Tuesday, Oct. 30, 2007

Hannah had a good day today, made it through a good part of the day at school. I picked her up at 1pm. She ate a good lunch, then rested a bit before we started making cookies to take to clinic on Thursday. Hannah is going to dress up like a chef and hand out the cookies. She really wanted to SELL them and put the money in Cans for Cancer, but I convinced her that giving them away this time would be best. She said when I turned my head, she would be selling them, ha!

Here are a few pictures I couldn't get to post yesterday, wanted to share them for the weekend. We kept Hannah pretty sheltered this weekend, considering her low counts and fatigue level, so things were pretty low key.

With Colby and their friend Emilie (and Hannah's surprise cake),

Out walking the dog yes, she's in there

With one of Grandma and Grandpa's huge pumpkins they brought from their own garden!

xoxo Kim

Monday, Oct. 29, 2007

Again, mixed results from our clinic visit today. All of her counts were up some except for the hemoglobin, which was down. So, we had to stay for a red blood transfusion. This is the long one. We left the house at 7:30am this morning and got home at 7:30pm. It takes 3 hours to transfuse the blood, since it has to be done very slowly. It also takes a while to get the blood upstairs, it has to be typed and crossed to be sure it matches Hannah's blood and all the antibodies too. Our appointment today was at 10am, they started the transfusion at 2pm. Hannah got in a couple good naps, so that was good!

However, her platelet count was only up to 34 (from 11 last week). Her platelets have to be up to 100 to get chemo this week, so the doctor said to expect a delay. Another delay. We are creeping closer and closer to that Christimas date. Frankly, I can't see any way that we will be done before Christmas but I don't want to tell her that yet. We'll just keep on going because one day it has to be over.

Hannah has been having foot and leg pain when walking. It started last week, and at times is pretty bad. She is limping quite noticeably and it hurts to walk. The doctor today said it was probably due to the Neupogen shots she is getting every day. She has been on it for quite a while now. She got a shot today at clinic (although she always makes me give it, even at clinic) and will get one more shot tomorrow. Her ANC is pretty good, so hopefully this time when we stop the shots it won't drop again until after treatment. I did notice today that when I went to give her the shot, they had prescribed more than twice the dosage she has been getting at home. It was still an acceptable dose for her, but it was the WRONG dose. Again. They had prescribed an acceptable dose for her, but didn't check what she had been getting. They changed it.

Going to try school tomorrow and see how it goes. And, oh yes, Way to go Red Sox! Do you want A-Rod?

xoxo Kim

Thursday, Oct 25, 2007

We hit the clinic today, with the anticipation that they would discontinue Hannah's Neupogen shots and that we would be clinic free until chemo next Thursday. When the doctor arrived, she said Hannah's counts made a "big jump" from last week-unfortunately they were all down, way down. I was so surprised and not expecting it at all, considering that last week the doctor said her counts were on their way up, shots went to every other day and all looked good. Here are her counts:

WBC white cells- .666 (should be 5-13)
ANC- 211 (should be 1500-8000, under 500 is severely neutropenic)
RBC red cells- 2.75 (should be 3.9-5.3)
HgB hemoglobin-8.36 (should be 11.5-16, transfuse RBC under 8)
Platelets-11 (should be 140-400) dangerously low

I did notice today on the way into clinic that Hannah's teeth were bleeding, but she was eating an apple so I didn't think too much about it. I also noticed the large bruise on her leg from the shot last night, bigger than usual. Both of these are warning signs for low platelets-they are the part of the red blood cells that clot your blood. But, when she got her finger stick today, he had to work to get the blood out, so I thought the platelets were most likely fine. WRONG.

Just when you think you you have a handle on how her body reacts to chemo, things change. I can't seem to predict this at all any more. We were not prepared mentally to stay today. Hannah had to be accessed, and she was not happy about that. And, not being prepared we didn't have Hannah's new beach glass necklace (which we absolutely loved Behr family.) It will definitely be with us next time. At least the platelet transfusion only takes 1 hour (from the time they start it, you have to wait for them to be ordered, delivered and prepared). A blood transfusion takes much longer, 3-4 hours-we would probably still be there.

