Sunday, December 19, 2010

I changed the picture on the blog tonight to Hannah preparing the stockings for Jackie's Pay It Forward stocking drive. Of course she had fun buying everything and stuffing the stockings.

Things are in overdrive now. My sister and niece arrive Tuesday, my parents on Thursday. We are hoping they bring some of that Midwest snow with them.

Hannah and I have been busy baking cookies, she would bake every day if she could. I have been in contact with her oncologist regarding her symptoms following her short dose of steroids. She has continued to regress. She still has daily headaches, she isn't eating again in the mornings and has been complaining that her stomach hurts especially in the mornings. Ugh, poor thing. I feel so badly for her, it must really stink to feel bad EVERY day. She has been making it to school though, so she isn't falling behind. The other night as I was putting her to bed she was crying and told me her life was the "worst ever." I thought-here it comes-this whole cancer thing has finally gotten to her and this is it. But, what she said to me was "I hate going to school." She said she wants to be home schooled, and doesn't care if she misses out on seeing her friends at school, and some of the fun things. I think school is much harder for her than any of us can even imagine. We get a little taste of it helping her with homework. She works very hard to keep up, and maybe that's part of her headaches???? Enough hypothesizing for now!

It's almost Christmas and I feel blessed to be able to share it with all of my family here with us this year. This includes all of our extended family...all of you! May you all have a very Merry Christmas and a Happy and healthy New Year. Please keep all of our cancer family in your thoughts and prayers, there are so many spending this holiday in the hospital or in heaven.


Monday, December 6, 2010

Where has the time gone? We did get the last second opinions in regarding the MRI. Three out of four doctors agreed these spots were "treatment changes." When I asked specifically what that meant, the answer was "we don't know, but we see these often in kids treated with both radiation and chemotherapy." We don't know. I appreciated the honesty coming from one of the top radiation oncologists in the country and the head of the Harvard Medical School. Hannah's oncologist said he wouldn't be surprised if these spots grew on her next MRI (deep breath at this one) and that he wouldn't be too concerned with that. What we would be concerned with would be changes to the spots themselves in density, consistency, enhancement, nodularity, etc. I asked for repeat scans in 2 months, doctor said 3, so we are scanning at 2 and a half months, late January.

Hannah went off steroids after one week. Her eating is tapering down now, wow, those steroids cause crazy eating frenzies! Clinically, Hannah didn't present show any improvements while on the steroids. However afterwards, beginning soon after she stopped taking them, her headaches and stomach aches seemed to get better. She started eating breakfast again. Note that she wasn't in school during that time. Hmm. The doctor said one possibility could be that the steroids decreased any inflammation in the brain, decreasing her symptoms. We are keeping an eye on her over the next 2-3 weeks to see if her symptoms reappear. She has had daily headaches after returning to school after Thanksgiving break, but not bad enough to go to the nurse or come home from school.

She has asked a few questions about all this. I'm sure she hears me on the phone talking to the doctors, when they call I have to talk to them right then and there. She was working on a project for school, an "I am poem." One of the statements was "I am afraid of" and Hannah filled in..."that my cancer will come back." (another deep breath at this one) She is just so matter of fact about the whole thing sometimes. She doesn't talk about it or cry about it or even mention it. But, when she writes something like this, I know she thinks about it.

We're preparing for Christmas like all of you. This year, Hannah decided she would like to support her friend and fellow cancer survivor Jackie in her Holiday Stocking Drive. Please visit her site HERE to see what an amazing job this little girl does with all of her marrow drives and pay-it-forward events. She is a certainly wise beyond her years...awesome! It's not too late to get involved with us in Jackie's stocking drive. If you would like to donate any stockings, please email me or call and let me know and I will come and pick them up and deliver them for you. Jackie needs all stockings by December 15th.

We have to go for a blood draw early tomorrow morning for Hannah's endocrinologist, not such a pleasant way to start your day. Hannah already told me "I'm not going" so we'll see.


Friday, November 19, 2010

I have been waiting to write until all of our second opinions are in, but we are still waiting on a couple.

I met with Hannah's neurosurgeon on Tuesday. He is such a smart man, great doctor and Dave and I really trust his opinion. He said he doesn't believe we are dealing with a recurrence. {{{breathe now}}} He said he typically sees medullo recurrences in 2 forms-either as a solid tumor recurrence within or adjacent to the original tumor bed, or spread throughout the brain. Although Hannah's oncologist said he wasn't concerned because the spots are not in the tumor bed, the neurosurgeon said that is not a criteria for recurrence, it can occur anywhere within the brain, or even in the spine. However, any recurrence that he has seen enhances on an MRI (and Hannah's spots are non-enhancing.) I did question him on this though, because I am aware of other cases in which children have recurred with medullo and their cancer does not enhance. He said he is aware of this, but has never seen it personally, it's pretty rare.

The neurosurgeon did recommend two things-a lumbar puncture and a PET scan. He wanted an lp to check her spinal fluid pressure as well as cytology (check for cancer cells within the cerebral spinal fluid.) I questioned this because Hannah never had cancer cells in her csf (which, by the way would be pretty bad.) He said that doesn't really matter, recurrences act differently and could be present now in the csf, even if they were not there originally. However, if the csf came back clean, that doesn't necessarily mean she doesn't have tumor present, but at least we would know it's not in her csf. This would give us a much better starting point to work from, if it ended up to be recurrence.

A PET scan is a scan where they inject you with a radioactive glucose (sugar) and then a scan is performed. Basically, areas of tumor (cancer) soak up the glucose and are highlighted on the scan. PET scans work differently from MRI's in that they detect metabolic changes in the body, rather than anatomic changes. So, sometimes they can detect cancer or recurrence of cancer before you would see any physical changes on and MRI. PET scans are generally very good at detecting scar tissue vs. tumor activity. Scar tissue has very little metabolic activity while tumor tissue is high in metabolic activity. There are a few drawbacks to PET scans though. They don't do a good job in differentiating cancer from inflammation, inflammation will show up as a hot spot on a PET, just like tumor. This can be misleading.

