TODD ADMITTED BACK TO HOSPITAL AFTER KIDS ARRIVAL TO HOUSTON

Group Picture: Picking up Ellie and Lewis at Hobby Airport, Houston

On Saturday, November 5, 2016, Todd woke up with a fever at the hotel!  We were planning on picking up two of our children from the airport for a weekend visit.  I started to take him to the emergency room, but after an hour, it went down.  He insisted on going to the airport with me anyway, but he felt so poorly that I had to wheel him in with his mask on.  The kids arrived and we were so happy!  We got a quick bite to eat, but Todd didn't feel like eating.  I was still concerned and make him pull the thermometer out of his jacket pocket to take his temperature.  He got sweaty and the fever seemed to break for good.  I took him back to the hotel while I took Ellie to the store.  When I got back, I noticed right away that his cheeks were red.  I asked if he was running a fever and he said yes.  I had already packed a suitcase for him earlier that morning and had it in the car just in case.  So we hugged the kids and were off to the ER.

Of course, they got him into a room and said that they were planning on admitting him.  They worked quickly to try to find the source of the fever: blood cultures, chest x-ray, urinalysis, etc.  When the doctor came in I told him I had been concerned that he had 0 platelets, which worried me about bleeding in the brain, or that he had an abscessed tooth from one of those cavities in his wisdom teeth.  He asked if Todd has had a scan of his head since we arrived or even recently, and I said NO!
So he decided to do a CT of the head. 

Sure enough, it was the CT scan of his head that showed a sinusitis infection in his right sinus.  This was not what I expected, or what they were looking for, but I guess it was a good thing that they did it.   The chest x-ray looked ok at this time.  After they got Todd into a room on the Leukemia Floor, I stayed until after 10 p.m. and drove back to the hotel to stay with the kids.  Of course, he needed blood and platelet transfusions too.  Luckily, I had called Todd's cousin Denise who lives in nearby League City earlier in the day asking her to help with the kids if I needed to take Todd to the hospital.  So, she was ready to come get them and take them to dinner.  It was the first time that they met, but they immediately hit it off with Denise and her two adult children Seth and Emily.  I was so grateful!

The next morning, I took the kids to breakfast and we went out to the hospital to sit with Todd. He was doing better.  The fever was down, but they wanted to do a nasal wash to test for the flu along with a second CT with contrast of the right head/sinus along with the upper chest to get a better look. I knew they were calling in a head and neck surgeon and an infectious disease team, but I didn't think they would do much else.  I wanted to spend some "fun time" with the kids, so I took them to the Galleria Mall to look around and get dinner.  I texted Todd and checked on him several times to see if he wanted me to bring him food, but he said nothing about what happened while we were gone.  We walked into the room and noticed dry blood all over the front of his shirt and cotton gauze stuffed up his right nostril!

While we were gone, they sent in a Head and Neck Surgeon to take a look at the sinus fearing a fungal infection; and without any warning or pre-medication, he stuffed a large scissors-like tool up his right nostril to biopsy the sinus infection!  Todd said it was the most painful thing he has ever gone through! After the biopsy, he got up to go to the bathroom, when he had a gushing nosebleed!  The surgeon had to come back in and placing packing up his nostril to stop the bleeding. I felt so bad that I wasn't there; but he said there was nothing I could have done (except insist they give him something for the pain!).  The only good thing the surgeon did do was walk down the biopsy to the lab himself so we could get the results right away.

Todd was very congested after this and having some post-nasal drip after the procedure.  He had been pretty upset at the whole experience and had no appetite.  Before me and kids left to go back to the hotel, the results came back that the biopsy showed a fungal infection!  I really didn't fully understand what made a fungal infection so horrible or what they would have to do to treat it.  The team of doctors immediately wanted to schedule an MRI to get even a better look!  Our first worry was that they would want to surgically remove the infection, but with Todd's platelets so low, we doubted that this was a real option. We learned that a fungal infection can travel to other places like the brain and the eye where it can be extremely dangerous!  We left him in his room about an hour after visiting hours, because the kids were going home the next day and were anxious to spend more time with him.  I had also decided to check-out of our hotel room two nights early.  Since the kids were going home on Monday afternoon, I didn't want to waste resources staying two more nights by myself.  I could just pack a bag and plan on staying with Todd in his hospital room.  I knew this meant staying up all night packing up the hotel room!

I found out the following morning that they had taken him down for the MRI around 1:00 a.m. on Monday morning, November 7, 2016.  Life here for Todd was getting more complicated by the day. After a quick hotel breakfast, I started loading up the car with our things and we all headed out to the hospital to see Todd.  When we arrived, we learned that Todd not only had a fungal infection in his sinus but they also found nodules in his lungs, which are indicative of a fungal infection. They doctors said it isn't uncommon for the fungal infection to drop from the sinus into the lungs.

