Thanks and Praises

So we've gone dark for long enough, wouldn't you say? We would apologize, but for the first time I guess you could say we got a little selfish and decided to take advantage of the gift of the most normal months of our lives together. It's easy to get lost in the beauty and simplicity of a healthy family situation, away from the hospital and immersed in the glory of the all-American family experience.

For those of you not in regular contact with us, the good (actually fantastic) news is that Jacob's past six months have been the best of his life (and ours). Not only did the treatments succeed in subsiding Jacob's LCH, but Jacob has also (with the wonderful help of early intervention services) caught back up with his age level in terms of physical activity and speech development. As you can imagine, all that time living in the hospital was the worst possible scenario for a child who should be out experiencing the world, sharing fun times with other kids, and learning from their diverse environment. Jacob was cut off from all of the above, until the amazing work of our doctors, nurses and therapists got him back on track.

Last we reached out to all of you beautiful friends, family and supporters we met along the way, Jacob was still receiving 2CDA chemo treatments. That phase completed before the spring, when Jacob started a daily regimen of oral chemo, and bi-weekly steroid "pulses" (5 days on, 9 days off). He had surgery to switch his Broviac to an internal port, which has given him a lot more freedom and mobility, without the stress of the long external tubes and increased risk of infection.

Since the spring, his medications have included the following:

Vinblastine - Bi-weekly IV Chemo necessary for LCH treatment.
6MP (Mercaptopurine) - Daily oral chemotherapy
Methotrexate - weekly oral chemotherapy
Prednisone - bi-weekly steroids
VFEND (Voriconazole) - daily anti-fungal antibiotoics
Bactrim - 3x/wk antibiotics for possible infections from his IV port
Pepcid - to taper digestive discomfort from steroids

Looking at it on paper it's hard to believe that this regimen is part of a life we consider normal, but the short of it is that the meds are working well, and very soon we'll be able to cut this list in half. In just a few hours, we head to the clinic for (pending qualifying bloodwork) what will be Jacob's final IV chemo treatment. It's been a long road, and it seems every brutal step has been more than worth it. Upon completion of this phase, we switch from bi-weekly clinic visits to once a month for the next year. Daily 6MP will continue for that year, as well as weekly Methotrexate. However, with the completion of the IV chemo treatments we can cross off Vinblastine, Pepcid and Prednisone from the list. We will also then schedule surgery to remove both his G Tube and IV port. We haven't needed to feed Jacob through the G tube overnight in months (he's eating like a champ!). With the removal of the IV port, we can also cross off Bactrim and VFEND. With just the two oral chemos left for the next year, we're only concerned about getting the meds down easily. Jacob has been so good with getting the oral meds down, but we've always injected the oral chemos through his G Tube while he's sleeping. We're stressing a bit about getting the 6MP and Methotrexate down through his mouth. We've contacted compounding pharmacies about mixing the meds into tasty (relatively anyway) syrups, but we might even just try some different flavored syrups without exploring that option. Jacob surprised us by loving the oral Prednisone, so maybe there's hope that getting these pills down won't be an issue either. We'll make it work...

This evening we are meeting with the Make A Wish Foundation. Jacob's doctors recommended him to the program, and we look forward to exploring that opportunity. We're hoping that his gift will be something that can lend towards his further physical development. We're honored to be part of their amazing organization, and we're excited for Jacob to be part of their story.

Jacob's CT Scan from the spring was excellent, and all of his organs have been functioning normally. Because of his improvement, he was medically cleared to start school, which he did in September. He goes from 9:00 to 4:00 every weekday, and really likes it. At first he cried a lot when we dropped him off, but he adapted quickly and within a week he wasn't sad anymore when we left him.

So here we are...the journey continues but we've had the amazing fortune of hitting all of our medical goals along the way. It's odd to have something as strange as LCH in our lives, as we really don't know if we will encounter it again, whether right after treatment stops, or sometime later in life. We've been told that it's a "dumb" disease, in that it will respond to treatment even if it comes back. For now we can't be bothered with hypotheticals. Life is way too short, even when Jacob has so much of it ahead of him. For now we can only offer thanks and praises for the collective energy, strength, focus and Love that you have sent our way along this tumultuous and emotional journey.

We will keep you posted on our progress. Many, many thanks and Much Love to you all...