Wednesday, May 28, 2008

Neuropsych testing

Henry spent several hours today with a pediatric cognitive specialist for neuropsychiatric testing. They schedule kids for 6 hours, but he needed only 2 1/2! He took to the specialist very quickly, and completed his 'games' happily. We'll get the results back at our next visit with them, but we don't expect anything of significance. This was his baseline testing so that his cognitive progress can be monitored over the next several years.

After that we had a visit at the oncology clinic. He felt good today, and enjoyed teasing the clinician. His counts continue to get better and better, though we've been warned that radiation can impact them due to the temporary damage to the bone marrow in the spine. Still, he'll be starting out from a fairly strong point.

He won't have another clinic visit until next Wednesday after his first dose of radiation. We are planning on moving back into St. Casimir's (thank you, Believe in Tomorrow!) for the next several weeks. This will allow us a home base in Baltimore to avoid 4 hours in the car daily, but we'll still be able to spend weekends together at home as a family. When I told him today that we'll be going back to Casimir's next week he said, "Good, I like it there."

We feel more and more ready to face radiation. Of course, we anticipate some unpleasant short term side effects like nausea, vomiting, hair loss, and fatigue, but we hope that they will be mild and brief. Even more so, we are hopeful that this will be the end of the cancer and we won't have to do things to Henry to make him feel sick anymore.

Tuesday, May 27, 2008

National Childhood Cancer Awareness Day

CureSearch is pleased to let you know that on May 22 the US Senate passed S. Res 563, the "National Childhood Cancer Awareness Day Resolution". This Resolution was introduced by Senator Wayne Allard of CO and Senator Hillary Rodham Clinton of NY and passed by unanimous consent of the Senate. We are grateful to the two Senators for their recognition of the need to eliminate childhood cancer. Below is the announcement from Senator Allard's office.

Senate Passes Allard-Clinton
‘National Childhood Cancer Awareness Day' Resolution

Washington, D.C. - September 13, 2008 will now be recognized as "National Childhood Cancer Awareness Day" as a result of a Senate resolution introduced by U.S. Senators Wayne Allard (R-Colo.) and Hillary Rodham Clinton (D-NY).

"Never before in history has the dream of eliminating childhood cancer been so attainable, yet seemed so elusive," said Senator Allard. "We live in a nation where the effectiveness of treatments and technology offer hope to children who dream of a bright future. Each case of childhood cancer is a very personal tragedy that can strike any family with children, at anytime, anywhere. In setting aside September 13th to recognize this battle on cancer, we continue of our efforts to draw attention to the victims of childhood cancer and the great work of the families and organizations who continue the fight."

"We have made tremendous strides in the fight against childhood cancer, but far too many children still suffer and lose their lives to this illness. The more we know as a nation the better able we will be to prevent and treat the disease and help those who are battling and surviving pediatric cancers. National Childhood Cancer Awareness Day is an opportunity to reach out to all Americans with the facts about childhood cancer, and this day will be an important symbol of our commitment on all days to find a cure," said Senator Clinton.

Childhood cancer is the number one disease killer and the second overall leading cause of death of children in the United States. More than 10,000 children under the age of 15 in the United States are diagnosed with cancer annually.

Tuesday, May 20, 2008

Sign Here

I sign a lot of things pretty mindlessly. After all there are just so many of them. Credit card receipts probably top the list. I click quickly through the pages of online acceptance forms for new software, hitting 'I Agree' without much concern for what I've consented to. Recently the discharge papers for Henry's clinic visits have become that way too. We've been to so many of them and nothing, thankfully, has changed of late so we get the same instructions each time. Call for a fever, take these medications, here's the oncologist's on-call number (which by the way, I put into my phone the very first time), schedule an appointment out front, sign here.

Today was a bit different. There were general instructions regarding Henry's radiation, but page two ran down the list of side effects.


  • Hair loss

  • Reduced or absent growth hormone production

  • Reduced or absent pituitary hormones requiring life-long medication

  • Impaired backbone growth

  • Reduced school performance and possible need for special schooling

Usually effects like this were not of the 'common' variety, but fell under the 'rare' list. While chemotherapy was tough, we've managed to avoid many of the more compounding effects. Radiation was threatening to be different, harsher.

So Henry is sitting on my lap, the radiation oncologist has handed me the clipboard with the consent form. This is usually where my eyes automatically scan for the line to sign, but I delayed. While I know that the alternative to doing this is risky too, my signature on this line was the point at which Henry was going to be made different. The therapy couldn't proceed without this signature. I held the pen and pretended to read the paper again. I felt his weight in my lap, his energy. "I can't wait to eat daddy," he said for the twelfth time in 5 minutes.

I signed it of course. But there was an awful lot of careful thought into that signature, even beyond those seconds turned minutes holding the pen, and my son's future, in my hand.

