Step Forward!

Neutrophil batch #4 is in! They arrived at 10:30pm - we think the taxi driver made a stop at the casino. WBC 2.5 ANC 2.2 YEAH! Gary has been fighting a fever all night and this morning which we are told eats up the cells so we are glad that his numbers are this high. He is coughing more this morning so hopefully they are concentrating on those lungs. Gary seems to be feeling better today and ate a decent breakfast. We are looking forward to a good day!

Taxi Transport

Today is another neutrophil day....yeah! Gary is fighting high fevers which seem to be worse and not come down like they were last week. His body is very tired so he sleeps alot. Please pray for Gary's own immune system to start kicking in and for a break from the fevers! More info on the neutrophils when they arrive. It is 7pm now Gary has a 103 fever and they are in a cab. Really that is what they tell me they do call a taxi to transport them from Downtown Detroit to Ann Arbor. I told them that I would schedule drivers (choosing fast ones) to transport the products but they didn't go for that idea.....come on now a taxi!!!!

Working Hard!

Neutrophil bag #3 is in and working. WBC 4.3 YEAH- ANC is still being calculated- it is a Saturday and the lab is running slow. Gary's body is working really hard- it has alot of bugs to fight off. He has been sleeping alot and seems more comfortable than he has been. It will be a slow recovery and will take some time. The best way to measure the success of the transfusions is the blood counts and how Gary feels. He says he has no pain and his counts are going up with the transfusions.
ANC 4.0 very good!

Go Go Gary!!!

There are good days and bad days- so far today has been a rough one in Rm 8A117. The neutrophils are on their way so it will turn around soon. Several mishaps have been occurring throughout the day that I am not going to write about but I will say an informed experienced nursing staff makes a difference. Fortunately Gary is busy concentrating on fixing up his body so the little blips are not bothering him.
They have arrived 7:00 pm Donor #3 volume 260cc in the lead yeah! Let's hope that bag is full of neutrophils!
7:10pm The infusion has been stopped. Gary has a fever and the doc wants to wait until it gets down to 100.4 or lower. Cooling blanket in place!! The blood doesn't expire until 9am tomorrow but lets hope it doesn't take that long. Did I mention that it has been a rough day??
10:00pm- Neutrophils are making their way into Gary after a stressful delay. The fever dropped to 98.3 and it isn't going up anymore tonight!!! The infusion will take about 4 hours with blood pressure taken every 15 minutes. After the infusion, blood pressure will be taken every 30 minutes for 4 hours. So much for a good nights rest!!

Let me explain Go Go Gary! I attend Sharing Hearts bible study at Northville UMC. A few weeks ago they did a prayer circle around me. I told Gary about it and he said what about me I am the one that is sick! So yesterday they came to U of M and did a special cheer GO GO GARY in the garden outside of his window. They had pom poms and the big signs in the photo above. He was able to go over to the window and watch them. He said that he felt a warm sensation come over him. God is at work.

Amazing Neutrophils

After #2 donation WBC 5.0 with 4.8 Neutrophils- wow! The doctors only expected a .5 bump!
They only last about 1 day- his counts did return to .4 WBC and 0 WBC last night before the transfusion. So Donor #1 is in the lead with volume and Donor #2 leading neutrophil count.
Gary is fighting away today which takes alot of his energy. He is frustrated with his mind thinking slow. His breathing improves with the use of oxygen.
The pseudomonas bug that was found in his blood was also found in his lungs. It is a difficult bug but with the antibiotics and increased neutrophils - the bugs will be gone.

Neutrophil Mania

More Neutrophils yeah! They arrived about the same time as Monday 7pm. Donor #2 volume 228cc. Gary is ready for them to do their thing!! His fevers were better today. The blood cultures show no new bugs.
He is having some issues with his other eye but I tell him its ok he just needs to close them and sleep anyways.
Gary says "hey everyone thanks for your prayers!" He has been laughing in his sleep today and I ask him what is so funny- he said that God is telling him some jokes- laughter is the best medicine you know :)
Pray for a restful night and agressive neutrophils!

