Slugs, Trees, Gates

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Slugs, Trees, Gates by Crystal & Naveen on Exposure

Day With Goats

Harley Farms Goat Dairy
https://cnn.exposure.co/day-with-goats

Update on Keira's Bloodwork

Quoted by Dr. E -- "It looks amazing"

Keira's neutrophil counts (the cells that fight infection) were severely low on Saturday. When we were discharged, they were trending in the right direction, but weren't sure how fast and how complete the recovery would be...could be weeks. After yesterday's blood draw, we got the counts back and they've skyrocketed back to the normal healthy range..."a lot of young and active cell growth" is what Dr. E also stated. Although we don't know exactly why they were so low, we're happy that they've quickly recovered.

Wanted to share the good news w/ everyone who's been following this saga 

Update on Keira - Discharged! - March 7

So as of yesterday, we were hoping that there was no infections detected, Keira's vital signs would remain stable, and that her neutrophil counts would be trending back up.  And today, we met all of these conditions and Keira was discharged from the hospital.  

There was no specific source of infection identified, but based on how the fever and cough presented itself, the doctors believe that it was some kind of viral infection (vs bacterial).  And there are literally thousands of viruses and the tests only detect a handful.  

The important thing is that Keira is feeling better and her neutrophil counts are continuing to trend back in the right direction.  They're still lower than normal, but very close to being out of the 'severe' range.  We will do another blood test on Tuesday and hope that this trend will continue.

Keira is back at home and playing with her sister Akemi -- they clearly both missed each other and it's great to see things return to normal, albeit crazy to think that just a couple days ago things were in a dramatically different place.  Makes you grateful for the things you have. 

Thanks again for everyone's love and support through this ordeal...we hope we won't have to go through it again.

Naveen + Crystal

Update on Keira - March 6

Well, we're back here at the inpatient clinic at LCPH.  We haven't been in this wing since Keira was first diagnosed and it's been an emotional couple of days walking through these halls.  We've come so far since those initial days 4.5 years ago, and are in so much of a better place, so in a way it's been a reminder of what we have to be grateful for.

And we're here now for very different reasons, but all of it's related.

Quick Summary

For those that want the quick summary, Keira has been doing well, her vital signs, energy level and appetite have been normal since we got here and her cough and fever have subsided.

However, part of Keira's immune system (her neutrophils) are severely low and we haven't detected the root cause of her fever or coughing.  To complicate things, the coughing/fever may or may not be related to the neutrophils. 

So right now we're waiting for test results to come back so that we understand what's going on and we also want to see her neutrophil readings trending upward before going home.  We're hoping to come home this weekend, but could be here much longer (like a week) if any illness is detected.  

Thank you to everyone for all the happy thoughts, prayers and words of encouragement. A special thank to Susanna, Oriana and Grayson for making Akemi feel like part of their family the last few nights. We're blessed to have so many people who are willing to help us on such short notice so that we can both be with Keira while we figure this out.

For the longer story, keep reading...

What Happened

On Wednesday evening Keira went to bed routinely.  She woke up a couple of times with a mild cough and easily went back to sleep, but around 1am, she woke up struggling to breathe, with a barky cough, and panicked.  While trying to calm her down, Keira started saying "I can't breathe, I can't breathe".  Having never seen that look of panic on her face, we called 911 and paged LPCH Oncology After Hours.  The paramedics were there in about 5 minutes.  

By that time, Crystal had walked outside with Keira to try and calm her down and in fact, she had. Keira was no longer coughing or panicked and as the paramedics checked out her vitals, all signs looked OK, however her fever had spiked to 102.4.   

Earlier that day we had kept Keira home because she had a mild fever, but no other indicators of illness, and in fact, Keira looked and felt fine.  She was eating and drinking well and had energy to play. We coincidentally had our monthly check-in with Dr. Effinger that afternoon, and there as well, she looked and felt fine (her fever had even subsided), and her OMS check-in went really well (fine/gross-motor tests better than they've been since treatment).   

We're very closely monitoring her immune system levels given that Rituxan has knocked out her B-Cells and she's immune suppressed.  We did a blood draw that afternoon and expected results to come in over the next day or so.  

Now, as the paramedics were evaluating her, LPCH On-Call had called back and was looking at some of the blood results and noted that her neutrophil count (the white blood cells that fight infection) were severely low - that coupled with the coughing/breathing fit, and spiked fever, we were on our way to LPCH.

What We're Doing

We need to figure out why Keira got sick and why her neutrophil counts are so low.  

These could be related but not directly.

The symptoms Keira experienced could be due to a viral or bacterial source.  After spending some time in the ER, Keira was started on an IV antibiotic and had more blood drawn to narrow down the source of infection.  They also did a chest x-ray, urine sample and nose swab.

The viral tests have all come back negative (but they don't detect everything).  Xray was clear and urinalysis looked great. So far the bacterial tests have also come back negative, but these cultures require a full 48 hours to detect any illness. 

Furthermore, it's unclear why Keira's neutrophil counts are as low as they are.  Rituxan could be the source of low neutrophil counts, although this is rare.  Rituxan knocks out B-Cells, so it isn't expected that her neutrophils will be low, however there are noted cases of this so its in the range of possibility.  

Neutrophils can sometimes go low due to virus activity but if this is the case, the virus would have most likely been active last week, not this week.

Neither explanation exactly fits with the current situation, and it could also be the case that there was a mild infection last week coupled with another one this week.  

Regardless, we should expect to see her neutrophil counts starting to come back.

Right now, we're waiting to see if there is any bacterial infection detected (and if so, we'll be in the hospital much longer for treatment of that) AND to see if her neutrophil counts start coming back.  

There is a chance that the tests don't detect a virus or bacteria, but the tests don't detect everything.  If there was an undetected source of infection, Keira's vital signs (BP, heart rate, temp, oxygen, appetite and energy level) are the indicator to see if it is still active, and those are all fine. 

How Keira Is Feeling

Keira has actually been feeling fine since we arrived at the ER.  The coughing has subsided, only detected a mild fever which has since subsided to normal and all other vitals look fine.  Keira is eating and drinking normally so for her, being hooked up to an IV and getting blood draws have been the main sources of discomfort.  But she's also filling her time with movies, coloring, reading, and playing pretend, so mostly she's doing fine ... and also missing her sister and her cat :)

How Akemi is Doing

Akemi has been a trooper through this as well.  I had to wake her up at 2am on Wednesday morning and tell her that she was going to Susanna's house (her sitter) to spend the night because Keira was on her way to the hospital.  Since then, she's been hanging out there and being very strong and brave for a three-year old who is without her family. She's having fun, but also missing her sister.

Next Steps

If there is no infection detected and Keira's neutrophils are trending upward, we could go back home Saturday or some time soon thereafter (depending on how fast her levels are coming back).

If there is no infection detected and Keira's neutrophils are not coming back, we may be here a bit longer to assess.  She may still be sent home Saturday but we'll monitor the levels frequently and potentially intervene with a drug that could stimulate neutrophil growth.  

If there is an infection detected, the type of infection and treatment will dictate treatment, but likely this will be at least a week.

Thank you again for all the love and support on this journey!

Naveen + Crystal