Hannah's Test Site

Hannah continues to do well, she feels good, just a bit tired, but that's it. Yesterday we actually stayed home and did things around the house. The girls both made "stores" outside (just another way to bring stuff outside and sell it to your mom and dad for lots of money.) Meanwhile, it took me hours to pick all the ripe tomatoes in the garden. Every year I take a picture of the girls with the tomatoes, this year has been a good year. This is not our first big pick either, we have already given away bushels to friends, and there are many more green ones on the vine. Colby and Hannah won't even eat tomotoes (but love pizza and spaghetti sauce, oh well.)
Hannah is also getting ready for the upcoming lacrosse season. She did really well practicing with Dave, she was able to catch and throw the ball without problem. Now running with the stick while tossing or catching, and being able to fend off defenders is another thing all together, but she's on her way (and it's really good therapy for her.) Here she is:


Tomorrow we go to clinic, so it will be interesting to see what her counts are. Colby is going with us, so Hannah is happy about that. We told Colby she could do the finger stick, but after a few hours of agreeing, Hannah finally said "mom, it won't be MY blood, duh!" We'll report back tomorrow.

xoxo Kim

What a fun day! Hannah started her bake sale today at 8am. By 9:50am we had sold out everything. Hannah earned $372 for charity today, to give to Smiles for Scott Foundation and Spaulding Rehab hospital. Here is a picture of Hannah at her sale, after she had already sold most of her goods. Check out the "Hannah's Amazing Foods" sign! So many wonderful people came by to buy things and make donations, it was so heartwarming. Thanks to everyone who stopped by, and to our friends Erin and Kerry that made yummy things to add to the sale.

I know that her counts are on their way down, and it will take about another 10 days to reach their low, but right now she is doing great. Her energy level is good, but she gets tired easily. Other than that, she is doing well. We go back to clinic on Tuesday, so we'll get an idea of where she's at.

xoxo Kim

A pretty uneventful day today. Hannah and Colby had an orthodontist appointment. Hannah was referred by her dentist, since she will probably need a palate expander like Colby. The ortho doc said not until next year, which is when I would have done it anyway, after treatment.

Hannah was in good spirits today and had quite a bit of energy until early afternoon, when she got pretty tired. These last couple of days she has complained of being hot (I'm thinking due to the chemo, since she is usually freezing cold). I am reducing her anti-nausea meds tomorrow, to see how she does, hoping the chemo is passing through and out of her system by now.

The bake sale for Saturday is ON! Tomorrow we are spending the day baking and finalizing everything. So, if you live locally and want to come by, we will be on Love Lane around 8am.

xoxo Kim

Done with Round 5! It's always a good feeling when I can go on the website and change the chemo schedule to show another round is finished. Today was pretty much more of yesterday at the clinic. We watched a couple movies and Hannah took a good nap. She really hasn't eaten anything these last couple of days, especially today. She had 4 small cookies around lunchtime, and some corn tonight, that's it. I still have her on the appetite stimulant, but right now she just doesn't feel very well.

I checked back on our other rounds, since we have had these drugs once before and now I have something to compare it to. Last time, this was probably the hardest of the three cycles for her. She ended up having a blood transfusion, then very low counts and in the hospital with an infection. The doctor already mentioned the platlet and red blood transfusions, as he expects that she will need them, next week or the week after. Chemo is cumulative, so after each round, it's more difficult for her body to recover again.

We're still hoping for this weekend for her bake sale, but it's going to depend on how it goes the next few days. She is very happy to have Colby back from her visit with the Graebs for the last 3 nights while she was getting chemo. Colby does help to boost her spirits quite a bit.

Hannah has one more night of hydration tonight, then tomorrow as long as she can drink and/or eat and keep it down, I will deaccess her port here myself. I've done it once before, not really my favorite thing to do since it involves holding the small port located inside her chest with one hand, while yanking the needle out with the other, but there is worse. I'm sure Colby will be the official helper/distracter like she is for Hannah's shots.

xoxo Kim

Today was finally the day, Hannah started Round 5 of her chemo. It was a fairly normal day in the clinic, she was accessed with much fear and resistance, even more than usual I think due to the fact that she hasn't been accessed in quite a while. After everything got settled, she started her chemo quickly. We had to have 4 hours post chemo hydration due to the effect this drug can have on her kidneys. She watched a video, played some video games, took a nap and ate some pretzels.

We arrived back home about 5pm. She slept a good part of the way home. She is feeling generally sleepy and not up to par, but no sickness. I started her hydration about 6pm, and we're having a sleepover tonight in the living room. This hydration runs until 6am, at which time we will get up and leave again for the clinic. It is two very long days in a row, but better than being inpatient.

xoxo Kim

Another day in clinic today with NO chemo. Hannah's counts checked out fine, even on the high side due to the shots and passing of time. However, when we saw our doctor's assistant today, she informed us that because Hannah had a shot last night she could not get chemo today. Needless to say I was pretty unhappy, since we were told by another doctor last week to start and continue the shots, with the anticipation of getting the chemo today. According to Hannah's protocol, her counts have to be at a certain level without the shots for 2 days in order for her to get the chemo. I was aware of this, and even questioned the doctor last week, but was told all was fine, and to go ahead with the shots, come back on Monday.