Chomping Away!

WBC up to 2.2 and ANC finally registered at 2.0! Those bad boys are in there chomping away at the bugs! The actual transfusion was pretty uneventful. His fever was down to 99ish most of the night- not sure if that was due to neutrophils or pre meds. His cough is more productive which does seem to show neutrophils are busy in the lungs.
I didn't mention yesterday that the doctors took away Tylenol. He pretty much watched the clock every 4 hours for next dose to Tylenol to relieve the fever. His liver enzymes shot up so the doctor said during morning rounds he was going to "cut back" the Tylenol. I asked what does cutting back mean and he said he won't get any. The big meanies- cutting back is different from cutting out! We are looking for the new white blood cells to help out!
Here's to a day of hungry neutrophils!!

Neutrophils

Today is the first Neutrophil transfusion. Gary is still fighting high fevers under the cooling blanket. The donor gave up the cells this morning and we are still waiting for them to arrive here in Gary's room.
5:00pm They just came in and did a type and screen- which checks Gary's blood type. Now really why do they have to do that- blood types don't change and if they don't have his blood type correct by now- we are in big trouble. The good thing is that a STAT type and screen means neutrophils are coming soon!!
7:05pm Here they come- the neutrophils are traveling into Gary. He is zonked out with premeds. Donor #1 had 248cc - let's see which donor can make the most neutrophils!! The transfusion process is scheduled to take 4 hours. So far so good!

Bugs and More Bugs

Ok seriously how many stinking bugs can one guy get??? Due to Gary's high temperatures they take blood cultures almost daily. Blood cultures need to be taken from two different sites (preferably each arm) on the patients body. To Gary that means two more pokes. The cultures from last night revealed another bug in the blood. So more antibiotics were added and the pic line was removed. So IV's are back, we hope that they will be longer lasting this time.
Temperature regulation remains a problem. It has been hanging out in the 103's. He is using a cooling blanket - picture a rubbery 10lb blanket resting on top of you- really great for breathing out of his pneumonia filled lungs.
Tomorrow at 9am our first donor gets the blood sucked out of him. We are anxious for it to get into Gary's body and work away. Pray for the neutrophil transfusions to go smoothly and the bugs to get out!!

Another Bug Found!

They identifed a new bug (drs really use that word) in Gary's bronchopsy culture. It is a nocardia- gram positive bacteria. His drugs have been switched to attach this bug too.
He has had some drastic drops in temperature today. It was hanging out around 103 for awhile and then dropped to 98 in less than an hour. This is exhausting for Gary's body.
We are looking forward the granulocyte transfusion on Monday.

Pirate Patch

Gary is trying out the pirate look today. His right eye has gotten cloudier in addition to the periphal issues so he decided to try the patch. The eye expert is coming back to check him out later today.
We are moving forward with the neutrophil transfusion (also called granulocyte). This is a rare transfusion which is used to treat infections in patients whose bodies will not produce their own neutrophils. We are creating a list of potential donors with O+ or O- bloodtypes. These donors will go through a screening process to select the best match for Gary. The donor will get a shot to boost their white blood cells. The next morning blood will be collected through a special machine that filters out the needed cells. Gary will receive the cells within a few hours. As the new cells work in Gary's body to fight infections, Gary will probably feel sicker. This process is repeated with multiple donors over the course of a few weeks. He will need to remain here at U of M until the infection and fever get out of him.

Blood Donor Info- it looks like the Red Cross is most interested in O+ and O- male donors. Either the blood bank guys have something against females or the antigens created during pregnancy don't make them optimum donors. The first donor being screened was scheduled to donate blood last Monday but didn't make the appointment- God was saving his neutrophil rich blood for Gary. If this seems to work 12 donors could be used (3per week for 4 weeks) so we are continuing to pass along names of potential donors. If you are interested in being added to the list email Karen at welch@twmi.rr.com, name address home and cell phone numbers are needed.

