Quiet

It has been a quiet few weeks in Nash-land. So quiet, that sometimes I forget about this big scare we had just a few weeks ago; other times, I am aware but it seems like it was a long, long time ago.

After my last post, Nash went to see a pediatric dermatologist. She gave us some topical medication for Nash's skin rashes, which cleared them up pretty quickly except for the skin behind his ears. That area tested positive for strep, so Nash took an antibiotic for a few days, which did the trick. We don't really know if these rashes were LCH or not (I think they were not), but I don't think that it matters very much either way.

We've had a few weeks since then of normal baby routine, without any doctor's appointments. Yesterday, Chelsi took Nash to the oncologist for bloodwork, and the results, again, were very good. The next appointment for bloodwork will be in about a month. In the meantime, I probably won't be posting very much. I'll try to put up some pictures in a few days, but otherwise the blog will probably be dormant until the next appointment.

We're thrilled. I'm pretty tired right now, so my joy may not be terribly evident. But we are really, really glad that we keep receiving good news about Nash. Thanks again for checking in on us.

More Good News

We received more good news from Nash's appointment this week. His liver numbers dropped again, meaning that we are likely looking at a healthy liver.

What I identified as "baby acne" in a previous post, upon further investigation by wife, looks more like an infant version of seborrheic dermatitis (not really a big deal). LCH, in the skin, sometimes looks like...seborrheic dermatitis. So we might have additional skin involvement. Or maybe not. We will probably go see a pediatric dermatologist next week to check it out.

Of course we hope that the skin issue is unrelated to LCH, but as far as diagnoses go this would still be very, very tame on the LCH spectrum. Might resolve on its own, or require a steriod-like treatment.

That's it for now. I'm still thankful for boring posts.

So...what's next? We'll see the oncologist again early next week for more labwork and a physical examination. The spot on Nash's face continues to look better and he remains symptom-free. Nash's GGT, the liver enzyme that has been abnormally high, came down dramatically on Friday; however, even after the decline it is still a high figure and because it is not uncommon for this disease to pop up in the liver (or elsewhere), the GGT will be monitored carefully along with other lab values for about a year.

We'll probably be looking at semi-monthly appointments with the oncologist in the near-term, which may space out to monthly appointments after a while if things are on the up and up. We won't really know that Nash has the skin-only, benign version of LCH until he's probably a year old.

Nash's oncologist has been in a really difficult position; he is dealing with a incredibly rare disease, and Nash's labwork has not been straightforward. At one point, based upon the recommendation of someone with more experience with this disease, the doctor was going to start Nash on chemotherapy. We are so glad that he took a more conservative approach. I know that many of you have been praying for Nash's caregivers and we are so full of gratitude for that. Your prayers have been evident in the wisdom and care exercised by Nash's team. 

There may not be any posts until next week (when we see the doctor). My hope is that this becomes the most boring blog in the world. I might have to start writing about fantasy football or politics to keep readership up. Love to all.

Good News

Nash's labs came back great! His GGT dropped significantly; I'll write more about this later, but for now just know that we are not going to biopsy his liver on Monday and we are thrilled. Not out of the woods altogether, but this is really good news. Thank you for your care, concern, and prayer.

Blood Test

Chelsi's on the way to the doctor this morning with Nash. We're doing blood tests one more time before the biopsy; if the results improve, then we might defer the biopsy. Praying for good results.

We saw the oncologist again today. Nash's liver enzymes (GGT) are trending upward, albeit slowly. This is not the result we were hoping for today, but it does not mean that Nash necessarily has liver disease.

The doctor has scheduled a liver biopsy for next Monday, 8/15. I previously wrote that this test should be conclusive, but that is not the case. There is a significant chance that the biopsy will not be helpful. So Monday we might have more information, but perhaps not. For now we wait.

I'd like to take this opportunity to tell everyone a little bit about Nash. He has a voracious appetite -- he's breastfeeding every 3 hours (at times even more frequently) and we're often having to top him off with formula. He has developed a wicked case of baby acne. I learned today that his cousins named one of their seamonkeys "Nash," which I thought was pretty sweet. Cade and Shay (big brother and sister) are quite fond of the little guy and often hover over him and ask if they can touch him. Mommy, of course, knows best how to calm him down when he wails.

Photos

Status Update

Thank you for checking out the blog. This seems like the best way to keep everyone up to speed with Nash.

Here's a quick recap:

• Nash was born on 7/14 at Cedar Park Regional Medical Center. He weighed 7lb 2oz and his vital signs were great. The nurses immediately took note of a small spot on Nash's face (like an ulcer or a lesion); the pediatrician did not know what to think about it so she took some photos and sent them over to the NICU at Dell Children's Hospital in Austin. The neonatologist at Dell didn't know what it was either, and had Nash sent over to Dell that night.
• A biopsy of Nash's skin on 7/15 revealed that Nash has Langerhans cell Hystiocytosis (LCH). LCH is rare and not very well understood. Certain cells in the immune system are multiplying and forming lesions or masses. Sometimes it is isolated to one system (skin, bones, liver, spleen, etc.). Sometimes it is present in multiple systems. It goes away on its own in some cases; often, treatment is necessary.
• Nash was released from the NICU on 7/19 after a skeletal survey, abdominal ultrasound, and perhaps other tests that I don't recall did not detect LCH anywhere else in Nash's body.
• We followed up with Nash's specialist, a pediatric hematologist/oncologist, on 7/28. The plan at that time was to watch the spot on Nash's face; as long as it did not grow or present in another part of Nash's skin (or elsewhere in his body), we were going to just wait and see if the disease would resolve on its own, which is fairly common with skin-only LCH in infants. 
• On 7/29, the oncologist called to tell us that Nash's bloodwork revealed an abnormally high figure for one of his liver enzymes, which he thought to be sufficient evidence that the disease is present in Nash's liver. He sent us back to Dell to repeat the bloodwork, run an MRI, and insert a long-term IV catheter in order to administer treatment (a low-grade chemotherapy).
• The doctor decided on 7/31 that, upon further reflection, he did not want to begin treatment immediately. There could be other explanations for the results of Nash's bloodwork, and the enzymes were not too far outside of the range of normal counts, so for now we are going to wait and repeat the bloodwork in a week. Nash's MRI (performed on 8/1) was normal -- no visible evidence of liver disease.

So here we are. Nash is home and we are enjoying him to the fullest. He will see the doctor on Monday (8/8) for bloodwork; if his numbers get worse, the doctor will send us back to Dell for a liver biopsy, which should be (I think) conclusive of LCH involvement. Liver disease would move Nash far across the spectrum, from "low-risk" single-system LCH, to "high-risk" multi-system LCH.

We are praying for Nash and invite you to join us. We pray that he does not have liver disease, and that if he does have liver disease, that he would respond to treatment and be healed. Please pray that Chelsi and I would continue to trust God in all circumstances.

If you are reading this, it's probably because you know us, or you know somebody who knows us. In any event, Chelsi and I are thankful for you and appreciate your concern for our baby.