That is where the steroids come in. Hannah has been on steroids now for one week. We did this to see if it would decrease her symptoms-which they have not. If her symptoms were caused by inflammation in the brain (from radiation necrosis), the steroids most likely would have helped her. But, they did not. Her oncologist originally had said to keep her on them for 2 weeks, but it's been a week with no changes, and we are now weaning her from them. She did fairly well while on them. She had a couple bouts of emotional crying for no apparent reasons and she has been extremely tired. Just within the last couple of days, she has been more hungry than usual. That side effect has lead to her trying some new foods, out of desperation, which has been fun. Tonight she tried sushi for the first time, along with fried rice and miso soup. She said it was "ok" and would not have eaten it had she not been STARVING! She also tried pasta that I had made with a low fat alfredo sauce (ew, white sauce) and although she was grumbling about it, ended eating it. She is not good about trying new foods and hasn't been since she had chemo. Her gag reflex is very strong, and sometimes even the smell of a food will make her throw up, so it's not something I usually push too hard for her to do. Puking when trying to eat is never fun, for the puker or the watchers!

We are still waiting on second opinions from New York City as well as Hannah's radiation oncologists in Boston. We are really interested in their opinions, since if this is radiation necrosis, they should be most familiar with seeing it. Their tumor board met on Wednesday, and I followed up with them Thursday and today, but no word yet. We are taking this as a good sign. If they thought it was tumor, they would be moving a bit quicker-at least that's what we are hoping!

Before we decide on our next move, with an lp, or a PET scan or just waiting to rescan in 2-3 months, we wait. We wait to get those other opinions. Hopefully not much longer.


Thursday, November 11, 2010

I wish I could report that Hannah's MRI report came back as NED, all is clear. Unfortunately I can't. I knew when I heard Dr. Atlas on the phone today instead of his PA, the news wouldn't be good. He said there are 3 spots that showed up on her MRI. He knows me, so the first thing he said to me was "I don't think we're dealing with medullo." These spots are right outside the tumor bed, and very faint. They aren't enhancing on the MRI like tumor, which is a positive. He said they are like smudges on a pair of glasses, very faint.

So what are they? His best guess is that it is some type of radiation changes. Possibly necrosis? Oh yeh, necrosis is scar tissue. For right now, he is prescribing a course of steroids for 2 weeks to see if it helps her symptoms of vomiting, headaches, fatigue and nausea. Her doctor said that if she was asymptomatic, he would not be treating her just due to the MRI. He would just watch and wait. If she responds to the steroids, we scan again in 2 months because then the area needs to be closely watched. If she doesn't respond to the steroids, we scan again in 3 months.

Now we're in a holding pattern. I will report to him in 1 week to see if there is any improvement. In the meantime, I am heading to the hospital tomorrow to pick up a copy of the MRI so that I can send it to our neurosurgeon, and our radiation oncologist from Boston. I'm hoping the radiation oncologist can provide some insight. Possibly they have seen this before.

I'm drained, off to bed for the night. Thanks for hanging in with us.


Thursday, November 4, 2010

I just got in from a wake for Stanley Cherry Jr. Little Stanley was only 12 years old when his life was ended by his cancer, his body too weak to fight any longer. What a sad sight to see such a small young little boy in such a small casket. We met Stanley and his mom at Schneider's when Hannah and Stanley were both going through treatment. Stanley had Wilm's tumor-the most curable form of childhood cancer, even a higher cure rate than leukemia. Stanley's tumor was just so persistent, always coming back, even after a bone marrow transplant. Stanley died on Saturday morning after battling cancer for more than half of his little life. Stanley always had such a bright smile on his face, that is how we will remember him.

Thanks to everyone that sent smoothie recipes after my last post. The smoothies didn't go over so well. Hannah drank most of her smoothie on the first day, almost none of it on the second day, we switched to a chocolate shake on the third and fourth days and by the fifth day she was done with them. She just couldn't get them down. She doesn't feel well enough in the mornings usually to get anything in, not even plain apple juice. Tuesday of last week on the way to school at 7:45am when Hannah gave me the "I don't feel good" comment in her quiet voice. That means PULL OVER NOW, which I promptly did. Hannah spent the next few minutes throwing up on the side of the road trying not to get her new boots dirty. There was nothing for me to do but stand by and hand her a tissue when she was done. Se then felt better and made it to chorus on time at 7:55am. Poor thing, it must be like perpetual morning sickness.

I emailed her oncologist and he decided to move up her MRI to next week (to put that to rest.) Let's hope it does put it to rest because between then and now I'm getting hardly any rest. Honestly, I don't believe this is tumor. What I'm hoping it isn't is a problem with her ventriculostomy. Hannah had this procedure to help with the flow of cerebral fluid where they put a hole in the bottom of one of her ventricles in the brain to help the fluid drain out after her brain surgery. The doctor told us at that time that it could work forever or could at some point be blocked and have to be done again, or she may have to have a mechanical shunt put in. That would mean another brain surgery.

Her doctor did say he believes this is most likely pfs-posterior fossa syndrome. This syndrome involves a variety of signs and symptoms including mutism or speech disturbances, dysphagia, decreased motor movement, cranial nerve palsies and, emotional lability. We knew that Hannah had pfs following her surgery when her speech was limited, she stopped using her left side, she developed an issue with her eyes and she was emotionally unstable. Many children with posterior fossa (it's the back on the back of your skull) tumors develop pfs, some much more severe than others. Pfs is widely known and acknowledged, but it's origin is unknown. It's a complicated and often misunderstood syndrome.

Ok, I haven't done a medically detailed entry like this in quite a while! Thanks for sticking with us. Please join us in saying a few extra prayers next week as we look for another clear MRI! If you're reading this and you're family, I'm sure you can expect that "MRI deal" phone call from Hannah very soon!


Sunday, October 24, 2010

My camera is broken. Thought you might want to know why I haven't updated our photo here, it still shows Hannah in the pool! That's all gone now, pool is closed and it's cold. Hannah has been getting a bit more stamina at school. She has made the last 2 weeks without coming home sick. It's still a struggle for her, but she is making it! But, she is complaining still of daily headaches and stomach aches. Nearly each day, she goes to the nurse, or takes time out for a break in her special education teacher's room for a snack or rest. The school tracks this for us on a calendar and when I looked at it, with each day filled with something, I thought it's time to do something else to help her.

We made a visit to clinic on Friday to see Hannah's oncologist. My fear was that he would say, well if she's having headaches, we should move up her MRI. Whew, that's not what he said. He looked at her school calendar and then asked about her diet! He ened up increasing her night time medication to double what it is now. He then said he wants her to have more fluid and sugar in the morning. He thinks she is dehydrated, which is leading to headaches. The difficulty is that because she doesn't feel very well in the mornings, it's hard to get anything into her. She usually eats a few bites of apple or 2 strawberries or a few grapes. This is the right kind of sugar, it's just not enough. So, we are going to try fruit smoothies. Hannah has never liked these in the past, but we're going to try again beginning tomorrow. She will take one with her to school tomorrow, and that along with the increased medicine at night will hopefully make a difference.