Again, Hannah was smiling, and we left. As she told Grandma and Grandpa today, the doctors were "all mixed up", so she didn't have to stay. However, tomorrow we will be all set up for the chemo, and will receive it Tuesday and Wednesday. The process is quite lengthy, we get there about 8am, won't leave to late afternoon, even though the actual chemo only takes one hour to administer. It's all the hydration pre and post chemo to protect the kidneys.

I'm going in now to change our chemo schedule on the blog, maybe that will make it a "go" for tomorrow.
One other issue we have to mention of course-the Yankees. I'm sorry to our favorite Boston friends-Mr. and Mrs. "hat man" but we are doing the happy dance here! Dave informed us tonight that the Yanks and Sox have to play each other in two more series this year, so that will be the real test, but they are really coming up quickly! Are any of our Boston friends out there going to the games in Boston? Let us know and we'll look for you on tv! Hannah wrote Derek Jeter a thank you note last week, and she is still awaiting his letter back (ha!) with tickets for her. I know he's nice but..... To answer your request, we might be able to talk Hannah into wearing her Boston hat-around the house :)

Will report again tomorrow with hopefully happy news from clinic!

xoxo Kim

We go tomorrow for another try to get in round 5 of Hannah's chemo. I have been giving her the daily Neupogen shots since last Thursday, so hopefully her counts are up. She is already protesting being accessed tomorrow. She did admit tonight that it doesn't hurt to access the port, but she can feel the needle going into the port. It's just an unpleasant and stressful situation for her still. She is getting so much better with the daily shots I give her at home. We have a routine, and she goes through the process each time, but no more screaming and thrashing.

We were all busy this weekend, and the weather was beautiful. On Friday, we went to the movies with Mary Kate and Charley. After setting everything up, the thought occured to me that this was one of the worse places for someone who is neutropenic, since it is an enclosed place with many people-GERMS! I agreed to let her go if she would wear a mask into and out of the theatre. To share in the fun (ha) I wore one too. Wonder why there were so many people staring at us?

Hannah and Colby both had horseback riding on Saturday. Hannah was persistant in telling me and the instructor that she wanted to cantor (go much faster) on her horse, but they decided to save that for another day. Instead, they were walking and trotting over poles on the ground-enough to give a mother heart failure, that's for sure. She looked very good, and stronger than the last time she rode. We headed out to a local beach for a bit of afternoon relaxation, and Hannah fun in the water and a quick nap on the beach.



Today we made the trek over to the ocean (Westhampton Beach). We saw several other friends from the North Fork over there. The water was fairly calm and the day was beautiful. The highlight for me was watching Hannah chasing seagulls. She was running! At that moment, you would never have known everything she's going through.

xoxo Kim

Very strange day today at clinic. Hannah's platelets came back at 101,000, which is what we were hoping for, but to our surprise, her ANC (part of the white blood cell count that fights infection) was only 275 (should be 1500-7000). The daily shots she was taking at home were to boost her ANC, and since her counts had been satisfactory, although on the low side on our last 2 visits, they stopped them. None of us knew that her ANC was still on it's way down. Anything under 500 and you are at quite an increased risk to get an infection, so that is our priority right now. With her ANC so low, she could not get the chemo. I was disappointed and she was pretty happy. Happy until she heard the word "shot".

We go back to clinic on Monday and hopefully all of her counts will be in good shape. Until then, I will give her the daily Neupogen shots to boost her ANC. The doctor also said it would give her blood a little more time to rebound, since everything is still pretty low. This means that her chemo schedule changes. They do not make up the time by doing the next cycle as planned, because the spacing is important as far as killing the cancer, and the body has to have time to recover, even more so than early on in her treatment.

So, not what we were hoping for, but she will be able to get her next dose with little delay. She came home and slept for three hours this afternoon. We'll be laying low this weekend, it's important to stay away from crowds, sick people and germy situations so as not to get an infection like the last time her counts were low. We'll most likely be here baking for her bake sale, to happen probably next weekend (depending on how she's feeling.)

xoxo Kim

Today we began preparing for Hannah's "big" bake sale. Of course, Hannah wanted to make cut out cookies, which have to be rolled out, then cut with cookie cutters, then decorated! We made 4 batches today and it just confirmed for me how old I am quickly becoming. We have about 6 different things that we are making for the sale, so we started with the hardest. We hope to have everything ready by next weekend. I will keep everyone updated here. This was really the highlight of her day, asking multiple times when we could start, then asking when the dough was ready, then asking how much of it she could eat. The thought occured to me that eating raw cookie dough wasn't the best idea, but her white blood counts are good, so it shouldn't be a problem. Here are a few pictures of the cookie machine at work.


We spent a little time swimming again today at the neighbor's, which the kids really enjoyed. Hannah seemed to be pretty tired today (lots of cookie yawning.) I can't imagine that her counts will be high enough on Thursday, but I can't predict things, and will continue to think positively and see what happens. She knows that we are going for chemo on Thursday, and tonight was very upset again. Even though it's still a couple of days away, she is already anticipating the poke of the needle. We spent quite a bit of time tonight at bedtime talking about it, crying and trying to work through it. She just doesn't understand it and doesn't want to continue with all this (saying she is being tortured and it's not fair.) I just keep talking and trying to help her, trying to keep a level and calm demeanor myself. I'm now looking into other options to help her and in the meantime we'll keep moving forward, trying to find things like the bake sale and the can drive to keep her mind focused on other things.

