Monday, July 30, 2007

Hannah had her checkup today at the clinic. Her counts were:
WBC 2.36 (range is 5.0-13.0)
ANC 1650 (range is 1500-8000)
HbG 9.01 (range is 11.5-16.0)
RBC 2.73 (range is 3.90-5.30)
Platelets 75,000 (range is 140,000-400,000)
Her white blood cells and neutrophils are good due to the daily shots to boost them, but her red blood cells and platelets are low, because the shots do not affect those. She is due for chemo next week, but if her platelets don't come up to at least 100,000, it will have to be delayed. She still has 10 days to rebound, so we're hopeful that they will come back in the normal range.

She did really well today at clinic. Last night when she discovered we were only going for a finger stick, no other pokes, she said "oh that's easy". And it was quite easy, no big drama. The shot tonight was quick and less screaming also. We have to continue the shots until Friday, when we go for another check on her counts.

On the way home today we stopped at the Sunrise Day Camp, a camp for kids with cancer and their siblings. Our friend Jacob and his brother attend, and they really like it. Hannah thought it looked great, especially the 4 big pools they have, so I am signing them up and we'll see how they do for a day, then more if they enjoy it. I saw many other kids with no hair, scarves and hats today, so Hannah will feel right at home. Also, she will be able to stay with her sister, since they are in the same age group. Hannah is very shy now, and hides behind me whenever we go anywhere. I think this experience, if she can make it through the first day, will be good for her self esteem and independence. They are especially geared towards kids with cancer, and are so familiar with their issues and special needs, which makes me comfortable in leaving her there. I'll let you know how it goes.

Hi to Joe and Colleen who just got back from camping!

Here are a couple of shots of Hannah riding at IRIE, the therapuetic riding program sponsored for her by the East End Livestock and Horseman's Association. Thank you so much!

xoxo Kim

Sunday, July 29, 2007

Hannah has been doing well, keeping busy with her tutoring, horseback riding, putt-putt golfing (once with Grandma and once with Grandpa) and now fishing. Her nausea from this last round is in check, and her energy level is pretty good. She has not taken a nap all week, and is doing a good job keeping up with her sister and everyone. She continues to get the daily shots and tomorrow we go to clinic to check her counts. She still fights the daily shots, but it has gotten a tad bit better, with less screaming, less delay and more theatrics then actual pain. I am assuming that we will have to continue the shots for a while longer, since her nadir (low point) is usually about 14 days out (they count it from the beginning of chemo, so that would be this coming Thursday). We'll see. I am purposely NOT packing a bag, so as not to jinx us into being admitted for any reason.

On Saturday, she started complaining of "noise" in her ears. I headed right away to the computer, to discover that tinnitus, or ringing in the ears, is a common side effect of cisplatinum (her chemo drug last week.) The focus of cisplatin is it's toxicity to the kidneys, hearing, neuro issues and blood levels. I had not yet read about tinnitus. Most information says it is common, and most often not permanent. Believe it or not, only 7% of people experience tinnitus from cisplatin. Again, Hannah is in that small percentage of people who get the uncommon reaction. I have already emailed her oncologist, to give him a heads up before our meeting tomorrow.

Here is a picture of Hannah in her garden. Notice the beautiful sign behind her "Garden of Hope" that was made for her by her friend Savannah's dad. Flowers are planted in front of it from the fundraiser back in April, and will bloom again in the spring. Hannah's sunflowers that we planted are blooming and beautiful. She had a strawberry to pick on her strawberry plant, and her other flowers are blooming and pretty. She enjoys picking the tomatoes in the garden with me, and they are just beginning to ripen.

For those of you that don't know, Hannah loves to fish. She and Dave and Colby went out today in the boat, after 2 days of trying, but the tide was too low in the creek to get the boat out. After a few hours, they came back with news of ONE FISH. Hannah caught a fish, a pretty big one, but Dad and Colby had nothing. Hannah still talks about the big catfish she caught at our family reunion last year at Aunt Susie's house when fishing with her cousins and sister (remember that Logan and Noah?)