I hope this helps and she likes the smoothie because smoothies are a wonderful way to get in a lot of extra nutrients and vitamins. She hasn't liked any type of mixed shake drink since I made her and Colby drink the herb drink when she was on chemo. I made a green herbal shake with all sorts of really bad tasting things in it. I had pictures of the two of them sitting and crying while trying to get this down. It was BAD and it was BIG! I don't blame them for not drinking it. I then moved to a form of Carnation Instant Breakfast souped up but that didn't fly either...just the thought of anything else in it and they both wouldn't drink it AGAIN! Have you ever tried those? They are good! After that I pretty much gave up on any power drink for Hannah. We're trying again tomorrow, so wish us luck!!

Friday was not only a doctor's appointment, but we also delivered all of the Halloween goodies for the oncology ward! Hannah's Cans for Cancer sponsored Halloween for the hospital last year, and also this year! It is so much fun for Hannah. She scours Oriental Trading for weeks before ordering goodies for our bags. This year we made 360 bags total We also took in 135 pumpkins for the kids to decorate. The pumpkins were donated by Krupski's, Helen's and VerDerBer's this year. Thank you to all of them!! I am really missing my camera, I don't have any pictures of the girls washing the pumpkins, of our family on the floor putting together all of the bags, of the car packed full for our trip in! It was a lot of fun. Hannah decorated a pumpkin in clinic to leave there on display. I do have a photo on my phone, and I'll try to get that from my phone to my computer.

So, a bit of a change for us. I am relieved that they didn't immediately say they wanted to move up Hannah's MRI. We will hold off until December for that, which is just fine for us. Let's keep our fingers crossed!


Sunday, September 19, 2010

School school and more school. Can you believe it's taken me almost 3 weeks to post after the first day of school? Yikes, I'm getting slower and slower. School is still a work in progress for Hannah. I would like to say that the first day of school was great, happy and wonderful. But...the first day of school was pretty hard for my girl. I couldn't get her out of the car. When I finally did, then we couldn't budge from the lobby. Even the principal couldn't get her to go up to class. We finally got out of the lobby and into the stairwell. Stuck there. Her beloved art teacher happened by, and wisked her off. Later Hannah said to me "well she didn't have to hold me so hard." I told her that maybe it worked, she finally got up to her classroom!

After that first day she was determined not to go back. Somehow Dave managed to work a "deal" with her and if she was the first one in the class the next day she would get $5. Of course, I am the one that has to enforce this "deal." I was surprised that it worked out, and Hannah was very concerned about being to school early the next day to be the first one in the classroom! Since then, she hasn't had a problem (phew!).

The first full week of school, we didn't quite make it through. I got my first call from the school nurse on Thursday afternoon. Hannah had a stomach ache that she thought was bad enough to come home. She came home and slept for 3 hours. The next day, Friday, she still had that stomach ache and missed the whole day. I found out that there were a few kids (in her class) that were out with stomach issues, so I think this is what happened. She just didn't bounce back quickly from stomach issues like she usually does if it's just her normal issue.

On to the 2nd week, Hannah made it all the way until Friday, with each day a bit harder than the next, more stomach aches, daily headaches. Hannah had a stomach ache last Friday that she said was a 7 on a scale of 1-10. We worked it out that she would go, so she didn't miss morning chorus and if she was still feeling badly she could call and I would come and get her. Got the call about noon and she came home to sleep the rest of the afternoon.

Week 3 (this week) and Hannah was explaining to me that she has headaches pretty much every day, usually beginning after snack time and before lunch. I have an email in now to her oncologist to see what his thoughts are. I'm thinking it's probably fatigue and the stress of the day. School is hard for her this year. We began modifying her workload after day 1 this year. That didn't happen last year until the end of the school year. She tells me every day that she doesn't want to go to school the next day. I wish it wasn't so hard for her.

Hannah does have a great support team in place this year. She likes them and I love them! After our first night of homework, Hannah spent 1.5 hours working. Her special education teacher checked in with me, and I explained our difficulties and she immediately notified all Hannah's teachers who got back to me right away and told me to "not let her work that much at home." They really have her best interests at heart, and I'm glad to have them.

I have lots more to tell you all about, some great things happening with Hannah's Cans for Cancer, and other fun and not so fun stuff so I'll be back soon!


Wednesday, September 8, 2010

Yesterday 46 brave mommas shaved their heads to raise awareness and funds for childhood cancer. Why 46? Because each day, 46 children are diagnosed with cancer. Just 3 years ago, Hannah was one of those children.

Watch for some familiar faces of some of our friends you may have come to know this Hannah's website-Peggy (Coleman's mom), Heide (Jessica's mom) and Mimi (King Julian's mom), all angels now. Please take a moment to view the video, I'm sure you'll be moved as I was.

Watch for these bald mommas on the 2nd Annual Stand up to Cancer show, Friday Sept. 10th at 8pm eastern time.

September is National Childhood Awareness Month.

Sunday, September 6, 2010

Another month gone, and school is starting! We spent our August with a trip to my parent's house in Indiana which is always fun for the girls. They kept busy with trips to Carlson's (the local drive in hot dog stand with the best root beer around), blueberry picking, water park, fishing and crazy water swinging and lots of visiting time with Grandma and Grandpa and cousin Sydney. We were then home for 4 days and left for a family vacation to Canada!

Dave had been planning this bucket list trip for the family to Alberta Canada in the Canadian Rocky Mountains. We spent time in Jasper National Park and Banff National Park. Both are just amazing places. We saw bears for the first 3 days we were in Jasper, 2 of them right on the side of the road! We saw a mother grizzly with her 2 cubs on one of our hikes, very close to us. We had just passed the park ranger with her rifle who was looking for the bears. It was the most beautiful scenery we have ever seen. Dave had an ambitious schedule planned for us and had done a lot of research on the hikes he wanted to take. We saw waterfalls, canyons, glaciers, elk, grizzly bears, black bears, mountain goats, coyotes, and big horn sheep. One thing we hadn't planned for so well was Hannah's feet. It had been a while since she had such rigorous exercise and pounding on her feet. By day 3, she was loudly voicing her displeasure with hiking. By day 4 she was clinging to a bridge on the hike, refusing to go any further. She was limping and crying. Dave began carrying her for much of the difficult terrain on the hikes, usually up the side of the mountains! Hannah didn't really like that, she said it was uncomfortable. I know she have rather walked, but she just physically couldn't do it. I told her that her dad was in such good shape, he needed a bit more of a challenge to raise his heart rate by carrying her-and I was joking about that!

