Things have finally settled down with Sal.  He hasn’t had a fever the past couple of nights/days.  His counts are slowly going up, however he still has a severe headache from the spinal tap so he is still on pain medication.  He takes the dilaudid every two hours and the fiorcet every four hours (I think).  So if you call him and he doesn’t make any sense it is because he is still a little loopy from all the medication.  This morning he threw up, but the nurse thinks it is because he had several doses of the pain medication so we just have to make sure he eats before he takes his medication.

I am not sure if everyone knew what happened this week, but Sal was diagnosed with Sepsis and was in the last stage which is septic shock.  His blood pressure dropped dramatically and luckily the nurses were prepared for the situation.  Tuesday and Wednesday were pretty rough, but he has improved in the past few days.  The doctor said that this is not uncommon, but it is something that they hope doesn’t happen.  With each chemo treatment, this is a possiblity and this is one of the reasons that we have to wear the masks to make sure he doesn’t get sick.  This is also the reason he can not have any visitors that are even a little sick.

The doctors said that they are still waiting for his platelets to go up so that they can do a blood patch.  We are hoping after they do the blood patch it will relieve him from his headaches.

If everything is good, Sal will be home by the middle of this week or end of the week.  His doctor is on vacation for the next two weeks, but he said that Sal would be back for his next treatment in about two weeks after he goes home this week, so we are looking at the first week of September for round 4 of chemo.

His blood work for the past few days.

August 16, 2012

White blood count 2.0

Hemoglobin  8.8

Platelets 13

August 17, 2012

White blood count 6.8

Hemoglobin 8.4

Platelets 31

August 18, 2012

White blood count 6.8

Hemoglobin 8.3

Platelets 30

August 19, 2012

White blood count 7.6

Hemoglobin 9.1

Platelets 33

Today has been really rough for Sal.  This morning I got a call from him around 7am.  He was having difficulty talking because his breathing was so labored.  He said that during the night he spiked a temperature of 101-102 and that his blood pressure was low, and his heart rate was up.  When I arrived at the hospital the nurse explained to me that they called the emergency response team to administer a bolus to get his blood pressure up.  A bolus is where they force a lot of fluids in his IVs to help get his blood pressure at a normal rate.  At 5am his blood pressure was at 78/48 and he had a neutropenic temperature along with an elevated heart rate.  They started him on several new antibiotics, on top of the ones that he was already taking.  He is also on morphine every 12 hours and dilaudid every two hours for his headaches.  The neurologist came by today and examined him to see what may be causing the severe headaches.  They still believe it is the spinal tap, but they are running some more tests to make sure.  They are also going to do a MRI on his lower back because he has had lower back pain too.

The doctors and the ICU unit are keeping a close eye on him.  The ICU unit is being informed on his status just in case he gets worse and they have to take him to ICU.

As of right now his blood pressure has gone up and his heart rate is ok, the only thing right now is his temperature won’t go down.  They are going to get a cooling blanket to help keep his temperature down.

We will keep you informed on any updates.  Please do not call Sal’s cell they do not want him talking because they want him to rest as much as possible so that he can get through this.  When he talks his breathing is sometimes labored and they do not want him to exert that much energy.  I know people want to talk to him, but he does not feel like talking and he is on so much pain medication right now, he may not even make sense.

Also, please no visitors right now.  We do not want Sal sick at all right now, it could be deadly if he gets any other infection.

Thank you

Sal is still not feeling good.  He has a headache that they have to control with morphine and dilaudid every 2 hours.  He has had it since he got his spinal tap on July 31.  They can’t do a blood patch because it is too dangerous, because he could easily get an infection and his white blood count is only 0.7 so they really don’t want to do it, however since he is in so much pain the doctor is going to talk to the anesthesiologist.  The anesthesiologist will decide if it is too risky to do the procedure.

I decided to bring him some homemade spaghetti tonight for dinner, but I don’t think it agreed with him.  He threw up….which almost made me throw up.  After throwing up, he was still hungry so I guess that is a good sign.  We aren’t sure if he threw up because he ate too fast or if it was the medication that they gave him right after he ate.

We are still waiting for his blood counts to go up so that he can come home.  He had to have a platlet transfusion the other day, but that is the only transfusion that he has had this visit so far.

Luckily, Shark Week on Discovery Channel started today, so he has something to watch and he has looked forward to watching it.

We posted a photo of Sal on Facebook where he was wearing a beanie that our friend Nicki made.  We had several people ask where we got it, if you are interested in getting one you can visit Nicki’s facebook page Hooked on Headwear.