The doctors continued to treat him with anti fungal IV medication but they want to try giving him white blood cell transfusions to help fight the infections. Todd still has zero white cells to fight it.  They sent a representative in from the blood bank to discuss the process of donating white cells.  We learned that there is no storage bank for white cells since they have no shelf life; they have to be donated and given to him within 24 hours. Unlike transfusing red cells, they don't care about matching the donor cells to the patient, but it is a multi-day process for a donor to get screened and to have their white cells harvested  It is very hard to find donors for this reason and usually only family and close friends are willing to go through such a rigorous process.  I will be going as soon as possible to start the screening process! They really like multiple donors but since we are not local it just might be me only who can donate on a limited basis. We knew that we couldn't ask our own friends and family so far away in Ohio.  Instead, we would have to rely on what family we had here and if we could get the word out to people who had friends and family here that would be willing to help.

I had already planned for Todd's cousin Denise to take the kids to the airport on Monday afternoon, November 7, because Todd originally had out-patient appointments and bone marrow biopsy already scheduled during that time at the hospital. Even though those appointments were now cancelled and Todd had been admitted to the hospital, I didn't want to leave him after I wasn't there during the traumatic biopsy!  The kids, Denise, and her kids went downstairs and had a quick bite to eat.  Then I walked the kids out to the car to get their luggage.  It was hard to say goodbye, but the visit was so refreshing and we all felt better having been together (even though we were missing Abby). 

Large Flag hanging inside the Galleria Mall, along with a view of the ice skating rink and shops.

And just like our time together is gone...

Little did we realize how long it would take to fight this fungal infection.  It was just beginning. 

Todd takes a Trip to the ER on Super Bowl Sunday

Sunday, February 1, 2015, Todd woke up with a roaring headache. I feared his blood counts were low and I urged him to let me take him in the get a CBC done and any necessary transfusions. He was stubborn and refused to go. He said he was getting a CBC the next morning and he could wait. I shouldn't have listened...

He stayed in the bed or sitting up in a chair the entire day. He took 2 Oxycodone tablets for the headache but he said they really didn't help. 

I was busy doing homework after taking out youngest daughter to volleyball photos. I came in with my laptop and sit with him a while, until it was time for my online class meeting. I worked on assignments after that til after 10:30 pm. He was ready for me to flush his catheter lumens a little after 11:00 pm. While flushing his lines I made him take his temperature. I noticed he had a folded up cold washcloth near his bed he was using as a headache compress. I got very concerned then. Sure enough he had a fever of 101.3. We both looked at each other and decided to take it again. This time it was 101.4. 

I grabbed my phone and had his local oncologist paged. I rushed around and started packing bags for both of us. I knew the protocol: any fever over 101 means a trip to the ER. After 25 minutes went by with no call back from the doctor, I had him paged a second time. This time the got him on the line while I waited. I explained the situation. He asked me what his counts were last Monday. And then he said to head out to the ER at Miami Valley Hospital and have the Fellow on call, Dr "C" paged so that Todd could be admitted. 

The girls helped me finish packing and we drove out. We arrived about 1:00 am and they took us back to a room after getting his vitals.  

They started the routine tests looking for infection: urinalysis, blood cultures, and a CBC  to get blood counts. They gave him some Tylenol to lower his fever and started him on IV fluids, and an IV drop of antibiotics.   They closed off his room and hung signs that anyone entering needed to wear a gown and mask.  Even me and my dad, who came out for a few hours, had to wear masks.

When it came time to do the chest X-rays, he didn't do so well. The doctor really wanted him to go have the X-rays done in the lab instead of having a portable X-ray machine brought to his room. Apparently, they can get better X-rays if he stands. So they wheeled him down to X-ray, but he ended up passing out and falling during the X-rays. They got him back onto the bed and back to his room in the ER. They took his blood pressure which was the lowest I had ever seen it: 101/48. He was broke out in a cold sweat, with beads of sweat all over. He was exhausted and started to fall asleep, which would cause his oxygen saturation to drop so they put him on oxygen. The ER doctor had a hard time getting the Fellow on Call, Dr. "C" to come in.  So, he had to ask me questions and then call Todd's local oncologist.  This was a bit frustrating. 

His blood counts were low: Hemoglobin 6.3; whites .7; and platelets around 13,000. His ANCs were about .5 making him neutropenic. This spoke volumes. Needless to say, Todd will be preemptive in the future to not let his counts go too low without having them checked in a timely manor. 