Dave had planned well, with all of our hikes listed as "moderate". I told him he needed to write the author of those many books he read and tell them our definition of moderate was a bit different. Absolutely loved the trip, I describe it as an endless stair master through Christmas (many of the hikes were through pine forests and they smelled wonderful.)

Tomorrow is the start of school! I don't know where the summer went, it always just flies by. Hannah is entering 6th grade this year, and Colby will be in 8th. I was able to get Hannah's information early before we left for Canada so that we could begin preparing her emotionally for the changes for this year. She has a great group of teachers this year. She will be in the inclusion class since she now has an IEP to help her with any special accommodations she needs. Hannah doesn't have an individual aide assigned to her, but she does have a special education teacher and there is a full time aide in her classroom. We don't have our beloved aide Natalie with her this year, and her favorite teacher Mrs. Finger isn't there either. Every time we bring this up Hannah gets upset and cries, so I'm not sure what to expect for tomorrow. I know she will come to know and trust these teachers and new aide, but transition is difficult for her. We went up to her classroom a few weeks ago so she could see where it was and we spoke with her math teacher who was there. On the way out, we went by Mrs. Finger's classroom and Hannah was going from desk to desk crying and trying to find her desk from last year with the smiley face inside. She says she wants to go by and say hello to Mrs. Finger and Natalie tomorrow on her way in, and hopefully she won't get stuck in there! I wish I could be a fly on the wall tomorrow.

Will report in soon! Thanks for still keeping up with us!


Sunday, August 1, 2010

As Todd would say, if it's been a month without an update, it must mean that all is well! All is great! Hannah has been enjoying the summer with lots of activities. She has math tutoring 2 times a week at 8:30am which hasn't been easy, but I find that if I talk to her about it the night ahead of time, it helps a bit. Last week I didn't give her enough notice, it was difficult to get her up in the morning and she accidentally kicked me right in the nose. I saw stars, and there is a good chance she broke my nose. I contemplated going to the ER, but there really wasn't anything they would do. It still hurts, it's been about a week. She felt badly and apologized later, but she still went to school. This week is her last week of summer tutoring, and I hope it's been enough to keep her up to date with things.

We have all been pretty busy this summer. I keep saying that summer is supposed to be for relaxing, but why don't we feel relaxed? It's a fine line you walk between being too busy and being bored. When the girls aren't doing enough, they are on their computers and watching tv. When they are doing too much, they are tired! Hannah did a farm fun days camp that they said was "very boring mom." She also did a tennis camp which she really liked. Hannah also swims on a swim team on Tuesday and Wednesday nights. In true Hannah fashion, she said she was not going to swim on this team. She swam on the team last summer, then continued to swim during the year at an indoor place. She really improved from last year, so this year she was on the next level up team with her friends.

I think she was a bit nervous about swimming this summer. Last year Hannah wasn't as strong and needed a lot of help and encouragement while swimming. She couldn't do a full lap without stopping last year. If it wasn't for Marissa, a teenage girl that is a coach for the team, Hannah would never have stayed and swam. Thanks goodness Marissa is there again this year, and thank goodness that Hannah doesn't really need her that much this year! Marissa was so surprised to see how much stronger Hannah is this year. She doesn't need breaks that often, and in general can keep up with the kids in her lane. Last week I heard her ask Marissa if she would stay by her lane because she was tired. Still, she did fine.

We are count down again for Grandma and Grandpa's house, only 5 days left. Sydney is here with us for a visit and the girls are having a great time with her. We leave on Thursday for Indiana.

So in between swimming, lacrosse, school, basketball, tennis, more school and more lacrosse, we have been trying to get in some fun in the sun. Hannah continues to do well. The hospital called last week to schedule her next MRI-for DECEMBER!! Wow, that's great and a little weird. About 2 weeks I eliminated one of Hannah's medicines. She still takes two anti-nausea meds. Almost immediately she began to have stomach issues. I don't tell Hannah when I decrease her medicine. She started having stomach aches again in the mornings, that lasted quite a while. She stopped eating breakfast, became more selective about what she would eat, and just seemed to regress. Sometimes this happens when I decrease her medicines, and it passes but this just wouldn't pass. The issue when adding back in a medicine, is that you usually can't just add it back in at the same dosage. Her doctor explained that you generally have to increase it from the last dose, then slowly decrease it back to what it was. So, I added the medicine back in 2 days ago at double what it was. She is much better already. All this changing and she never knew. Well neither did her doctor! Really no need to contact him unless I couldn't get it under control myself.

Hope you are all enjoying your summer. We don't go back to school until after Labor Day in New York, so we still have over a month left! Pictures to follow soon, I'm off to bed!

Wednesday, June 30, 2010

Clear Scans once again, Alleluia! Hannah had a head MRI on Tuesday afternoon, and we are all clear once again. As I stood with Hannah in the MRI, holding her foot like I always do, I was playing out the scenarios in my head...what if? What if it was all clear? I expected it to be all clear since Hannah has been doing so well and has had no issues. But, what if there was something? So many kids lately have had "something." Even after long periods of "nothing" and "all clear", so many children have shown up with "something" just out of the blue. At this point, it's difficult to put us in the that position. At one point in the past I had everything all set on what I would do, I would jump into action and beat down the new brain tumor. But, it's almost as if I have faded away from that and can't believe that it will ever happen. It's like a safety net I have built around Hannah so that it can't happen. It's not so bad living in this dream, I like it. We don't have to go back until December 14th, wow!

I see it every day. I see kids die every day from cancer. It's really been horrible lately, or maybe I'm just more in tune with it now. It just seems like a lot of kids are recurring and a lot of kids are dying. So many heartaches and terrible stories. Kids do not die peacefully from cancer.

So, are you still with me? Hannah delivered a bunch of goodies to the clinic during our visit on Tuesday. Colby came with us, and was so enamored by a little girl that Hannah delivered a hat to. This little girl was bald (although Hannah informed us that she DID have little wisps of hair) and picked out the cutest pick hat. It was too big for her bald little head, but looked so darn cute on her, her dad though so too-we saw him taking a picture. Hannah really got a kick out of passing out some of the hats we brought. Here she is getting everything ready. This wouldn't be possible without all of your generous donations to Hannah's Cans for Cancer. I plan to do another update soon on all of the wonderful donations we have had recently, thank you so much!

This week Hannah is in tennis camp, so it's off to bed! Enjoy the summer, we are!