Neutrophils Needed

Gary has stayed about the same today. His fevers continue to go up and down. His sister BJ stayed the night with him to help him manage the fevers (blankets when chilled and ice when sweating). The fevers really take away his energy.
We have heard preliminary results from the bone marrow biospy. His marrow is pretty much empty- not much going on which was suspected by his low blood counts. Is this good news or bad news? Well it is good to find out that the marrow is not full of active leukemia but we would like to see something going on in there. Due to the infection in Gary's body he needs white blood cells (healthy ones) to help the drugs fight.
Now for a quick Tammy lesson in blood. Blood consists of white blood cells, red blood cells, platelets and plasma. One component of white blood cells are neutrophils. Neutrophils help the body fight infection. Gary's neutrophils or the ANC number that I refer to are too low to measure. His body has nothing in it to help fight the infection which is pretty much in his lungs. How do you get more? Well your body is supposed to make more and that is what we have been waiting in the hospital 19 days to happen. No one really knows when Gary's marrow will start making neutrophils. He is getting neupogen shots to try to kick start the process but no action yet.
Pray for more neutrophils to be made in Gary's body tonight !!!

Not Today!

The bone marrow results are not in. Gary will not be coming home today. He had fevers throughout the night and told the resident in morning rounds that he was not comfortable to come home. See God is taking care of us- the time is not right to go home.

Biospy Completed

It's Tammy back again- Gary had a bone marrow biospy today so I will give him a break (in novice terms they take a chunk of bone about the size of an eraser on a pencil out of your hip bone) This is Gary's eighth bone marrow biopsy- it provides good information about how the disease is progessing. Due to the low blood levels, we are expecting the results to tell us that Gary's bone marrow is empty and not producing cells. There are several other possibilities but this is what we are expecting. If the marrow is not producing cells, there is no need for Gary to go through another round of chemo he will proceed directly to transplant. What does that mean we are not exactly sure.
Gary is pushing to be released from U of M on Tuesday- he is ready to come home. This will require lots of coordination among the many teams of specialists that monitor him daily. He will need to have his blood monitored frequently. Although his blood counts and fevers are not ideal for being sent home, they are not getting worse and the infections seem be under control.
We are anxious to see what tomorrow holds for us!

It is Sunday and I am feeling better

Hello Everyone,

The fevers are definitely going in the right direction. Although I spiked a fever in the night and we quickly added Tylenol and fever was gone.

I am not in pain but still need to rest.

The CT SCAN showed that all the lymph nodes are normal or very close to normal which is very good.

I am scheduled for a Bone Marrow Biopsy on Monday which will tell us why my blood counts are not recovering. Once we get that piece of the puzzle figured out I will have a clear direction on next steps.

It is pretty funny not having hair because my body is used to regulating my temperature but with out hair is seems I am slightly cool or hot. Tammy brought me Craig's skull cap which works to regulate the temperature.

I ask everyone to continue pray for no fevers, no infections, and increased blood counts.

Thanks for checking in,

Gary

Fever Starting to Behave

Hello Everyone,

After a bit of experimentation the doctors have finely got the right combination drugs (we think)! So, I have not been running fever for most of the morning. The only time I spiked a fever was when they gave this one drug called Zossin. The doctors decided to stop the Zossin and start me back up on Clindamcyin and Aztreonam which basically replace the Zossin but are chemically / biological different which is why I won't get a fever from the drug.

They have also scheduled a CT SCAN for today which will stage me to see if all my lymph nodes are reduced and if I have any issues in the gut (I don't but it will show it).

On Monday, I am getting a bone marrow biopsy to see what is going on in the the marrow.

If I can continue to keep no to low grade fever everyone around here will be much more happy because then they don't have to be so diligent about infection.

I can see light at the end of the tunnel but not sure how long the tunnel is.

Some of you might be wondering about how my spirits and attitude are and I can firmly tell you that I am positive, strong in faith, and feel very loved by my family and friends.

As always, all the prayers make the difference and I keep thank you for sending them my way.

