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Brianastrong!!

Our sweet Bri is doing so good!! She had another hearing test and more blood draws on Tuesday. Her hearing is still perfectly healthy in her left ear ๐Ÿ™Œ๐Ÿ™Œ
It's hard to believe but next month she will have her 3 month scans!!!!! Now that life is slowly getting back to "normal" and slowing down, we are more and more grateful.
No more daily tubie flushes, weekly dressing changes, several daily meds, constant worry of fever or sepsis, TOXIC drugs being pushed into her little body, packing several BINS to move into the hospital for weeks at a time- and that's just to name a couple daily stresses. But we did it. SHE did it! ๐Ÿ™Œ๐Ÿ™Œ๐Ÿ™Œ
God has healed my baby!!!! He has given us strength that we never knew we had. Thank you Lord!!!
Thank you to soooo many amazing people out there praying for us!
#brianastrong
#kickcancersbutt[...]

Scans!

Bri was up bright and early excited for her "dizzy pictures". They just took her back to get her MRI, CT, and MIBG scans then she will head to surgery for her bone marrow biopsy. We will have results by tomorrow, please pray everything comes back CLEAR and we can move forward with the DFMO maintenance trial. I have no words to describe how we feel. It's a combination of fear and excitement. We are so happy she no longer has to go through these horrible treatments but so terrified to move on to the next chapter, trying not to think of relapse and live a "normal" life. We don't know what normal is, but with time and prayers we will find our peace. Thank you all for so many prayers over the last 16 months, please continue to pray for our sweet girl!
#brianastrong
#kickcancersbutt[...]

Post 1 of 2

Sunday 08/05/2018-We got to the ER around 2 am for a fever, chills and vomiting. Hopefully this will be the last time we have to panic over a fever since her lines are coming out soon! Ugh it's now 4 am and we are waiting to be admitted back in 6A! Please pray it's not a line infection and we can be back home within 48 hours![...]

Post 2 of 2

Pseudomonas Oryzihabitans. The name of the bacteria that was in bris lines. Of course it's another unusual bug, BUT the good news is it's treatable with oral antibiotics!!!! The IV cefepime she has been receiving does work better and so far her last cultures are over 24 hours of no growth. So it seems it has pretty much cleaned it out for the most part. ๐Ÿ™Œ So she will be NPO at midnight and have her surgery tomorrow!!!!! We have no idea what time it will be but it is a very simple procedure. (They would usually do it bedside for adults!๐Ÿ˜ฑ)
But this was just another reality check that this is not over! And this is why we never let our gaurd down, we were sent home Saturday singing and dancing for no more complications. Then Sunday at midnight we were headed to the ER for another week stay. ๐Ÿ˜’ Yes, chemo is over but complications will never be over. 
Thank you all for your prayers, as this could have been a life threatening situation at any other point during her treatment. But her counts are good and she is feeling good! So thank you God!!!![...]

Cycle 5


So  brianas last admission will be tommorow! She will finish up cycle 5 of immunotherapy. Cycle 6 will be out-patient and at home meds! We are so proud of Bri! I cant even put into words how far she has come, not just with treatment but with being a toddler and  learning patience after MANY, MANY hours of waiting in exam rooms or waiting rooms or pharmacy lines. She has missed out on a lot of childhood normalcy in this last year but she has also had to grow up very quickly. And we couldn’t be more proud with how smart, loving, caring, polite (when shes not on steroids or accutane lol)  she has already proven to be. She doesn’t even need to be told to stick her arm out for blood pressure, or open her mouth for temp, she can now take all her meds by mouth, she even takes her shot like a big girl! I can go on and on about how amazing she is and how excited we are for the "end of treatment" to be so close. But the raw honest truth is, its absolutely terrifying. Its not even close to the "end" of treatment. This cancer isnt considered to be in remission until the five year mark, because honestly it can show back up at anytime. Neuroblastoma isnt just a tumor you can remove and its gone, all it takes is one tiny immature cell in her body that decides NOT to mature like it is supposed to and RELAPSE. Which I have to believe are harder words to hear than cancer. I cant imagine having to start over again. We have already promised her only ONE more week in the hospital,  no more feeling yucky all the time, no more tubies, etc. We can only pray and trust in God that we will never hear the word relapse. We stay as positive as we can, but that doesn’t stop that horribly scary voice in the back of your mind from thinking WHAT IF…. I try and keep all of the posts on this page factual and positive. But I just need to say that if you have never had a child in your family with cancer, you don’t understand how horrific it is. Some things we have heard, seen, or had to do on 6A (pediatric cancer pod) will forever be burned in our minds. The kids screaming and  moaning in pain or out of fear, the parents crying in the hallway after being told to go home on hospice, being at a toddlers funeral! I wont go in  to more detail because its to hard to even write or think about, but parents and children are living this everyday and they shouldn’t be! So all we can do is just keep fighting for our children. Its very easy to take things for granted daily. I know how hard it is to keep my patience with Bri sometimes especially when her meds cause terrible mood swings, but then I feel guilty for being angry with her because I know there are so many parents that would do anything to have their child back here on earth even for a second. So just hug and love on your kids and family!! Life is to precious and short.
#brianastrong
#kickcancersbutt[...]