Sal is still doing his consolidation treatment and should be here for another week or more depending on how fast he recovers.

He has received daily neupogen shots since Tuesday.  The shots are a white cell booster shot. Neupogen is given in several injections on a daily basis, until your neutrophil counts come back to normal levels.

He is still having headaches, but they are only minor now…..he says except when his wife gets here they intensify….whatever

The past few days we have had to wear a mask when we enter the room.  His numbers have changed drastically due to the shot.  Because his hemoglobin and platelets are getting low, he may have to have tranfusions in the next couple of days.

August 7th

White Blood Count 1.6

Platelets  63

Hemoglobin 12.1

August 8th

White Blood Count  3.7

Platelets   37

Hemoglobin  11.8

August 9th

White Blood Count 1.4 (Normal 4-11)

Platelets  20  (Normal  130-400)

Hemoglobin  11  (Normal 14-18)

Last night was the last chemo treatment for this hospital stay.  We are now waiting for Sal’s numbers to drop and then they will go back up.  Once they are at a safe level, he will be able to go home.  This will be about a week to two weeks before this will happen.  He is still having headaches from the spinal puncture, but they are not able to do a blood patch to help with the pain because of the risk of infection.  So, he is on a small dose of morphine every 12 hours and is laying down flat most of the time to help with the headaches.  He was also prescibed caffeine pills for the headaches.

We are still waiting for the doctor to come by, so if anything changes we will let you know.

City of Hope is still looking for a match for Sal.  If you would like to register to see if you are a match for Sal or someone else, please go to marrow.org and register.  If you are not a match for Sal, maybe you can help save someone else’s life.  The more people they have in the database the easier it will help them find a match for someone’s loved one.  When you register, you can not specify that you only want to see if you are a match for Sal, it is a national database that is provided by donations.  If you can not be a donor, you may want to consider donating to the Marrow.org to help fund the expenses of the tests.

Here is a little information from the Marrow.org website that may help you decide if you would be able to register.

Patients are most likely to match someone of their own race, and people ages 18-44 are called to donate more than 90% of the time. More young people of diverse racial and ethnic heritage are needed now to help patients searching for a match.

Please visit the medical guidelines page to see if you are able to donate.  There are several medical conditions that will limit who can donate.

The Donor Search Process

Each brother and sister who has the same parents as you has a 25% chance of matching the patient.  Sal’s brother was not a match so we have to go outside the siblings.

However, 70% of patients do not have a suitable donor in their family. If you do not have a donor in your family, your doctor can search for an unrelated donor.  Your doctor can work with the National Marrow Donor Program^® (NMDP) to search our Be The Match Registry^® and other registries around the world — more than 18.5 million potential donors. Your doctor can look for adult donors in the same search of the registry and choose the option that is best for you.

This week has been a little rough.  On Tuesday, Sal started his first round of chemo.  Unlike the last time, he will only receive chemo on days 1, 3 and 5.  Today is his last dose of chemo!  On Tuesday, they did a lumbar puncture (spinal tap) to see if there is any leukemia in his spinal fluid.  When a person has M5 Leukemia, they have to check to see if the leukemia is in the spinal fluid.  As far as we know the results came back clear.

After the lumbar puncture, the patient is suppose to lie down at a slight angle for an hour to prevent headaches.  Headaches usually last 24 to 48 hours and go away on their own.  Sal did this, but he began to have severe headaches and upper back pain after the procedure.  They first started giving him Tylenol and dilaton.  This was not helping so Sal was given a small dose of morphin yesterday and today.  This has helped but it is still not helping enough.  Sometimes after a lumbar puncture a leak of the cerebrospinal fluid may develop.  The symptom of this problem is a headache that does not go away after 1 to 2 days. The doctor said that they do a procedure, blood patch, in which they will take Sal’s blood and inject it into the area where the leak is occuring in order to seal the leak.  We are not sure if they are going to do this procedure today or not.  The weekend doctor has not come in yet.

On Wednesday, the nurse that did his blood draw noticed that Sal’s potassium was too high.  So she called the doctor that was on call and he ordered to have Sal take a medication to help drop his potassium.  This made him really sick and he threw up.  Later, in the day they did another blood test and his potassium was too low, so he then had to take medication to increase it again.  Since then it has remained about the same.

His white blood count, platelets and hemoglobin haven’t gone down, they usually take a few days before they go down.  Once they start going down then we will keep track of them.

Sal knows that people want to come up and visit and enjoys seeing everyone, but since he hasn’t been feeling as good as usually he would like you to call before you come up.