Thanks for checking in,

Gary

I have been in the hospital too long!

Hello Everyone,

The past 15 days have been very difficult and tiresome. But, I feel all the infections are gone and I am really just waiting on my own immune system to increase.

I get mild fevers under 101 but we would like to see that regulate out to normal.

I have started to complain to the doctors that I want to get out but they are wise and tell me that they need a few more days to see why the numbers are not improving.

I have asked today about not doing cycle 2 of the Chemo and going straight to transplant. They are going to consider this because I had a Great response cycle 1. If I just wouldn't have gotten sick after chemo 1.

So, I would ask that everyone continue to pray for my blood counts to improve. I also ask that everyone pray that I go into transplant as soon as possible.

Thanks for checking in,

Gary

More Progress!

The doctor reported today that Gary's lungs have made remarkable progress- maybe even the most progress that he has seen in one day. He was able to sleep alot yesterday afternoon and in the evening. His platelet count was low in the evening so he received another platelet transfusion late last night.
WBC (white blood cells) went down to .3 this morning and ANC (infection fighters) disappeared again.
We moved to another room. After you are here for a while you learn the system. This room is much larger and easier to get around- same floor just down the hall.
I went home yesterday to a sparkling clean house and dinner on the counter. I haven't mentioned it in the blog lately but we really appreciate all of the help that we are receiving. So many people are stepping up daily to help us out, we couldn't do it without you!! I don't always know what to ask for but I like what is showing up!
Here's to another day of rest and increased blood counts!

Going Up!

The ANC was measurable this morning .1! WBC went up to .6. These are moves in the right direction. Gary feels better today and as the doctor said I am happy with the numbers but really pleased that you feel better.
Gary's lil sis from Denver came in this week and she spent the night with him at hospital. He slept much better. He has been sleeping as much as he can today. His body is working hard to heal itself.
We figured out the bed today. Gary is not a tall man and has a 29" inseam. His feet were hitting against the end of the bed. We kept asking how taller people can use this bed and they would try to get him to sit up higher in the bed. This morning the aid showed us the hidden button with key that moves in and out the end of the bed. Lesson learned: keep asking the questions, you will eventually get the answer that you are looking for.
No more significant findings in tests. Still wondering why fever is not going away. We have no idea when he will be released from hospital.

New Digs!

We moved rooms last night ready for a new setting well actually a new level of care. Due to unexpected arrival through ER, Gary was placed on a general internal medicine floor. Due to the fact that he is a cancer patient, he needs to be on the hemotology/oncology floor. The right doctors are important but knowledgable support staff is important also. We are on the Bone Marrow Transplant Unit (BMT) where low blood counts and blood transfusions are routine.
He has had some relief from the fevers. It does not go as high and has dropped in normal range at times.
His WBC is .4 today and ANC still not measurable.
Doctors feel that the current medication is working. Gary hates the antifungal med voriconizol due to side effects of vision issues. But it is the best fungus fighter the docs can find.
No further tests scheduled for today. He had a spinal this morning and we should get some results this afternoon.
Gary asks "can you just leave me alone and let my body rest and catch up?"
Jeremiah 33:6 I will heal my people and let them enjoy abundant peace and security.

It's Monday!

It was another rough night for Gary- it is impossible to get continuous sleep in the hospital the place that you need it most. I am on patrol today trying to minimize distruptions so he can sleep.
CTScan of his lungs this morning showed more irritation in the lungs- his meds have been changed to cover any type of lung bacteria/fungus.
He is still drinking and eating some throughout the day knowing it is important to keep nourished.
They have not been able to do lumbar puncture/spinal tap due to low platelets. Although he did receive a transfusion last night his platelets lowered to 34 and need to be 50.
WBC is .5 again and ANC not measurable. Enough time was elapased since neulasta shot so he will start neupogen shots today.

Another Day!

