The last three days have been quite the challenge. On Friday, September 2nd, Juliana had a prescheduled appointment at the Johns Hopkins Hospital/Clinic for blood counts and another echocardiogram. She's been having fluid build up around her heart since she received a bone marrow transplant on April 29, 2016. She gained, more than, 20 pounds of fluid after the transplant which lasted for months. Once they saw the, most recent, scan they were so alarmed they insisted on removing fluid from around her heart as it started to push on the heart making a part of it not function quite right.
Admittedly, the last few days were VERY stressful BUT, other than not being able to reach doctors quickly, the staff was kind and compassionate.
After the inserted a tube in the paricardium (sac around the heart) they drained 420ml of fluid. Over the following two days more than 300 more ml were drained. The fluid was sent to the lab to see if they can find a reason for why it keeps accumulating. Juliana has been waiting to go to Ocean City Maryland since, before, she got cancer for the 7th time in February 2016. Believe In Tomorrow has been very generous to allow us to use their condo on the Chesapeake Bay for the balance of this week. We hope Juliana's health will remain okay so she can enjoy a week or rest and fun without having to worry about hospitals. She is SO tired of fighting cancer and related health problems.
When the hospital staff were prepping Juliana to take the drainage tube out of her chest she was crying so hard. It was VERY painful to watch and not be able to help her even though the staff DID give her good pain medication.
Parts of this video are hard to watch. Our journey...Juliana's journey is duplicated in thousands of other children who are stricken with pediatric cancer EACH YEAR.
Since we got home, this evening (September 4), Juliana has been resting on the sofa. We HOPE and PRAY this heart issue can be resolved without surgery or having to put another drain in Juliana's chest and, also, that the cancer NEVER returns.
Love you all!