Sunday, May 18, 2008

The Whirlwind Continues

Although the last three weeks have had some trips to Baltimore, for the most part, it's been calm. At least on the outside. We've had to contend with the radiation decision, which we've decided to push forward on, despite awaiting second opinions. There are weeks of setup beginning on Tuesday. As we're leaning strongly in this direction due to bleak statistics regarding recurrence, we've opted to go ahead with the preparations.

Tomorrow Tara begins working a few days a week again. I will be traveling down to Hopkins with Henry for an early lumbar puncture by which to test his spinal fluid for signs of tumor cells. Tuesday we repeat the trip, but for his radiation simulation. This promises to take longer, but with no actual treatment taking place. We have doctors appointments for the girls to get them prepared for a camp next weekend for siblings of children with cancer.

Recently, one of the children who stayed next door to us in the hospital passed away. This was difficult to hear of and continues to remind us of the awful reality which presses us to live for each day. Despite the presence of this in our lives, or perhaps because of it, we sometimes let ourselves get lost in the normalcy of a lazy, rainy weekend. The passing of children is so very difficult and our situation doesn't let us forget it for long.

A recent positive development is that Henry's eyelashes and hair are coming back. Tiny lashes, barely visible, poked out late in the week and the peach fuzz on his head followed yesterday. Can you tell we're monitoring it very closely?

So we put our heads down again after a short breather and ready ourselves to face the headwind of treatments again. It's an appropriate time again to thank all of you who have helped and been supportive of us, especially so many on short notice and in taking care of Anna and Sophie. Our community family seems to grow daily.

Thursday, May 15, 2008


Henry is doing and feeling great. His days are busy (his mouth even more so), and we're enjoying him immensely. It feels a bit as though we've entered a time warp. When the cancer was found, he was a young three year old. Now he's looking at 4, and it's a very fun time for all of us. He's got some classic third child characteristics, particularly taking on the role of 'the funny one'.

Life is as close as back to normal as it's been since we started this. His medications are minimal, his appetite hearty. Other than clinic visits and our limitations on activities/visitors because of infection concerns, we pretty much do what we want. It's been really nice. "Relaxed" is the word we keep using to describe him. Almost all of the anxiety and stress behaviors we've seen from him for the last 6 months are gone.

Yesterday we were at Hopkins all day. He had some routine followup testing to check for an organ damage after the last round of chemo, which went well. He has along the way contracted a common virus (BK) in his urine that affects immunocompromised people sometimes. He'll take an extended antibiotic for that as well, but it sounds unlikely to be causing us any problems.

His hearing test yesterday showed some additional loss, but not as much as feared. It was explained to us that his loss presents as loss of clarity, not volume. (Guess who isn't going to be allowed to have the TV on so loud anymore?) Many spoken consonants are higher pitched than vowels, and he may have trouble distinguishing. The following chart demonstrates it well, the further to the right on the chart the higher pitched the sound is when spoken.

The good news is that this type of hearing loss is easier to assist with hearing devices. At home, we've certainly noticed some loss, but overall it's been very manageable.

After a lot of deliberation, we have leaning strongly toward proceeding with radiation. We are still planning to discuss Henry's situation with Dr. Roger Packer at Children's National Medical Center and Dr. Gajjar at St. Jude's Children's Hospital in Memphis, to make sure that there is nothing that we are overlooking. The logistics of treatment have not been arranged yet, but we know that it will take place over 5 weeks at Hopkins. Henry will not have to be admitted to the hospital for the radiation, but he will have to be sedated every day, so we are considering staying in Baltimore Monday through Friday so he doesn't have to suffer that long drive every day.

We'll continue to keep you updated as plans materialize.

Monday, May 12, 2008


What a fabulous Mother's Day we had! Some very generous souls put together a benefit for Henry, based around a Harley ride in the Hagerstown area. Though the weather was not kind to them, several brave riders came out to support Henry. We met them (having ridden in the warmth of our van) at the Red Man's Club of Williamsport. Henry loved to see all the motorcycles, and even took a turn sitting on a few of them. He was very impressed with all of the gadgets and gear associated - looks like we may have a budding rider on our hands!

After the ride, we all went inside for some warm food and raffle prizes. Henry enjoyed picking the raffle tickets. Sophie enjoyed the hot dogs! Bryan and I were both amazed and humbled by the money raised to help us manage our bills.

Since the ride, Henry has remembered many times all the motorcycles he got to see. Luckily we took some pictures, which I'm sure will be looked at again and again.

Many, many thanks to Lindy, George, and Shanda for organizing!! Thanks also to the Williamsport chapter of the Harley Owner's Group, the Red Man Club of Williamsport, and the Red Man Riders for participating. We'll never forget it!!

Saturday, May 10, 2008

I Love the Way

I love the way...