Cycle 4

Bri is here for cycle 4 of immunotherapy! She is doing great so far. She was having severe reactions to her leukine shots so instead of stopping them all together, we decided to wait until we were admitted to the hospital. She was given a half dose of leukine, IV steroids and benedryl to help with the reaction. They were not comfortable with her reaction and decided to skip a day, then give her a 25% dose. And has been tolerating it well. We're very glad she is able to receive this medicine even if it is a much smaller dose. In our opinion it is a very crucial part of immunotherapy, the leukine works with the antibody by boosting the immune system and "flushing out" the attacked cells.
So please continue to pray for her comfort and that the antibody is still able to get rid of the nasty cancer cells!! We should be on our way home this Saturday.[...]

💛💜

So Bri was having some pretty severe reactions to her leukine injections last week. Benedryl and pain meds were hardly helping with the itching and pain. We even stopped the shots for a few days and tried again but the reaction just got worse. So we met with the team yesterday and they are going to research and discuss either a different injection or maybe introducing the IL-2 infusion again. But either way she will still receive the antibody. I will keep you posted when we hear a new plan!
#brianastrong
#kickcancersbutt[...]

1 year!

So today marks 1 year since we were told our 2 year old daughter has CANCER. It's almost impossible to explain the feeling you get when your told your child has cancer. I didn't know anything about childhood cancer at the time, so the first thing that popped in my head is "my child is going to die". Which I now feel guilty for even thinking that because she has shown us over and over again how much she wants to live! She is the strongest, bravest, toughest little girl. She has taught me many things in the last year, she has brought us closer as a family, closer to God, she has been an inspiration to many people, and she is only 3.
In the last year she has had 5 surgeries, 2 stem cell transplants, 12 radiation treatments, 25 times under sedation, 101 overnight stays in the hospital! (Just to name a few) But she has done all of that, plus some, with a smile on her face and love in her heart. I can confidently say that these children are MUCH tougher than any adult I know. These kids are not sulking in there room dwelling on the negative, they are running through the hallways, making friends, in the playroom. Briana and her friends have absolutely shown me a new way to look at life, and I'm positive she will continue to teach me for MANY years to come.
Thank you to those who have been by our side from the beginning, and continue to be there for us. We love you all very much!
#brianastrong
#kickcancersbutt
#finallymorethan4[...]

Ugh!

Poor girl has spent most of the day on the couch not feeling well. Hopefully she will bounce back to her normal self soon.
๐Ÿ’œ๐Ÿ’›๐Ÿ’œ๐Ÿ’›๐Ÿ’œ
I can't stand this! I want to just take this all away from her!!!
#brianastrong
#kickcancersbutt #neuroblastomasucks[...]

We're home

Bri is home today after a very long week! She had decrease in kidney function, urinary retention, allergic reaction of hives and coughing, fevers up to 103.0, pain, fluid retention. Just some of our major concerns, even though this is all "normal". We had to do most of the antibody over night, luckily we had some of the BEST nurses watching over her so we could get a little rest.
To finish up the rest of cycle two we will be at home for the next two weeks starting accutane (oral meds) again and leukine (subQ shots).
Thank you for your prayers!
#brianastrong
#kickcancersbutt
#neuroblastomasucks[...]