Nelly's Story

Her journey with a GME diagnosis

Necropsy report

I got an email from Dr. Sullivan today with the results of Nelly’s necropsy.  There was no evidence of active encephalitis, but there was a proliferation of astrocytes in the left forebrain (in the same area shown on her original MRI).

The diagnosis from the pathologist was listed as: astroglial scar and astrogliosis, cerebral white matter and internal capsule; hydrocephalus ex vaccuo.

Dr. Sullivan wrote that she still needed to think this one over, but her current take on Nelly is as follows: She had Pug Encephalitis (also called Necrotizing Meningoencephalitis), with the white blood cell inflammation well-controlled at time of death.  Her progressive neurological symptoms were possibly from non-cellular components of the inflammatory response that were not controlled by the medications.

I’m not surprised that Nelly would be a bit of a mystery; hopefully, as more people look at her results, we will get a clearer picture of what happened.  And perhaps her case has provided valuable information for the future.

Ashes

Nelly’s ashes were delivered today by Cal Pet Crematory.  Even though Nelly’s spirit is here, it was nice to have what’s left of her physically at home.  She’s home now.

Preliminary necropsy results

Before we said our goodbyes to Nelly, we decided that we wanted a necropsy (or autopsy) performed on Nelly’s brain tissue.  We also offered ASG the option of using Nelly’s body to learn anything that they might find helpful, since they are a teaching institution.  Dr. Young, the critical care vet, asked if it would be okay to find out what was causing the bleed.  We gave consent that they could perform the necropsy to discover the source of the bleed.

The brain tissue samples would be sent to University of Missouri-Columbia for pathology.  We thought that was fitting because Nelly was born in Missouri, so part of her would return to Missouri.  Dr. Gayle Johnson would be the pathologist reviewing Nelly’s case.

Today, we received the results of the necropsy performed at ASG.  The source of the bleed was several tiny bleeding ulcers in Nelly’s stomach and leading into the duodenum.  These ulcers were likely the reason for the thickening in the stomach wall that was shown on the ultrasound.  Her other organs looked normal, even her liver.

We are still waiting for the results from the brain histiopathology.  These results will let us know what Nelly had been battling for so many years.

It was time to let Nelly go…

When we went to visit Nelly today, we were told that she had been vomiting and was aspirating it into her lungs. They did thoracic x-rays and could see the fluid in her right lung. She was developing pnemonia.

When I saw her, she was in an oxygen tank and her breathing was labored and she seemed so distressed. When she heard my voice, she looked over, but she wouldn’t relax when I started petting her. She smelled my fingers but wouldn’t lick them. That’s when I knew. She was in pain, and we couldn’t let her suffer anymore.

We held oxygen for her and said our goodbyes. I put my arms around her and called her all the affectionate names I had for her. I snuggled on her neck and scratched her favorite spot behind the ears. After a few minutes, she finally took a big breath and laid her head down. She was ready.

The vet came in and it happened so quickly and she went easily. When her heart stopped, I felt a big sigh of relief. Thank God. The pain is over. She is finally free. We gave her the last gift we could.

That was actually the easy part, because she was suffering so much. We knew we couldn’t let her struggle anymore.

But I didn’t anticipate the pain I would feel afterwards. I miss her so much. I can’t believe she’s gone. She was my world, and I wish I could just hold her again. She was such a good girl. She didn’t deserve this horrible disease. She fought so hard. Finally, though, she is free.

Update from Nelly’s first night at the hospital

We got a call this morning to let us know how Nelly is doing.

They monitored her anemia all night while giving her fluids.  At one point, her RBC count dropped to 14%, so they gave her a blood transfusion.  Her numbers jumped to 28% after that, but they had dropped into the low 20′s this morning.

They said that she definitely had a bleed in her GI tract.  (I can’t remember how they knew.)  So, since they believe the prednisone is causing the bleed, they are tapering her off the pred until she is no longer on it.  They’d like to get the bleed under control and get her stable enough for her next dose of lomustine, which would be in a week.  The prednisone has always appeared to help her neurological symptoms, so hopefully, she will be able to manage without it.