Keep us in your thoughts for Thursday!
xoxo Kim

Hannah had some minor fatigue this morning, but was still up for a hike in the woods with Riley (dad carried her 75% of the way). At least this time is was fairly level terrain.

This afternoon we went over the neighbor's house for swimming, so she was very happy about that, because we seem to be the only house in the neighborhood without a pool! It was a nice quick cool down.

Hannah asked me last week to get a mirror so that she could see the back of her head and all of the hair she has growing. It was the first time she saw the scars from her surgery and reached out to touch them. It was a little upsetting for her because she really didn't know how it looked and didn't like the look of the scars. She did want to include this picture though on her blog of her hair and how much it's growing. It was difficult to get a good picture to post, so we hope you can see it. Her doctor said that this next round on this Thursday and Friday will probably make it all fall out, so she'll be back to square one, but for now she's pretty excited about having hair again and wants to show everyone lately. Sometimes it seems to grow overnight.

Hannah has also been talking of doing some fundraising. She has decided she wants to donate money to Spaulding Rehab Center (where she stayed during our radiation in Boston) and the Smiles for Scott Foundation. This foundation is a charitable foundation to honor the memory of Scott Loeb, a little boy who died at age 5 from medulloblastoma (what Hannah had). They raise money to try to make some days easier for kids with cancer. For example, they have donated dvd and vcr players for every room at Schneiders, a refrigerator for the families, and our favorite, the Friday afternoon candy cart. Two volunteers come around each Friday afternoon at the hospital and the kids can pick out any candy they want-a whole bag full of candy! The people are very generous and giving, and often times it is Scott's mom and aunt that bring the cart around. What a great thing. Link to their website is: HERE

Hannah REALLY wants to hold a bake sale, so we are starting to bake this week in preparation for a Love Lane bake sale. We also brainstormed another idea, and Hannah named it "Hannah's Cans for Cancer." We are going to collect bottles and cans that can be redeemed at the grocery store for money. We were inspired by an article in our local paper about a lady that has raised $4,000 by collecting cans and bottles. So, with that in mind, this is Hannah's new fundraiser. More to come on Hannah's Cans for Cancer. She is very excited about it and I am exhausted at the mere thought of it.
xoxo Kim

Another hot day today in New York prompted us to take the boat out for some tubing! Hannah did not go to horseback riding today, we thought it was just too much of a risk. If anything happened with her platelets so low, it would really be a bad situation. As it turned out, her class was cancelled anyway and she seemed pretty tired this morning so she didn't seem to mind. We took a vote for fishing or tubing, and the tubing won out. Here are a few pictures of the fun. The girls had never been tubing by themselves, they had always gone with Dave or I, so we were quite surprised when they both announced they wanted to try it by themselves (especially you know who.) A good time was had by all, and no one was catapulted from the tube, so it was a success. Maybe some fishing tomorrow!
xoxo Kim

The girls went to camp on Thursday and liked it! It was probably the hottest day of the year so far, but they did have a good time. When it came time to meet everyone at the camp and go off with the counselors, Hannah had a breakdown, crying and clinging to me. I completely expected it, so it didn't come as a big surprise to me. Hannah had always been somewhat shy in new environments, but it is evident that now she is even more so. She really wanted to be there, but didn't want me to leave. Everyone was as nice as could be, but it didn't matter if I wasn't going to be there with her. She and Colby were in the same group, because of their ages, but that didn't matter either. I finally peeled her off and left her with a counselor and Colby for roundup-where the camp kids come together for songs and chants at the beginning of the day. I stayed for a bit to be sure she calmed down. She said she had fun, except when they went swimming and she was put in a different group from Colby because of their ability. Other than that, they both had fun. We are going back for another day on Monday. She told me tonight that she is going to cry again, but I told her "no crying allowed after the first day." We got to see Jacob and his brother Ben at camp. We know Jacob from Boston, he was getting proton radiation when Hannah was, and was our next door neighbot at Spaulding. I spent the day with Nancy, Jacob's mom. It was so great to see them again.

We went to clinic this morning very early. I knew right from the finger stick that it would not be great news. Hannah bled a lot from the stick, much more than normal because her platelet count was so low (platelets coagulate your blood, so if they are low, your blood is very thin.) Counts were:
WBC 1.73 very low
ANC 1.16 low, but pretty good
RBC 2.61 low
HGB 8.41 low
Platelets 39,000 very low, have to be 100,000 for chemo next week

She was given a shot today to boost her hemoglobin. It won't boost her platelets, but if her hemoglobin goes up, it will encourage her platelets to follow. The only precautions we have right now are no contact sports or other activities that might cause injury because we have to be careful about bleeding, since she has trouble stopping any bleeding. She wasn't happy about the shot today, but she was more upset that next week, she will have to get hydration at home while getting chemo on Thursday and Friday. I told her the other option was to be inpatient for 3 days, and even though that was rejected, she still is upset about being accessed and being hooked up to the pump while at home. Part of it may be the invasion of her home space by the procedures that are usually reserved only for the clinic or the hospital. I think they may be a little easier to deal with because they aren't part of our "real life" here at home. Just a thought, sometimes hard to tell.

