A portion of the facebook update on one of my precious patients <3 I hope you learn something from this mothers post and find it as inspiring as I have. Her name is Desi and you can follow her and family at https://www.facebook.com/Believingfordesi/
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We've been home for 10 days now. A few clinic visits, blood and platelet transfusions, neupogen injections to boost her neutrophil count and Desi had her PICC line removed due to the lumens not flushing and it just being more problematic than anything right now. Her poor arm looked like it was burned by part of the dressing, it's healed now but once it was removed, I just cringed, it looked so painful.
Not a day goes by that she doesn't have at least one anxiety/panic attack, sometimes several. It is horrible to witness. It is a challenge everyday with Desi but we are hoping with therapy, that one day soon she will be her happy, peaceful and carefree self again. We have been so blessed to find, who we feel, is the perfect child therapist for Desi and she has already had a few sessions. I know it will be a long road ahead of us but feel encouraged by the fact that she looks forward to and enjoys her sessions and she feels very safe and comfortable and I honestly can't ask for more than that. I try and attempt to look back and reflect on all she has been through and continues to endure and it brings me insurmountable waves of anxiety, so I can't even begin to imagine what SHE feels inside.
The upside to all this is that since we've been home, we've really just "been home", which is great because Desi doesn't like to be anywhere for too long and needs to be close to home right now. Big brother and sissy are home with us and we are getting to play catch up from the "too many to count" days apart.
We've been trying to get into a somewhat normal routine, taking turns taking the kids to school and/or picking them up, we got to meet Dejah's teacher and visit her classroom, we've ran errands, and Desi even went with me to the gym and did her first body pump class, she didn't want to sit around watching everyone in class, she wanted to be a part of it and amazed me by her drive to teach herself by watching others.
Over the holiday weekend, she got to swim for the first time since we were in Hawaii for her Make-a-Wish trip in June and she was jumping into the pool, playing on the raft, hitting the beach balls around, taking breaks in between to gather around and enjoy the bowl of Doritos and watermelon with her friends, she was just so happy to be having a real play date with her friends and family and man was my heart so happy seeing those rare moments of pure joy all over her face.
So what's next for Desi? I know that many of you have asked. In a few weeks, we'll return to NY to do her scans (MRI of brain, MIBG/CT scan and bone marrow biopsies). After that will be a few days of some blood testing to prepare her for the next treatment, NK cell trial. Since that is still almost a month away and we know how aggressive this disease is, we have to do something in the meantime, a bridge to the next treatment, so next week she will start a low dose chemo regimen, as long as her counts are where they need to be. This will be the first ever low dose chemo round Desi will have done and what's even better is that we have the option of doing this outpatient, which means we can come home each day. It will still be over 5 days, several hours each day and the drive is at least 2 1/2 hours round trip but to be able to sleep in our own bed, cook in our own kitchen, not have to walk down the hall to use a shared restroom and not have a space the size of a shoebox to store our food in, is all worth it.
This will be the 11th round of chemo for Desi, a chemo combination she had in rounds 1 & 2 and we are told that she won't develop the neutropenic fevers from this round, so I am hopeful and optimistic that she will breeze through this and not skip a beat.
It makes me physically ill to think of the number of chemotherapy drugs that have run through my little girl's veins and how she still to this day doesn't complain about these treatments, she just trusts us THAT much that she doesn't question why.
She gets depressed when we're inpatient, she gets irritated with the nurses when they have to mess with her lines or when she's trying to sleep and they wake her up out of sleep to get her to take her meds when she's feeling like crap but she has never told us that she doesn't want to fight anymore. With each treatment, and each month that goes by, I admit, that is a very real concern of mine. I know I would've thrown in the towel over a year ago. But these kids, they are absolutely amazing! They don't know anything else BUT to fight, they are so innocent and have no idea the severity of a Stage IV cancer diagnosis so death isn't even an option for them, giving up is never an option for them, they trust us and keep going off of our love and support alone... That is unbelievable.
I look at how much she's changed physically and it breaks my heart. The conversations she has with us and the vocabulary she has now is just mind-blowing. I don't think we will ever get our innocent little girl back. Cancer has done irreparable damage to her and to our family. The things her brother and sister have seen and have had to hear, I have no doubt gives them nightmares. It is not just Desi's emotional state that I worry about but theirs too. So often they are forgotten about or left out and I know they never wish to trade places with Desi for that alone but I do know they would so that Desi could have her health and happiness back.
My prayers are for countless families that are going through my worst nightmare right now. I can't stop thinking about the sheer terror they are living each minute.
September is Childhood Cancer Awareness Month. If you're seeing gold and you're wondering why, that is what gold represents. I will be the first to admit that I didn't know anything about Pediatric cancer before Desirae was diagnosed and hopefully you'll never have to know this life like we now do. It is devastating how many children are losing their lives each day.