Her WBC count was 17,000, so the anemia is obviously not from the immune suppression since her WBC counts are still high.  She does not show any bands, which is a good sign that she does not have a bad infection.  Her platelets were on the low end, but the estimate was fine.  Her reticulocytes are still very high (300,000) so her anemia is still regenerative.  She did have some protein in her urine so they are doing a culture to see if she has a UTI.

The vet said that Nelly seemed to be perkier this morning.  We can visit her at 2.  They said she is not eating well for them and she actually vomited once.  But maybe she would eat better for us.

I’ll let you know how our visit goes later.

Admitted to the hospital

We brought Nelly in for her blood work this morning, and the neurology intern thought she felt cold.  Nelly’s temperature was 98 degrees F.

They ran a quick blood test to get her RBC count percentage and it had dropped to 22%, which indicates that she is anemic again.

They drew blood for a full chemistry panel and CBC, but they wanted to admit her because of her condition.  We agreed that it would be best to keep her under observation for the weekend.

When the blood work results come in, they will have a better idea of what’s going on.  Her anemia could be caused by a a GI bleed or from the immunosuppression.  We could have done an endoscopy to examine the thickness in Nelly’s stomach wall.  But if it showed a massive ulcer or mass, they would want to surgically excise it.  Right now, that’s not what we want for Nelly.  With the immunosuppression, it would be very difficult to heal, and we don’t want to cause her any more pain.

Right now, Nelly is getting fluids and if her RBC count drops too low, she will get a blood transfusion.  They are monitoring her blood pressure and heart rate and making sure the anemia does not get worse.

We’ll get an update in the morning, and we can visit her tomorrow.  We already miss her so much.  It’s just not the same without her at home.

Very tired

Nelly’s been really tired for a couple of days now.  She isn’t really interested in doing anything but lay around all day.

She’s still having some issues with stool leakage.

She goes to the vet tomorrow to get another CBC to assess the effect of the cytarabine.

New anti-nausea medication

Nelly started having problems again with stool leakage, so we called the internal medicine specialist to see if we could discontinue the mirtazapine.

She prescribed another medication for anti-nausea called metoclopramide 2.5 mg TID.  Hopefully, this medication will help with her nausea without the unpleasant side effects of the other one.

Getting fiesty

Nelly just finished her round of cytarabine injections yesterday.  Her ataxia seems slightly better, but it was pretty severe over the week.  She didn’t even want to walk or stand on the hardwood floor.  Now she feels confident enough to walk around, even on the slippery surfaces.

She has shown a lot more energy and spunk in the past couple of days; she is really fiesty when we try to feed her.  She’ll eat, but she throws her temper tantrums anyway.  Since she’s finally getting some nutrition in her, she’s getting stronger.  She gained a pound back this week, and that is wonderful news!

She didn’t have a bowel movement for several days (between Tuesday and Friday), and I could tell she was uncomfortable.  But last night, she finally passed a good amount of stool, and she seemed to feel so much better afterwards!

Finally, some decent blood work results!

Both the neurology department and internal medicine department called today to follow up on Nelly’s blood work.

Nelly’s RBC count is higher than last week 4.5 (still low).  HGB is 8.5 (low, but higher than before).  HCT is 29% (low) but was 26% last week.  The RBC morphology shows anisocytosis and polychromasia.  Her reticulocyte total is 8.8% (high) and absolute reticulocytes are 396,000 (high).  So her bone marrow is still producing tons of new red blood cells.  Her anemia is improving right now :)

Her WBC count is elevated again at 17.4 with neutrophils at 14616 (high) and monocytes 1392 (high).  They are not concerned, though, because she is on antibiotics and there were no bands this time.  That was more good news :)

Her liver enzymes had gotten even higher, though.  Her ALT was 469; ALKP was 939; GGT was 58.  She’s already on Denamarin, which would help the liver, so they added Ursodiol to help her liver even more.  It has to be compounded, though, so we’ll get that medication tomorrow.

Finally, her urinalysis was unremarkable.

Since her blood work returned with decent results, Nelly is cleared to have her cytarabine injections over the next 2 days.  The cytarabine and the lomustine will provide more immune suppression over the entire month.  Her dose will be 17 mg or 0.85 mL of cytarabine 100mg/5mL vial.

She’s still difficult to feed, but she is showing some signs of hunger now.  And since we are syringe-feeding her, she has finally gotten her belly back.  It’s good to see Nelly’s belly again :)

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