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!
Friday, July 16, 2010
Tuesday, July 13, 2010
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.
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.
Monday, July 12, 2010
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.
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.
Friday, July 9, 2010
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.
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.
Wednesday, July 7, 2010
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!
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!
Friday, July 2, 2010
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.
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.
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.
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