We have clinic in the morning, I continue to hope that she will continue to go without a fever especially since this weekend is Easter coming up and this family would like to spend a holiday with our family without thinking about cancer, blood counts, and etc etc.
But I am stocked up on sugar cookies, eggs, and stuff for subs if all else fails and we spend the day at home if her counts are not high enough to do anything. Hopefully this is the last Holiday we have to spend on house arrest if we end up staying home.
I had a WONDERFUL afternoon with my Mom today. We went and saw The Hunger Games, then went shopping. I am super excited since Ryan and I decided that we should post pone the wedding, I picked up some new dresses for our 7th Anniversary Vacation Vacation. Instead of the wedding we will have a no frills, no stress, and just NOTHING to do for hopefully a week. I just want to stay at a place near a beach, with a slider to an ocean or lake, and RELAX. It sounds amazing, I know it will bring the healing our relationship needs. We are managing, I am stressed, he is stressed, we have just not had ANY time for ourselves so I know this is just want we need. Cancer has taken a huge tole on this family but it will not defeat us, we have been through wind, fire and rain and we will stand tall at the end of all of this.
I am just praying that God looks after my little girl. There are many misconceptions about the word "remission".
Remission is the state of absence of disease activity in patients known to have a chronic illness that cannot be cured. It is commonly used to refer to absence of active cancer or inflammatory bowel disease when these diseases are expected to manifest again in the future. A partial remission may be defined for cancer as 50% or greater reduction in the measurable parameters of tumor growth as may be found on physical examination, radiologic study, or by biomarker levels from a blood or urine test. A complete remission is defined as complete disappearance of all such manifestations of disease. Each disease or even clinical trial can have its own definition of a partial remission.
Mallory still has a chance of the Cancer coming back after she enters the remission phase, she will not be deemed "cured" until there is no relapse of the cancer for 3 years after treatment ends. This scares the shit out of me. She has gone through so so so much and I pray that she falls into the 85% of infants that do not relapse but that 15% chance straight up frightens me.
I know everyone says "keep faith", "stay strong" and "think positive" but the chances of your child getting cancer is slim, and here we are talking about the dreaded "C" word about MY CHILD. So there is no guarantee that she will go either way all I can do is pray. I will however focus my energy once we get into the remission phase on having the best possible summer we can, knowing that it is out of our hands, that we just have to enjoy all the time we are given. Trust me, this family is going to have 1 HECK OF A SUMMER! Mallory is totally going to be rocking a 2 piece bikini, growing in some ADORABLE baby hair finally, and she will be finally able to go into WATER!
There are things I think everyone takes for granted when having a healthy child. There is a reason you NEVER see cute adorable bald kids running around, majority of them have severely compromised immune systems and cannot be in public places where the tiniest bug can cause an infection. Infections can be fatal. With a child with a broviac (the tube that is coming out of Mally's chest) they cannot have a normal bath, so in 4.5 months we have given her nothing but sponge baths and quick wipe downs. So if she smells bad blame it on the broviac. I have not been able to give both girls a bath together EVER, this is something I am SO looking forward to. We have spent more time in the hospital than at home since she was born. She has not slept through the night EVER, not even close. A good night for Mally is waking up 3 times (although I will TAKE it since for awhile there I was getting up 7-8 times a night). Jillian has been put to the sideline, what I deem one of the cutest, funniest years ever, I have missed so much of. It breaks my heart, I know that she is well taken care of by my parents when we are not there so at least it's a little less of a struggle. Jillian is constantly shuffled from place to place so there is no "normal" for her. I am too tired to do the dishes, laundry, or to even make food. So she has not had the healthiest living arrangements, I try my best but it's hard to see everything in ruins around my house, to not have fresh food (it goes bad half the time I TRY to buy it and to be quiet frank I just do not have the ambition to go to the grocery store every day I need something). So we have been living off of oatmeal, nutragrain bar's and yogurt smoothies with goldfish crackers and cheeze - it's for snacks. Could be worse I suppose? If Jill grows up hating these things, I won't blame her but for now it works.
I am ready for our life to go back to normal, although we will have clinic visits every month and scans every 3 months it will not be as hectic as being in the hospital for a week at a time, the numerous ER trips, and being able to leave our house whenever we want!
I am absolutely ecstatic that we were able to stay home this weekend, I have even managed to get Mallory out of the rock n' play and into her crib finally! Hopefully in the next 6 weeks things will start falling into place again.
LOVE YOU ALL! Toodles! :-)
Top Picture is Malibu and the bottom one is Jillian at the same age.
We sure do have some CUTE babies :-)
I am a mother of two and i have a baby boy who just turned 7 months on the 27th and i could not imagine going through what you and your family are living through. My heart aches for you.... You and your family are in my thoughts and prayers. May the Lord continue to give strength, courage and faith and may he bless your little angel Mallory with his healing hands a cancer free body.ReplyDelete
So great to hear that baby girl is home. It always makes a big difference on your spirits.ReplyDelete
Have you guys heard of this doctor? He specializes on what Baby Mal has. He is in TX and is codicting trials. I was talking about you with one of my friends an he provided the link.