So what does this mean for her treatment next week? We don't know yet. We have to go back to clinic on Monday to get her counts rechecked. Hannah will also stay home from school tomorrow-her counts are just too low to be around other kids and she will probably be too tired anyway. Here are a few pictures from clinic today that we wanted to share with you. Hannah's typical day.

Our first stop at clinic is with Rob. Rob does all the finger sticks and it's the first stop for all kids coming to clinic. This is the small amount of blood they take to check her counts. It takes about 30 minutes or so to get the counts back. Rob is a favorite with Hannah. p.s. notice the Boston hat.

Next we go over to the next room for blood pressure, weight and temperature. This is the easy part of the visit.

Then we are back over to the first room to get accessed. Hannah insisted no pictures during accessing, and since she always sits on my lap for that with me holding her hands, that would have been impossible anyway. Here is Hannah getting her blood pressure and temperature taken at the start of her platelet infusion.

Then we will skip right over to deaccessing.

Here is Hannah flushing her port herself. Doesn't she look proud here?

And lastly, Hannah with her favorite nurse Antoinella. Hannah decided today that she would no longer be mad at the nurse who accessed her, but instead she would be mad at the doctor who ordered it! Yes, she came up with that one all by herself.

xoxo Kim

Wednesday, Oct 24, 2007

I'm so excited, the Red Sox are on........ho hum..........

Seriously, we have a split household right now, with Hannah and I rooting for the Red Sox and Colby and Dave rooting for anybody but. Hannah said she's wearing her Red Sox hat tomorrow, which is pretty risky, considering we have a clinic appointment in the heart of Yankee country. I guess when you're 8 and bald you can get away with pretty much anything.

The girls carved pumpkins last night, although no one touched the "inside yucky stuff" except mom. They were hard at work and look how great they came out! I have to take a picture without the flash so you can see how nice they look all lit up.

Tomorrow we have clinic, so hopefully Hannah's platelets are up from last week, so that she can get her next round of chemo next week. She is also still on Neupogen shots, so we also hope they stop those tomorrow.

This weekend our family is heading to New York City for a pumpkin festival and walk through central park. The event is sponsored by the Pediatic Brain Tumor Foundation and the Sunrise camp for cancer kids to raise money. Hannah is going to donate money from her cans for cancer fund. We hope that the weather holds so we can attend! I'm sure we'll have lots of pictures to share from that. We are all looking forward to participating.

xoxo Kim

Sunday, October 21, 2007

Another busy weekend since Hannah is feeling good and her energy level is pretty good. Saturday was Rally Day at the 4H. Here is Hannah with her purple team and Hannah on Finessa. All riders were split up into teams who then competed against each other in fun. I was a bit apprehensive with her platelet count down, but everything was fun and safe. I ran alongside Hannah during the day to be sure her horse didn't get any ideas about running off. Having said that, a few girls did actually get thrown from their horses. No-one was hurt, thank goodness, but it's still scarey to see. That's the thing about horseback riding, you can be a very good rider and still get thrown if the horse decides (which is why I'm always on the sidelines wringing my hands until each lesson is over). Colby and I spent the rest of the day traveling west to her basketball game, while Dave and Hannah came home, took a trip to the library to pick out new books with Mrs. Baker, hit some tennis balls and hung out with Riley.

Today Hannah went bowling at Mary Kate's birthday party, then came home and drove in to her dad's gym to go swimming. There is an indoor pool there that they like to go to. She was planning on having ice cream when she got home, but said she was too tired. She still gets fatigued at the end of the day, but has no trouble right now making it through the day with lots of activity.

We go back to clinic on Thursday for a recheck on her counts, hopefully her platelets will be up by then and her ANC will be ok so that I can stop giving her the shots.

