Sally has grown to love her nebulizer treatments.

Cleaning her toys.

Doing her Braveheart impersonation, or as Nicole said, her Kearney impersonation.

Daddy and Mommy have been sick too.

Hi all – tomorrow Sally will begin Cycle 5 of treatment where she will receive her bi-monthly intrathecal dose of chemo into her spine. This is also when they will pull her marrow sample to test and check for relapse, so Nicole and I will be holding our breath for the next 7-10 days. She still has the RSV virus so Sally will need to be put into isolation throughout her visit. She continues to make strides in her development, even going from a crawling to sitting position for the first time! We have video uploaded to Sally’s Facebook page, I’ll try to get it on Youtube so I can share with those who aren’t on there.

The more we go down this path of treatment, the more we learn about what Sally is up against. Just this week, Nicole was reading about another type of cancer when she stumbled upon a description about Mixed Lineage Leukemia. Back when Sally was first diagnosed with ALL Leukemia, a lot of people said “thank god she has that and not the other one – AML Leukemia.” AML is considered much harder to treat. However Sally was also diagnosed with Mixed Lineage Leukemia (or MLL), which when first diagnosed, the doctors pointed out that this made treating Sally more difficult. I don’t think we ever really understood why. What Nicole learned is that MLL means that Sally’s Leukemia shares characteristics of both ALL and AML. It’s found mostly in Infant Leukemia, and in almost every case of it. This is a major reason Infant Leukemia has a roughly 50% survival rate, some stats putting that number even lower. We also learned that there are less than 90 cases similar to Sally diagnosed a year in the United States. Of the roughly 4,000,000 million babies born with Sally in 2012, she’s one of the .0023% that was diagnosed with Infant ALL Leukemia.

We share these facts not for sympathy, but to spread awareness to the true evils of Leukemia and other pediatric cancers. There is a lot of misinformation out there about Leukemia, which paints a prettier picture than the reality of most kids with  various kinds of cancer. If we don’t spread the facts, nothing will get done to correct them. Our doctors don’t volunteer this information as not every parent can handle it. However, they will discuss it with us if we bring it up with them.

Nicole has also learned that if relapse were to occur, of which there are a high percentage of cases like Sally’s that do, we wouldn’t have much time to decide on next steps. Therefore, she is starting to explore what treatment options are out there so that we can be educated on it should we ever need to make that decision. We don’t want to be caught in the position like when this all started and we had to make an uneducated decision with only hours to make it.

I just want to stop there and call attention to what a wonderful mother, nurse and researcher Nicole has been to this point. When I referred to Sally getting breast milk in a Facebook post, somebody commented that they were impressed with Nicole’s ability to still breastfeed through all of this. With Sally receiving almost all nutrition through her feeding tube, the most healthy nutrition we can give her is breast milk. However, this requires Nicole to feed and pump around the clock, including waking up to pump a supply throughout the night. She has not had a good night’s sleep since before Sally was born, and operates on an average of 3-4 hours of sleep a night. Despite this, she does an amazing job being both Sally’s caretaker and mother to our two boys as well. And she has to put up with me…for that you can offer her your sympathy.

Nicole doing PT work with Sally.

So Sally begins the next leg of our journey tomorrow. She will also begin the oral chemo that we have to give her at home this week. Historically, this brings with it nausea so we’ll need to take steps to try and get out in front of it. In the meantime, we’ll be holding our breaths and hoping that the chemo is continuing to work.  We were asked in the comments last week about where to donate money towards research for pediatric cancer. Nicole and I are researching that answer now and will provide you with an organization(s) once we make a decision we’re comfortable with.

We’re charging forward in 2014. Well, most of us. One of our little boys was not happy about the Christmas lights coming down this weekend…

Please keep Sally in your thoughts and prayers.

Matt