And we are off! Round 4 of 6 begins
It was a quick turn around! After a wonderful 3 night beach get away, we zipped home Sunday afternoon to unpack, do laundry, grocery shop, and repack for a week away at The Ronald MacDonald House of Durham where Charlotte and I will stay this week as she has her out patient predose infusion. This round 4 of immunotherapy will be our last stay at the RMH in Durham because round 5 is only inpatient and round 6 is only at home meds!! We are checking off boxes as she keeps going, keeps moving you all! This round 4 mirrors round 2, which was the hardest one for our girl. We are hoping this one is a little easier on her this go around but only time will tell. We are truly feeling all of your continued prayers and loving thoughts for our Charlotte.
Finally, I learned through a parent support page today that this week is Neuroblastoma Awareness week. There is a day or week for every cause isn't there? It still sometimes feels like we are walking in a dream. Sometimes, we still close our eyes and ask "How is this happening? How are we here?" But then we realize we are one of the lucky ones at the moment. At least right now, today, we still have Charlotte and she is getting better. The truth is, she is also one of the not so lucky ones in that she has the most aggressive form of this disease, Neuroblastoma, and her prognosis is statistically the worst with her long term outcome being a coin toss. We believe this outcome will get better with current findings and research happening today. And we know she's not a statistic. She is blessed as are all of us who have been on this ride with her. If we share what we know, if we share our experiences, maybe just maybe one day the outlook will be different for all of the Charlotte's yet to come. There was a time our child didn't have cancer either. But this is where we are and there is only ONE reason we can say that life is BETTER after her diagnosis: it's because we have chosen to feel Gods love and grace within and around us every single step of this journey. ❤️🌈 So here is the International Neuroblastoma Awareness information regarding Charlotte's disease:
"June 12-18 is Neuroblastoma awareness week.
Neuroblastoma (NB) is a type of cancer that forms in certain types of nerve tissue. It most frequently starts from one of the adrenal glands, but can also develop in the neck, chest, abdomen, or spine. Symptoms may include bone pain, a lump in the abdomen, neck, or chest, or a painless bluish lump under the skin.
Neuroblastoma is by far the most common cancer in infants (less than 1 year old). It accounts for about 6% of all cancers in children. There are about 700 new cases of neuroblastoma each year in the United States. This number has remained about the same for many years.
The average age of children when they are diagnosed is about 1 to 2 years. In rare cases, neuroblastoma is detected by ultrasound even before birth. Nearly 90% of cases are diagnosed by age 5. Neuroblastoma is very rare in people over the age of 10 years.
In about 2 of 3 cases, the disease has already spread to the lymph nodes or to other parts of the body when it is diagnosed.
Survival rates are based on previous outcomes of large numbers of people who had the disease, but they cannot predict what will happen in any particular child’s case. The risk group of a child’s cancer is important in estimating their outlook. But many other factors can also affect a child’s outlook, such as their age, the location of the tumor, and how well the cancer responds to treatment. Your child’s doctor can tell you how the numbers below might apply to your child, as he or she knows your situation best.
Low-risk group: Children in the low-risk group have a 5-year survival rate that is higher than 95%.
Intermediate-risk group: In children in the intermediate-risk group, the 5-year survival rate is around 90% to 95%.
High-risk group: The 5-year survival rate in children in the high-risk group is around 40% to 50%."
Finally, I learned through a parent support page today that this week is Neuroblastoma Awareness week. There is a day or week for every cause isn't there? It still sometimes feels like we are walking in a dream. Sometimes, we still close our eyes and ask "How is this happening? How are we here?" But then we realize we are one of the lucky ones at the moment. At least right now, today, we still have Charlotte and she is getting better. The truth is, she is also one of the not so lucky ones in that she has the most aggressive form of this disease, Neuroblastoma, and her prognosis is statistically the worst with her long term outcome being a coin toss. We believe this outcome will get better with current findings and research happening today. And we know she's not a statistic. She is blessed as are all of us who have been on this ride with her. If we share what we know, if we share our experiences, maybe just maybe one day the outlook will be different for all of the Charlotte's yet to come. There was a time our child didn't have cancer either. But this is where we are and there is only ONE reason we can say that life is BETTER after her diagnosis: it's because we have chosen to feel Gods love and grace within and around us every single step of this journey. ❤️🌈 So here is the International Neuroblastoma Awareness information regarding Charlotte's disease:
"June 12-18 is Neuroblastoma awareness week.
Neuroblastoma (NB) is a type of cancer that forms in certain types of nerve tissue. It most frequently starts from one of the adrenal glands, but can also develop in the neck, chest, abdomen, or spine. Symptoms may include bone pain, a lump in the abdomen, neck, or chest, or a painless bluish lump under the skin.
Neuroblastoma is by far the most common cancer in infants (less than 1 year old). It accounts for about 6% of all cancers in children. There are about 700 new cases of neuroblastoma each year in the United States. This number has remained about the same for many years.
The average age of children when they are diagnosed is about 1 to 2 years. In rare cases, neuroblastoma is detected by ultrasound even before birth. Nearly 90% of cases are diagnosed by age 5. Neuroblastoma is very rare in people over the age of 10 years.
In about 2 of 3 cases, the disease has already spread to the lymph nodes or to other parts of the body when it is diagnosed.
Survival rates are based on previous outcomes of large numbers of people who had the disease, but they cannot predict what will happen in any particular child’s case. The risk group of a child’s cancer is important in estimating their outlook. But many other factors can also affect a child’s outlook, such as their age, the location of the tumor, and how well the cancer responds to treatment. Your child’s doctor can tell you how the numbers below might apply to your child, as he or she knows your situation best.
Low-risk group: Children in the low-risk group have a 5-year survival rate that is higher than 95%.
Intermediate-risk group: In children in the intermediate-risk group, the 5-year survival rate is around 90% to 95%.
High-risk group: The 5-year survival rate in children in the high-risk group is around 40% to 50%."
Getting ready for round 4 this am
Got her fanny pack pumping her meds 24hr a day infusion from today ending Friday
Resting before we have a room ready at RMH
A few more vacation pictures:
Our wave runners
Same pier and restaurant from Brian's family reunion back in 2010
Fair fun at the board walk
Charlotte was afraid of the little toddler rides because she had to go alone on them. she'd rather ride a little rollercoaster so she could ride with an adult ( and her brother and sister 😂)
Shades and snacks
Aquarium wonders are Fort Fisher
Petting a shark
Comments
Post a Comment