The good news is the MYCN is NOT AMPLIFIED! PRAISE THE LORD!
What this means is she still in the intermediate risk category and not the high risk.
The bad news is, we start a LONG LONG course of treatment.
We will be doing 8-12 cycles. Which means each cycle is 21 days long, we are admitted to Helen Devos for 5-6 days each cycle.
This is MONTHS and MONTHS of treatment. We will be doing a CT scan every 2 cycles and an MIBG every 4 cycles.
She will be receiving heavy doses of Cytoxan and Topotecan. These will be very hard on her, she will have to be hooked up to IV fluids the entire time we are in the hospital. She will be monitored the entire time. And we will be doing daily neupogen injections once we get home. And she will not feel well at all, it is a very very very hard chemo on anyone let alone an infant.
This will equal a lot of time away from Jillian.
This will equal tons of money for hospital expenses (not medical because Mallory is on Children's Special Health Care which takes care of her Cancer Related Care), for the gas to and from, for food and other basic necessities.
We are not asking for a hand out but if you can help in anyway our family sincerely appreciates it. I will be re posting "take them a meal" this is HUGE to us. We have a long road ahead of us the next 6 months at least, so if you can bring us something, get us gift cards for places at the hospital, or in anyway help us we need it right now. Grocery's for food for Jillian for when she is away from home. Small travel size supplies are wonderful as well, shampoo, conditioner, soap, toothpaste, toothbrushes, deodorant, disposable razors, etc. ANYTHING. Help with housework, anything, anything, anything!
I am STRESSING once again the importance of not being around our family if you are ill at this time, we cannot delay treatment due to Mallory getting sick. But we NEED help, so if you are well, have time please come help us. Mallory needs all of you, she needs us, and she needs you.
We are going to fight this, we are going to keep our chins up, we are going to get through this. It's just going to be crazy for awhile. I posted pictures from the day she was born, because this sweet baby HAS to see her 1st Birthday, she has to see many many many birthdays.
So we can celebrate just as much as the day she was born!
What this means is she still in the intermediate risk category and not the high risk.
The bad news is, we start a LONG LONG course of treatment.
We will be doing 8-12 cycles. Which means each cycle is 21 days long, we are admitted to Helen Devos for 5-6 days each cycle.
This is MONTHS and MONTHS of treatment. We will be doing a CT scan every 2 cycles and an MIBG every 4 cycles.
She will be receiving heavy doses of Cytoxan and Topotecan. These will be very hard on her, she will have to be hooked up to IV fluids the entire time we are in the hospital. She will be monitored the entire time. And we will be doing daily neupogen injections once we get home. And she will not feel well at all, it is a very very very hard chemo on anyone let alone an infant.
This will equal a lot of time away from Jillian.
This will equal tons of money for hospital expenses (not medical because Mallory is on Children's Special Health Care which takes care of her Cancer Related Care), for the gas to and from, for food and other basic necessities.
We are not asking for a hand out but if you can help in anyway our family sincerely appreciates it. I will be re posting "take them a meal" this is HUGE to us. We have a long road ahead of us the next 6 months at least, so if you can bring us something, get us gift cards for places at the hospital, or in anyway help us we need it right now. Grocery's for food for Jillian for when she is away from home. Small travel size supplies are wonderful as well, shampoo, conditioner, soap, toothpaste, toothbrushes, deodorant, disposable razors, etc. ANYTHING. Help with housework, anything, anything, anything!
I am STRESSING once again the importance of not being around our family if you are ill at this time, we cannot delay treatment due to Mallory getting sick. But we NEED help, so if you are well, have time please come help us. Mallory needs all of you, she needs us, and she needs you.
We are going to fight this, we are going to keep our chins up, we are going to get through this. It's just going to be crazy for awhile. I posted pictures from the day she was born, because this sweet baby HAS to see her 1st Birthday, she has to see many many many birthdays.
So we can celebrate just as much as the day she was born!
I'll be putting together a non-perishable food package within the week. Stay strong Mama!
ReplyDeleteGood news, bad news, but at least she is not high risk!!!!!!!!!! I have you covered as far as disposable razors, I have a TON of them, they are yours. I have toothbrushes, toothpaste, deodorant, body wash for both male & female, you name it, I have it. Ill get you all stocked up! Ill sign up for help with food, for help with Jillian with food, whatever I can do, Im willing to do whatever it takes to make it a little easier for you.
ReplyDeleteKeep the positive outlook, she will have many many birthday parties!
Let me know if you want the stuff brought to you or your Moms house.
hugs to all of you
I have been praying so hard for you to get GOOD NEWS, thank God!!!!! I want to help! Do you have a PO Box or address you give out to people?
ReplyDeleteI just realized that may sound a little weird, I would just love to send you some of the things you requested and some of the yummy organic baby food (which can be pricey) for Mallory - my little gal loved it. I am following your website through a friend on Facebook and would just love to help out! Heather
DeleteIt doesn't sound weird at all. If there were more people who had huge hearts out there like you, the world would be such a better place.
DeleteKids getting chemotherapy should not be eating organic stuff. There is more bacteria and fungi in them.
DeleteSMILE SMILE SMILE !!!!!!!!!!! Thank GOD she's in the same group! Thank God your done waiting! Thank God they have medicine. Thank God good people will help, and thank GOD you finally asked!
ReplyDeleteTy so much everyone...I know how hard this was for Ashley to write!! Everyone that is following Mallory and her fight and praying daily for her...I thank you from the bottom of our hearts!!!
ReplyDeleteLove Nana Crandle
CSHS will pay for transportation to and from the hospital. Talk with a case worker at HDCH, if you don't have one yourself. I know its not much, but any little bit helps. We are in and out of HDCH as well with our 6 week old. Praying hard for your family!
ReplyDeleteWe are in the process of enrolling in CSHCS and have been told they do mileage reimbursement for all of my little girl's appointments--every little bit helps!
DeleteWhat is your little girl's name? I want to add her to my prayer list as well.
DeletePraise the lord! I am so happy to hear the news that Mallory's cancer isn't amplified. I remember thinking that if the doctors originally thought it wasn't, let's keep that in prayers. They were answered. Mallory has a long road ahead of her, but she is going to beat this evil thing called cancer. Continuing the prayers for Mallory and your whole family in FL.
ReplyDeleteI'm so glad she wasn't high risk!
ReplyDeleteI can help out with a gift card for the hospital. I have been following Mallory through a Facebook freind and I think that you are a very strong person and I just couldn't imagine going through this. I will be praying for Mallory and your family.
ReplyDeleteI am glad to hear that she is not high risk! That is amazing.I have been following you since you posted something on BBC September Board. I know you will have a very hard road. I work in a Cancer department for adults and I know the regimin she is on is very hard on adults. Give her lots of loving and lots of care which I know you and your family will. Your family will continue to be in my prayers. I pray that this time around this treatment does what it's supposed to. May God give you the strength you will need for the next months. And keep your head up. Mallory will have many birthday parties!
ReplyDeleteMay Christ complete the healing! May God give you and your family strength! Toye.
ReplyDeletePsalm 5:1-3 Give ear to my words, O Lord, consider my sighing. Listen to my cry for help, my King and my God, for to you I pray. In the morning, O Lord, you hear my voice; in the morning I lay my requests before you and wait in expectation.
ReplyDeleteI'm praying for Sweet Baby Mallory and for you and Ryan...and waiting in expectation to hear of her full recovery. Renee