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!

Really? Fish Sticks?

Hannah stopped eating this week. She would ask for food and then it would just sit in front of her. I tried every kind of food that I thought she might eat. I was just about to give up hope of Hannah not needing a feeding tube and then yesterday, she ate.

Fish sticks. Two days prior she announced to me that she now HATED fish sticks. I had an extra box that Diane and Kathy brought over, so I took a shot. That did it. She ate four, which seemed like a ton at the time. Then, not too long after, she wanted more. For dinner, she had two big bowls of chicken ceasar salad.

We are back in business!

Fancy Dresses & Bad IV Needles

Today, Hannah decided that we should wear dresses to the hospital. I was thinking she meant sundresses, so, I put one on. She came out in this.



She said she meant FANCY (drag all the syllables out for the correct pronunciation) dresses. I explained that the dress barely fits and does not have any buttons. Since she was willing to deal with the hassle of a port access in a non button shirt, I said ok.

Turns out, the port access was going to be hard no matter what. Children's has switched their IV needle supplier. They are going with a new kind that lists the size of the needle on the outside of the butterfly. Very helpful information to be able to read while the kiddos are accessed. Plus, their old supplier kept back ordering them.

Hannah hates this new needle. It is supposed to be the same size but it is coated with a silicone like product for comfort. Oh, the irony. I really don't know if that is the problem, but she complains non stop when this needle is used. It is hard for even one hour let alone when she is accessed for 5 days. The entire visit changes. It clearly hurts. I am going to talk with her doctors at our next visit. There has to be a better solution.

On the plus side, Hannah is going to start physical therapy to help her legs. She currently has considerable leg pain from the chemo and falls often. Thankfully, the physical therapy should be able to help her with that.

Hope everyone is doing well and please keep us in your prayers.

Wow, West Seattle!!!

There are days in this new journey when I feel quite alone. I know we have people in our lives who love us and are there for us, but I do have moments. Like the long hospital days or the nights taking care of the throw up that make it hard to feel like anyone could understand. Then, there are the days like these. There may be(thankfully) few people who can actually understand what we are experiencing but we have certainly been shown that we have a LOT of people who care!!

Kathy Henderson and Diane Armstong are mom's from Hannah's West Seattle YMCA preschool group. They put together a garage-bake sale/lemonade stand this past weekend. Hannah's whole preschool helped out. They put out fliers and the famous West Seattle Blog even featured the event. People who we don't know and one's we do came together and donated their time and things all for Hannah. Kathy and Diane came over on Saturday to bring us dinner (btw, God love you all for the dinners!) and the proceeds from the sale. I don't think a one of us were prepared for what that would be. All three of us were in tears.

I really don't know how to thank everyone enough. I am overwhelmed by the show of support from our community.

This journey may have it's alone days but it has also been an eye opener as to how many really good people we have surrounding us. The out pour of support, the prayers, kind emails and calls, offers to help, dinners delivered, babysitting Hannah or the boys, the gifts of button down shirts and sitting still activities, the nice comments to the blog, the teachers and counselors(thank you Kitty) who helped the boys, the donations to the Hannah website, all of this is amazing. I hope I can convey what you all mean to our family right now. Thank you so much.

More Platelets Please

We went in this morning to check her blood counts. She is going to need another platelet transfusion on Sunday.




Nana Fran came to the hospital this morning. This is a picture of them reading a very big pink Barbie book!



Wednesday she had a red blood transfusion. All these transfusion are time consuming but the fact that we need them at all is reassuring. The chemo is working and kicking cancer right out of there!



Here is a picture of Hannah getting the red blood transfusion and being silly.




Hannah playing doctor while we passed the time.



The chemo is having a big effect on her legs and feet this week. She mentions often that her has sprinkle toes (they go numb) or scratchy legs. Sometimes her hands and feet get really hot and to make her feel better we take their temperature. They are generally a degree or so hotter! I love those new thermometers. Just press a button, set the thermometer on the skin, wait a second, and presto. You the temperature of whatever the sensor was touching. Where were those when the boys were little?


Yesterday, Hannah got to spend the day with Grandma Patty. She had the time of her life! She has spoken of little else since then. She was just a normal kid having a great time and it meant the world. She got to step in a little baby pool, play with bubbles, and throw a ball around in the backyard.



Hannah, Taylor, Kristian, and little Rosie eating lunch.

Keeping busy!

This is her week for transfusions, for sure. Monday she needed platelets and this morning we are going in for red blood transfusion. Most likely, she will need more platelets before the week is out. These are long appointments.

The red blood transfusion is at least four hours in a chair but with set up and everything, it is usually more. That is a very long time to be still with a four year old. I usually bring arts n craft type stuff. Unfortunately, I am not the most creative person on that front, so the usual was starting to be a bit boring. Grandma Patty gave us some Highlight magazines that have been very helpful.

Here is a picture of Hannah and Aaron making caterpillars while we waited for platelets to arrive. (takes two hours)




Yesterday, Hannah had two different types of chemo at Children's. The PEG shot and Vincristine. The PEG is a double shot to her thighs. They usually do this while they are doing the back pokes since she is asleep already, however, it isn't something they would specially give her anesthetic for.

Visually, the PEG is a scary procedure. It takes two nurses, they hold down her legs, and come at her with two very long needles. Fast. I was worried to do this with her awake.

I couldn't have been more impressed with Hannah. While she wasn't happy about it, she still handled it like a champ. She didn't scream. She didn't even cry. She just said "OW".

The funny part is that they promised her TWO stickers this time for doing so well. On our drive home she reminds me that she didn't actually get those stickers. I bet it's the first thing they hear about today!

Quick Recap

This time around the chemo is behaving exactly as they expected. All her blood counts are down, red, platelet, white, and ANC. The ANC went from 1070 on Tuesday to 536 on Thursday. We will see tomorrow is she needs a transfusion of platelets or red blood. Starting Tuesday she will move to two other types of chemo medicine. She will remain on those until July 20. If her counts are up at the July 20th appointment then we can begin Interim Maintenance (IM) which is the next phase of treatment. Also, on July 21 she will have her next bone marrow aspiration (BMA). The results of that will let us know how much cancer is left in her body.

Also, Andrew came with us on Wednesday and had a great time. So, for Thursday and Friday BOTH boys wanted to come. They have decided that was enough hospital time and are not coming tomorrow.

Every now and then, I have a hard time with the fact that all Hannah ever sees anymore is the inside of the hospital or the inside of our house. Since April, and this is just the beginning. It is going to be awhile before she has enough of an immune system to be a normal child. My heart breaks for her as she tries to remember the songs from preschool or the sequence of morning circle time. Of course, there are those crazy boys and that ridiculous Rian... ;-)
Thank goodness we are a fun bunch!

Here is Hannah playing with the spinning wall contraption in the waiting room. It is everyone's fav.











Andrew and Hannah zoning out watching Bugs Life.

What a Week

The chemo Hannah is on is tough stuff. As expected, she has been pretty sick. Tuesday night we had the throwing up and going to the bathroom at the same time. She got a new kind of anti-nausea yesterday that helped. She actually slept through the night last night! In a way, this is good because is indicates that the chemo is doing it's job.

Hannah just cracks me up, though. She has moments were she just wants to lay still or cry because she feels so bad. However, most of the time, despite not feeling great, she is in a happy mood and playing around.

I am posting this video even though it is long (one minute and thirty-two seconds) because it shows exactly what I mean. Plus, it's hilarious. The thing to keep in mind while watching it is that an hour and a half earlier she was stuck to the toilet.