Thank you to all of you who have supported Hannah in her Cans for Cancer campaign. So far she has received donations from friends in 4 different states! Thank you so much.

Thursday, Oct. 18 2007

Hannah was at clinic today to check her levels. She was so funny when we were walking in she asked if she could watch a movie after we saw the doctor and I said "we are leaving after we see the doctor." She smiled so big and said NO CHEMO? It was pretty funny, and she was so happy.

Her counts were good and bad. Her ANC (for fighting infection) is good, but her platelets (for clotting your blood) were pretty low. They were not quite low enough to transfuse, but not far off. We just have to be careful in the next week not to do anything that would risk bruising, which could cause internal bleeding. He said horseback riding was ok on Saturday as long as Hannah didn't do anything too risky, walking and easy trotting are ok. We go back next week for another blood check, but we expect to be ready for chemo on Nov. 1st and 2nd. The doctor made the decision today to do her next round of chemo the day after Halloween, rather than on Halloween (another happy thing for Hannah today).

Next week when we go to clinic, we will also go for a renal sonogram. Her last MRI showed a cyst on her kidney. They think it's nothing, but wanted a follow up with a sonogram to be sure. We will follow this to be sure it's nothing.

Grandma and Grandpa went home today and we want to say HAPPY BIRTHDAY to Grandpa. We celebrated with him last night, here are a few pictures from the celebration. My parents have been so incredibly supportive and important to us in this, we couldn't have done it without both of you! We hope the next time we see them is in Indiana, rather than here again for another round of chemo.

We also want to say hello to our cousin Noah in Illinois who had to spend a few days in the hospital lately getting his appendix out! We hope you're feeling better really soon. We would love to go fishing with you again this summer at our next family reunion.

xoxo Kim

Check out Hannah's Song of Love

The link to Hannah's Song of Love is now working, just click on the play arrow on the sidebar to your left to hear Hannah's Song. I will post the words later.....

Sunday, October 14, 2007

We got released today with no issues and are happy to be back home. Before leaving, Hannah got a flu injection to help protect her this year against the flu virus. Our entire family now has been vaccinated and it just shows who the wimps are!!

Hannah is on Neupogen shots again so that her levels don't go too low. She is also on two anti-nausea meds for this week, instead of the normal one. She did really well this round, with minimal bouts of nausea and no vomitting, although the ringing in her ears is already back. It did go away last time after this medicine, took a couple of weeks.

It was a very difficult admission for us this time, regardless. The floor was packed with patients, we had to move rooms once due to issues and Hannah also received the wrong dose of medicine two days in a row before it was caught.

You didn't read this incorrectly, she was overdosed, again! I won't go into a lot of technical detail here, but she was given 10 times the amount of diuretic medicine on Wednesday and Thursday with her chemo infusion. The nurse noticed it after the dosage was written differently (correctly) when it came up from pharmacy on Friday. It wasn't an easily identifiable mistake, and even though I check each dosage myself, it was very complicated to figure out and even harder to notice. It wasn't like the medicine bag said 10 grams and the dose should have been 5 grams.

We knew when the attending walked into our room on Friday night at 7pm that something had to be wrong. They don't just visit. Fortunately, all of her levels checked out, and it did not adversely affect her because some of the side effects of overdose of this medicine are quite serious. Thank goodness it wasn't the chemo, or we would be in a different situation. Doesn't leave you with the best of feeling.

But, Round 7 is complete, and we are looking toward the future. Hannah is going to school tomorrow although not that excited about it (it goes without saying that she would rather be home with Grandma baking cookies all day). I hope she can stay for the day, but we'll see. We go back to clinic on Thursday to check levels again.

