Cupcakes and Super Human Strength

Those two things don't normally go together but that is how the week has been. Yesterday, Hannah was making cupcakes for mommy. Super cute. They tasted awful. Couldn't begin to describe.
Please don't tell her.

The day prior was a chemo day. Now that we are in the phase IM, we only go every ten days. I forgot how much more resistant to being at the hospital this makes her. It started out fine. The boys came too and everyone was engrossed in Sponge Bob while she had her exam.





The doctor went over the exam with me. Her ANC is still good. Platelets are down, red blood cells steady. Her weight is down. Might need a feeding tube next visit. We handled all this fine. Then, the nurse came to take us to the infusion room for chemo.

This triggered a fight or flight reaction in my youngest child. She started mildly pleading not to go to that room. Then screaming. Then screaming, kicking, hitting, and spitting. Screaming she hated that room. Screaming she would not go in to that room. Still being in the room obviously meant more drastic measures were needed. She threw anything near her. Her cup of water? All over the floor. Clawed at me when I tried to get ahold of her.

In her final move before I got a good grip on her, she tried to hurl a giant brown trash can that held all of the used chemo syringes. Of course, it is far wider around then her little arms could grab and almost as tall as her. I couldn't believe she was even attempting it. It all happened so fast. She didn't get much height. Really, it was more of a knocking over of said trash can with a bit of sliding across the floor thrown in. And then I had her.

The boys sat frozen, mouths open. The nurse took only a pause before lending a helpful hand. (they have seen it all) I was so many things; angry, embarrassed, so deeply sad for her. I felt bad for the boys and the nurse. There isn't time for that. Hannah needed her chemo. She calmed down when they started. It didn't take long before she felt sick. She was right about the room.

We went home. I felt dead. Some days are so damn hard.

The next day at work I was telling Galen what happened. He pointed out something I hadn't thought of. I was thinking I should not have exposed the boys. He suggested that it might bring a greater understanding for them. After Christmas, I think Aaron was all ready to sign up for this cancer thing. Sure you lose your hair, but random people are nice to you, send presents, and you get to eat lots of normally off limit food. Maybe getting to see a little of what she is dealing with, will help him deal, too. Or, it will cause deep psychological damage that can never be undone. I don't know! I hope not.

Bouncing from this day of trauma back into her normal, cute little five year old life is remarkable to me. I am still exhausted! However, this is how cupcakes and super strength go together over at the Grage household.

Holiday Highlights

Here is Aaron and Hannah on Christmas Eve at our church. I can't believe how much taller Aaron is! This night is the first time Hannah has gone back to our church, Church by the Side of the Road, (love that name) since she was diagnosed. In a sort of indirect, Christmas miracle type way, Hannah's ANC was up to almost 2000 and we were able to go. She loves going to church. Her favorite part is all the singing. At our church? They can sing!

During the hospital stay when we were first told she had cancer, Hannah had a song we call, Yes, Lord, (the real name is something else) stuck in her head and would go around singing it. As she couldn't get to church to hear it, they sent her a CD recording of that song. It is in my car to this day and we listen to it, by request mind you, on the way to get chemo. It is a song about trading your pain for the joy of the lord.

She also really loves our Pastor. Infact, for a long time, she thought he was God. Pastor Proctor came to visit her at the hospital and she kept saying God came to see her. That was pretty cute. However, after awhile I forgot that was how she referred to him. It was really disturbing to hear her continue to ask to get to go to God until I remembered that she actually just meant she wanted to go to church and see Pastor Proctor!

In other Christmas miracle-ish events, our family received some extra special love this Christmas from one of my customers at work. Diamond B is an HVAC contractor and one of my favorite customers. I haven't been able to see them as often as I used to since Hannah's diagnosis. They are located in Bellingham which is three hours from me. They are a wonderful group of people. John, in the shop, always has great stories of the adventures he and his family have.

I got a call to come get a package from my office, which is normal. I get sent samples all the time. This time, is was a giant box from Diamond B to my family. Everyone was excited to see what was inside. No one was prepared for what it was. Around thirteen separate, wrapped presents! Toys and books, gift cards for the boys, a zoo gift card for the family, and a card signed by everyone from Diamond B!

Hannah was in heaven. Talk about feeling the love. Thank you so much. Now I'm getting all whelly, so I am going to end with a picture of Hannah and her new dolphin pillow pet. She hearts that thing. Oh so much. ;-)

PEG Shot Reaction

This is a picture of Hannah waking up from anaesthesia last week. She had chemo in her spinal column or as they call it, back poke, as well as the PEG shot in her legs. She no longer wakes up angry from this procedure, but she rarely wakes this happy. She had the sweetest smile, I had to take a picture. The first thing she said was "Can I have pizza?".

It was a long day. It was three in the afternoon when she woke from the back poke, so she had gone all day without eating. However, she still had to wait a little longer as we are required to stay under observation for an hour after receiving the PEG, to watch for an allergic reaction.

The PEG, or Pegaspargase, is a fantastic anti-cancer drug. It basically works by starving cells of the all important chemical called asparagine. All cells need this chemical to stay alive. Normal cells can make it. Cancer cells cannot. So this enzyme, asparaginase,(PEG) breaks down the chemical, asparagine in the body. The good cells will continue, cancer cells will die. Super awesome.

Until you get to the side effects. Nothing is so comforting as reading up on what could potentially occur! For this particular drug, having a serious allergic reaction is common and the chances of having a reaction increase with every dose given. Hannah was right around a 40% chance when she had her last PEG. If an allergy develops, no more PEG shots can be given. So, I am excited for every successful dose she gets.

