Cancer is never a word you want to hear

Our baby girl is sick. 😦 I am home quickly to shower and change and head back, but thought I’d update here for people. I won’t bore you with all the little minute details, but we took her to Seattle Children’s after being referred by our Pediatrician’s office. The on-call Neurologist at SC wanted to see her, given her symptoms. So, off to the ER we went.

Before we knew anything, and she was still feeling pretty happy.

She has a tumor in her chest called Neuroblastoma. The doctors are very optimistic about her survival rate, seeing as how she has the “favorable” version of this type of tumor. They said they think there is no -> very very low risk that she will die from this. So, that is good. The not so great news is that she may not recover from the loss of strength in her lower body. She may recover a little bit, she may recover a lot but not fully, she may recover all of it. There is no way of knowing until she’s further along.

Tired, not feeling great and not happy about all the poking

They have started chemo, inserted a permanent port for her to receive the chemo, taken a biopsy of the tumor and taken a biopsy of her bone marrow. We will know more about those test results in the coming weeks. Until then, we have 2 more nights of chemo on this round. We will be in the hospital for several more nights at least and we won’t know more about her long-term treatment until we see how the tumor reacts to this round of chemo.

Daddy snuggling baby after her surgery today

What we do know: There is a mass taking up about 25% of her upper left chest cavity. It wrapped itself around her spinal cord causing compression, which is what has caused the loss of strength in her lower body. This is not genetic in the sense that she “got it” from us. It also is not considered to run in families, so we should not have to worry about any subsequent children. Of the kinds of Neuroblastoma tumors, she has the “better” kind. Higher survival rate, less traumatic chemo, etc. They have opted not to do surgery given the extent of the tumor and the fact that chemo sees results that are just as successful.

I am not sure what I’m leaving out as I’m rushing in posting this so I can get back to the hospital, but THANK YOU to family, friends, loved ones. Anyone and everyone who has been sending us messages of love and hope and support. We love you all and are so appreciative of everything. If I have not responded, it is not because I do not appreciate it, I just cannot keep up with responding to the messages flooding in. That does not mean we do not love and appreciate them though. We are trying to keep everyone updated as we can.

Thank you!!

Heather (and Alex and Madeleine)

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6 Comments

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6 responses to “Cancer is never a word you want to hear

  1. Jo

    Thank you for the update. You are at the front of our minds here in our household. As you already know, we are here if you need anything.

  2. Thinking and praying for you all. Huge hugs to baby.

  3. Lora

    Hi Heather,

    I found you, via Ann Mitchell, and wanted to post to you. My baby girl also had cancer, not neuroblastoma, but infant leukemia. I’m also an occupational therapist…and the first thing that I recommend is getting your daughter involved in therapy right away. Even if she doesn’t feel up to it at the beginning, a good therapist will be able to push her on the good days, and hold her on the bad ones…If there is ANYTHING that I can do for you…I know you don’t know me, but I’m happy to do it! Hang in there….

    ~ Lora

  4. Trish

    Hello,

    I don’t know you but I want you to know that you and your family are in my prayers. My heart is aching for the worry and pain you must be feeling. I am so sorry for what your baby is going through. I will continue to pray for her.

  5. Nellie

    Hello,

    I heard through my cousin, Clarissa, of your challenge. My heart is saddened as I’m reading your status and I pray that your load will become lighter with your precious baby’s full recovery.

    God bless,
    Nellie

  6. Pingback: It has been 1 year | Tiny Baby Fingers & Tiny Baby Toes…

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