Grandma and Grandpa left today to go back home. Hannah asked when we could go to their house again (she likes to go in the summer especially for all of that swimming in Mr. Tom and Mrs. Debbie's pool). I am hoping we will be able to go at Christmas time, chemo will be done and maybe things will settle down a bit then. One last photo, here are the girls with Grandma playing putt putt golf on a very hot day!xoxo Kim

Wednesday, July 25, 2007

I guess Hannah saved the best for last, Wednesday afternoon she started to feel a bit of nausea at the hospital, she got sick after we got home. We're still trying to flush her system with lots of water to get the chemo out of her body and be sure her kidneys are not affected. We started the shots at home today, with lots of fanfare and screaming. Even with the shots, her counts will continue to go down, maybe just not so far. We have to be careful now about germs, not going to crowded places, no one around with colds and lots of handwashing. The last thing we want is an infection that would send us back to the hotel!
We thought you might enjoy a picture of Hannah with her bandaid collection. Her latest edition to the collection are the Boo bandaids (Halloween) which we didn't have!! Thanks to the Mackins.

xoxo Kim

Tuesday, July 24, 2007

I have marked our chemo schedule as DONE WITH ROUND 4! We just received the all clear to go home and we'll leave around 4pm, when she is done with hydration. This round has gone very well for us, nothing crazy to report and we love that! She is tired and a bit run down, as a product of the chemo, but that is much easier to deal with than the nausea and vomitting.

She will have a lot of work to do with physical and occupational therapy when she gets home. Whenever she has her port accessed, she walks humped over with her left shoulder slumped way down, like a little old lady because she says it hurts to stand up straight and pull her shoulders back. After 6 days of walking like that, I know she'll need some time to adjust back again. She also doesn't really use her left hand or arm when accessed. Her arm is almost glued to the side of her body, again because of the port. She asked me if we could "make a deal" that while she was in the hospital and accessed that she could walk like that, and after she was deaccessed, she would stand up straight again. I think she was tired of Dave and I always telling her to stand up straight. So I made the deal with her. She is working with occupational therapy right now. She is working on 2 birthday cards for BT (brain tumor) kids whose parents are trying to get cards from every state for their birthday, pretty cool and she is enjoying that. Physical therapy came yesterday but said she needs more OT while in the hospital because she is doing so well with physical therapy that she is really out of their league! They really focus on kids that can't walk at all, or really have trouble with very basic things like sitting up, walking, etc.

So we are all packed and set to leave. Only one "black cloud" hanging and that is Hannah has to start on her neupogen shots before we leave the hospital to help elevate her counts. The doctor automatically started her on them this time, rather than waiting for her counts to go so low that she gets an infection again. Once she heard that, she was pretty mad because she hates those shots. I will have to continue them at home, at least through our next clinic visit which is Tuesday of next week.

Thanks again for your thoughts and prayers. xoxo Kim

Sunday, July 22, 2007

Day 4 of chemo for this round, and Hannah continues to do well. We have not seen the complications that we did during her first try with this drug back in May. I'm almost afraid to even write it here, but she has had no vomitting, not even really any nausea. She also has not exhibited signs of the neuropathy that she did the first time. It could be quite possible that the Vitamin E regime we put her on exactly for this purpose is really working!

Only 1 more day of chemo on Monday, then we will be here 24 hours post chemo for hydration. We will go home on Tuesday evening hopefully. Dave and Colby came up today for a visit. Hannah was actually quite upset when they first got here. She and I had been working on some math from school, and she was struggling a bit, which really upset her. I gave her a break, then made her go back and revisit it to show herself that she really could do it (and she could). It just aggrevates her when she thinks she can't do something easily-that goes for anything including schoolwork, therapy, etc. She finally calmed down and they had a nice visit. Then, Aunt Josephine came up to bring the famous ravioli. Hannah ate three raviolis, although she wouldn't accept any of the yummy broccoli. Josephine brought up quite a smorgesboard of food, both from her and her mom and sister. Thank you so much, it really makes a difference. Grandma also sent up some yummy lemon cake, which Hannah refused to eat without sprinkles (and I told mom not to put them on it). Tomorrow Dave will bring up the sprinkles.