This time, Hannah had a reaction. Maybe. She started getting little bumps on her head. I didn't think much of it at first, and we went home. By Sunday evening they were noticeable. A typical allergic reaction in the form of a rash would have been hives. Her doctor confirmed that these small, pimple like bumps were definitely not that. We are still going back and forth as to whether or not this was an actual PEG reaction. It is a very tough call. Not getting this drug would be a set back for sure, but using it again after a sensitivity has developed would most certainly cause her to go into anaphylactic shock.

We have a month to decide how to proceed before her next PEG shot is ordered. Dr. Blythe Thompson, who is the oncologist super hero, is going to assist in making this decision. As it was said to me yesterday, "She is THE Leukemia expert". Thank God. This dilemma feels too big for me, alone.

Take that, Cancer!

Last week I was sure Hannah would make counts. She didn't. This week I was pretty sure she would make it. I worried, anyway. After all, I was just wrong. Three weeks of no chemo is too much.

Waiting for the ANC number to come back at her appointment this afternoon was miserable. Infact, I have been miserable to be around for this entire week, I would imagine. Waiting is, So. Really. Hard.

The doctor came in the first time, and said the numbers weren't back yet. Then, she examined Hannah and asked me a ton of questions. I couldn't think! I couldn't give answers! I needed to have the numbers! Finally, she left (she is very nice and I like her, I was just moody) and Hannah watched a cartoon while we waited for those annoyingly pesky numbers. If Hannah's ANC was above 750, she could start chemo today. She would begin the Interim Maintenance 2, phase. Anything lower than 750 was going to be a problem.

Ten minutes later the doctor came back, opened the door, looked at me, smiled, and nodded. Here is what I did inside my head.
"YYYYYYYYYYYYYEEEEEEEEEEESSSSSSSSSSSS!!!!!!!!!!"

Her ANC was at 1566!! Yeah baby! We headed right over to the infusion room for chemo. Hannah is back to fighting cancer and I am, hopefully, going to sleep tonight!

Here is a picture of Hannah as Miss. Speedracer. She was at her dad's on Wednesday and the two of them did some racing. Hannah, in this cool seat, while pretending to drive along with a pink and purple race car game. Her dad says she is the future of motorsports. She had a total blast. Hannah adores this sort of thing. I have to admit, Alex might be right about the motorsports. I am going to go gray early, I can tell.

Beads of Courage

This is a program that Seattle Children's Hospital has started participating in. It is designed to honor the journey patients take while receiving care for cancer. Each kid gets a necklace with their name in block letters to start. Specific colored or shaped beads are given every time they experience something else on the bead guide.

There is literally a bead for everything; port access, going bald, feeding tube placement, MRI, bone marrow aspirations, blood transfusions, and so many more. Hannah is going to need a necklace extension as soon as her first set of beads come in!

The nurse who set Hannah's up, told us how excited the children get to receive beads. She said most of the kids like to hang their necklaces from their IV poles when they are inpatients. It is sort of a way to brag about all they have been through. The nurse proudly told me how one boy's necklace was six pounds!

I am so instantly in love with this idea. What an amazing way to turn something that might otherwise be daunting emotionally into a tangible object of pride. The website for this is www.beadsofcourage.org and the CBS Morning Show is apparently going have a piece about it on Sunday the 12th. I don't have cable, so won't be watching, but if anyone does, could you maybe give me an update?

Waiting room cuteness!


We found out Thursday that Hannah's chemo is still on hold. Her ANC last Friday was 640. She was so close to the 750 number that I thought, this week, for sure, she would start chemo. Unfortunately, her ANC dipped down to 458. Her doctor thinks something is going on with her white blood count.

Her monocytes counts (type of white blood) were abnormally high. That might mean she has an infection of some sort brewing that hasn't presented in other forms yet. It could also mean she just fought off one. Other possibilities exist but we really won't know anything till this Thursday. I am just going to hope for the best and pray.

I try not to get too upset about the ups and downs of treatment, although every now and then, the feeling that you are playing with fire, slaps you in the face. Hannah is only four months away from her one year mark. There have been many worrisome things that she has made it through. It does help develop your confidence when faced with a new one.

At any rate, making counts next week would really rock. Please, if you get a chance, say a quick prayer for Hannah. Three weeks is the most they will let her go without chemo before they admit her to the hospital.

She was sure not minding hospital food this week, though. This was her lunch!!

Temperamental

There is something about having a really low ANC, overall immunity blood count, that makes Hannah a little on the ragey side. She just doesn't seem to be able to handle much.

I know this, because, she said pretty close to exactly that, on Tuesday. She wanted to watch a movie. When I asked which one, she lost it. Her hands covering her ears, screaming that she just can't handle that right now. As obstinate as that sounds, she actually looked panicked. I went ahead and picked out the movie for her.

This week has been a tricky egg shell walk for everyone in our household. We almost lost the nanny. She was feeling like her presence was an added irritant to Hannah and that she wasn't helping her. After being assured she wasn't an irritant, would be impossible to replace, and that helping Hannah's mommy stay employed WAS helping, she seemed to feel better.

It is a fine line to walk, for me as well. Which behaviors do I take on, and what ones do I just hold her though? Hannah snaps at the slightest thing, has patience for nothing, but wants to have us all around. The frustration level is high. I keep trying to remind everyone, myself included, to keep the bigger picture in mind. A walk in her shoes would surely grant us the insight to understand her moods.


Me and The Grump, after she just yelled for no one to look at her OR talk to her. Of course, the picture was taken anyway. Sibling fights.


As for her chemo treatment, it is still on hold while we wait for her blood counts to hit that magic 750 number. At Friday's appointment, we found out that her ANC was close, at 640. There is already a difference in attitude. I think she will be at 750 by this Friday.