I think at this point, all of you are aware of what has been going on with Charli…but I do know that not everyone has much detail. So I will begin to use this site as a place to update friends and family on her treatment as well.
Charli has recently been diagnosed with stage 3 neurolbastoma. We believe the original tumor began on or near her abdomen (as most do) and grew ‘backwards’ into her and around her spine. This causes a challenge, because it makes surgery difficult at best. This will only be used as our last resort.
Today (Saturday) she has successfully completed her first ‘cycle’ of chemo. It looks like we should be coming home Monday sometime. She will come back for a new cycle every three weeks, and be in the hospital for 2-3 days at a time. After one phase (4 cycles) Charli will have an MRI to determine if treatment has been successful, or if changes will need to be made. We are hoping that after 2 phases, the tumor located on and near her abdomen will be small enough to remove at that time. The mass surrounding the spine will be more sensitive, and I am not sure where that will take us.
I am sure that many of you have researched or at least ‘Google’d” it. Neuroblastoma is not exactly common, although percentage wise it is…considering the childhood cancers. It believe it makes up around 7% of all childhood cancers, but only 650 cases a year. What makes Charli’s unique is the location of the tumor in regards to her spine. What makes Charli lucky is how quickly it was caught, and how young she is. For some reason when children with these types of tumors hit one year old, things take a turn for the worse. We are very fortunate for catching it with months to spare before that date. In fact, I have not given up hope that she may be considered cancer free by her first birthday!!
Children are very resilient and take chemo, as well as other medications, much better than adults. I feel that so much of this is based on attitude – they are not pessimistic about medicine and do not know how to be negative!!! Children do face the same challenges with chemo as adults – but not each child experiences them. Charli may be sick and loose her hair…and she might not. We will just take each day as it comes, and take whatever the Lord gives us.
Charli is very strong in God’s eyes, to be given such a big task at such a young age. I can only imagine what God has in store for her in her years to come!!! We have so much to be thankful for in this situation. We are blessed with a great support system, not only in each other but also with our friends and family (and the outpour of support from strangers too!). We will not have to explain to our crying daughter why her friends can’t come over, or why they can not come visit her because they are sick. We will not have to see her cry because she is too tired and weak to ride her bike down the sidewalk. And, we will not have to explain to her why her hair is thinning and falling out. Nor will we have to try to help her understand why some people just do not understand what it is like to be sick. God bless the parents who have had to do these things, I am not sure I would be strong enough.
Although it is only the beginning, the road has been long – but manageable. I hope this information has been easy to understand… I am a bit fragmented lately!
It is extremely important to both Chad and I that you all understand how thankful we are for the prayers that have been said for our little girl. I wholeheartedly believe in the power of prayer, and I know that there has not been a lack of it in this case. And, we have had good things happen to show it. Also, the other acts of kindness have been overwhelming. The cards, gifts, phone calls, and visits have touched our hearts in a way that we can never repay. We can only hope that we will pass the kindness along to the next person, and the world will continue to be a kind and caring place to raise our children.
If you know of anyone who is interested in keeping up with Charli’s progress please feel free to give them this website to visit. I cannot gaurentee how often I will update it, but I will try to do as best as I can! Most of you know how to reach me, but if not leave a comment and I will get in touch with you!!!
I will get going now…this got a bit longer than I anticipated – and I am going to go watch my beautiful little baby girl sleep!
GOD BLESS YOU!
Charli has recently been diagnosed with stage 3 neurolbastoma. We believe the original tumor began on or near her abdomen (as most do) and grew ‘backwards’ into her and around her spine. This causes a challenge, because it makes surgery difficult at best. This will only be used as our last resort.
Today (Saturday) she has successfully completed her first ‘cycle’ of chemo. It looks like we should be coming home Monday sometime. She will come back for a new cycle every three weeks, and be in the hospital for 2-3 days at a time. After one phase (4 cycles) Charli will have an MRI to determine if treatment has been successful, or if changes will need to be made. We are hoping that after 2 phases, the tumor located on and near her abdomen will be small enough to remove at that time. The mass surrounding the spine will be more sensitive, and I am not sure where that will take us.
I am sure that many of you have researched or at least ‘Google’d” it. Neuroblastoma is not exactly common, although percentage wise it is…considering the childhood cancers. It believe it makes up around 7% of all childhood cancers, but only 650 cases a year. What makes Charli’s unique is the location of the tumor in regards to her spine. What makes Charli lucky is how quickly it was caught, and how young she is. For some reason when children with these types of tumors hit one year old, things take a turn for the worse. We are very fortunate for catching it with months to spare before that date. In fact, I have not given up hope that she may be considered cancer free by her first birthday!!
Children are very resilient and take chemo, as well as other medications, much better than adults. I feel that so much of this is based on attitude – they are not pessimistic about medicine and do not know how to be negative!!! Children do face the same challenges with chemo as adults – but not each child experiences them. Charli may be sick and loose her hair…and she might not. We will just take each day as it comes, and take whatever the Lord gives us.