Nothing else to report right now. We moved today into our own room, a few kids have been discharged. It's nice to be in our own "suite" for a change. Last night I was awoken at 1:30am by a man tapping me on the shoulder telling me I needed to step out of the room. They brought in a portable x-ray machine to take an xray of our roommate. He covered Hannah with a protective cover, and I stood in the doorway while he performed the x-ray. Then he came back at 4am, and I thought he wanted to do another x-ray, but just wanted to confirm that the girl had a safety pin on the OUTSIDE of her shirt! When the surgeons came in to visit at 6am, I was still blurry eyed, and when the doctors came in at 7am, I figured I might as well bag it and just get up. So, for tonight at least, it's very calm and quiet. We'll see how long it stays that way! Well here comes the nurse with more meds!!!!!!

xoxo Kim

Saturday, July 21, 2007

Hannah continues to do well this round. She has not had any nausea so far, attributed to the 2 anti-nausea meds she is on round the clock. She is very tired and emotionally volatile at times, but who could blame her.

We had a bit of drama this afternoon when I noticed upon our walk to the playroom for some glitter crafts that Hannah was a bit wobbly. I then had her walk the toe to heel line, and she did very poorly. I notified the doctor here-the resident-that she may be exhibiting signs of the neuropathy beginning, as she had with this medicine the first round. Although it was not significant, I wanted them to be aware so that it could be monitored. Well, the resident notified the fellow who notified the attending and next thing you know they were holding chemo for Hannah for today. I was NOT happy with this, especially considering the attending had not even bothered to come up and evaluate her. The fellow had not seen her either. This was all based on the opinion of the resident who admitted to me when I asked for her opinion, that she "was not experienced enough to know" one way or the other about Hannah's symptoms. So, to end this long story I told them I wanted to speak to either the attending doctor (who was now already at home) or Hannah's doctor before this decision to hold the chemo was made. The fellow arrived, watched her walk for all of 10 seconds and instructed the chemo to be given as scheduled. Oh boy! We will be keeping a close eye on this as she progresses with the last 2 days of the chemo to be sure the neuropathy is not getting worse.

Hannah got a visit from Grandma and Grandpa today, but after a bit of time was overwhelmed and lay down to take a nap. Colby and dad are coming up tomorrow for the day with some of Grandma's lemon cake. Up until dinner tonight, Hannah had only had 2 bites of peaches and 2 cookies. For dinner though she ate quite a bit of edamame (soy beans, so good for you and fun to eat!)and rice with butter. Reminds me of Boston, when this was her favorite dinner of choice most nights. Aunt Josephine is also bringing her famed ravioli, one of Hannah's utmost favorites tomorrow, so I'm sure she'll be eating that too. So many of these kids here have eating problems. The floor is full of kids who can't eat, and who spend much of their time throwing up. It's very hard to see.

Hannah's is tucked in for the night, and things are relatively quiet and calm for the moment, so I'm signing off for some sleep also until the next bathroom break.


Friday, July 20, 2007

Hannah is resting comfortably. Her chemo is going as scheduled, and so far no nausea, just very tired and lethargic. Her appetite has really gone downhill since we got here, today she ate only 2 poptarts for breakfast and a bit of white rice for lunch, with a chips and salsa snack. No dinner. It's to be expected during the chemo, even though she's on Megace still. I heard her tell Grandma today to bring up some lemon cake with frosting tomorrow, so we'll see how that goes.