We go back to clinic on Thursday for chemo. As long as her platelets check out ok, we will get it Thursday and Friday. If they don't go up, she will be delayed until her counts come up. So, let's all cross our fingers that her counts will come up and we'll stay on schedule.

Hannah still has the tinnitus (ringing in the ears.) It is not debilitating for her, so we are still on for the full dose for chemo. There is no treatment for tinnitus and very little is known about it. We are moving her audiogram up by one month to ensure she is not experiencing any hearing loss prior to the next treatment which could affect her hearing.

Today Hannah recieved a whole box of new bandaids from girl scouts in service unit 48, senior troop 2949 and others. THANK YOU! We loved them and your timing was perfect. Hannah took off the bandaid from her finger stick and her finger started bleeding again (6 hours later), so she went to the bandaids and used 2 of them right away. It was so nice of you and we really appreciate it.

xoxo Kim

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

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

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

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

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

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.

xoxoKim

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

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

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

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.

xoxoKim

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

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.

xoKim

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!

xoKim

We had a good time last night at the girl scout outing to the Ducks baseball game. It was pouring down rain on our way there, and the game got off to a late start at 8pm, even though it was still raining. She enjoyed being there, watching the game and the hot dogs of course. Here is a picture of Hannah with Dad, Diane, Colby, Abby and Isabelle. And another picture of Hannah with QuackerJack, the Ducks team mascot. We left in the 3rd inning, at 9:30pm since it's an hour ride to get home. We did end up getting tickets to another game, due to the rain delay, so we might go again next week, we'll see.

Some good news, Hannah's MRI results looked good, no tumor regrowth. I have yet to see the full report, but we are so happy that the tumor is at least at bay. Hannah and I were talking tonight before bedtime and I mentioned to her that her MRI and her audiogram came out great. She asked me what the MRI showed, and I said that it showed her brain was there, and working. But, she kept pressing the issue, and asked me if it showed were the tumor was. I told her, yes, it showed that the tumor was GONE. Then amazingly, she told me she wanted to see side by side pictures of her MRI with the tumor and the MRI without the tumor. Sometimes, she is smart beyond her years.

I then spent some time talking to her about her port and how we could make the whole experience better for her. I told her we could brainstorm ideas for how to make it easier for her. She said all the ideas I had were "dumb", and most of them probably were, but I was just trying to come up with something that she may be able to latch onto to take her mind off of the whole thing when they have to access her. I'm going to keep trying this approach of just offering other ideas until maybe she finds something she likes that may help her. She said she doesn't like it when they have to hold her down. None of us do.

xoKim

Hannah went yesterday for her Audiogram and a follow up MRI. One of the chemo drugs is very ototoxic (damaging to the hearing), so they monitor that very closely. As soon as they see her hearing start to drop off, they decrease the drug dosage. So far, all is good, she actually tested better yesterday than on her test 3 months prior. She had ear wax removed from her ears by Dr. Mercier, so that could possibly be the cause for the slightly better test.

Then it was on to the MRI, which she doesn't mind, all except for the dye they had to inject into her port. Anything to do with that port is traumatic, so she was upset that they had to inject her, and then more upset when they said they could not deaccess her (which we were told they could do and did all the time.) So, after the MRI we had to trudge back over to the clinic to get the nurses to do it. We made it just before they left for the day, otherwise I would have just deaccessed her myself when we got home.

Now we wait on the results from the MRI. The waiting game is not a very fun game, but we just try to think positively and remember the words her neurosurgeon said after we forwarded him the last MRI in May ("her brain looks perfect").


The girls and I just got home from taking Riley to his first trip to the beach. Last year we discovered that he actually liked to swim in the bay! We throw the ball in and he goes right out and gets it. We love to watch him swim. This beach also is a good beach for beach glass, which Hannah and I love to collect. We have to be very careful about Hannah getting sun on any spots that had radiation, so I don't know how much we will be at the beach this year, but today was very nice, we had the whole place to ourselves. A little bit of normalcy.

xoKim

Today was Hannah's second Tuesday of this chemo cycle. Again, no effects yet from this chemo. She has however, started to become more adamant and boisterous about her displeasure with the chemo, in particular putting in or taking out the needle from her port. She has gone from disliking it, but tolerating it, to outright screaming, and we have to hold her down. They told me today it is common, but it's not easy to go through for me or her. She begins the night before saying she is just not going the next day, then she usually has one or two crying spells about not wanting to be accessed. We try to distract her, but it's not really working any more. At least it is short lived after the needle is in and after it comes out.

She was however, very proud of her bandaid collection today. Last week we had picked up a small rolling bag, so that all of her collection would fit. It was so much easier, because she could bring it in today by herself, and it was one less thing to carry. Of course the first question everyone wanted to know was what new bandaids she had since last time. She showed them her animal bandaids from Joe and Colleen, her new Boston Red Sox Bandaids-which she says we're not allowed to use, she is saving them, her new tatoo bandaids from Aunt Susie, her Hello Kitty bandaids from Mrs. Baker, her new bandaids from Miss Trish in IN and her assortment from Mr. Tom and Mrs. Debbie, Grandma's friends in Indiana. She even shared her collection today with another little boy we finally met. We had seen this little boy a few times at clinic, and noticed his scars looked exactly like Hannah's. Come to find out, he had the same surgeon that Hannah did, and they live in Centereach. Today I spoke with his mom, and he does have medulloblastoma also, although his is large cell anaplastic medullo, which is what Hannah's was thought to be at first, and he had two spots on his spine also. LC/A Medullo is more serious than standard medullo, and treated more aggressively. He is such a sweeet little boy, 5 years old and needed a new bandaid. There was Hannah to the rescue, with many to choose from.

