

The doctors made their rounds. This is a teaching hospital so they come in a group of 5 or 6. It is pretty obvious which doctor is in charge, they are the only ones that talk. He feels to have narrowed the source of infection to Gary's mouth ulcers or mediport. If we could choose we would choose the mouth but unfortunately we don't have a choice. They are going to start a 3rd antibiotic today. He just had an EKG and will get a chest catscan to see whats going on in lungs.
He told me there was alot of hair on his pillow. So I pulled at a gray one on his head and it came out easy and he didn't feel it. Losing hair is the least of his worries at this point.
He is getting a platelet transfusion now and will get two more units of blood next.
Keep the prayers coming!
Tammy

Still Waiting

Not much news to update this morning. The high fevers have continued. We watch the clock for time to take next pain pill. He gets very uncomfortable as the time gets closer. It does help to make Gary more comfortable but the fever has not decreased. He started another antibotic last night. For those who know the difference it is Tobramycin which focuses on gram negative infections. He still gets Zosyn which is a broad spectrum antibiotic. He will start another antibiotic today still waiting for the doctors to make their rounds. The pain pill is wearing off I'd better get back to the patient.
Tammy

Fever Continues

Gary's fever has continued today actually increased from the 99-100 range yesterday to 101-103. He is pretty uncomfortable with chills and muscle spasms.
Some bacteria was found a blood sample from his mediport. He has just started a new antibiotic to target the infection. We are hoping the antibiotic will work and the port will not have to be removed.
This is day 11 in his REPOCH treatment cycle. The doctors don't expect to see improvement in his blood counts until day 14.
He was able to take a shower and eat some dinner before the pain pill wore off.
Tammy

Admitted

Gary was admitted to U of M Hospital on Friday night. He developed a fever and with his neutropenia a fever is an automatic admission to the hospital. As you can imagine they have done lots of tests to find the source of infection. All of the tests have come back negative. It is possible that they will not find a cause and it will just go away.
The fevers need to be gone for 24 hours and his ANC need to raise from .1 to 1.0 in order to be released.
He is not feeling good. He gets lots of chills, cold sweats, bone and muscle pain. Although it is no fun to be in the hospital we all know that it is the best place for him now. Once again our friends have stepped up in a moments notice and helped out with the kids. We are so fortunate to have so much support!

Bubble Boy

Well we are into what Gary's calls our Bubble Boy phase. His blood tests yesterday showed an ANC (Absolute Neutr0phil Count) of .1. Neutrophils are the things that help you to fight infections- ANC less than 2.0 you need to be careful so at .1 well its Bubble Boy Time. The kids go through a complete sterilization process when they get in the house :)
He is still pretty tired and achy, we are hoping to see improvement in the next few days. He finally slept last night with the help of some pain killers and Ambien. He is hesitant to take them but I encourage him to do what it takes to get through these rough days. He is not going to become addicted to them in just a few days. He has lost 13 pounds and finds it difficult to eat with mouth sores. I tried to get him outside yesterday for a short walk in our balmy 40 degree weather and he said "I am exhaused just sitting here" and took a hot bath instead. One day at a time....one day at a time
Tammy

Back Home!

Hello Everyone,

We made it back to Novi! It took a bit longer than expected but we still arrived on Tuesday night back at the old homestead!

I was delayed because my pesky Platelets and Hemoglobin decided to drop on my last night, so I had to get a bag of platelets and 2 units of blood before leaving OSU! Good News is that I have begun to go longer periods of time without needing supporting blood products which means my body is beginning to support itself again. The doctors believe in a few weeks my blood numbers should bounce back.

As you might have guessed based on the posting time of this note I am not sleeping as soundly as I would like but hopefully that will improve.

Thanks again for keeping me in your prayers!

and thanks for checking in,

Gary