Wednesday, June 9, 2010


Our Relay this year was another success! Every year it seems there is so much work to be done to get ready, but every year it is so worth it. Hannah had a good time again this year, what a true SURVIVOR she is! She wanted us to walk the Survivor lap again this year with her to start the Relay so we did. The second lap of the Relay is caregiver lap. Love this picture of Colby walking with Hannah. Colby has done so much for Hannah over these last 3 years, and it hasn't always been easy for her. She was the one left behind while we focused on Hannah. She was the one who went to games and school and concerts and plays without her mom and dad (although Grandma and Grandpa were great stand-ins). She was the one who had to play second fiddle because her sister was so sick. We tried hard not to make her feel left out but it was inevitable. And look at her-still taking care of her sister. Just love this picture.

Our team this year raised close to $2000-with $755 coming from our quarters lap where everyone comes out and lines the track with quarters. Here is little Thomas-the only survivor at Relay younger than Hannah. He has hepatoblastoma (liver cancer) and is doing really well. He worked on these quarters for almost an hour! Our team Wheel of Fortune raised $238-check it out! The kids had great fun with this one, and Pam did an awesome job making the wheel. The rest of our money raised came from the luminaries and other donations made. Thanks to everyone for your support once again this year. This year Hannah collected 64 luminaries!

To date, our Relay has raised $155,000 with more money still on it's way. That's awesome! I had better end now, it's taken me 2 weeks to get this posted. Hannah is starting in on another round of tests and doctors appointments, which has kept us pretty busy the last week. She has her next MRI on June 29th.


Monday, May 31, 2010

Happy Memorial Day to everyone and thank you to our veterans past and present. Today we honor them all.

Just a quick note with some new pictures of Hannah. She is growing up so quickly and thank goodness she got the chance! Hannah's 11th birthday is this Saturday, June 6th. We will celebrate at Relay for Life on the 5th, then again on the 6th for Hannah's life celebration! I can hardly believe it.

Hannah at crazy hair day-yes, that's her name written on the back of her head!


Spring concert-she's on her tiptoes trying to be as tall as her friends!


Tuesday, May 18, 2010

Just a quick post tonight. We are getting down to the last few weeks before our Relay for Life. If you are thinking of joining the us in the fight against cancer this year by purchasing a luminary, please let us know. We are now at a total of 45 luminaries! Last year our total for luminaries was 117, so I'm not sure we'll make that mark again, but we hope to get a little closer. Every dollar counts in this fight. Here is our information again, please join us if you can!


The luminaries are $10 each. We will decorate one for you-I have all the bags here or you are welcome to decorate them yourselves also if you like (I will get you the bags). Let us know if there is anything in particular you would like on your bag and we will decorate it specially for you. If you would like to email any artwork or photos, we can also include those on the bags. We will send you an email with a picture of your bags once they are completed. We'll see if we can get enough to complete one entire circle around the track this year!

Here is what we need if you are purchasing a bag:

Your name and address
Who is to be honored on the bag (in memorial or in honor of)
Any photos or artwork you would like included on the bag (you can email or send them)
Anything additionally you would like us to include on your bag
Your check made out to American Cancer Society-bags are $10 each, send to us at the address listed on the blog page, left hand side. You may also paypal me the money at if that is easier.

I signed on tonight to read some of the kids' blogs I follow and went to Kevin's site. Kevin was a brave warrior that was diagnosed with medulloblastoma at age 3. Ten years later, at age 13, Kevin was diagnosed with GBM-another brain tumor. 10 years later! Kevin died in January of this year. This entry just struck me-

Mom and Dad will be at the cemetery from 1-4pm tomorrow with some honey baked ham, sandwich fixings, and drinks if anyone wants to come and join them to honor Kevin's birthday.

No parent should have to celebrate their child's birthday gravesite at the cemetery. How humbling.

If you'd like to join us in the fight to save more kids in their battle against cancer, you can purchase a luminary for RELAY for LIFE! As of tonight, we have 16 bags sold. Here is the information:

The luminaries are $10 each. If you are interested in purchasing any, please let us know. We will decorate one for you-I have all the bags here or you are welcome to decorate them yourselves also if you like (I will get you the bags). Let us know if there is anything in particular you would like on your bag and we will decorate it specially for you. If you would like to email any artwork or photos, we can also include those on the bags. We will send you an email with a picture of your bags once they are completed. We'll see if we can get enough to complete one entire circle around the track this year!

Here is what we need if you are purchasing a bag:

Your name and address
Who is to be honored on the bag (in memorial or in honor of)
Any photos or artwork you would like included on the bag (you can email or send them)
Anything additionally you would like us to include on your bag
Your check made out to American Cancer Society-bags are $10 each, send to us at the address listed on the blog page, left hand side. You may also paypal me the money at if that is easier.


Wednesday, April 28, 2010

Hannah was invited to spend last Saturday with her Hofstra softball team. They were holding a Friends of Jaclyn day (the organization that matched Hannah up with the team for adoption) to honor Hannah and two other kids that are adopted by the Hofstra baseball team and the Hofstra girls softball team. Because of scheduling, Hannah was the only FOJ kid at the game.

The team is just so welcoming to Hannah each time we are there. Hannah was very excited to go, but as soon as we get there, she is very shy, almost not speaking at all! She always gets so shy when we are around the team, unlike her everyday normal. It made me remember something Hannah's neurosurgeon said to us after her surgery. A couple days following her initial brain surgery, Hannah was withdrawn and began to lose the use of her left side completely. Her doctor came in to talk to us about her progress and her issues. I will never forget that he said "the kids that are more aggressive and outspoken do better with recovery. Hannah seems to be more of a shy, withdrawn and sweet little girl. She doesn't have that aggression and fight in her." My initial thought was-WHAT???? He doesn't know the real Hannah. The Hannah we knew was spirited, funny and always the life of the party, the center of the group. Not a fighter? He had no idea how much of a fighter she was. And when she couldn't fight anymore, we stepped in to hold her up, to push her when she needed to be pushed and to just hold her when she needed some down time. She fought through and she made it. She still fights every day, and often reminds me how wrong that doctor was and still is.

So, I digress!! Hannah went out and warmed up with the team and spent some time hanging out with them as they prepared for their game. The time came to throw out the first pitch and Hannah was so nervous. She has done it before, but for some reason she didn't want to go out there this time. I knew she would do it when the time came.
Coach Anderson walked her out, and the team was there to back her up. Another strike, she did great! It was a beautiful day and we sat back and enjoyed the rest of the game, which they WON! The team is having an awesome season and they are very good! It is absolutely a wonderful group of girls and coaches.