Her counts are about the same as yesterday, everything is holding stable. Today we spent some time working on the "100 projects kit" (thanks to Mary Kate and her mom) trying to make pom pom animals. Hannah was laughing out loud at the sorry animal we tried to make. It kept us busy for a while. Hannah was feeling well enough too to make a trip to the hospital gift shop to browse and check out everything there. We also got a visit from the Friday afternoon candy wagon called Smiles for Scott. Scott was a little boy with medulloblastoma who died at age 5 in 2005. He was treated here at Schneider's. His parents started the Smiles for Scott foundation, and this candy cart is one of the many many things they do to try to make cancer easier for kids. Candy day is a day all the kids look forward to in the hospital. Scott's mom is one of the volunteers who come around with the cart (which I find absolutely amazing and inspiring.)

Goodnight all, xoxo Kim

Thursday, July 19, 2007

We're in the hospital now for Round 4. Hannah's counts this morning were low as a result of the last round of chemo, but they moved ahead anyway with the chemo. The doctor explained that this round will most likely be harder on her than previous, since the blood and bone marrow don't rebound as quickly because they have already been compromised by chemo and aren't as strong as normal.

WBC 1.68 (range is 5.0-14.5)
ANC 940 (range is 1500-7500)
Hemoblobin, RBC and Platelets all in normal range

It's been a long day for us, and Hannah is already sleeping. We arrived at the hospital this morning at 9:30am and didn't get into our room until 5:00pm. Until then, we were in the hall waiting for the bed. They didn't start chemo until 8pm tonight, so we waited a long time. It is very busy here on the onocology floor, and all beds (plus some) are full.

I told Hannah that our stay here this time is going to be a "craft bonanza." Already she has painted her own t-shirt downstairs and colored several pictures in her new horse coloring book that she likes very much (thank you to Mrs. Grossman.) She also worked a bit with the tutor today.
xoxo Kim

Sunday, July 15, 2007

We just got back from Vermont with our cousins Kate and Lynsey and Aunt Paige and Aunt Kathleen. We were going, going, going all weekend long. Here is a picture of Hannah with Colby, Kate, Lynsey and Paige feeding the baby sheep at Adams Farm. Hannah had been waiting all day for that!

The next picture is the four of us on top of Mount Snow. Do we look tired and sweaty? We took the chair lift 2/3 of the way up the mountain and then hiked straight up the last 1/3. Dave did the brunt of the work, carrying Hannah on the uphills while I took her on the easier areas.

And lastly, here are the girls on one of their many smore making nights. Hannah must have eaten about 20 smores while we were there, then she had us make them again after dinner tonight. Lots of yummy calories! We also found the time to take a trail ride and do some fishing. Hannah took a few naps and held up very well, wanting to keep up with the girls.

It was nice to have some true "summer" time together before coming back to school, therapy and hospital visits again. xoxoKim

Tuesday, July 10, 2007

Done with Round 3!! We spent another full day in the clinic today, and now we are finished with Round 3. Today her counts were all acceptable (even if not in their normal range) and her weight was down by about 1/2 pound, not a big deal.

We have a short break until next Thursday, Round 4. We are now starting on the repeat of Cycles 1, 2 and 3 so now I know what to watch for with each cycle, compared to how she reacted the first time around. Her doctor pointed out today that Hannah tolerated this round much better than others with regards to neuropathy. He said it could be the vitamin E regimen we have her on. The telling factor will be our next round, again of cisplatin beginning next week for 5 days. If she doesn’t get the neuropathy exhibited quite strongly the first time around, the Vit E is definitely helping with that. We’ll see!

I would like to say that today was easier in the clinic, but it was not. Hannah is having a tough time lately, probably because she is so out of control of this whole process. Yesterday she ran screaming when one of the therapists arrived at our house. She refused to participate (I think it's all about control of what she does and when she does it, and she didn't want to do it!) Same with the accessing today, she is at a total loss of control over the situation. I can't imagine that it will do anything but get worse from here on in. She is very interested now in "how much chemo is left, how many days, when is our next chemo?" I am always honest and up front with her, but to hear "Thanksgiving" is tough for her, and a long way off. Thank goodness that otherwise, she seems happy.

