June 11, 2022

It has been a week of ups and downs with this infection. When it seemed to be clearing up, it reared its ugly head again. We have been admitted to the hospital for a week now. To further complicate things, one of the leads on the new temporary line tested positive for infection. We were worried that she would need to have the temporary line removed. This would prove to be a huge problem because she does not have any good veins to access for a peripheral IV. She would need several IV lines to administer all of the antibiotics and fluids required to manage this systemic infection. 

Thankfully, at this point, they were able to save the new temporary line and clear the infection. We have received three negative culture tests, which means that she may be discharged this week if the culture labs remain negative. She received a dose of VinCRIStine (chemotherapy) this week, which will place her back on schedule for her chemotherapy regimen. The team decided to skip the dose she missed to maintain the treatment timeline. 

Carlene lost all of her hair in one night! It was very shocking to watch her pull all of it out. The surgery site for the enucleation of her left eye and removal of the tumor continues to heal. We have a long way to go for the site to be ready for a prosthetic eye. The picture below is a very candid photo of her current condition. All things considered, she is fighting with all of her might and winning the small battles in an effort to win the war!

One of the conditions of her being released from the hospital this week is that she receives antibiotic IV infusions, 24 hours daily. The antibiotic regimen for the type of blood infection Carly has requires constant infusion for 28 consecutive days. We are currently on day six. She will be discharged with a pump, antibiotics, and fluids. The administration of these items would be the obligation of the family. The medical equipment provider sends a nurse upon discharge to educate the family on proper protocol but is not responsible for administration. 

As direct pay clients, it is the responsibility of the family to purchase the prescriptions and supplies prior to discharge as they are provided by a third-party equipment supplier. This is another example of the financial strain that a cancer diagnosis ensues. We are currently waiting to get a final estimate on the exact cost, but have been informed that we can expect it to be upwards of $2500 for the equipment, prescriptions, and onsite education with the nurse. Administering the protocol while residing at a hotel will prove to be a challenge, but the entire experience has been filled with challenges.

Thank you all for your continued support. All of the emotional, spiritual, psychological, financial, and physical burdens that Carly and our family currently have to bare are made easier by the outpouring of love and support we receive daily.