Perspective....from a Childhood Cancer Mom

Good heavens. At Nemours, for our latest scan results and follow-up.  Packed house today. Little bald heads. Some not as little, but still kids. Masks to help protect weakened immune systems. One child crying and having to be forcefully "encouraged" to go when his name is called. Another, who had been cheerfully chatting and painting, has his name called and he hops right up & goes....but then his pace slows a little, his face completely changes and he looks down and softly says, "but......I don't want them to hurt me..."

Think you're having a bad day?? There are some young ones here having one that might be worse. 

Things I wish I didn't know so well about. But, I do.

Ashlyn has graduated from 3 mos scans to 6 mos scans.  :) smile emoticon smile emoticon smile emoticon

There is a 3mm node showing on her lower left lobe, which her doctors say they would make no notation of for the average person because these can show up from colds, etc....but because of her history, they made a note of it... & said they are not concerned but will follow up on it with the next scheduled scans.

Her mama says...let's pray that node of no concern away and have it not show up when we go back. Yes???? Please???

And....I appreciate and am so thankful for her AMAZING doctors, nurses, medical staff, hospitals, & facilities. I couldn't ask for better care for my girl.....BUT, when I write my autobiography/Lifetime Movie Network story/manuscript....I shall include a very lengthy chapter on things the medical community needs to think twice about before doing. Such as....leaving a message on the mother of a cancer survivor's phone saying, "there's a small spot showing on her left node and we made an appt for you to bring her in on Feb. 5 to go over the results with Dr. _____".

Notice from my last post that we were there today, not Feb. 5. Because mamas like us have been through it...and we don't play and we don't wait 21 days to get things clarified. Nor should we have to. 24 hours of not worrying makes me kinda tired. Just a little bit.

Yes...a little bit of a rant. But also relieved and thankful that they squeezed us in today. Operation Let's Get Back to Living can proceed. 

Woop woop!!!wink emoticon

Sweetness

Walking past me, she stops and says...."I love you. You're awesome". Without being prompted. 😳😳 Pause. And then, "I know God is doing something because I've been feeling good this week. That has to be God....and all the people praying for me" ~~ Ashlyn

Just squeeze my heart a little harder, why don't cha???

‪#‎PrayForAshlyn‬ ‪#‎GodIsGoodAllTheTime‬

My Friends Remind Me....

To be honest.....feeling A LOT more things all at once than blessed {I'll spare you the rest wink emoticon }....but for right now, just want to say THANK YOU. For the prayers, encouragement, so many acts of service and kindness, generosity, attempts to add a smile to our days here & there, patience and understanding with unreturned msgs, etc., etc, etc, .....THANK YOU to each and every person & family that's helping us get through so much. Even in the moments when I look around and feel completely worn & empty & like there's nothing left to lose &.....{this is where I spare you the rest}..... there's still the feeling of "my cup runneth over". It doesn't make any sense, but it is what it is.

Only God can do that. Through all of you.

The New Normal...

Home health care delivery this morning & the pharmacy/clinic I'm now running ...... Waiting for a home health care nurse to get here to help set up equipment, etc. while Ashlyn lies in bed waiting for nausea meds to kick in (just in case) before she gets up & while my boys are on their way to Hilliard for hopefully a fun day (& we wish we were going, too....our old normal). We've always been a team, the 4 of us,  and I rarely took those times for granted.  Regretting the few that I did take for granted now.  I want them back.  Beyond thankful for the friends who are keeping us going...making meals, giving rides, so many things.....but wanting so badly to just do it myself. To be the mom I've always been. To be there with them, being silly and making them laugh, keeping them in line (or trying to) when needed, teaching them, cooking for them....doing pretty much everything for them.  I want to be THAT mama...

There are certain words and phrases that I don't react well to....one of them being our "new normal".  To go from the girl who is never sick & has always been healthy as a horse and to think of this as being our "normal" is hard to accept.  I need to think if it as temporary....

In those boxes are a feeding pump, stand & supplies, and formula (Ensure) for supplementing Ashlyn's diet.  She has lost weight fast since her diagnosis.....she's at a healthy weight for her age & height, but the rate at which she's losing is not good for her strength and energy or overall health.  We're trying to stop the weight loss so that she will feel better and so that her body will have everything it needs to fight as hard as it can!!  New medicines to stimulate appetite, new medicines combined with old to help control nausea and vomitting...SO many medicines!!  If she feels like eating, she can eat whatever she wants to eat.  If she can't eat, we supplement with the g-tube feedings....one can of Ensure for every meal skipped.  Please pray for control over the nausea/vomiting....and the rest of her side effects, more energy and feeling better in general.  A consistent input of nutrients will help with that! Yay for doctors, nurses and dieticians being back-up for mama.....telling her everything I've ALREADY told her!!!  Funny how she doesn't argue with them.... ;)

Yawn.  It's only the middle of the day and Mama needs a nap.  This new temporary normal is exhausting....

My Boys....

Oh, how I'm missed these boys!!!  It felt like they'd never let us out if the hospital so I could see them!!!!