They left Hannah accessed today because tomorrow she goes in for her 3 month follow up brain MRI, and she will have an audiogram as well. Another trip to New Hyde Park, thank goodness for the entertainment system in the car, it's been absolutely wonderful for the long drives there and back.

I wanted to share this picture from last week of swimming at Abby's. Pictured here with Hannah-on the duckie-is Colby, Abby, Emilie and Tori. They really had a good time.

xoKim

Hannah's been very busy this week with the last days of school. She was able to attend school on Wednesday, Thursday and Friday mornings. She had a part in her class play, and enjoyed all of the party activities with her class. She was quite tired this week after her chemo treatment on Tuesday, and either went to bed early, or sometimes took naps. Other than that, she shows no signs from the chemo yet.

We did have to get her a new case (with rollers on it) to carry all of her bandaids. I tried to talk her into just taking SOME of them to clinic, and leaving the rest at home, but she didn't want any part of that. Thank you all for all of your wonderful bandaids. The last prized addition to her collection was a special delivery of Boston Red Sox bandaids-at which she just smiled and rolled her eyes. I told her that they didn't make these any more, and our Boston Hat man got them especially for her from Boston EMT's. They are great! She can't wait to take her new roller case in on Tuesday to show everyone her new additions to the collection.

We went swimming on Thursday after school. She had a good time, and even tried to give me a heart attack by jumping off the diving board. She did quite a bit of swimming and eating and a bit of resting too when the water got too cold.

Hannah announced that she wanted to go to horseback riding on Saturday. I thought she just wanted to go to watch, but she wanted to ride! She did ride, and did great. She looked much stronger than last time she went, she was walking and trotting and participated in the entire 1 hour lesson. We have seen improvement lately in her balance and coordination. She has been working hard at physical and occupational therapy. Our school will begin to provide physical, occupational and speech therapy for the summer beginning in July. In addition to two days of school therapy, we will also continue with her outpatient therapy at North Fork Physical therapy 2 days a week. Hannah will also continue with school tutoring. Her school teacher will begin working with her at home beginning tomorrow. Also, Colby and Hannah begin piano lessons tomorrow. They were both taking them previously, but have not had piano lessons this year. We will be very busy this summer!

xo Kim

Hannah did well today, and the only side effects from this last round appear to be a bit of tiredness. We left school early today, and she was very tired for Mrs. V, her tutor. She went to bed at 6pm tonight, right after she ate only an ear of corn for dinner. Otherwise, she has been her normal happy self today.

I have struggled on whether I wanted to include this poem here, but have finally decided to include it. I don't know who the author is, but I read it on an online group for pediatric brain tumors. This life is very hard to explain sometimes, so most of the time when people ask you how it's going, you can only respond "ok". It is not a rosy poem, it's a quick glimpse into the life of a child who has cancer. These words are so true, although not that nice to hear. If you would rather skip it, I understand. Maybe not the best for young kids to read either. I certainly HOPE it will never be anything any of you will ever have to hear. We need a cure for this awful childhood disease so that no other child will suffer this way.

xoKim

I HOPE YOU NEVER UNDERSTAND

I hope you never have to hear the words
“Your child has cancer”.
I hope you never have to hear
“The prognosis is not good”.
I hope you never have to watch your child
prepare to undergo chemo,
have a “port” surgically implanted in their chest,
be connected to an IV pole,
look at you with fear in their eyes and say,
“Mommy will it be okay?”

I hope you never have to hold your child while they vomit green bile.
I hope you never have to feed them ice chips for lunch.
I hope you never have to watch the “cure” you pray for
slowly take away your child’s identity, as they,
lose their hair,
become skeletal,
develop severe acne,
become barely able to walk or move,
and look at you with hope in their eyes and say,
“Mommy will it be okay?”

I hope you never have to stay in the hospital for weeks at a time,
where there is no privacy, sleeping on a slab, your face to the wall,
where you cry in muffled silence.
I hope you never have to see a mother,
alone, huddled in a dark hospital corridor,
crying quietly,
after just being told “there’s nothing more we can do”.


I hope you never have to watch a family
wandering aimlessly,
minutes after their child’s body has been removed.
I hope you never have to use every bit it energy you have left,
with all of this going on around you
to remain positive, and the feelings of guilt, sorrow, hope and fear overwhelm you.
I hope you never have to see your child’s head bolted to a table
while they receive radiation.

I hope that you never know what it is like to take your child home,
(grateful but so afraid)
in a wheelchair because the chemo has damaged their muscles,
35 pound lighter,
pale, bald and scarred.
And they look at you with faith in their eyes and say,
“It’s going to be okay Mom.”

I hope you never have to face the friends that have stuck by you and hear them say,
“Thank God it’s all over”
because you know it will never be over.
Your life becomes a whirl of doctors, blood tests and MRI’s,
and you try to get your life back to normal
while living in mind-numbing fear that any one of these tests could result in hearing the dreaded words:
“The cancer has returned”.

