Last Day of DI, Part 1

Yesterday, was Hannah's last day of the first DI. Her treatment is broken into phases. This last one, Delayed Intensification, or DI, is designed to deliver a "knock-out punch" to the remaining leukemia cells. It is brutal and because of her high risk status, she will get an extra loop of this more intense phase again in two months. It is a very important stage of treatment and we are so glad to have at least one of them behind us.

Yesterday was also unique in that for the first time, Hannah's ANC came back at zero. Which means she officially has no available immune response. Her lowest had been 21, which is unsettling in itself. Even I'm a little spooked at the zero number.

I just keep reminding myself that those numbers will come back up. The best thing I can do is to make her a germ free bubble to live in until then. She will start the next phase of treatment, Interim Maintenance #2, or IM #2, when her counts are above 750. So, she has quite a ways to go! I am putting my bets on two weeks, but they will check her next Friday, just in case.

IM is an easier phase of treatment and Hannah did pretty well on it last time. We are really looking forward to the small break. :-)


I will leave you with a picture of Hannah in an adorable hat sent to her from our friend Heidi. She is with Smacna, the most awesome group of people you could ever hope to meet. Thank you, Heidi!!

Hannah Update

The headaches have gone and Hannah is doing much better. She had a very normal day. No throwing up, no pain, no pain medication, and no fevers.

Her improvement couldn't have come at a better time, too. It snowed here in Western Washington. As anyone from Seattle can tell you, when it snows here, you stay away from the roads. We don't get large amounts of dry snow. We get an inch or so and roads that are solid ice. Getting to the hospital in these conditions would be very dangerous.

Today the roads were so bad that I couldn't get to work and the boys school was closed. So, we all got to stay home and play. Hannah had a fantastic time, other than being bummed everytime they went outside to play. She took not being able to join them fairly well, considering.

I wanted to thank every one for your support last week. It really does mean so much to us.

I left my camera in the car and forgot to take pictures of everyone in the snow. I will have to update this later with snow pictures!

Snow pic update; Aaron and Hannah on Thanksgiving. Third day of the snow, so, not much left. Yet, still suprising for our area!

Pain Management

It looks as if the headaches are going to be around for a little while. The best we can do for her is to give her good drugs to keep her comfortable.

I went in to the hospital yesterday armed with information. I was determined to get to the bottom of a mix of symptoms that didn't fit the possible diagnosis I was being given. Fortunately, for me Dr. Blythe Thompson is who we saw yesterday. She is blunt, to the point, and well known for her intellect.

I didn't have to do much explaining before she confirmed what I was thinking. The headache and other flu like symptoms are not from the spinal tap or the low red blood count. They are caused from the chemo drug she was given earlier in the week called Ara-C. It can cause a cerebral headache and the other symptoms. Unfortunately, it just takes time for it to go away.

Hannah has a good block time from around mid morning to middle of the afternoon where her headache subsides a bit. After that it is intolerable. She sobs, throws up, and begs for more medicine than is allowed to be given. To combat this, Dr. Thompson has instructed that a second medicine be given a half and hour after her narcotic. All by itself this drug doesn't do a whole lot, but the way it interacts with narcotics helps them to work better. So far, it is working.

Giving your child round the clock pain medication feels counterintuitive. Most of the time I am driven to find answers. This "solution" of drugging her through it, is hard to take. However, infinitely better than watching her struggle with pain.

This week has been extremely hard. We have had so many "Are you kidding?" moments. By far, the one that is the most astounding was the ER nurse failed attempt to access Hannah's port on Wednesday night.

In order to draw blood or administer medicine they stick a 20 gauge, 3 quarter inch IV needle in the port that is under the skin of her chest. Typically, a numbing cream is applied an hour before this occurs. In the rush of the ER, a different, fast acting cream was used and applied incorrectly.

The nurse, who doesn't normally work with the cancer patients, stuck the needle in slowly. Hannah's whole body went tense and she was screaming. Clearly, she wasn't numb. I'm telling the nurse to stop. Seriously, this needle is no joke. She was basically slowly stabbing Hannah. She stops and just stares at us. I ask to her remove the needle and then I start interrogating the other nurse as to how/what numbing cream was used. It was not my most eloquent hour.

They got out of there as fast as possible leaving us to reapply the cream and clean up the blood that was now flowing out of the hole she left. I can't believe that Hannah made it through the second attempt.

I still feel agitated by the whole experience. I tried writing this with a nicer tone, but I just don't have it in me right now. When perspective does befall me, I will feel that I should have been more uplifting or kind or something. For now, I am going to add pictures of the good moments we did have during Hannah's hospital stay.

Mackenzie and her adorable baby, Cadence, came by to visit on Thursday. Mac brought me coffee because she loves me ;-) and spent lots of time coloring with Hannah. Hannah normally wants to pretend Cadence is her baby. This day however, she just wanted Mackenzie to herself. Hannah kept asking me if I could take the baby! Ha! It was really kinda funny.

