She Gained Weight!!

On Friday, we had weight check again. Monday and Tuesday of last week she had some high levels of chemo that generally make her sick. Seeing as we only missed having a feeding tube last Monday by .1 kilograms, it was plausible that by Friday she may have lost that small lead.

However, when Hannah stepped on the scales on Friday it read 16.5 (kilograms). She had a .4 gain in 4 days!! We actually screamed and jumped around. I am pretty sure I threw my arms in the air and then screamed and then picked up Hannah to twirl her. Also, she has been eating and drinking at a descent rate since.

You would just not believe how exciting seeing a kid gain weight can be. I don't think the hospital staff was prepared for our level of glee either. hee hee. They all looked at us like we might be crazy. They are right. ;-)



Here is a picture of Hannah and a little boy named Nicolas. She has been rocking the high tops lately. I love it.

Awesome, Awesome Guy

Check this out! My best friend Mac's husband, Brian, rides for the Seattle Cancer Care Alliance. He had these stickers made to put on his bike and the bikes of others. How much does that rock???


He sent me info about a woman named Tatyana, who is doing a triathlon for the Leukemia & Lymphoma Society. She is also putting the Ride for Hannah sticker on her bike because of Brian. Tatyana rides with a team called Team in Training and she put a link to Hannah's blog on her fundraising page.

I'm going to try and link her page, if this doesn't work, it's 'cause I'm not the greatest at this yet and I will call for back up. In the morning when people answer their phones.

Unbelievable

Well, after all that, Hannah came into her appt. today and made weight. It was an incredible jump. Everyone was in shock. Our doctor was grinning from ear to ear, she was so happy. So, no feeding tube today. Thank you, God.

We have weight check again Friday. I really can't say what is going to happen. The type of chemo she had today and will get tomorrow are her worst for nausea. We will see. I'm trying not to be too invested either way. I hope we avoid it, but am going to prepare.

Hannah on the other hand is VERY excited. All weekend she would ask me if the food she was eating had calories. I did name her Hannah Joan Grage. Joan, after my amazing Grandma, who also fought cancer. I have decided if you name your girl Joan, your gonna get a fighter.

Cute Pic Time

In an effort to cheer up, here is a picture of Hannah watering flowers. I love the frog boots. My best friend, Mackenzie, her husband, Brian, and their super adorable, could eat her up, baby, Cadence, are coming over today so Hannah is watering with a dress on!

Stupid, Stupid Cancer

We went in for a weight check Friday. She has lost weight. She will get the feeding tube. Monday. I will get a class on how to take care of my baby with a feeding tube.

Yesterday, I felt cut off at the knees over this one. Hannah was really mad at first. She yelled that she would rip that tube right out. I felt so bad for her. She is settling into the idea a bit more now.

We tried everything and fought so hard to avoid this. There is no getting around the fact that she will have to deal with more uncomfortable, crappy things to fight cancer. I was really hoping to spare her this one. The tube goes down the nose into the stomach. From the nose, the tube is taped to the side of the face and attached to a backpack with a machine that dispenses liquid food. The machine vibrates and hums.

In the end, the girl needs some calories. This will be a huge benefit to her even if it is awkward at first. It will help with her nausea and give her more energy. I am told it will actually be a relief once she gets over that the tube is there. I'm sure that's true. It's a long fight, Leukemia. I tell you what, despite the pain, or tears, Hannah has the fight in her.

Week Recap

I haven't updated for awhile and I do apologise. We have had a couple of big changes in our lives.

We moved. After five years in a, not bad sized, apartment we moved to a house. We needed the space and in the end it actually costs me less. The house has a rainbow play structure (wood swing/slide/fort set) in the backyard and no down stairs neighbors! That is a pretty big deal for us. Hannah's room has Barbie pink walls and the boys got a cool blue-gray color that they love. (Thank you, Steve!!) Everyone loves being in a house. Hannah jumps on the floor now and then, just 'cause she can and it is funny every time.

It took us a bit of time to get used to the idea that we could go outside. Of course, we KNEW we could, but it seemed to take awhile to have our brains route the yard as usable, accessible space. Now, the kids and I are out there often.