I hope you never have to experience any of these things.
Because only then
Can you really understand.

Hannah went in today for her first of 4 outpatient chemo treatments for Round 3. Today she had Carboplatin (a sister drug to cisplatin, the first vey hard drug) and Vincristine (which gives most people reactions, anywhere from moderate to very severe. Hannah had the eye droop the first time). Although we had to wait 3 hours before they actually started the chemo, Hannah handled it very well and had no immediate reactions. I have noticed that most of the time, it takes at least 24 hours to get any reaction, so we'll see how she does by morning, but so far so good. I am also hoping that a supplement-Vitamin E-that Hannah is now taking will help eliminate the neuropathy she experienced previously. We had researched this quite extensively and provided her doctor with supporting documentation about the effect of Vitamin E with regards to neuropathy, ototoxicity (hearing) and nephrotoxicity (kidneys). He agreed that the results of the studies looked promising, without lowering the efficacy of the chemo drugs, so we put her on a daily regimen beginning this week, which will continue until a few months after the end of chemo.

She spent quite a bit of time today with her hospital tutor, Mrs. Warshaw. We met her for the first time today, and she will be tutoring Hannah anytime we are in the hospital, coordinating her work with her at home summer tutor. Mrs. Volinksi will be tutoring Hannah still this week and next week Hannah will begin working with her current 2nd grade teacher, Mrs. Tepfenhardt as her summer tutor. Our school district has really been amazing in providing everything that Hannah needs, including tutoring throughout the summer both at home and in the hospital, which I have been told is not always the norm. We are so grateful that they have been so accomodating and easy to work with.

Next week while in for chemo again, Hannah will see Mrs. Warshaw, as well as a music therapist whom we met today. She is a very nice lady who said she has all sorts of instruments for Hannah to try out. Hannah seemed pretty happy and interested in that.

Hannah weighed in today at a whopping 19.5 kilos (42.9 pounds), WOW! Before she had surgery she weighed 19.1 kilos, so we are so happy to see that she is now putting on the pounds, although she is still very slight for her age. The doctor said that when she reaches about 21 kilos we will start to scale back the appetite stimulant a bit, we don't want her gaining too much too quickly. Thanks Uncle Mike for the food group data, that is just about right for our house right now.

Hannah was very proud today of her bandaid collection. She showed Rob (the tech who does the finger sticks), Jan (childlife) and all the nurses. Everyone gathers around to see what new bandaids Hannah has. We now officially need a bigger bandaid box since ours burst open in the middle of the waiting room...just too many bandaids in it. Thank you all for sending them, it really has been a lot of fun for her.

This week is our last week of school. Hannah class performing a play about the mixed up States of America. Hannah does have a part, she is one of the 5 narrarators. Tomorrow they are putting it on for the school and Thursday for the parents. She has two lines that we have been working on memorizing. We'll let you know how it goes.

xoxoKim

Hannah talked her Grandma and Grandpa into staying for the Strawberry Festival today. I overheard Grandma telling her that she could stay all day at the festival if she wanted...wrong answer! We went at 10:30am and got home at 4:30pm. It was a beautiful day, and we all had a fund but tiring time. We took turns going on the rides with Hannah based on which ones I thought I would get sick on. Thankfully, she's still one step down from the really scary rides! The festival is run by the East End Lions, which donates all of their profits to charities. It's a great event they put on every year and fun for everyone in the community. Here are some pictures of our all day affair.
Hannah and dad on the merry go round. Hannah eating her first ear of roasted corn for the day.

Hannah shooting hoops.

Hannah with the 2006-2007 Strawberry Festival Queen, getting ready to crown the 2007-2008 queen. Last year's queen was our very dear friend Kristin, who has been babysitting the girls since the beginning. She is like a member of the family and we love her! We were so excited to see her, since we have been trying to get together with her since this whole craziness started.



Our whole family together.
xoxo Kim

Hannah has been doing well since we got home, continuing to get stronger. The appetite stimulant has now REALLY kicked into gear, she's eating more than anyone in the family at times. Tonight, she ate 11 ravioli, and asked for more. I made her slow down, in fear that she would overload and end up being sick. She did finally slow down a bit. It's nice to see her eat, and put back on a little weight before our next round of chemo. She is up to a whopping 18.7 kilos (41.2 pounds).

She has been tolerating her IV medicine well. I was able to deaccess her this morning, thank you Stephanie for the training. I was so nervous, but didn't want her to know it. She wasn't so happy about me doing it to begin with. It was so easy, and came right out without any problems. Unfortunately, she only had the needle out for an hour before the home care nurse came to put the other one back in. I didn't think about it ahead of time, but we did not put EMLA-the numbing cream on her site before the nurse came. So, it was like poking a sharp needle into your skin without any anesthesia. The nurse didn't get it in the first time, so she had to poke her twice. I can imagine how that hurt, and Hannah was very upset.

She was a trooper though, and rallied and we left to attend school for the first time in a while. We were able to do a little work with the class, then lunch and then Hannah and her class prepared for her upcoming play. Her teacher there has been great, and they had saved a part for Hannah. She said she was a bit nervous reading her part for the first time-they were on stage, but by the second time, it was old hat. I sure hope she gets to be in the play, they are performing it on Wednesday for the school and on Thursday for the parents. Hannah has chemo on Tuesday, so we'll see how she's doing afterwards.