Thanks to all for the cans that have been dropped off. The first thing Hannah did when we arrived home today was run over and check the bins for cans, and wow, there were lots!

xoxo Kim

Friday, Oct 12, 2007

Today is Friday, Day 4 of this 5 day chemo round. Yesterday she didn't nap at all, and even stayed up to watch Survivor! We try to stay busy during the day with crafts and games and movies. She doesn't like to do too much moving around because of her needle and the IV pole. Her eating is not great, but not terrible. She gets in some rice, rolls, soup, poptarts and of course a bit of candy too.

Grandma and Grandpa came up today for a visit. The brought some new crafts and a nice packet from Mrs. Grossman, Hannah's art teacher. Here is Hannah with her beautiful horse picture she colored. Mrs. Grossman always sends the best goodies, thanks! She slept today for all of about 10 minutes before the doctors came by on their rounds. Hannah is doing well and her counts are good, drifting down a bit but not crashing.

The Smiles for Scott Foundation just brought around the candy cart, so that's always a fun time. Hannah told the nurses at school that she would bring them something, so the cart came back for a second round and Hannah got something for each of them. I don't know if I mentioned before that the Foundation sent Hannah a nice thank you note after we donated the money from her bake sale. Then, a couple weeks after that we received a beautiful plaque from them also, which was personalized for Hannah and specifically thanked her for holding the bake sale for them. We were so touched by it. I spoke quite a bit with Scott's mom today, it's been 2 years since her son Scott died from medulloblastoma. She said Scott was in this room that Hannah is in for quite a while-although he was in it by himself. I'm not sure I could be back here like she is. She said she still hears the beeps of the machines at night and really can't go into the bone marrow transplant unit (where Scott was for quite a while also.)

So we are stocked for candy now, and Hannah is taking a rest, or at least trying in this very noisy room. We'll leave you this picture of Hannah getting her chemo, still smiling.

xoxo Kim

Wednesday, Oct 10, 2007

We're settled in now, second day of chemo under our belt. Hannah is doing well. She was eating well today until this afternoon, and has not eaten anything since, doesn't even want chocolate. She has been in pretty good spirits though, but she cries about once a day that she just wants to go home. Only a few more days I tell her.

We did have some excitement today. Hannah was chosen to be in a commercial for a company called Songs of Love. They are a non profit company that creates unique songs for chronically and terminally ill children. We filled out an information sheet, and they included everything in her song from family and friends names to favorite sports, animals, etc. The Childlife people here were asked to recommend a child and they thought of Hannah. She agreed to do it, so today a film crew showed up to make the production. The commercial will be aired on cable channels, and is intended to get people to donate their old cars (and money too) to the Songs of Love Foundation, so that more children are able to receive songs.

They brought with them Hannah's song, which we had not heard yet. John Beltzer is the creator of the foundation and the singer/songwriter and a very nice person. The Song of Love Foundation has been featured on the Rosie O'Donnell Show, Today Show, CNN, Black Eyed Peas concert, CBS with Dan Rather, and in People Magazine and much more.

John tried to put Hannah at ease while the crew set up everything, but you know Hannah she is pretty quiet around people she doesn't know. It was like being on the set of a big production! They did the takes over and over, and Hannah didn't have to speak much. When they asked her what she thought of her song she said "it's good." Little did I know that I would also be in the commercial (or I probably would have opted for a shower today!!!) She held up well, but was very tired from some of the medicines they had given her earlier. I wasn't sure if she would make it through, but she rallied! It will be interesting to see how it all comes together (I hear Dan Rather will be in it also from his earlier interview). I will post it here if I can do that. I will also post Hannah's song-again, barring any technical difficulties. Here is a link to their website, if you are interested in seeing all they do. Click HERE

Here is a picture of Hannah after the crew left, she fell asleep about 3 minutes after everyone cleared out.

xoxo Kim

Tuesday, Oct 9, 2007

Yes, we're in! Hannah's counts checked out today and we were admitted for Round 7. It took ony 10 and a half hours to get upstairs on the floor into a room, ugh! We got here at 8am (left our house at 6:15am) and didn't get in our room until 6:30 pm tonight. It is very packed here, and every room is full. There were three admissions today, and we were the last to get a room. But, now we are in and settled. They started Hannah's chemo before we came up to the floor, so she was even done with both of her medications by the time we arrived. So far, so good, just fatigued from the 2 anti nausea meds, and still eating well.

