Finding the Needle in the Haystack

Wow - yesterday was a long day at Hopkins for not having more to do than we did. A couple of our tests have even been postponed until next week. All that we had to do yesterday was get Henry's hearing test and a special treat that had been arranged for us.

That special treat was a photo shoot done by Flashes of Hope, an organization that provides photography for children with cancer. They provide the photo shoot and all the proofs to the family at no cost. I didn't really know what to think of it at first, but as with all things, I came to find out that the people doing this really had their hearts in it and once I saw some of the sample photos, I realized what a valuable gift this would be. Henry did great with the photos and they had me sit in on a couple of them with him too. It was very touching. He ate up all the attention they were giving him. There were clowns there to entertain those waiting and to draw smiles out of the children being photographed. Henry really pushed the clowns to their limits, "Daddy, ask the clowns if they have any more cricks". We'll share the photos once we receive them, about 4-6 weeks.

We grabbed some lunch at the cafeteria and headed over to Henry's hearing test. It seems he's lost a little more hearing, one more pitch, the audiologist told us. Apparently the drug can continue to affect hearing for up to 180 days after the treatment. The dosing to come is what is worrisome, but we'll deal with that as it comes. This news came alongside some other good news, all the tests that Henry had Tuesday came back negative - meaning that no sign of the cancer was present in his spinal fluid or in his bone marrow. His EKG and echo were normal as well. So far so good. We're still scheduled for continued high dose chemotherapy because these tests, while good results, are not fully conclusive as they're samples. We keep reminding ourselves that Henry's type of medulloblastoma is anaplastic, a very aggressive subtype. All that it takes is one cancer cell to persist and we'll have major setbacks. Talk about a needle in a haystack.

After our audiology test we had to revisit the clinic to pick up some paperwork. We had applied for a weekend away sponsored by the "Believe in Tomorrow" organization, the same organization that hosted us across the street from the hospital during our initial diagnosis and surgery. The forms are required to be signed by the doctors to confirm eligibility. This is the most ominous form I've ever seen, although we're seeing more of the same kind, with check boxes like

Is the child's disease

• life threatening
• life long
• in maintenance

Seeing 'life-threatening' checked made me realize the kind of denial that we live in. It shouldn't have shocked me to see it, but it did.

Anyway, before Henry and I left the building, the wonderful social worker chased us down and announced that we had a house at the beach for the weekend. So today we're stealing the kids from school early and will take off for Ocean City. It will be a nice quiet weekend away before starting this second phase of chemotherapy, a retreat of sorts to let the kids be kids before we ask the girls to shoulder the burden of being shuffled around for the months ahead and Henry to endure his treatments.

Happy Easter

It's Easter weekend and we're all at home. We've eked out an extra night from our doctors so we won't have to return until Monday sometime.

The oncologist called with the results of Henry's tests. His CT of his sinuses looks better than the last one indicating an improvement due to the medicines he's been taking for his sinusitis. His chest x-ray was clean and the placement of his catheter is fine. His MRI remained unchanged. There remain some abnormalities which our doctor said he would like to be able to tell us were gone at this point. They may indicate inflammation due to chemotherapy but we must treat them as if they are cancer cells. No one at this point can tell us what they are - there is just not enough information to tell. We've become comfortable with some uncertainty, but this MRI, although we expected to be the same, took us a little aback with the vagueness of it's results. The upshot is that basically the doctors hoped that the 'abnormalities' would have cleared up by now. We're slowly coming to realize that this is just going to be a waiting game for a long time to come.

Recently we received back our photos from the Flashes of Hope photography session we participated in back in early February. We're pleased to have them back and at how they turned out.

Henry and Daddy

Hanging Out

The Henry Scowl

Looking Ornery

Our Sweet Boy

Little Man

Standing Proud

Just Us

Sparkle in His Eye

We hope that you all have a blessed and happy Easter.