Post-chemo update

Dear friends,

Round three of Harry's chemotherapy has thankfully passed uneventfully and we are now back at home.

We were admitted to the hospital last Friday afternoon, after Harry's clinic visit. We arrived at the clinic both very nervous to find out the results of Harry's CT scan and excited at the same time. Given how good he looks and how strong he is we felt positive that the CT scan would be good news; the question was just how good.

One of the nurses gave us a sneak preview of the scan results when we were going to have Harry weighed. She told us with a twinkle in her eye and a smile, "There is a copy of the CT scan report for you to have framed in the examination room." We both nearly wept with joy. This only increased our excitement to hear the actual results.

As Kathleen has previously reported, the CT scan results were excellent! In the words of Harry's oncologist, "better than his best possible expectations." As my friend Jodi reminded me, we were originally told that the goal for the first two rounds of chemotherapy was to simply stop the tumours from growing. Harry has far exceeded that expectation.

In summary, "the chemotherapy is working very well!" The tumours in the lungs and lymph nodes are all fewer in number and smaller in size. No tumours were seen on the kidneys or bladder. The liver tumours are smaller as well. Quoting from the CT scan report:

"There has been a definite reduction in the number and size of pulmonary nodules when compared to the previous examination ... pulmonary nodules are fewer in number and smaller in size." And, "There has been a reduction in size of the liver and overall reduction in size of tumour mass within the liver parenchyma when compared with the previous examination. ... There has been a definite decrease in the overall tumour volume within the liver ... There has been a definitive response to the patient's chemotherapy."

Harry's oncologist is hopeful that, if the tumours keep responding well to the chemotherapy, we will be able to consider surgery to remove the remaining tumour mass after 4 to 6 (more likely 6) complete rounds of chemotherapy (i.e. 1 to 3 more rounds till we hope to be able to do surgery).

Being optimistic, we prefer to say and pray that "the tumours keep shrinking away quickly, the chemotherapy keeps working its magic, and Harry is ready for surgery after four rounds of chemotherapy." Hey, Harry has already far exceeded their expectations; we see no reason why he can't just keep on exceeding their expectations!

Before the doctors will consider surgery, the lungs and lymph nodes need to be clear of tumours and the liver tumours need to be shrunk sufficiently to be able to operate. The best case for surgery will be that the remaining tumours are 'resectable,' meaning they can remove the tumour mass and leave Harry with enough of his own healthy liver for it to regenerate on its own. The other scenario is that they will have to completely remove his liver and he will need a transplant. We will cross that bridge when we come to it. Right now, we are focusing all our energy on praying that the chemotherapy keeps working so well and keeps shrinking the tumours.

We were admitted back onto the CK5 ward mid-afternoon and Harry began his chemotherapy at 7:00 pm (he needed six hours of IV fluids before they could start). We were lucky, we got a double room to ourselves. We quickly settled in by decorating "Harry's (new) Room of Healing and Laughter." I (Cynthia) spent Friday night at the hospital with Harry. It was a bit of an unsettled night. His chemo ran until midnight and I think because of the transition back to the hospital he didn't sleep as well as he had been at home.

Henry and Lydia came up for a visit late Saturday afternoon. Harry, as if just to impress the nurses and prove chemo wasn't going to stop him, walked around the ward pushing a wee cart. This is the furthest he has ever walked! Henry spent Saturday night at the hospital.

Harry had a bit of nausea from Saturday to Monday, likely a reaction to the carboplatin drug, which is the most potent of the three drugs he received this round. But other than that he seemed unfazed by the chemotherapy and he was his usual cheery, happy and bouncy self! All of the nurses commented on how great he now looks and everyone peeked into the room just to see him smile and play a round of peek-a-boo.

The five days of chemotherapy passed quickly and we were discharged on Wednesday at noon, 18 hours after his last dose ended. Harry needs 18 hours of IV fluid after the last dose to flush his system of the drugs. So we were back home by late afternoon on Wednesday.

Thank you to our wonderful community of support for the nourishing meals that sustain us through our hospital visits and in between, and a special thanks to Toni for her amazing homemade granola bars (which got us through day one of chemo) (yeah, they only lasted one day again!) and to Jen Pineau for her delicious 'brown bag of baked goodies,' which really made our hospital stay bearable this time around!

Phew. Round three is done. Now we head to the clinic tomorrow (Friday) to see how his blood counts are doing.

Overall, Harry is just amazing. His energy is incredible. We keep shaking our heads and asking each other: "He just went through five days of chemo right?" He is chasing his sister around the house and dancing to rave music with his Daddy already.

This morning another first: Harry had his first bowl of infant oatmeal in 2 months. That is one of our next goals, to try to get him back to eating solid food.

The road back to full health for Harry is still very long. I feel overjoyed to have come so far in such a short time. Yet at the same time, I had to pull myself back from feeling overwhelmed with fear at how far we still have to go. A little part of me felt let down by the CT scan results; I have to admit a wee part of me had hoped they would tell us, "Wow, look at that, the cancer is all gone." I know I just have to be patient to wait for our miracle to unfold.

Please know just how much all of your love and support continues to sustain us through this journey!

Peace and blessings,

Cynthia