Henry plays with his toys as I pat him and sing to him in bed at night.

he laughs when he plays with his sisters.

his skin feels against mine.

he smiles the 'how do my teeth look' grin at me after brushing his teeth.

he jumps into the bean bags in the living room.

he asks to see his friends from school.

he attaches to people.

he buries his head in my neck when he's shy.

he trusts.

he plays.

he dances.

he runs.

he smiles.

he pretends to hide under his blankets.

he reminds us to put on his mask.

he sings along to his tv show jingles.

he loves trucks of all types.

he gets excited to see the mail truck everyday.

he loves to say good bye.

he enjoys driving truckie so very much.

he shows the sign for 'I love you' with both hands at me and we match fingers.

his wisps of hair remind me of what he's been through.

he is so brave.

he looks so calm and peaceful at night when sleeping.

his breathing sounds in the dark.

he takes cars to bed.

he's so polite.

his cheek feels on my lips when I kiss him goodnight.

he is living life right now, every single second of the day.

his skin smells.

he feels in my arms when I hold him.

he cries when he's hurt.

he loves firetrucks.

he furrows his brow.

he likes to show me everything that he does by calling, 'Hey Daddy'.

he shares.

he copies my mannerisms, "isn't that clever?"

reverse psychology seems to always work with him.

he looks in his mommy's arms.

he talks in the morning.

he gives himself his medicines.

he learns so quickly.

he uses such big words and then asks what they mean.

he is so relaxed and happy right now.

I love the way he's Henry.

A Pause

One of our appointments this week was a consult with the radiation oncologist. The truth of the matter is that Henry's tumor type is very aggressive, and recurrence is more likely than not. The chemotherapy that he has received is much more intense than 'standard' chemotherapy for medulloblastoma, but what he has done is so new that there is little information available on how well it works for other children like him. The hope and goal is to cure the cancer with chemotherapy in order to avoid radiation.

Radiation is very hard on a young brain. It is more effective than chemotherapy, and if Henry were older would have been the first therapy he received. But for young children and infants, the side effects in terms of brain development can be devastating. Chemotherapy is used in part to buy time prior to use of radiation. The high dose regimen that he has had is designed to avoid radiation altogether.

The fact remains that with the spread that Henry has had to his spine and meninges, as well as the more aggressive cell type that his cancer is made of, we remain very fearful of recurrence, even after all that he has been through. However, the benefits of radiation are unknown, since his treatment is so new.

So we are left with a decision of whether or not to give him some radiation, and if so, how much. All of our doctors stress to us that there is no right or wrong answer to this question, a personal decision balancing survival with quality of life. Different families make different decisions. Though Henry is doing wonderfully right now, and his MRI does not show any tumor recurrence, we need to pause to consider this very weighted question and how it will shape Henry's future as well as that of our entire family.

Thursday, May 8, 2008

Late Return

It's late and we've just arrived at home again from Hopkins after Henry's MRI. His scan remains unchanged from previous scans which is good news. There has been no progression. There remains an abnormality for which no one has an explanation.

We spoke with the radiation oncologist today as well which was the difficult conversation we've been putting off since the beginning. I'm not sure I even understand the options we have at this point, so I'll sleep on that to let it sink in a bit.

Henry was great today. He had only minor complaints about not being able to eat. He played happily on the floor during our early radiation consultation and after a while fell asleep on Tara's lap. He played with another child while at The Children's House and then we headed over for the MRI. They took us in quickly albeit for a long scan. He is such a little champion. We've very proud of his handling of what could have otherwise been a really rough day.

Saturday, May 3, 2008

Almost Normal

The days since we've returned from Baltimore have been filled with adjustments. We have moved all of our things back from St. Casimir's. While we were happy to leave, there was some nostalgia regarding the time we spent there. My mother has shouldered the burden of maintaining our home life and we have begun to assume those responsibilities again. The girls are acclimating to having their parents back more or less full time. We are in full swing with soccer season, spring school activities and the ever-present yard work.

All of these purport a normal life. Things look like they're returning to their regularly occurring patterns. About the time we're feeling comfortable, there's a splinter in my brain about Henry's cancer. Sometimes it's noticing again that he still has no hair. A lot of times it's watching him playing juxtaposed against other neighborhood children or reviewing pre-diagnosis photos and movies of him at his 3rd birthday or just goofing around running, more steadily than he does now, in the back yard.

I'm grateful for where we stand now in the midst of this storm. The doctors have made it clear that Henry has successfully avoided many of the complications that occur during treatment. It's tempting to consider it complete, that we're through messing with this beast. Henry's chances have improved dramatically, but we've met too many families with recurrences to think that we're done. But our normal life habits are so comforting right now that it's nice to pretend for a while.

So we'll deal with the behavioral issues that catering to a three year old for six months have brought about. He's adjusting quicker that any of us expected. There are major tantrums but they're occurring less and less frequently. My mother returns home to Kansas next Tuesday when we'll also have a clinic appointment, fortunately both in Baltimore. We heard yesterday that Henry's follow up MRI will be next Thursday. It's not until late in the day and he won't be able to eat. It will be a challenging time, but nothing we've not done before. The hard part will be waiting for, and dealing with the results.