Sunday, June 19, 2016

Roller Coaster of Emotions..........

The last month has been nothing short of a roller coaster. You know the kind that jerk you all around and you wish it would stop? So much has gone on with Bella (victories and set backs) that I'm not sure where to begin. First, I have to tell you how proud I am of Bella because she achieved distinguished honors EVERY marking period this year. She didn't let the 38 absences and 13 tardies for appointments get in the way of her goals. It was hard work........she had to teach herself a lot of missed lessons. stay up late to study and complete projects, and get tutoring help from a great friend (thanks Kylee). I have to express something about Miss Bella that some may not always notice, her strength. You always know that a person with a chronic illness is strong and take on alot in their lives. We have to carefully plan out treatments, medication, trips, school, and extra curricular activities. If we don't put thought into all of these things, it could make Bella extremely tired or put her at risk for getting sick or an infection. But there is always those unexpected things we can't prepare for and catch us off guard. Like last week, Bella tested positive for Pertussis (Whooping cough) and we went into panic mode. Most of us had the vaccination for the whooping cough when we were children (as did Bella) and it isn't likely that we will get it. Whooping cough doesn't often present in older children (usually just babies), unless of course you have an immune suppressed child. Bella is on a low dose chemo therapy and a biologic infusion that are immune suppressant and this made her body not strong enough to fight off this bacterial disease. We try to be vigilant and ask people that are sick to stay away, but we also know some things are unavoidable. Like our surprise diagnosis of whooping cough. Bella didn't present the usual symptoms of whooping cough in the beginning stages and the doctors thought she had allergies. As the cough worsened, we decided to take another shot at seeing the doctor. They did a chest xray to rule out pneumonia and found inflammation in her lungs. They also did a test for whooping cough and she tested positive. This is a fast spreading disease and is extremely contagious so they acted quickly to treat Bella. We got a call from the Department of Health 15 minutes after our diagnosis. After a 30 minute conversation I found out everything I could about whooping cough, was told anyone that spent an hour or more in close proximity with her over the last week needed to be contacted as a precaution, they would contact all of her doctors she saw over the last week, and Bella wasn't permitted to travel until the end of her treatment. So the entire family was put on a dose of antibiotics and we had to keep Bella home until she was past the contagious stage.....she is no longer contagious. But she has the most awful cough that makes her vomit. They are strong coughing spells that you can't control. It has also made her extremely tired and makes her eyes swell from the excessive coughing. The nurse told us that it is the 100 day cough and it will be awhile until she is rid of this cough. The antibiotic doesn't cure the whooping cough it only kills the bacteria that is contagious. Great huh? Needless to say, she doesn't sleep well at night because the coughing wakes her from sleep. She is handling it like a trooper and is happy that she can hang out with her friends again finally. I encourage you to look on the CDC website for more information, many children are misdiagnosed. Before all of this we were working on getting her proper treatment for her newest diagnosis, POTS. We had an appointment scheduled with a specialist at CHOP and our insurance refused to pay for this visit. They referred us to a specialist close to home and we went. The new cardiologist told us right away that he didn't specialize in POTS but treated many kids in her office with this condition. We agreed to give his treatment ideas a try and if it doesn't work he will help us get the referral we need. Fair enough. So we tweaked her meds and we are looking into alternative therapy. Wish us luck! You always think that when your child is diagnosed with a life long disease that you have faced the hardest challenge. We now stand corrected. Trying to mend the broken heart of your daughter when she finds out her dearest friend lost her battle with cancer has been the hardest challenge. The day we got the call from her friend's mom was one of the hardest days our family has encountered. Not only did Bella loose her friend, she lost one of her biggest supporters. It's not an emotion I thought I would ever go through with my 13 year old and my other children at such a young age. For the first time a couple of weeks ago Bella had to make her first trip back to the hospital where she use to visit Emilia after her infusions or meet her for lunch at their favorite greek restaurant. It was a hard day, but one of her friends (thanks Noelle) volunteered to accompany Bella to her infusion and keep her company (and had a surprise from Emilia's mom to make the day a little easier). Thank you to her sweet nurses for being a great support system for her too (they all knew/loved Emilia too). I imagine every trip to the hospital will spark these emotions but we have decided to start a new tradition with friends and we will carry Emilia in our hearts (and wrap her warmth around Bella during her infusion). Emilia's parents are close friends of ours, so our hearts ached for them as well. Her brother, aunt, uncle, cousins, and grandparents have all become a part of our family over the last couple years as we all joined together to be a support system for Emilia. Emilia inspired my family to be more compassionate, caring, and loving. She gave me the inspiration to get a group of wonderful ladies together to form HH4E. Emilia brought so many of us together and I am so thankful for the friendships I've gained. We didn't know how important these friendship would be until 1 month ago today. Thank you Emilia for bringing the best out in all of us and for bringing our families together. Though Bella still struggles with missing her friend, she also loves to share videos, pictures, and memories of Emilia with us. I was shocked the day Bella told us she texted Emilia's mom and asked if they could hang out together one day soon. I am in awe of Bella's maturity/strength through this and I'm more thankful that Emilia's family wants to continue to be a part of Bella's life (and Emilia's other friends). Sweet Emilia holds a special place in our hearts that will forever live on. Thank you to everyone who checked in on Bella the past month. I shared every text and message you sent to congratulate her, offer condolences, and all your well wishes. Your support means a lot to her and our family. Don't forget to give blood, it saves lives. You will never know when you or someone you love will NEED blood to survive (that's a plug for Emilia's mom).