When a virus is good news
The old adage “no news is good news” holds true for Miss Charlotte at the moment. I had to press Memorial Sloan Kettering team with a few emails and a cattle prod ☺️ to have them get back to us on their read on Charlotte’s latest scans in December. I’m sure they reviewed them earlier then we heard but since they “had no concerns”, quoting their email, we celebrate that our girl does in deed have clear scans 3 months post treatment. Are we really going to be going through this breath holding time every 3 months for a year? And then every 6 months for a couple more years? I suppose we will but I suppose that’s all part of being on this side of the battle and we are truly just greatful for the fight, for the waiting, for the worry, and for all the days LIVING in between it all. Life will never be the same but in some ways it is just BETTER.
Speaking of never the same..,cue Charlotte’s FIRST non treatment related fever she spiked yesterday. It’s almost unheard of, how healthy she has been. Besides a quick stomach virus last spring that ran through our house, she hasn’t had anything but a little runny nose cold! And she’s been in Preschool for 3 months now too! We like to think it’s because her immune system is in fact strong and working great! But, here we were yesterday, watching her cheeks grow flushed and her temperature creeping up and up, wondering and worrying and watching. She is not caught up as far as immunizations, could she have contracted something major? Could it be the flu? Or worse? I woke at 2 am, mother’s never sleep all night if one of their babies are sick, and I went to check on her. 104.3 degrees😩. My stomach sank and I woke her to give her Childrens Motrin and to sip some water. “I okay, can I go back to sleep momma?” “Of course, goodnight baby I love you”, I whisper. And then of course, I toss and turn and worry. But....NEWS FLASH MOM AND DAD! She is 4. She WILL come into contact with viruses and little infections common in childhood. She gets to have a fever and it not be a 5 alarm fire drill heading to the hospital. She gets to feel crummy, and it’s not cancer rearing it’s ugly head. Charlotte getting sick will never be the same for us. Our minds will always race and worry and perhaps jump to unfounded conclusions...atleast for a while. And then one day, they won’t.
So our girl woke cool as a cucumber this morning. Padded across the floor for a cuddle with a sleepy smile. Ate a bowl of oatmeal and ran off to play in a fort under our dining table she helped her brother and sister build yesterday in which they now have a secret group meeting inside that they call “Kids Corp”. I hope her temperature stays down today and that it was just a quick virus. A nonevent. And another example of what normal life tastes like again when a child can get sick and it not go to a dark place. I suppose this was our first official taste of that. Thank you God!
So, what is coming up for Charlotte? We have several things. In 3 weeks, we go back to NY for her to have a bone marrow biopsy and to receive her 5th injection. Then, in mid March she has scans again. During scan week, she also has some other assessments like an echo to check her heart and more audiology tests to see where we are with hearing loss and if she will in fact benefit from a hearing aid at this time. And we will have her titers drawn in clinic to check to see which antibodies she still has to determine which immunizations she has retained and which ones we need to catch her up on. But for now, our girl has begun Ballet! She’s in 2 morning a week Preschool! She’s asking to have friends over to play! She’s full of life and energy and spirit! We are so grateful for all of your prayers. Please keep them coming 🌈
Finally, we have a hopeful update from Riley Rose’s family:
For those of you who have cared and prayed for little Riley Rose, the little girl I have grown to care about who is also fighting Stage IV Neuroblastoma....there is a new and hopeful update🌈 After progression of her disease and what appeared to be a hopeless situation because it was believed her bone marrow wasn’t producing it’s own blood products correctly and therefore with all her requirements she didn’t qualify for any further treatment, she was sent home on compassionate care. Her family pushed and pushed and there is now some hope. They did gray spot radiation to her new spots while starting a new med to heal her marrow. They found a God send of a doctor doing incredible things for kids like Riley (Dr Scholler) in Michigan to take a look at Riley’s case. They rescanned and one of her new spots is gone and they determined her bone marrow is fine but it’s an autoimmune response killing some of her own blood cells which can be treated with various medications! They have a new trial she will qualify for! She will keep going, keep moving to overcome. Her family has been through an unimaginable rollercoaster that has never slowed down. It’s just incredible and I wanted to let y’all know! I believe in miracles, in parents who won’t give up, in medical teams who give hope, and in this little Riley Rose who is determined to overcome all odds. Thanks for taking the time to raise this family up in your hearts, as you do our own❤️