My boys' hugs are awesome. And their smiles when they walk through the door and see me = Mama LOOOOVVVEEEE.  <3

Mama Love

My boys' hugs are awesome. And their smiles when they walk through the door and see me = Mama LOVE. heart emoticon heart emoticon

Run For Ashlyn

Someone who doesn't even know us personally, but knows our story through a friendship with extended family, is running the Fort Worth marathon in Nov. and wants to use his miles to raise money to benefit Ashlyn heart emoticon

‪#‎PrayForAshlyn‬

https://www.crowdrise.com/runforashlyn

How awesome and thoughtful is that?!?!

A Rough Night...

If it weren't for the parking lot, it would have been a great, rainy, nighttime view of the bridge & the river from our room....

Our stay has been extended & we don't get paroled till sometime Wednesday. It's a nonstop party 'round here!! 

Ashlyn hasn't eaten anything since Friday & has only had 1/2 cup of water since then. She's nauseous, tired & not very responsive, cooperative or agreeable to things that wld be good for her. 

After a rough night, we've had a morning full of nurses', ACP & oncologist visits.....adjusting,discussing and making plans for switching some meds, etc., meeting the children's oncology psychologist (to which Ashlyn did NOT respond well to AT ALL  )....dietician to come tomorrow to discuss beginning g-tube supplementing if Ashlyn doesn't try to start eating  .....

The swelling in her 3 lymph nodes that was scarily big on her neck has almost completely disappeared.....her oncologist was impressed and surprised by how much the nodes have responded, so quickly. After Round 3, they will schedule more scans to see how everything else is responding. Keep praying....please 

When Things Don't Go The Way You Planned.....

They finally started chemo at 1:13 am. (Saturday)....my sleeping beauty got up for just a few minutes around 8:00 to brush her teeth, etc.....and was doing ok, got back into bed and had her mama bring her an extra blanket, tuck her in tight with a kiss, and fell back to sleep.  And she sleeps on....

Looking at my calendar at things coming up.....Robert's 13th bday falls right in the middle of her 4th round of chemo.  UGH.  Gonna make the best of it just like Winnie the Pooh says.....but.....

DADGUMMIT.  :'(

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SN: I gained much wisdom and love for Winnie the Pooh from an 18 book set of storybooks that I would read to my kids when they were small enough to sit in my lap.....and even when they weren't.  :)  Each book began with "Words of Wisdom" from Winnie the Pooh, and then a story to follow.  We had storytime every night before bed and they would come to me, with their little chubby selves and their cute little faces and excited little eyes.....and have not ONE, but two or three books each in their chubby little hands and often, I would read every single book they brought until I gave out.  ;)  Many times, there was one....or two or three... from our Winnie the Pooh set.  I read them so much, I memorized them.  They were the BEST books and I still quote them today!! ;)  And I still have them....in storage right now, but I think I will hold onto them forever.  I got rid of so many things over the course of two moves, but those books.....they're special.  <3  Smiling now as I think of silly names I've given to things and recipes, and of how many quotes & phrases I use, that came from those books...

My three would fight like crazy over who got to sit in my lap.  Usually one would get there first and greedily climb up and hold on tight so they didn't lose the most treasured seat in the house.  ;)  The other two would sit on each side of me, as close as they could get and they would often have to turn the pages for me because they were leaning in to me so closely that I couldn't move my arms.  And I would read until my throat hurt, with that one in my lap snuggled up tight....his or her head just under my chin, or right beside my face, depending on which one it was, and I could rest my head against their sweet smelling hair while I read.  Chubby little fingers pointing at their favorite pictures and swatting their siblings' hands out of the way.  Little legs wiggling and kicking with excitement when we got to their favorite part.  Mighty and indignant protests if I tried to skip sentences to shorten the story....they had them memorized, too...couldn't pull one over on them!!  Smiles and laughter when I would try, just to pick on them and hear their reactions when I did.  Ahhhhh.....sweet, sweet memories are even better than that good cup of coffee I posted about earlier, but they trigger tears in your eyes and an ache in your heart (and coffee doesn't do that). 

Do you ever think about your most favorite & treasured times and wish you could just go back....just for a little while....and be in those moments again??  For time to stand still while you just....BE STILL in those moments and wish they would go in super slow motion so that you can soak up every drop of them with all of your senses and find a place within you to hold those moments tight and keep them safe so that you never, ever lose them....and can go back to them anytime you want or need to??  Or is it just me and I'm the only one that's weird like that??  Maybe that's why I hold on to those books and always will..... 

"When things don't go the way you plan.....Make the best of it"!  ~ Winnie the Pooh

 

 

Words of Wisdom from Winnie the Pooh.  A very wise bear indeed.  I like him.  And I like that Tigger, too.  I think if you combined the two, you'd have ME.  ;)

 

 

 



Hospitals.  Lots of quiet.  Apparently good for writing.  And processing, filtering, organizing and working my way through the many thoughts battling each other in my head because of the quiet.

It helps. 

Make the best of it.  Any way you can.