Charli is very strong in God’s eyes, to be given such a big task at such a young age. I can only imagine what God has in store for her in her years to come!!! We have so much to be thankful for in this situation. We are blessed with a great support system, not only in each other but also with our friends and family (and the outpour of support from strangers too!). We will not have to explain to our crying daughter why her friends can’t come over, or why they can not come visit her because they are sick. We will not have to see her cry because she is too tired and weak to ride her bike down the sidewalk. And, we will not have to explain to her why her hair is thinning and falling out. Nor will we have to try to help her understand why some people just do not understand what it is like to be sick. God bless the parents who have had to do these things, I am not sure I would be strong enough.
Although it is only the beginning, the road has been long – but manageable. I hope this information has been easy to understand… I am a bit fragmented lately!
It is extremely important to both Chad and I that you all understand how thankful we are for the prayers that have been said for our little girl. I wholeheartedly believe in the power of prayer, and I know that there has not been a lack of it in this case. And, we have had good things happen to show it. Also, the other acts of kindness have been overwhelming. The cards, gifts, phone calls, and visits have touched our hearts in a way that we can never repay. We can only hope that we will pass the kindness along to the next person, and the world will continue to be a kind and caring place to raise our children.
If you know of anyone who is interested in keeping up with Charli’s progress please feel free to give them this website to visit. I cannot gaurentee how often I will update it, but I will try to do as best as I can! Most of you know how to reach me, but if not leave a comment and I will get in touch with you!!!
I will get going now…this got a bit longer than I anticipated – and I am going to go watch my beautiful little baby girl sleep!
GOD BLESS YOU!
9 comments:
Oh Brenda, you are so strong and brave! Thank you for the update. My family and I will continue to pray for a full recovery for your precious Charli. Wouldn't it be wonderful to be cancer-free by her first birthday?! Have faith in the Lord that he will heal your baby.
Hugs to you, Chad, and Charli.
Love,
Lauren and Tyler Borack
Oh Brenda you have me in tears! Charli is truly blessed to have a mom with such a positive attitude. You are so strong and have great faith, you are an inspiration! I pray that the Lord will continue to give you strength, courage, peace, and comfort during this difficult time. Lot of hugs to beautiful Charli.
Love,
Avery and Brynn Currie
I just wanted to stop by and show my support for your family.
My daughter was diagnosed with stage 2 Neuroblastoma at 18 months old. 6 months later she had surgery to remove her tumor and she has been cancer free ever since!!
Have faith and your little one will be cancer free as well!
(I stole your "Dear Babies of the World" post. I didn't take credit for it either) =)
Brenda, Chad and Charli,
I too believe in the power of prayer so you all have been in my prayers as of late. Your faith and positive attitude will bring you all through this, and make you stronger people. Keep us all posted and if you EVER need anything you know you can call or email me. LOVE YOU!
Tiffany
Hi Brenda and Chad, I just saw your message.
Yes, I do have a myspace that I just created actually. =)
http://www.myspace.com/ugartefamily
You can also email me anytime. I'll give you my email address through myspace messages. ;o)
It's me again... sorry. I just read my previous post and I needed to correct something.
Isabella was diagnosed with stage 3 not stage 2. =)
BRENDA, CHAD N CHARLI YOU ARE ALWAYS IN OUR THOUGHTS AND PRAYERS!! YOU KNOW IF YOU NEED ANYTHING JUSTIN N I WILL BE AROUND IN A FEW WEEKS!!ALSO WE WILL BE CLOSE 2 OMAHA WHEN CHARLI HAS HER TREATMENTS.KEEP UR CHINS UP!! LUV YA ALL,THE WIDHALM'S XO XO XO
Hi Brenda, Chad and Charli! I am thinking of you all today-and everyday! Thank you for your update and for keeping us all informed! I have so much faith that Charli will pull through this and persevere-children are so amazing! I too, believe in the power of prayer and so many people are praying for you all! The Lord has heard all of our prayers. I am thinking that cancer free by her first birthday would be the PERFECT Birthday present for you ALL! Lots of Love and Hugs to you.
Eric, Courtney and Landon Russell
I'm not sure if you guys have heard of this yet or not so if you have, please just ignore me. =)
There is a wonderful support group out there for the parents and family members of Neuroblastoma.
It's from acor.org Association of Cancer Online Resources.
You sign up your email address on the "LISTSERV" and you will start to receive emails daily from the people on this list. You can sign up through this link : http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=N-BLASTOMA&A=1
Just enter the email address you want to use (you will get A LOT of emails, so use one that you won't mind the load) and then your name.
Choose the type you want to get. I think I left everything on the default selections and then click "Join the list". You should receive a confirmation email.
Please let me know if you have any problems getting signed up. =)
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