After the first game, Hannah went down and gave the team the big top cupcake she made and decorated for them. They aren't allowed to have sweets during the games so they saved it for later to eat. She also got to write up the roster for the second game with Coach Williams. She thought that was pretty cool.

Hannah decided that for the next game, instead of baking something for the team, she is making them a video (so, Hofstra if you are reading this, act surprised!) So, we took lots of pictures that day, and she has already started putting together the video. I will share it when it's completed. Thank you to the entire Hofstra team and to Friends of Jaclyn. You have really made a difference to Hannah and our family.


Saturday, April 24, 2010

Hannah spent the day today at Hofstra as their guest of honor. Much more to come on the fun today, but for now, posting Colby's web address to her photography site...please stop by and check it out!

Colby's Site


Monday, April 19, 2010


It's that time again, yes we are all another year older. It's Relay for Life time. This year, our relay is June 5th/June 6th (Hannah's birthday.) Our focus again for our Relay for Life will be on offering luminary bags in honor of a special person in your life touched by cancer. These bags have so much significance during the Relay. Here is a description about the luminaries:

Help us shed light on the fight…

Whether it’s a parent, a sibling, a friend or a neighbor, we all know someone who has been touched by cancer. Relay For Life is one way of recognizing loved ones who are surviving cancer and remembering those who have lost the battle. At dusk, we quietly remember those whose lives have been touched by cancer. Luminary bags line the track, each bearing the name of a loved one. This ceremony of light symbolizes the hope and courage with which we all continue to fight cancer. For a donation, you can remember someone who lost his or her battle to cancer, or honor someone winning the fight.

In total silence, all of the luminaries are placed and lit around the track and everyone walks the track by the light of the candles. Last year there was a bagpipe player who led us while playing. The luminaries are decorated in support of someone with cancer, or in memory of someone who passed away from cancer or just something in general. Last year this was such a special part of the Relay for us. What a sight it was to see all of the beautiful bags that we and other friends decorated last year. There were so many luminary bags with Hannah's name on them. She loved it! And to see all of the bags that the girls decorated for our friends, warriors and survivors was wonderful.

So, we are open for sales! The luminaries are $10 each. If you are interested in purchasing any, please let us know. We will decorate one for you-I have all the bags here or you are welcome to decorate them yourselves also if you like (I will get you the bags). Let us know if there is anything in particular you would like on your bag and we will decorate it specially for you. If you would like to email any artwork or photos, we can also include those on the bags. We will send you an email with a picture of your bags once they are completed. We'll see if we can get enough to complete one entire circle around the track this year!

Here is what we need if you are purchasing a bag:

Your name and address
Who is to be honored on the bag (in memorial or in honor of)
Any photos or artwork you would like included on the bag (you can email or send them)
Anything additionally you would like us to include on your bag
Your check made out to American Cancer Society-bags are $10 each, send to us at the address listed on the blog page, left hand side. You may also paypal me the money at if that is easier.

I will close with some pictures of our last 2 Relays. Here is Hannah in her first Relay-2008

Relay for Life 2009:


Tuesday, April 7, 2010

I hope everyone had a very happy and blessed Easter. It was also my mom's birthday, HAPPY BIRTHDAY TO THE BEST MOM ever!

I'm not sure exactly what's going on with Hannah lately. When my parents were here, she was going to bed later than normal time, which may be part of it. Then spring break week of course they were staying up late, which was fine because she also had time to sleep in. About 2 days before the end of the break Hannah got a cold-sore throat and very stuffy nose. Yesterday she did fine in school, but last night as I was putting her to bed she asked if she could start going to bed earlier! It was a bit after 9pm. What kid says that? I think she wants to stay up, but she just can't and she knows it. I thought that 9pm was early enough, but we're backing that up a bit now. The difficulty in going to be early is that by the time she is out of school, done with after school activities (piano, horseback riding, swimming, lacrosse, religion), spends up to 2 hours on homework, and eats dinner, it can be between 7:30 and 8:00pm. Colby and Hannah like to have a snack before bedtime, so if bedtime is any earlier than 9:00, she is eating her snack right after dinner. I guess there needs to be more hours in the day for things like this- this is Hannah relaxing on a beautiful day last weekend.

Today I got a call at 1pm from Hannah at school asking to come home. She was complaining that her stomach hurt, but she stayed for the last 2 hours and seemed to do fine. I put her to bed at 8:30pm tonight and she didn't resist. We will see if, over time, this helps with her fatigue.

It's Relay for Life time again, so we'll be talking about that more in the upcoming days. This year it is on Hannah's birthday, she'll be 11 years old, wow!


Sunday, March 28, 2010

Colby just informed me that it is time to update the blog, so here I am! The girls are on spring break this week, so we're all happy about that. We don't have any plans to go out of town, lots of little things to do. Hannah has to go back to the dermatologist this week to check to be sure that the last mole was completely removed. We will also check her whole body for any other marks.

Here are some pictures of us at the bird sanctuary in Southampton. It's a really cool place, birds land right on your hand...or head!

We had Hannah's teacher conference this week. She is doing remarkably well, with her two lowest marks in science and math (the only 2 categories in which she is below grade level). Her biggest challenges are processing speed, memory retention, planning and organizational skills, attention deficits, fatigue and nausea. Umm, think that's enough? Her teacher this year in 5th grade is also the same teacher she had for 4th grade and we love her. She has such a good understanding of Hannah's issues, and has been able to see the progress that Hannah has made over the last two years. She makes modifications when Hannah needs them, and knows how to motivate Hannah. Next month Hannah has two state tests-the English/Language Arts and only 2 weeks later the math state test. Frankly I could care less what her scores are, but the tests must be taken.

Her teacher did recommend that Hannah be tested for an IEP-Individualized Education Plan. Public schools are required to develop an IEP for every student with a disability who is found to meet the federal and state requirements for special education. Up to this point Hannah has had what is called a 504 plan-which is different from an IEP in that it usually only makes accommodations for physical issues for a disabled student. Our school has been very good about providing anything that Hannah has needed, even under her 504 plan. Anything we have asked for, they have provided. However, now that Hannah will be in 6th grade next year, she will need an IEP to qualify for some accommodations-especially in math. Six grade math moves very quickly, and we know that Hannah will struggle. With an IEP in place, she will be able to be pulled out only for math, which moves at a much slower pace. She will have to qualify for an IEP-I believe the testing is similar to the neuropsychology testing she has had done.

Enough of that-Hannah did participate in the science fair this weekend. Here she is with her project-Temperature and Crystals. She had note cards prepared to help her explain the project to the judge, and she did well. She wanted to do a food project because she likes to cook.

