#TeamNoSleep

There are many side effects to chemo - nausea, discomfort, loss of sensation in your hands and feet/nerve issues, constipation, hair loss...the list goes on and on.

What they don't add to the list is sleeplessness.

Laila has slept through the night since she was three months old - like a rock, 13 hours straight. So, this is new territory for us and worse than the "newborn stage."

With a newborn when they aren't sleeping its because they are hungry or have a dirty diaper. With a nine month old on chemo, you have no idea what is wrong.

For a baby Laila's age, our only options are to give her nausea medication (Zofran) and Tylenol "as needed." Neither of which seem to be helping her, especially at night.

She loves to sleep on her belly, so I can only imagine that trying to get comfy on a belly filled with a giant 13cm tumor is close to impossible.

On a good night, we get a few (3) hours of uninterrupted sleep. On a bad night, we are holding a screaming uncomfortable baby from midnight until 7am, up, wide-eyed trying to figure out how the F to make her comfortable.

Since Laila's room is next to Caia's, on a "good night" Laila will start off in her crib, and then when she wakes up screaming we move her into a pack in play in our room.

We have found that playing twinkle twinkle little star or the Moana soundtrack on REPEAT helps to sooth her, even better than medicine, lavender diffuser, propped up pillows...and everything else we have tried. So, if she is not crying, Chris and I are laying in bed singing along to "Moana, make way, make way...." for hours on end.

I keep reminding myself that the "benefit" of her having cancer this young is (despite the fact that she will only have one kidney and annual CT scans, etc.) that she won't remember this. The bad part is that she cannot tell us what is wrong/and how to make her feel better.

We asked the doctors and they said "so sad, too bad." Well, not in those exact words, but basically.

So, despite popular medical opinion I just purchased some CBD oil and plan to try that out tonight...we are desperate.

And feel so helpless.