Hannah has been extremely good at following the rules for playing outside. There are lots of things that are off limits and that is hard. She can, however, water plants and play on the swing set. She has barbie gardening gloves and hat that she wears to over-water all my flowers. For her, it's heaven and let's be real, that is worth ruining those flowers right now.

For me, moving has been insane. The house and yard need a ton of work. That and my actual work have been very consuming and slightly stressful recently.

The main thing stressing me out was finding a nanny for Hannah. I had been searching for just the right person to stay with Hannah during the non-hospital days while I work. That is so much harder than it sounds.

Fortunately, I have had wonderful friends and family who helped me out until now, but I needed to find someone permanent. I had to find not only someone who was qualified to take care of a child currently undergoing treatment for cancer, but someone willing/able to do the job consistently, with kindness and patience. Oh, and did I mention, someone who would do this for less than a million dollars? Which, it seems, is the going rate. Just ask any nanny agency, I talked to them all. That is a small exaggeration.

Anyway, I did finally find someone. She is very kind, loves my three kids (they are pretty fun), and helps me not worry as much while I am working.

On the Hannah cancer front, she is doing OK. We don't have to go the hospital as much in this phase of treatment, so that is nice. The chemo drugs she is on have lasting effects that make her nauseous, cranky, tired, and have leg and feet pain. She isn't eating near enough and we have weight check again this Friday. So, other than that things are perfect. :-)

Backyard Camping?

Here is a cute picture of Hannah from last year's camping trip. It was very early morning and she looks tired, but adorable.


For the last few years we have made going camping in August a ritual. It is our summer vacation plan. For all the obvious reasons, we will not be pulling out the gear and heading over the mountains, this time.

My experiences camping as a kid have provided me with some unrealistic expectations of how much fun could be had. Needless to say, camping as a parent, is labor intensive and fairly short on the fun I remember. So, I was a bit surprised when my three starting complaining about missing the camping trip, to be echoing the sentiment.

With every thing else going on, it is hard to hear Hannah feeling sad about the things she is missing out on. I would like her to get to concentrate on the things she can do. I think, I may just have to pull out the tent, at least just for the backyard. We could do smores and hot dogs or something. Ah! We could call it Chemo Camping! That might be pushing it.

Anyway, in other Hannah news, she is handling this phase of treatment pretty well. We had a rocky weekend with nausea. She was throwing up more than normal and I had to bring out the big guns in anti-nausea medicine. The heavy duty stuff can make her very drowsy or out of it, so it is a last resort but I am happy it is there. We go in Thursday for more chemo and nausea med refills!

Results are in...kinda

The answer is long. For those who do not want to read through it, her cancer levels did not go up. In our world if it isn't bad news; it's good news!

Hannah had a spinal procedure this week. Part of it was to give her chemo in her spinal column and part of it was a bone marrow check for cancer. This BMA was collected for research only and it is going to a larger study. That study is evaluating kids like Hannah who have some residual cancer left in their bodies after induction. The current method of treating the kids who didn't respond well to the first round of chemo is to give them more aggressive chemo. The data they are collecting will determine if that plan actually helps or if the rate of relapse stays the same regardless.

The reason I explained all that, is the results I was waiting for from her BMA are not really available to me or her doctors. They are for research. As her team of doctors explained to me yesterday, unless her cancer levels changed they will not release the numbers, even to the doctors. They can't risk comprising the study.

So, her protocol stays the same. Her risk and prognosis stays the same. I have to be honest, that is not exactly what I was hoping for. I was hoping they were going to tell me her cancer levels were at zero after all that crazy chemo. On the plus side, it isn't worse! And I can live with that. ;-) Hannah has had good energy and appetite all week, which is very nice. Working every day to beat back that feeding tube.

Hope you all have a great weekend!

Whew, she made it

We went to Children's to see if Hannah's body had recovered enough from the last round of chemo to continue on.

I am happy to report to you that her ANC was well over the required 750!!! Also, for those keeping track, her weight went up just enough to be above her cut off point, putting off the dreaded feeding tube again.

Apparently, two weeks after her doctors say she should be ready for more treatment, is when she will actually ready for more treatment. Every time. I'm afraid that girl is every bit as stubborn as her mother. ;-)

We have officially made it out of the Consolidation phase and on to the next, IM. It is supposed to be an easier phase and we are so excited for anything they are willing to call "easy".

It's a good day, no getting around it. I am just plain happy.