Sunday morning snuggles.

Helping his sister push the cart.

Somebody scooted over to get a better look in the fridge.

Hi all – It’s been two weeks since we’ve written, last time we were entering into the new cycle and concerned about what it would bring. Last Monday Sally had her intrathecal chemo, the one where they inject it directly into her spine. This is because chemo can’t get into the spine any other way, and relapses often occur there. A bone marrow sample was taken to confirm that Sally is still in remission, which always brings nerves to Nicole and I, especially this time due to our rough previous cycle. We’ve learned from other parents that relapses often come out of the blue, even when blood counts look normal. Another fear we have to continue to live with. We won’t get the results for another week or two.

We also began Sally’s oral chemo at home last Monday, which she received daily through Thursday. The Leukemia Team reduced the amount from two pills to crush (which landed her in the hospital last cycle) to one daily in order to give her body a “break”.  She was doing fine until Thursday when she began vomiting, which continued through Friday. She was able to hold in a minimal amount of fluids over the weekend and into this week so avoided a trip to the hospital. Here’s some video of Sally saying “uh-oh” if you’ve never heard her speak – click here.

Uncle Jeff was in from London for a visit.

Thomas asked if he could have a turn giving Sally her meds, so we let him give her some anti-nausea and flush the line after.

Although Sally was keeping fluids down during the week, she was very sleepy which usually signals her counts being low. Sure enough yesterday, a blood check while receiving treatment confirmed that her white blood cells and neutrophils were bottomed out. Her platelets were also bottomed out, so required an unexpected transfusion of them. We were worried about some redness around her feeding tube the last two days, fearing infection which her body wouldn’t be able to fight without an immune system right now. We also didn’t want to have to give her an antibiotic, which would wreak havoc on her digestive system again. Luckily it improved some overnight, but are continuing to keep an eye on it. Nicole took Sally in today to have her blood checked, luckily her platelets went up so we hopefully won’t end up at the hospital this weekend, especially with Thomas’ first communion tomorrow which he’s been so much looking forward to.

Yesterday we started Hell Week 1, steroid week. Nicole proclaimed “one dose down, twenty to go!” as we readied the boys for school. Sally was already growing moody yesterday which continued today. We hate the effects the steroids have on her, and can’t wait to get through the week. Unfortunately Hell Week 1 this cycle falls on the busiest work week of the year for me. I’ve been working later hours recently which culminates with a trip to Boston from Monday to Wednesday for some events. Although Nicole plans to have friends stay here, she won’t have much of a break with Sally demanding so much attention. That combined with the new cycle has caused additional stress for us, and are looking forward to the week’s end when steroids and the busy week are over.

With May upon us, I couldn’t help but think that a year ago this month was our last normal month before Sally’s cancer first entered our lives. We got to take our last family vacation to Buffalo so our family up there could meet Sally and I could run the Buffalo Marathon.  We also got to stay with friends in Ithaca, something we really love doing. It was such a fun weekend, also Nicole’s birthday. It’s hard to imagine that we’re close to being at this for a year with more than that to go, and those kinds of trips can’t happen again til we get through this. Just looking back at the photos from that weekend brought out emotions in us, knowing the difficult journey that would lie ahead for those smiling faces.

Cheering Daddy on in Buffalo a year ago.

Wish us luck on this long week ahead. Please keep Sally in your thoughts and prayers.

Matt