Speaking of never the same..,cue Charlotte’s FIRST non treatment related fever she spiked yesterday. It’s almost unheard of, how healthy she has been. Besides a quick stomach virus last spring that ran through our house, she hasn’t had anything but a little runny nose cold! And she’s been in Preschool for 3 months now too! We like to think it’s because her immune system is in fact strong and working great! But, here we were yesterday, watching her cheeks grow flushed and her temperature creeping up and up, wondering and worrying and watching. She is not caught up as far as immunizations, could she have contracted something major? Could it be the flu? Or worse? I woke at 2 am, mother’s never sleep all night if one of their babies are sick, and I went to check on her. 104.3 degrees😩. My stomach sank and I woke her to give her Childrens Motrin and to sip some water. “I okay, can I go back to sleep momma?” “Of course, goodnight baby I love you”, I whisper. And then of course, I toss and turn and worry. But....NEWS FLASH MOM AND DAD! She is 4. She WILL come into contact with viruses and little infections common in childhood. She gets to have a fever and it not be a 5 alarm fire drill heading to the hospital. She gets to feel crummy, and it’s not cancer rearing it’s ugly head. Charlotte getting sick will never be the same for us. Our minds will always race and worry and perhaps jump to unfounded conclusions...atleast for a while. And then one day, they won’t.
So our girl woke cool as a cucumber this morning. Padded across the floor for a cuddle with a sleepy smile. Ate a bowl of oatmeal and ran off to play in a fort under our dining table she helped her brother and sister build yesterday in which they now have a secret group meeting inside that they call “Kids Corp”. I hope her temperature stays down today and that it was just a quick virus. A nonevent. And another example of what normal life tastes like again when a child can get sick and it not go to a dark place. I suppose this was our first official taste of that. Thank you God!
So, what is coming up for Charlotte? We have several things. In 3 weeks, we go back to NY for her to have a bone marrow biopsy and to receive her 5th injection. Then, in mid March she has scans again. During scan week, she also has some other assessments like an echo to check her heart and more audiology tests to see where we are with hearing loss and if she will in fact benefit from a hearing aid at this time. And we will have her titers drawn in clinic to check to see which antibodies she still has to determine which immunizations she has retained and which ones we need to catch her up on. But for now, our girl has begun Ballet! She’s in 2 morning a week Preschool! She’s asking to have friends over to play! She’s full of life and energy and spirit! We are so grateful for all of your prayers. Please keep them coming 🌈
Finally, we have a hopeful update from Riley Rose’s family:
For those of you who have cared and prayed for little Riley Rose, the little girl I have grown to care about who is also fighting Stage IV Neuroblastoma....there is a new and hopeful update🌈 After progression of her disease and what appeared to be a hopeless situation because it was believed her bone marrow wasn’t producing it’s own blood products correctly and therefore with all her requirements she didn’t qualify for any further treatment, she was sent home on compassionate care. Her family pushed and pushed and there is now some hope. They did gray spot radiation to her new spots while starting a new med to heal her marrow. They found a God send of a doctor doing incredible things for kids like Riley (Dr Scholler) in Michigan to take a look at Riley’s case. They rescanned and one of her new spots is gone and they determined her bone marrow is fine but it’s an autoimmune response killing some of her own blood cells which can be treated with various medications! They have a new trial she will qualify for! She will keep going, keep moving to overcome. Her family has been through an unimaginable rollercoaster that has never slowed down. It’s just incredible and I wanted to let y’all know! I believe in miracles, in parents who won’t give up, in medical teams who give hope, and in this little Riley Rose who is determined to overcome all odds. Thanks for taking the time to raise this family up in your hearts, as you do our own❤️
Ballerina at her first class! To say she loved it is an understatement
She so loves her brother and sister
The rainbow post it’s she made for God (in the last blog)
The ballerina picture makes me smile from ear to ear. Hope Charlotte is still feeling better!
ReplyDeleteXOXOXO Such great news! Keep looking up!
ReplyDelete