Found A Friend

Prior to getting cancer, Hannah's every day was filled with friends and fun at preschool. Since April, she's basically, only been in the house or at the hospital. She has had a couple of visitors, good times, but it's not the same. She misses playing with kids so bad.

So, in the waiting room today, two boys were running around a little table playing with cars. They were loudly laughing and having fun. It is a sight almost unseen at clinic.

Hannah was mesmerized. We sat at the coloring table until she was brave enough to ask one of the boys to play. Disaster. Rejected and quick. He told her to go back to the coloring table. Super harsh. I wanted to hurt that kid for a moment. Don't judge me! She came back, sat down, and fought the tears.

I suggested we go play with the spinning, ball contraption that everyone loves. We went over there but she just couldn't quit watching them play.




Then, the mean boy left.




I asked if she wanted to try again.


The approach



Success! He wants to play!




Playing quietly at first



Now we're having fun!!




How awesome is that? Hannah didn't let that mean kid get her too down. That girl has got spunk. I love her spirit. I love the fact that my phone has a camera and I loved watching her have some fun!

Escaped Feeding Tube, for now

Hannah's blood counts were not high enough to continue chemo. They did go up significantly, though. Her ANC is finally out of the danger zone. Her ANC last week was 168, then Monday it was 218, and today it was 521! So, that is some good news. She needs to be at 750 to start chemo. We will go back Monday and try again.

Now, the dreaded feeding tube. Hannah desperately does not want one. However, with as much weight as she has lost and the way her stomach feels almost constantly, it is really just a matter of time. We went in yesterday and her weight was stable but still too low. She will recheck on Monday.

I wish she could eat her way out of this, but I also see how hard it is for her. I make her everything under the sun and it just sits there. Her mouth is dry, smells make her stomach lurch, and most days the food doesn't sit in her little tummy very comfortably. I don't know what else to do.

I had asked if Hannah's protocol was possibly too rough for her. The answer was; Scientifically, nope. For a mother to have to watch, absolutely.

Amen.

Chemo Still On Hold

Hannah did not make counts again today. However, her blood counts have come up a smidge. Her ANC went from 168 last week to 218 and her red blood and platelets are holding steady. Her ANC is still too low to continue on to the next leg of treatment, IM. She needs her ANC to be at 750 or above to continue getting any chemo. I wasn't surprised, as she has been tired and off color all week. I still hoped, though.

Our next appointment is Thursday and if her counts are high enough they will start chemo that day. Please pray for us that her counts rise and that she not get sick. It is really important at this stage of her treatment.

Hannah did get to start her physical therapy today. She loves it! The PT room has lots of toys, a slide, stairs, balls, balance beams, and more! I should have taken a picture but forgot. They evaluated Hannah and had her doing exercises. It went so well that she never knew it was anything more than getting to play.

What they discovered was that there is significant weakness in her left leg and that she continually favors her right. She has lost strength overall in her legs as well, so much, that they buckle on her without warning. We were given a little exercise routine to do at home that Hannah, actually thinks is a pretty good time, so we got that going for us!

I think all the PT "playing" really wore her out because she passed out as soon as car started rolling!

Hannah & Rian Part II

This is Rian's account of hanging out with Hannah on one of those work days.


Hannah the Great




Back in the saddle, literally. I think I was ridden like your least favorite mule for at least 15 minutes…pure torture (you try it)! A bit of heeyah & giddeup are no longer my favorite expressions.

Hannah and I were sneaking wary sidelong peaks at each other when we thought the other wasn't looking, daggers cast in a glance. We have quite the history, her and I.

Believe as you will but, I'll tell you nay is she the innocent sweets, but a creature to be feared, a fireball, a banshee, the Kraken. Fear is inevitable, it starts in the pit of your stomach, then your knees start to tremble, the anticipation is agony…all of a sudden she's on you like a wet noodle, all hugs & kisses…eewww (sputters & spit), but don't think this is sincere, oohhh no, she's setting me up for something, I can feel it, just biding her time with me in the crosshairs, probably has the poison chapstick or something.

Torture AND humiliation…Barbie Tea Party. I'm at a loss for words, masculinity leaching from my Ego. I got a purse and a cup (hats optional), dress up shoes which were cute but, too small; I can't go on, I've said too much already…at least we got to dance as slammin tunes pumped from the RV/Pool/Disco machine, thing.

When Carrie arrived I was battered & bruised (you know, the Ego) and feeling fresh from the juicer nursing my wounds, though, I found myself wishing that work was for those who have nothing better to do…at least we had fun for a few hours.

Rian

Spaghetti Tacos

Last night was pretty fun. Which, considering how yesterDay went, was surprising. During the day Hannah was not feeling very good at all. She also, still, looks sort of grayish.

Back to the fun. Hannah requested the famous spaghetti tacos for dinner. If you have never heard of this culinary delight then you will need to spend some more time over at Nickelodeon watching ICarly! It is one of Hannah's favorite shows and on it they eat quite a bit of spaghetti tacos.

We watched the show and ate the dinner and laughed. Sounds fairly simple, but it was fantastic.

Here is a picture of the fabulous meal.



I added Sriracha to mine, but then I can't think of much that isn't instantly enhanced by adding a little Sriracha!

Back on the Roller Coaster

So, Hannah's blood counts were not high enough to start the next phase of treatment. Infact, they are so low that she is neutropenic. That means her ANC (the number that tells us her overall immunity and germ fighting skills) are under 200, which is the danger zone.


All of her appointments this week are now on hold. Monday we go in again to recheck her blood counts. Until then we just wait, wash our hands, and try not to get sick. I am beyond bummed, but I did half expect it. When Hannah woke up this morning, she actually looked gray. On the plus side, we have been through this before, so I know what to expect and that it will be ok.


Hannah, being Hannah, did, of course, rock a tutu at Children's today. Everyone commented and she was so polite with her "Thank you". She sounded so grown up. Even in a bright pink tutu.

I'm Beat!

For some reason, today, I am exhausted. I don't know what my problem is, but I am struggling to keep my eyes open and I have a lot of work to do! I think I need to make some coffee. (thank god for Starbucks)

However, I haven't posted in awhile, so I thought I would write a little something. I would like to apologise in advance if this isn't very interesting!

Tomorrow, if Hannah's blood counts are high enough, she will enter the next phase of treatment called Interim Maintenance, or, as I shall refer to it from here on out, IM.

The phase we are in now, Consolidation, has been insane, and I am so happy to almost be done. Also, on Wednesday, if she gets the go ahead on the blood counts from Tuesday, she will have her next BMA. That will tell us how much cancer is left in her body. The last test before we started Consolidation was not good. I'm trying not to have expectations either way, but it's tough. I want them to say she has zero left soo bad...

Last week was a hard one for Hannah, but she is doing better today. She is eating plenty and is full of energy. It is great to see and gives me hope that she will indeed make counts.

She has been cracking me up playing with her groovy girl dolls. One of them apparently hit the other and Hannah, pretending to be the mom says "Sweetie, punching is inappropriate". It might be a, had to be there moment, but the way she says inappropriate-HILARIOUS! Maybe I will be able to get that on film.

Hope everyone is doing well and please a double prayer request. One, she makes counts tomorrow, and two, that Wednesday's BMA revels that magic zero cancer cells number. Thank you!