Tomorrow is another full day of tutoring and therapy (even though she is insistent that we go to the aquarium.) Thursday we will head to Vermont for the weekend for some time with our cousins, the Prokops from Texas.


Sunday, July 8, 2007

We had a good weekend with Aunt Susie and Sydney visiting. We headed out to the beach on Friday and horseback riding on Saturday and a nice evening ride on the boat. Hannah continues to feel good, and is still on the anti-nausea meds. Today I gave her only one dose, and she did mention some stomach issues in the evening, so it's back to the 2 daily doses for the time being. Her counts are heading down slowly, but not drastically during this cycle. Right now she's at:

WBC 3.4 (white blood cells) low and out of range, but not drastic
ANC 2278 Good
HgB 11.4 low and out of range, but not drastic
Platelets 371 Good

She is still quite tired, no nap today, but went to bed at 7:00pm. This Tuesday is the last day in Round 3, yahoo! Then we have a break until July 19th (the 6 day inpatient stay). My mom and dad are coming out to stay for the week, so that will be a big help.

We received a nutritional counseling report from Dr. Jeanne Wallace courtesy of Meryl (thank you so much). I'm glad we went ahead with the analysis, the report does offer some comprehensive information regarding ideas on supplements and nutrition. I have yet to read the entire 80+ page report, but I am already interested in many of the suggestions. the report mentions several items I was already researching, and backs up the data I had already collected on many issues (like angiogenesis, inflammation, supplements, etc.). I'm collecting supporting documentation and will present everything to Hannah's oncologist for his review before I implement any of the complimentary strategies.

We heard from two of our Boston family this week-Audrey, the best childlife specialist ever and Nicholas-our friend from Spaulding. It was great to hear from both of you and look forward to making contact!

xoxo Kim

Thursday, July , 2007

Well I think the chemo is again catching up with Hannah. Late yesterday afternoon after a good nap, Hannah felt sick and ending up throwing up. She naps every day and then actually got sick. I gave her a new anti-nausea med that seemed to help also. She rallied afterwards and felt well enough to go to the Ducks game to watch the fireworks, which were great! She was extremely tired, but did have fun. Here is a photo of Hannah, Colby and Sydney with Buddy Harrellson from the Mets '69 championship team, who is a part owner of the Ducks and was signing autographs at the game.

Success, today we made it to Build a Bear for Hannah's 8th birthday party. What a great place, everyone had so much fun, and they really made Hannah feel special.Her bear was stuffed with lots of love from all of her friends at the party. Lots of fun, and Hannah took a 3 hour nap after we returned! Here is a picture of all of the friends with their creations. Here is a photo of the party group, and Hannah and Colby with cousins Sydney and Sarah.

After two days of nonstop fun with cousin Sydney and Aunt Susie we are now going to take it easy for a couple of days for the rest of their visit. We're hoping the weather gets better so we can do some swimming tomorrow, then of course horseback riding and the street fair on Saturday.

I do like the suggestions on how to make the port process a bit easier. I know Hannah find that very interesting, and can't wait to read them to her. I'll let you know which of the ideas she likes the best.


Wednesday, July 4, 2007

Another day of chemo down, and Hannah is doing well. The clinic was very crowded yesterday, probably because today was a holiday. Our appointment was at 9:30am with the doctor and they didn't start the chemo until after noon. She had a slight right eye droop again last night, probably from the Vincristine, but it appears to be gone this morning. Only one more day of chemo in this cycle, and then we start the three rounds over again.

We really talked a lot about accessing her port before she went, and she did slightly better this time from last week. She said that maybe eventually you don't mind it at all and they can just do it while you're laying there. Let's hope that day does come for her.

The tutor was with us yesterday at the hospital for about 45 minutes. Other than that, we played games, ordered and ate a pizza and played video games.

We're off now to the airport to pick up Aunt Susie and Sydney who are visiting for the weekend. Hannah asked me this morning what time the plane "dropped". Gotta go!