They did a type and screen for his transfusion and we made our way to his room on the Bone Marrow Transplant unit on the 5th floor about 4:00 am. I have to pause here and tell you the overwhelming sense of dread that came over me as they wheeled Todd up to his room.  Just the smell of the sterile environment and feel of the halls brought back memories of long days and nights at the Cleveland Clinic.  The Blood and Marrow unit at Miami Valley is so small in comparison.  This unit probably only has 10 rooms or less.  They don't do any allogeneic transplants here, just autogolious. However, the same hand washing and sanitation protocols are in place. 

They had to change his dressing and caps on his Hickman Catheter.  He had sweated through his shirt and even his catheter dressing (bandage) .  They started his blood, which came up as O+ instead of his typical B+  They had to use a universal blood type because that was all they had available.  The nurse said they throw away B type blood, because they don't use it that much.  It took all night to get the 2 units of blood.  They had the drip on slow for the first 15 minutes to make sure he didn't have a reaction to it, but they were supposed to turn it up after that.  I'm not sure they ever did.

At first they put an alarm on his bed, since he was now classified as a "Fall risk."   But, after some time, they turned it off.  He couldn't get up to go to the bathroom, so they had to give him a urinal by his to measure to his output.  It was the longest night.  I tried to fall asleep in the recliner chair next to his bed.  They brought me some heated towels which helped, but I don't think I slept more than an hour or so.  I had to set my alarm at 6:45, 7:00, and 7:15 to call home and make sure the girls got up for school.  I was so tired that I texted Hannah some kind of cryptic Emjois of faces and monkeys and misspelled words!  Freaked her out a bit I think.  I had the nurse get me a cup of coffee around 8:30 am and tried to rouse myself awake.  We had an appointment that day to meet with the Social Security Administrator at the Xenia office at 11:30, which Todd was adamant I keep.  The appointment was made months ago and it was to sign me and the girls up to receive benefits as part of Todd's Social Security Disability.

I drove home and cleaned up and made it to the appointment on time.  I got everything filed.  Even though they don't want to pay Todd the maximum he is due (because someone in Columbus, OH figures these percentage out!), we are signed up and should receive our first benefit payments on April 8, 2015.  That's still 2 months away!  It is days like this that reminds me how stupid it is for me to look for full-time job.  We still are living day-to-day without knowing what the next day, next week, or even next month holds.  I was supposed to teach 3 days this week, but had to cancel those days with everything going on.  I am also going to be restricted to how much money I can make and still receive Todd's social security benefits.  So, this needs to be taken into consideration too. 

Let me thank everyone who his still sending us anonymous gas cards and making deposits into the Todd Cade Care Fund.  Our church, Hillside Chapel has also stepped up this past month and helped us with some of our expenses.  God is good. 

I took a nap and then went back to the hospital early in the evening.  My parents brought me and the girls some food and then I went back to the hospital early in the evening.  Our oldest daughter Abby had to come back into town, so she picked up Hannah and Ellie and brought them out to the hospital.  After a good visit, I drove home with Hannah and Ellie and Abby headed back to UC.  It was one long continuous day!

A temperature leads to a visit to the Emergency Room

In Todd's fourth round of Vidaza, on day 2, August 12, 2014, he began to get chills and then spiked a fever of 101.5. Anytime a chemotherapy patient gets a fever over 100.4, you are advised to contact your physician because it can be a sign of infection. 

Todd had been having headaches with this round of Vidaza and was taking Tylenol about every 4-6 hours for relief.  He had been feeling flushed and hot mixed with chills.  He covered up with a blanket and then got ready for bed, taking another dose of Tylenol for the headache.  He still felt hot about midnight, when Abby was on her way to bed.  She went hug him and immediately felt heat from his body.  I grabbed the thermometer, and we took it several times to verify it before calling his local oncologist.  The doctor advised him to go to the emergency room to have it checked out. 

Todd was very reluctant to go, he was tired, and by this time the Tylenol was working to reduce his fever.  However, we were concerned that there still could be an infection and feared the Tylenol could have been masking the fever longer than just that evening.  The only thing that convinced him to go was that they could take blood work to verify an infection and that we didn't want to jeopardize the transplant process with an infection that could get out of hand if not treated. 

So, my daughter and I packed him up and took him to the emergency room at our local hospital.  They took blood cultures looking for infections, a chest x-ray, and a urinalysis.  Everything came back showing NO Infection, but his white blood counts were very low: 1%.

He was released after 4:30 a.m.  The flushing, headaches, and itching symptoms as a result of the Vidaza continued through his fifth day of treatment.  No 6th or 7th days of treatment was given in his fourth round due to the insurance cancellation. (See post).