As far as me, I'm 2 weeks post surgery now and not doing great, unfortunately. It was bladder surgery that was supposed to be relatively easy. I have been back to the doctor about 12 times, spent a day in the ER and had many complications which probably don't need to be spelled out here. Mom and dad stayed on for an extra week after Colby's birthday to help, which was definitely a big help since I couldn't drive and am still on Valium. Back to the doctor again tomorrow, still keeping an open mind.

Happy Spring everyone, let's hope it starts to feel like it soon!

Sunday, March 14, 2010

It's been almost a month since my last post, wow! First I wanted to say: HAPPY BIRTHDAY COLBY!!! Colby turned 13 years old today, hard to believe it but it's true. She is the best daughter we could ask for, and we couldn't be prouder of her!

Hannah has been doing well. She had a clinic checkup this week. There were several issues I had to discuss with her oncologist. About a month ago I decreased Hannah's medicine. We want to continue to try to decrease it, although she may never be completely free of it for nausea. That has worked well, and she didn't even seem to notice the change.

She continues to experience fatigue. She hasn't been out of school lately, so that's good, but I can see it's building. She has been experiencing more stomach aches in the mornings the last few days and looks exhausted at night. We try to keep her bedtime consistent, in bed by 9pm each night, at least on most nights. She just can't keep going consistently like we can. Whether this changes over time or not, is yet to be seen.

I also spoke to her doctor about her height. We know that last year she grew at just half the rate of normal. She seems to be slowing down even more. This is really an issue for her endocrinologist, and we see him again at the end of June. Hannah is at the 3rd percentile for height, but we think she may be falling below that line now. We discussed growth hormone, it's uses and it's effects. Hannah is now 2 years and 3 months out from the end of chemo, so he feels the use of hgh is safe as long as it is used only to supplement what her body isn't producing. There is research to support that doses used at these levels are safe and do not increase odds of recurrence of tumor. Conversely, our oncologist does not advocate the use of hgh at higher levels than the body produces, in order to stimulate growth. There is no research that supports the use at these higher levels, and we just don't know if it's safe. Believe me, this is a very simplified version of what all is involved. This is an issue for discussion the next time we see the endo.

I also spoke to to the doctor about gene testing for Hannah. I have been reading about specific gene mutations of kids with medulloblastoma. I read an article recently regarding recurrence of kids with "average risk" medullo (ie: Hannah). Here is the article in case you are interested:
link here.

His comments were interesting. He pointed out that even if she did not have this mutation, that could provide us with a false sense of security since medulloblastoma is not linked only to this one gene mutation. If it were as simple as that, a cure would already be found. There are several other factors and/or gene mutations that could be involved in this disease. He wasn't adverse to testing, and would make it happen if we wanted to push forward, but didn't want us to rely on only this one test. Also, with Hannah already more than 2 years out from treatment, she is most likely past the window of the type of recurrence discussed in this particular study.

So, for the mean time, we will just keep our eyes open for these type of things, without living in constant fear of the unknown. At some point you have to focus on the life ahead without recurrence, rather than just waiting for the other shoe to drop.

Signing off for now. I am having surgery tomorrow and have to be at the hospital at 5:30am! It's nothing too major but will be in the hospital overnight and then at home recovering. Mom and dad are here taking over for now, thank goodness for that!


Wednesday, February 17, 2010

The girls had winter break from school this week, can't believe it's over already. Nothing really exciting happening, we are in town while dreaming of the Bahamas. We took a drive over to the south side this week to Montauk to see the seals. I tried to prepare the girls in case we didn't see any so it wasn't a complete let down. It was a short hike to get to the ocean, probably 20 minutes. Hannah only fell once so it was a good day. We saw seals immediately upon entering the beach. It was so cool. There weren't a lot, only 4, but so much fun to watch. Look at this cutie. It was pretty cold when we got down to the water, we stayed for about 30 minutes.

Hannah also had a sleepover last night (which is why I'm so tired today.) Four girls over, finally asleep about 12:15 in the morning, so not that bad. We made our own pizzas, made cut and tie pillows, played lots of hide-and-seek and hamster games, and watched a movie. It was a busy night, but so much laughing and so much fun.

So that was the fun stuff. Now for the other stuff. Hannah's mole biopsy came back as dysplastic nevus (atypical mole.) It could be something or it could be nothing. Back to research mode. What I know so far is that it could be a gene mutation (called Gorlin's syndrome) which causes both atypical moles that could eventually be cancer AND medulloblastoma, or it could be a secondary reaction as a result of the radiation she received, or it could be something unrelated. We have a clinic appointment in a couple weeks, and I'll discuss it with her oncologist. We also have a follow up appointment with her dermatologist-one more doctor to add to the mix-in six weeks to ensure she got the entire mole out and there is no repigmentation of the area.

If I had to make a guess, I would guess option #2, secondary issues resulting from the spinal radiation. The mole was in the field of radiation on her back. Will keep you informed as we progress through this one!

Enjoy your weekend,


Tuesday, February 9, 2010

We are at home today, snow day from school, yippee! We have a delay tomorrow too, so not bad. We probably only got 8 inches or so. Hannah wasn't too excited when I told her we were going to the dermatologist this morning to get a mole on her back examined while everyone else was at home playing in the snow. Last time at clinic, her neurologist saw it and suggested we go get it looked at. Of course, the doctor today wanted to take it off and biopsy it. I hadn't prepared her for that. There were some tears because the shot of lidocaine really hurts, but she didn't feel anything after that. Now we wait. I'm not even going to get into the radiation induced mole issue, not going there unless we have to.

Hannah's next clinic visit is scheduled for March 16th. She is still struggling with stomach issues. I haven't talked too much about it here, but she is out of school on average 1 day a week. It's not typically all day, but she will come home from school sometime during the day. For the last couple of weeks it's been on Fridays. It's almost like she is just too tired from the long week, and she struggles to make it through. She comes home and sleeps for up to 5 hours, gets up and feels much better. Then she eats, has more energy and stomach feels much better. So, what is that? Last week she came home on Friday from school, slept for 3 hours, I woke her up at 4 because we had something to do, and by later that night she was good enough to play lacrosse! I'm planning on talking to her oncology group again in March to see their thoughts and ideas. If any of you reading this have any ideas, I'd be open to hearing them!

Speaking of something to do, Hannah and I went to the Coaches versus Cancer game here at our high school last week as representatives for the American Cancer Society (filling in for our friend from the ACS that couldn't be there.) Hannah had a good time getting people to sign petitions, hanging up the donation signs and getting people to play the games at our table. She also went out with me to give the speech in front of the crowd and present the coaches with their certificates of appreciation. We had fun! American Cancer Society runs this event all over the country in conjunction with coaches from the National Association of Basketball Coaches to raise awareness and funds.