Hannah had a special visit tonight from one of Dave's friends, Rich and his wife Mary Kim and his mom. They had come to deliver a special package to Hannah that was just too special to be mailed. Here is the picture of Hannah with her TWO YANKEE SIGNED BASEBALLS!! The first ball says "To Hannah, Best Wishes, Derek Jeter", the second is signed by Bobby Mercer, Ken Singleton and Joe Girardi. WOW! She was so excited, almost as excited as Dave and I! Now that was some special delivery package, thanks so much!

Hannah has also talked her Grandma and Grandpa into staying with us for one more day. Hannah wants to go to the Strawberry Festival with them tomorrow, and with all of her pleading today, they just couldn't say no. Hannah is asking if she is big enough to ride the rides alone this year, even accessed, she doesn't care. I'm secretly hoping she is not big enough so that she can't go on the scary rides. We went over tonight to watch the fireworks, and had a great time. That is the closest we have ever been to the fireworks. Here is Hannah with Grandpa.

xoxoKim

We are back home now, we got home last night after 10pm. They don't have a definitive answer on Hannah's infection, the sample could have been tainted, or she could possibly have had some growth, especially considering that her fever has been up and down since her last round of chemo. However, the culture was positive for staph coag negative-which is pretty much on everyone's body, it just doesn't matter to us because we can fight it off and she can't right now.

They allowed us to come home last night, with Hannah receiving IV anitibiotics twice daily at home. That means her port is accessed and I have to administer the drugs via an IV with a pump system morning and night. I was trained this morning by a home care nurse, and although I think I could do it in my sleep from watching the nurses so often, it's a bit different when you have to do it yourself. I have to set up the pump, flush her port, be sure all the settings are correct, flush her again, heplock the port, watch for any signs of problems or reactions, etc. etc. I don't know if it's more nerve wracking than the shots or not yet!

She will be on these antibiotics until Monday, just in time for her to return to clinic on Tuesday for another round of chemo. This will be outpatient during the day only, at least that is what we are expecting.
So it's good to be home, we hope we won't have another stay in the hospital until July, when it's her next planned 6 day admission for chemo. Here is a picture of Colby and Hannah decorating Hannah's birthday cake in the hospital before they both had BIG pieces. Hannah and I made the cake, it was a 4 layer chocolate, white and lemon cake with wild bird animals! We gave the rest to the nurses, yummy!


xoxoKim

We're back in the hospital. We got a call at home at 12:45am saying that the culture had started to grow bacteria (at hour 22 out of 24 hours) so Hannah needed antibiotics and needed to come in right away. Although it wasn't an immediate danger, they have to be sure that they control the infection, especially if it's in her port. We drove in and came into the ER to be admitted. It was not a good experience, they had to stick her 4 times to access her port, which was very traumatic for her, especially at 4am. We came up to our room at 5am.

She did ask in the emergency room what day it was, and figured out that is was now Sunday and she would have to cancel the party. We'll have it another day, hopefully soon.

On the upside, I think the appetite stimulant has started to kick in a bit. When she woke today she had 2 donuts, and 5 hardboiled eggs! She asked yesterday why she was suddenly "so hungry." It's good to see her eat, but it doesn't seem to be a constant yet, as now she might not eat anything else today. At least it's starting to work so the fear of the feeding tube is gone for the moment.

We'll be in the hospital at least until Monday, when we get the results of the culture back. Hopefully back home soon.

xoxoKim

Hannah's counts were up today, and no growth in the culture-

WBC 9.62
ANC 5950
HbG 10.8
PLT 142

They purposely raised her WBC and ANC so that when she reached her nadir (low point) approximately 10-14 days out from her last chemo, which would be this coming Tuesday or Wednesday, she wouldn't crash again and have to be readmitted. They knew Hannah had her birthday party on Sunday, and were happy to do their part to get her there!

We got home about 2pm and called everyone to confirm the party. We are due to come back to the clinic on Tuesday, our next chemo is the following week, June 20th, outpatient.

xoxoKim

Hannah is feeling much better. Her fever went down by the end of the day yesterday and she was awake and active today. She spent 4 hours in the playroom today, I told her it was probably a record for the longest time ever spent making crafts in the playroom. Grandma and Grandpa came up to visit for most of the day, which helped raise her spirits too.

Her counts are better today-
WBC 1.51 Low
ANC 340 Low-most likely can't go home until it's at least 500
HgB 7.4 Low
PLT 117 Low

Due to the drop in her red blood cells now also, she had a blood transfusion today. Her body seemed to tolerate it well, so problems there and hopefully her blood will now stay at normal levels on it's own. The blood transfusion takes 3 hours, and she was in the playroom the entire time, so that's a nice distraction. Kids are so resilient it's amazing. No bacteria growth in the culture after 24 hours, so that's encouraging.

Her eating is ok since we've been here, however she refused to eat any dinner. Finally at about 9pm she had a candy bar and two pieces of chocolate. I told her that this was the last time for that allowance and she just smiled-she knows!

Waiting for counts tomorrow for a release.
xoxoKim

Happy Birthday Hannah!

