Another Beginning

Some answers

Since the long afternoon of scans and tests last Thursday, we have been waiting for a more definitive diagnosis of Noah's cancer as well as for more insight into what we might expect for the road ahead.

Until today, nurses and doctors have been mostly focused on keeping Noah pain free and on preparing him for his first treatments. In the last few days he has had a feeding tube placed in his stomach and he has been given supplemental oxygen. The feeding tube is not only helping Noah to get the nutrition he needs but it has also helped him overcome his constipation - big time. The supplemental oxygen is helping to compensate for Noah's lung which, because of the pressure put on it by the tumor in his back, is surrounded by fluid. Both the feeding tube and the oxygen line really bothered Noah at first but he seems to be adjusting. He is a tough little guy.

Beyond a prognosis into Noah's condition, we have also been waiting to learn about what kind of treatments to expect for him and to know how long these treatments might last. Today we received some more concrete information.

Intense and prolonged

As the oncologist initially suspected, the cancer in Noah's body has been identified as neuroblastoma. It is a cancer that affects growing nerve cells, primarily in very young children. Often, it is identified incidentally in utero through prenatal ultrasounds. It is usually not found in three-year-olds until it has progressed enough to cause pain and, sometimes, paralysis.

What we know about the cancer in Noah's body is that there is a lot of it in a lot of places. This is because this type of cancer is particularly aggressive. Aside from the larger mass on Noah's spine, there are smaller tumors up and down his spine, on his hips and on his skull. It could be in more places but there was no imagery taken yet that can confirm this.

Though some of the cancer cells, specifically in the masses, are benign, there are also particularly malignant, immature cancer cells which are primarily in Noah's bone marrow.

All of this adds up to the necessity for an aggressive response.

This treatment will begin with chemotherapy. He is going to be taking a pair of chemotherapy drugs for five days and then given time to recover. Along with the chemotherapy, he will receive anti-nausea medication and other drugs that will help to boost his immunity while the chemo does its wrecking work. He will have five chemo cycles, each lasting about a month, and in between the fourth and fifth round he will undergo surgery to have the largest mass removed from his body. This will add another month.

If all goes well with chemotherapy, Noah will take a trip to Toronto Sick Kids for bone marrow transplants. Bone marrow will be taken from Noah's hips and frozen. He will then be given an intense round of chemotherapy after which he will be given back his own bone marrow. I know - not really a transplant. The doctors will do this twice and each round/transplant will take a month or so.

After the bone marrow transplants, Noah will undergo radiation therapy. This will focus on the site of the large mass and of any other remaining mass in his body.

Finally, Noah will undergo a total of six rounds of immunotherapy. Honestly, I'm not sure what this will all entail. I kind of felt overwhelmed by information at this point in the conversation with the oncologist. I'm sure I'll know more than I ever wanted to know about it all when the time comes and I'll be sure to share.

All total, and if all goes well, the treatments for this cancer will take a year and a half to complete.

Intense and prolonged.

Just Fear

Only an hour after the diagnosis of Noah's cancer was given to us, the first chemo therapy treatment was administered. The medicine on which his future now depends is inside his body and it is beginning to play its role in writing the next pages of Noah's story.

But here's more of Noah's story. Two days ago, after being so pissed off about having a feeding tube shoved up his nose that he screamed every nurse out of his hospital room, he up and decided that he would rather not be pissed off so that he could play foam football catch with his daddy. And, just because he is Noah, he threw short when I moved back and threw long when I moved up so that I had to actually work. Because that is how Noah does.

Noah is not giving up on life yet.

One way we could live into this news is to prepare for the worst. We could try to accept what could happen as if it might be better for us to live in a posture of resignation. To hope that Noah does not endure much pain rather than to face some devastating disappointment later on.

This posture might help to ameliorate our fears about Noah's uncertain future by preparing us for the worst.

But why would we want to avoid fear?

The night before Jesus went to the cross, he begged his father to take away the burden he was about to bear. Knowing that he was about to walk down a road of pain and humiliation and suffering, he cried out for an alternative, knowing there would be no way out but through death. His sweat was like drops of blood. That is fear. And yet, he walked down that road for us and for little Noah.

So we choose hope for Noah, even if it comes with the fear that is always on the flipside of real hope. We can make that sacrifice for a little boy, even if it is costs us more than we can bear on our own.