Hannah was able to deliver the gifts she bought today to Childlife. They were so happy to receive everything. This is a picture of Jan from Childlife receiving the goods. Since we brought them directly to Childlife, they are able to use them specifically for the hemotology/oncology pedicatric patients that are either in clinic or inpatient. Hannah is going to ask them to break out the Mousetrap game we brought tomorrow!

Hannah also feels the need to mention our Yankees. She told me that now she will root for the Red Sox because the Yankees aren't in it anymore. Just two nights ago when Johnny Damon hit a homerun to lift the team up and begin a rally to win the game, she was insistent that we email Audrey from Spaulding in Boston (who loved Damon before he became a Yankee and cut off his hair). Not many people we know switch from rooting for the Yankees to backing the Red Sox, so to all of our Boston friends, good luck!

Monday, Oct.8, 2007

Hannah's Cans for Cancer reached a total of $357.50 as of today. Since we are anticipating being admitted tomorrow for chemo during the week, Hannah wanted to go out to do some shopping (one of her favorite activities) to get some supplies for Childlife at Schneiders. Here is a picture of her with a trunk full of supplies. She did very well, and still has some money left over. She got so many things like play dough, markers, glue, many games, batteries, blocks, books, dvds, and so much more! We are going to ask them next time for some of their specific requests to ensure we're providing exactly what they need. We went with Grandma, and she and Colby had a great time searching for what they liked. She can't wait to hand them over to Jan and Faye tomorrow!

Thank you to everyone who has helped the cause. We really feel we're making a difference and maybe for a moment are easing the burden of the children with this terrible disease. We can tell you first hand that when you are stuck in clinic for hours getting chemo, or inpatient up on the 4th floor, this is all you have to occupy your time. Even the children who aren't feeling well enough to go out of their rooms enjoy watching a video or playing a game with their mom or dad in their room. We are all making a difference together, thank you so much!

We will update tomorrow from the hospital, hopefully counts will be good enough to stay!

xoxo Kim

Tuesday, Oct 2, 2007

Today at clinic was not what we were hoping for, but not entirely unexpected. Hannah's ANC was only 547, and it has to be at least 750 to begin a new round of chemo. I was somewhat surprised that her doctor did not put her on the neupogen shots to boost her ANC until the next round. The reasoning was that she would only get a few days of shots in before they would have to be stopped 48 hours prior to chemo. Since they don't do routine admissions during the weekend, the earliest she could be admitted to start would be Monday, and we're already scheduled to start next Tuesday. He figures she is on the way back up now, and her body can come up on it's own by Tuesday, so why put her through the shots. They are not a guarantee anyway.

So, Hannah walked out today pretty happy. No accessing, no hospital and no shots! We really don't want her treatments delayed, becuse the chemo is precisely scheduled to be most effective. The longer you get away from that schedule, the less effective the chemo becomes. We are hoping for no more delays. The doctor did increase her appetite stimulant medicine because she has not been eating well over the past 2 weeks and that is going to get even worse as the chemo progresses in the next 3 rounds. She has lost weight the last two visits, and while it has not been a substantial amount, we don't want to see that trend continue.

For the rest of this week, no clinic visits and no treatments. She won't go to school tomorrow due to low counts. We were home schooling today after chemo anyway, and already have the homework for the week, so we'll play it by ear for the rest of the week. I would like her to go to school to keep with her routine, but also don't want to risk an infection prior to the next round. She is also quite tired, her hemoglobin is low, but not dangerously so, and she is sleeping quite a bit. She'll have the next several days to rest up.

xoxo Kim