Our life in a Bubble

Germophobia: An apprehension concerning germs. Someone who has such a concern is often referred to as a "germophobe". 

Ok, so I have officially become a germophobe. And, I don't care if there is a negative stigma attached to the term. I have become a germophobe for the safety of our baby. If anyone thinks that I'm the crazy lady at the store because I'm wearing latex gloves ... so be it. Heck, I might even bust out a hospital mask if I feel the need as the cold and flu season arrives. This entire situation has really changed me because I don't care what others think of me anymore as I am living and doing these things to ensure the health of our child.

The last 2 visits to the hospital for Violet's blood tests have been a bit tough. Violet is a smart little nugget and she learned very quickly that if a nurse is going for her chest that means something bad is about to happen. So, she is definitely getting upset during her port access (sterilizing the area, sticking the needle/IV line in and then covering with a sterile plastic covering with a sticky tape all around to seal it) and de-access (removing the sticky tape, pulling out the line and covering with a sterile bandage). 

I don't use the word hate much at all these days ... but I really do hate this. I hate having to hold my baby down so she can't move while someone is doing something that hurts her. It kills me. I sing to her and try to distract her with her favorite toys. She recovers quickly, the tears stop when the nurse is done, but still, I'm sure the parents out there understand exactly what I'm saying. You know it's for their own good but that doesn't make the pain of the experience much less (if any less at all).

The results of Violet's tests last week showed what the doctor had expected for the most part. Everything had started to decline at pretty much the "normal" rate for what she is experiencing. The only exception was that her absolute neutrophil count was lower than anticipated for week 1 of chemotherapy. The doctor explained to me that maybe Violet was the type of person where her count declined quicker than most but then would show a recovery sooner than most within the month. That proved to not be the case after her blood tests this last Thursday showed they declined even more. 

Here is an explanation on ANC (absolute neutrophil count):

Neutrophils fight against infection and represent a subset of the white blood count. Neutropenia by definition is an ANC below 1800/mm3 (some sources use a lower value).  

Absolute neutrophil count (ANC) of 1000-1800: 
Most patients will be given chemotherapy in this range. 
Risk of infection is considered low. 

Mild neutropenia - Absolute neutrophil count (ANC) of 500-1000:  
Carries with it a moderate risk of infection. 

Severe neutropenia - Absolute neutrophil count (ANC) of less than 500: 
High risk of infection. 

The ANC refers to the total number of neutrophil granulocytes present in the blood. 

Normal value:  1500 cells/mm3.
Mild neutropenia: 1000 - <1500/mm3.
Moderate neutropenia: 500 - <1000/mm3.

Severe neutropenia: < 500/mm3 

Violet is in the severe neutropenia category. This is a category that we want her out of quickly. The doctor has explained to me that if Violet catches any common illness that can give her a fever she would need to be hospitalized for about 4 days to be treated. This would also make them look at having her receive shots after her next rounds of chemotherapy to up her ANC. I have been told that these shots are painful for the recipient as it makes your body increase production in bone marrow. We do NOT want Violet to need to get these. I would also have to administer these shots on a daily basis at home. 

Top priority is obviously to keep Violet free of illness. Please pray for that. We are limiting her visits to her family members only right now. Violet's doctor instructed to not have her around anyone that has been sick in the last 3 weeks or come into contact with anyone who has been sick. 

We are also having to limit our contact with groups of people so that we don't have a chance of getting sick ourselves. Anything and everything for our Violet! 

So, I saved GREAT news for last because, thank God, there is a light at the end of this unfortunate tunnel. When Violet was first seen by her oncologist he did a white reflex test. This was to view the glow from her pupil with a light that would allow him to see her tumor. He said that it was a lot harder for him to see this time than when he first saw Violet. He was pleased with this result because this is a sign that the chemotherapy is working to shrink the tumor! Praise God!

Let's keep lifting Violet up in prayer for complete healing. She has more blood tests next week and we pray that her levels are up so that she can safely begin another round of chemotherapy.

Thank you everyone for your prayers, donations, cards, emails, comments and love for Violet. Josh and I are always very grateful and appreciative of your loving actions.