Turn for the Worse

We are headed back to Children's here soon, but I wanted to let everyone what is going on. I'm sorry if it isn't very detailed. I will add a better update soon.

Wednesday night Hannah was readmitted to the hospital. She has a strange, constant headache that is not presenting in the way you would expect considering the procedures she has recently had. She had a spinal tap on Monday. We also found out in the ER Wednesday night, that Hannah had a sudden drop in red blood cells and needed a transfusion immediately. Those are the two things the doctors are concentrating on as a reason for the headaches.

I think they are wrong. There are a few other oddities in symptoms that make me feel the headache is a symptom of a separate issue. However, I was unable to research this while in the hospital. Sometimes, it is hard to get doctors off a scent. I have been up to eyeballs in medical lingo, so I haven't had time for a proper update.

I am off now to go argue with doctors. Please pray for Hannah. She is struggling through the best she can. I am so proud of her.

Oh, Brother!

Our clan had a hospital filled weekend. Hannah has chemo Saturday through Tuesday, so the boys came with us this weekend. For the better part of two days, we all sat in a tiny room, played Sorry, watched Hannah Montana, and ate snacks. When we left on Sunday, Andrew, my oldest, said "The hospital is kinda fun!". You should have seen the dirty look Hannah gave him!


First arriving on Saturday. Hannah was not so happy.






Sunday afternoon, after we left the hospital, we went to visit Tammy and Aiden. Hannah had so much fun playing! Of course, I got some pictures.

Waiting for Chemo While Starving = Cute Pics

On Monday, Hannah had chemo (IT-MTX) in her spinal column, also, called a spinal tap or even less technical, a back poke. This requires anesthesia. She is not allowed to have anything to eat or drink for hours before being put under. The wait for that appointment is torture even when they are running on schedule.

Unfortunately, for us, that was not the case. They were running WAY behind. The procedure did not begin until 1pm. She had not eaten or had anything to drink since 6:00 pm the night before.

On back poke days, we have a deal. I don't eat till she can. It makes it more like, we are in it together. It also lets me know, how much more of a tough chick, this, Hannah Grage, is than me. By noon, my stomach was growling! Hannah? She wasn't even complaining.

I wish I could express the different ways cancer has affected our lives. Most of the time, I could tell you of all that it has robbed us of. Today, I want to tell you, that through this lens, I am appreciating my daughter in ways I never knew possible.

Here are some pictures of us, being silly, passing the time, before they called her name.

Birthdays, Hats, and Making Counts

Oh, I have so much to tell and so many pictures, I can barely begin.

Ok, First.
Yesterday was Kristian's 4th birthday. So, Happy Birthday, Kristian!
His mom, Auntie Janea, Grandma Patty, and the birthday boy, himself, came over Tuesday night to have dinner and play. Here is a picture of Kristian and Hannah tearing into presents.


Second.
Check out this hat.



My co-worker, Barb, gave Hannah these awesome animal hats with fleece on the inside. This one is a mouse. Hannah LOVES it and wears it everywhere. Also, don't be alarmed by the ink on Hannah's face. While I did let Hannah get all tatted up, I did insist she go with fake tattoos.

Third.
She made counts at Friday's appointment. Her ANC was at 2160. That is a very healthy number! She only needed to be at 750 to start the next round of chemo. She started her, four day in a row, chemo schedule yesterday.

Fourth.
Chemo is really the worst, best thing.

Here she is at the start of yesterday's six hour chemo transfusion. Happy and coloring. Half an hour after the chemo started she got a wicked burning headache in her forehead and nose. They slowed down the drip and she eventually felt better, but it was some cold, hard reality served first thing.

Best, of course, so we can keep seeing this smile.


Fifth.
I will leave you with this amazing picture of a wild, rocker girl I know.

Bald is Beautiful

So, the hair is gone. I have never seen a cuter bald little girl, ever. I am, of course, extremely biased.

Her hair got to the point of a mere suggestion and she asked her dad to cut it all off.

I think Aaron has taken it the hardest. The day it was shaved, Aaron walked by her and stopped dead in his tracks. She was asleep. He grabbed his stomach and hunched down a bit. When he turned around he had tears streaming down his face.

Aaron is a kid with a very big heart. He and Hannah spend most of their time together getting on each other's nerves. Wednesday night, however, was all kindness.

Chemo On Hold

On Friday, we found out that Hannah's blood counts, specially, her ANC, were not high enough to receive the next round of chemo. They will recheck her blood counts this Friday and continue with chemo should the numbers look good.

Meanwhile, instead of spending the entire weekend in the hospital, we got to go home. We ran around trying to cram as much fun as we could in those couple of days! I am still a bit behind.

I have fun pictures that I will post, but for now, I'm off to work! Sorry about the short update. Promise to elaborate this evening.

Update: Ok, adding pictures is not technically an update, but it has got to count for something. Right? :-)

My favorite girls, Maddie, Tay, and Hannah, goofing off!