Another exciting day at Uof M for Gary. His fever reached an all time high of 105.1 this afternoon. We are still waiting for white count to recover it is .5-same as yesterday. His mind is quite out of it- I will have to write down some of the things he is talking about it might be funny someday.
He was having problems with peripheral vision in right eye. A few optholomogists checked it out and seem to think that the infection spent some quality time in his eye and left some blood residue. They will continue to monitor it and it should heal with meds that he is already taking. Although it could take awhile for his vision to be back to normal. Just another issue not as concerning as lymphoma.
He had a MRI of head this morning and it seemed to be clear. A spinal tap to look for more infections will be done as soon as platelets can be raised to 50.
We are beginning to think he would be better off without any meds and heal on his own. But unfortunately that would take white blood cells and neutrophils which he isn't making. This stuff needs to go away as quickly as it arrived!!

Making Progress

Hello Everyone,

I did not expect any of this.

Tammy has done a great job letting you know day to day stuff and sometimes hour by hour.

But, today I am going to tell you how my night was (Don't Worry It Will Stay Clean)

Tammy went home last night and I began to turn down:

Turn Down Procedure
Step 1: Doctor fixes a small leak at port removal site
Step 2: Get the three antibiotic drips and many drugs.
Step 3: Fever Returns 102.4 (Moving in the right direction)
Step 4: Receive Pain Medicine
Step 5: Labs at Midnight

After all this I did not sleep very well.

This morning has been less challenging.

Did the usual stuff (shower , breakfast) but is the unusual that is nerve racking:

- Meet with Hemo Dr at 6:00
- Meet with Infectious Di eases at 7:00

Here is today's plan.

1) Continue antibiotics and adjusting one
2) Stopping Anti-Fungal because it worked
3) Start New Anti Fungal to cover other stuff

And

1 Bag of Platelets
2 Units of Whole blood

Summary

I am worn out but continue to march forward with Tammy and God by our side to combat this.

Did you see the blog passed 10,000 hits, this means so much to Tammy and I that so many of you care and are sending us your prayers.

Thanks for checking in,

Gary

Short Lasting IV

Although Gary didn't like the idea of the mediport. He is already missing it. It is an easy way to give blood, get medication, blood products etc. It is accessed once and then "good to go" until discharge. They are now using an IV for infusion of medication. It is supposed to last about 4 days. Gary's blew out this afternoon in less than 24 hours. How did we know? Blood started coming out, I wont say gushing but enough. Hopefully this new one will last a few days.
We took a walk down the hallway- didn't like having him out in the sea of germs but he needed a little fieldtrip. Another disadvantage of IV is that it beeps alot with little movement.

Up and Down

The fever was down in the 100 range for most of the night. It started to creep up this morning and its now back to 103.1. We were happy to get temporary relief.
White blood cells dropped this morning to .5 and ANC .1. These are the disease fighters so they need to increase not decrease. Keep talking to God about that.
The doctors have identified one of the bugs in Gary and changed meds to kill it. They are going to be more strict with visitors in and out of the room- it is not a good bug to pass around. His outside vistors (that is you!) are also restricted until his white blood counts improve.

Port Coming Out!

We were trying to avoid taking out the port but now it is time. They have found another bacteria from blood taken from the port site which doesn't necessarily mean it is in the port itself but it is time to get it out. This is be a pretty simple procedure but he will first need to get pumped up with platelets. The purpose of the port was to get chemo treatments but a pic line can be used instead. We are not sure if they will be able to schedule the procedure today or wait until Friday.
The temperature is still pretty high. It does lower at times which he appreciates. They have switched some of his antibiotics.
He started anti fungal voriconazol and has had halucinations all night. It was kinda fun at first but getting old now. We are told it is not a long term thing just temporary.
His appetite still in not too great. He tried a supplement shake last night and did ok. Everything has a metal taste. Just a few weeks ago, I was trying to get him to stop eating junk and lose weight and now doing anything to encourage him.
Gotta go! Although Gary is not up to writing in the blog he is reading the comments. I was going to read them to him last night and he already had read them on his Iphone. We love all of the support- keep the prayers coming!

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!