Friday, June 29, 2007

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

Thursday, June 28, 2007

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

Tuesday, June 26, 2007

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

Sunday, June 24, 2007

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

Wednesday, June 20, 2007

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.

Tuesday, June 19, 2007

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

Saturday, June 16, 2007

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