We were then off to her lacrosse game (at 9 pm). She loves to play, and we love to watch her. We're not sure how much longer she will be able to play. Once the girls get older, the competition gets stronger, and the girls get faster. She won't be able to keep up and it will get too dangerous for her to be out there with the fast movement, pushing, shoving and flying hard lacrosse balls. She runs hunched over like a little old lady. Her upper body is always going forward a bit quicker than her feet can keep up with, so we're always afraid that she is going to do a face plant at any minute (which she did a couple games ago.) She really enjoys it now, more than last year. She doesn't usually get the ball during a game, but feels like she is more a part of the action this year. At one point during the game, after a penalty the ref handed her the ball, she took a couple steps a fired a quick pass right to a teammate. Dave and I looked at each other like "did you SEE that?" We were both surprised and laughing! The day after the games she always has some type of soreness or pulled muscle. It's because her body isn't conditioned like a normal 10 year old. Sometimes it's a twisted ankle, or a With the chemo, radiation and inactivity over the past 3 years, she is still behind. But, she's getting better, little by little.


Tuesday, February 2, 2010

I found this article recently and wanted to share it, I found it very interesting. The dates are now outdated. It's both interesting and uplifting. Enjoy.


The Ravens' (very) secret weapon

You're 14 years old. You've got cancer. And your team asks for your help.

ReillyBy Rick Reilly
ESPN The Magazine

Courtesy Jamie CostelloRay Rice's 83-yard scamper? Matthew Costello made the call.

Hey, Baltimore fans, this might make you spit out your crab cakes.

You realize who's been calling the first play of Ravens' games lately? Like the one that went for an 83-yard touchdown against the Patriots?

If you said head coach John Harbaugh, you'd be wrong.

Offensive coordinator Cam Cameron? Wrong again.

QB Joe Flacco? Strike three.

The guy who's been calling the first play lately isn't a guy at all. It's a 14-year-old Baltimore kid. His name is Matthew Costello, he's got an inoperable brain tumor and he's on a lucky streak.

"You gotta meet this kid," says Cameron.

This all started when Matt, a third baseman and pitcher for Loyola Blakefield Middle School, was hit in the eye with a pitch that tipped off his bat. He ended up with double vision. A few dozen doctors later, they found a malignant tumor. Now his days are mostly going to chemo sessions and wondering if he's ever going to get back to playing any of the three sports he loves.

Cameron's son, Danny -- Matthew's classmate -- told his dad about him, how he lives for the Ravens. Next thing you know, Cam Cameron was driving through the biggest snowstorm to hit Baltimore in years -- getting stuck three times -- with a Flacco-signed football, a signed hat and glad tidings for Matthew.

Why? Maybe because Cameron survived serious melanoma cancer at age 28.

Matthew's dad is a morning news anchor at WMAR in Baltimore and he was on the air, live, when his phone spit out this befuddling text from his wife, Donna: Cam Cameron is on his way.

"I'm like, 'What?'" Jamie Costello recalls. "'In a driving snowstorm?'"

Yep. Cameron talked with Matt for 20 minutes, and then, as he was leaving, turned and said, "Hey, Matthew, whaddya wanna call for our first play Sunday?"

Mouth open. Eyes not blinking.

Since the chemo took his brown hair and a whole mess of his white blood cells, he only leaves the house to go to the hospital. Instead, he listens to comedy on his MP3 player. It's a crazy thing to see a kid, fighting for his life, constantly laughing.

"Seriously," Cameron said.

Since Matt played QB for the school team, he knew when it was time to audible. "Play-action pass," he said. "Be cool if you could get it to Todd Heap."

Sure enough, first snap against the Chicago Bears in Week 15 -- with the Ravens trying to make the playoffs -- Flacco fakes the handoff and drops back to pass. Only he bounces the ball off the turf for an incomplete pass. But later in that series Cameron looks at his play sheet. Scrawled on the side, he's writtenMatthew Costello. So he calls Matt's play again and it goes for a 14-yard touchdown to Heap, the tight end. Ravens win, 31-7.

End of story, right? Except, three weeks later, the night before the Ravens' playoff game with New England, Cameron calls again.

"OK, Matt, whaddya wanna do Sunday?"

"Run the ball," pronounced Matt. "Ray Rice. He's hot."

So, first play against the Patriots, Flacco hands to Rice. There's a hole and Rice is through it like he's being chased by a bear.

"And I'm thinking to myself, 'Don't tell me this is going to go all the way,'" Cameron remembers. It does -- 83 yards, untouched, for a touchdown. "The whole way, I'm thinking of Matthew," Cameron says.

Nobody knows any of this except Cameron's and Matt's families. Jamie Costello is in the press box, screaming like his underwear is on fire. He hadn't told anybody that his teenage son was the new brains behind the Ravens' offense, so every single person gives him the stink eye. There's no cheering in the press box, dude. Unless you're cheering for a kid who's trying to survive.

Ravens win, 33-14.

Says Cameron: "I just looked to the sky and said, 'Maybe there's something to this kid!'"

Oh, there's definitely something to this kid. Since the chemo took his brown hair (the family calls him "Barkley" now) and a whole mess of his white blood cells, he only leaves the house to go to the hospital. Instead, he listens to comedy on his MP3 player. It's a crazy thing to see a kid, fighting for his life, constantly laughing.

This month sometime, Matthew will gulp hard and find out if his tumor has shrunk enough to begin radiation. If not, it's back to the chemo, Frank Caliendo going through his brain, prayers going through everybody else's.

Cameron knows a little how the kid feels. Earlier this fall, he had another cancer scare -- this one prostate -- but a battery of tests turned up nothing.

"My three boys and I talk about Matthew all the time," he says. "Anytime we're going through something a little tough, we say, 'How do you think Matthew's doing?'"

As for Matthew's dad, he can't find the words. "I used to worship Brooks Robinson," Jamie says. "But Cam Cameron is higher than that now for me."

The Ravens play Super Bowl-favorite Indianapolis on Saturday, on the road. Cam is planning the Matthew call for Friday night.

So, Matthew, whaddya wanna do?

"I haven't decided yet," he says. Smart. The Colts could be reading.

Not that he doesn't have a game plan.

"When I get better, I wanna do what Coach Cam did for me. I wanna make some kid feel the way Coach made me feel."

Funny, right? How a kid with double vision can see so clearly?