Yesterday was Hannah's 8th birthday, she had a good day taking in cupcakes to her classmates (which she and I made together). It was something she really was looking forward to so I'm happy she was able to do it, even though it was tiring to her. The first picture here is a pillow case which Mrs. Baker made for her and all of her classmates signed. It is so special. I'm reading more and more about how important friendships and school relationships are to kids with cancer that are in and out of school so much.It helps them feel part of everyday normal life, and keeps them from depression and anxiety. We're so grateful that she has such good friends. Thanks to Ty also who came in just for her party with a broken collar bone!

She didn't eat that well during the day, but had 2 ravioli, a half a roll and even a piece of cake, woohoo!! That's a lot for her!
She went to bed crying that her whole body ached. She awoke this morning early to go to her clinic appointment to check her blood levels. She seemed abnormally tired, but I figured it was because we left the house at 7:30am. When we arrived, they drew her blood for testing and determined she had a temp of 100.4, which is considered a fever for a child with low white blood counts. Her counts were:

WBC .493 very low (should be 4.6-10.2)
ANC 43 very low (should be 2,000)
HbG 8.78 low but acceptable
Platelets 121 low but acceptable

So, she didn't have to have a platelet infusion after all, but now we're in the hospital. Because she was neutropenic (low white blood cells and neutrophils-the ANC) and had a temperature, she had to be admitted. Neutropenic kids are at risk to bacteria because the blood doesn't have sufficient neutrophils part of the white cells that fight off infection. Thus, everyday bacteria can develop into a life threatening condition.

She was admitted and her fever went up to 101.5. They started her on two broad spectrum antibiotics to fight off any possible infection. They drew blood and we have to wait 24 hours for the first read of the culture. If it's positive, they will change the antibiotic to something that is specific to the bacteria. If it's negative, they will continue the same antibiotics until the 48 hour mark, when the culture would show growth if bacteria is present. If nothing is present, and her ANC goes up, we will be discharged. Her ANC has to go up AND she has to have 2 negative cultures in order for us to be released. Therefore the earliest she can be released is Saturday. Of course, that's what were are hoping for.

Grandma and Grandpa just got into town today to help celebrate her birthday, just in time for us to go into the hospital. We hope to be home with them soon. Her fever is now down to 99.3!!

xoxo Kim

Unfortunately the weekend wasn't great for Hannah. She is not eating since this last round of chemo. It's a combination of the chemo, her type of tumor, and the sores she now has inside her throat (mucositis). The medicine for the mucositis isn't very pleasant, she has to swish and swallow it. She did it once and that's it. She can't even open her mouth all the way now because it hurts so badly, but still she won't take it again.

She is eating so little that the doctor today prescribed an appetite stimulant to help her. If this doesn't work, she will have an NG tube (common for medullo kids) which is the tube that goes down her nose to her stomach, and she gets fed that way. If it sounds bad, it is.

We gave her one dose of the medicine today, and maybe it's helping, or maybe it's my imagination, because for dinner with Dave she finally ate four bites of apple, four bites of peanut butter out of the jar (really good), 2 pieces of bacon, 1 piece of toast and some Hawaiian Punch and then 1/2 of a cupcake for dessert later. That's more than she has eaten in the last 3 days combined. I can't imagine the medicine is helping already, but as long as she keeps eating like that I don't care.

She isn't back in school, because her counts are on their way down, and she isn't in physical therapy again because of her counts, and thus very low energy.

I have been giving her the daily Neupogen shots at home, and so far so good. It's going better than I had imagined, and neither of us have gotten hurt yet, so that's good. Of course, she doesn't like them, but those great bandaids have REALLY helped. She picks one out before hand and then carefully places it on after by herself. Her latest were some great ones from Uncle Mike and Mrs. Graeb. Thanks!

xoKim

We came home today from the hospital. Hannah didn't have any more swelling, although her right eye is just a slight bit off it seems. Her doctor said today that now we know that Hannah seems to be very sensitive to the drugs, so it's something we have to keep an eye on. We were home for only 10 minutes when I had to call the hospital because Hannah was flushed and had a temp of 100.3. Anything of 100.4 in chemo patients warrants an automatic trip to the hospital to be sure there is no infection. The doctors said to wait a 1/2 hour, and retest. I gave her a quick bath, and started unpacking and repacking our bag. Luckily, the temp went down, and it's almost normal now.

She is very tired, due to her blood counts:
WBC 2.31 Acceptable but range is 4.6-10.2
ANC 1917 Nearly normal, this is the level to fight off infection
HgB 9 Low, range is 12.2-18.1
PLT 78 Extremely low, should be 142-424

The doctor said these low platelet and red blood counts already indicate the need for a platelet infusion, and to be prepared to stay for that when we come in next week (it takes 4 hours minimum). Between now and then Hannah will be on G-CSF (Neupogen) shots at home to boost her white blood cell count. Unfortunately, it doesn't do anything to increase her platelet or red blood cells, those have to come back on their own.

A home care nurse will come tomorrow to instruct me on how to give the shot. If there is one thing that Hannah really does not like through all of this, it is all the pokes from the shots, IV's, and the port accesses. She was not happy today when they gave her the shot in the hospital, and I'm not quite sure how I'm going to be able to do it here. It took two of us today to give it to her. But, it's important she have them, to help increase her white blood cells.

It's good to be back home. Also, we want to say thank you to all of the people supplying us with such great food. I do not have emails for most of you, to email you personally, but we would like you to know what a big help it's been to us. Everything is so yummy!

xoKim