6 Month Follow-ups

Two Fridays ago, W and I headed up to St. Louis for two follow-up appointments with his specialists at Children's. First we saw his Hematologist and there were two big topics of discussion--Neupogen dosing and baby #2's cord blood. W's doctor received dosing information from the Severe Chronic Neutropenia International Registry for Neupogen that differed from her dosing. She's waiting on the literature/studies that based their decisions but she basically told us that we have two options when it comes to dosing W's Neupogen: 1) current dose that's given on MWF (her suggestion), or 2) smaller dose given every day of the week (SCNIR's suggestion). I found some Neupogen curves online that demonstrate the difference in dosing and how it affects ANC counts, risk of infection, and bone pain. Although the MWF dose is currently working, I can see the benefits for giving Neupogen daily. However, that's 7 pokes for W in one week, rather than 3. Any advice from other SDS-ers? 


The second topic of discussion with W's Hematologist was the various possibilities since I'm expecting baby #2. Like any genetic disorder, the likelihood of baby #2 having SDS is 25%. So, leaving a 75% chance that the baby will not be affected by SDS, we want to save the cord blood for Wade, IF he were to ever need a bone marrow/stem cell transplant and IF baby #2 has the same HLA match for Wade. Once again, a 25% chance exists that baby #2 would have the same HLA as Wade, making it a good match for W to receive the cord blood if needed. I asked the doctor about a cord blood registry that she knew of that banked cord blood privately for a sibling donor. She told me about the St. Louis Cord Blood Registry, a public bank. Although this is a public cord blood bank, they also do what is called a directed donation, meaning that the cord blood from baby #2 will be saved in our family's name only. They are no time constraints on storing the cord blood and no fees in collecting or storing the cord blood. The only time fees would come into play would be if we get the cord blood out specifically for Wade. However, if baby #2 is not an HLA match with Wade or if Wade were to not need a transplant, we can always donate the cord blood back into the "public" part of the bank to be used by anyone else who may need it.


After Hematology, we saw W's GI doctor. I had some questions regarding W's lack of weight gain  in the last six months (total gain of 6 oz in six months = not good enough). We are still waiting for a food log analysis from W's dietitian, but I can already bet that W's pancreatic enzyme dosing needs to be increased. I believe he's eating more than what the enzymes can digest, resulting in loose stools and no weight gain. His current dose is 1 capsule for solid food and 2 capsules for a bottle of Pediasure. The GI doctor also thinks that W's enzyme dose needs to be increased, but he would first like to see the food log analysis. Because I'm me, I asked the question, "What if increasing his enzymes still won't help him gain weight?" and his reply was, "Well, if that's the case after optimizing his enzyme dose, then I would refer you to endocrinology, because we would have exhausted the possibilities on the GI and metabolic side of things." So, that's still a possibility if increasing enzymes still won't help W gain weight. SDS-ers: Is this common to have an Endo specialist? What is their role with the treatment of SDS?


So, after a morning full of labs, appointments, and questions/answers, my brain is now overflowing with "what if's" and endless possibilities that I have to wait out....and I'm not a very patient person!

I'm Pregnant!

Well, I'll get to the point: We're expecting our second child in January 2013.

Baby #2 at 7 weeks.

Although it is hard to make a decision about having another child after having one SDS child, we decided to rely on the reward outweighing the risk, even though we don't know for sure what God has planned for us. My husband and I always wanted two kids relatively close in age, so we are not letting SDS stop that. 


Obviously there are pros and cons to choosing to have another child with the risk of SDS. We may not be correct in our thinking, but we arrived at this decision together, and that's all that matters.


Pros:

• W will have a sibling
• We will have our family of four
• The baby may be completely healthy (25% chance affected with SDS, 50% chance of baby being a carrier of SDS, and 25% chance of not being a carrier at all)
• The baby may be a match for W someday if he were to need a bone marrow transplant
• If baby does have SDS, then mommy and daddy already understand the disease and it's treatment/outcome
• We are capable of handling whatever God blesses us with. (If God brings you to it, He'll bring you through it.)

Cons:

• Baby #2 may have SDS too (enough said)

Although there is a lot on my mind regarding the worry and "what if's" of Baby #2, I'll save that for another post. Stay tuned...