As for results from today. We have good, bad and no news.
Prior to the biopsy we met with Dr Ron (the hematologist) and he said at this point he is ruling out 'option 1' which was that this was all just a really bad virus. So that left options 2 and 3. To recap, option 2 is that an antibody was passed from Vanessa to Judah and the antibody is attacking Judah's neutrophils. This option would resolve itself over time as his body begins to reject Vanessa's antibodies and begins to develop his own. Option 3 is that he has a blood disease called 'severe congenital neutropenia' which is a disease in which ones body is unable to produce large amounts of neutrophils.
A few hours after the biopsy he came back and met with us to share their thoughts.
After he and the pathologist reviewed the bone marrow they felt we needed a genetics test done on it in order to get an actual official diagnoses. So in regards to an official diagnoses we have no news right now. It will take 2-3 weeks before we get the genetics results back and have an official diagnosis.
However, the hemat and patho Drs did feel like what they were looking at is consistent with 'severe congenital neutropenia' (SCN). Our Dr explained that cells maturate (mature) and the process is this: myeloblast -> promyelocyte -> myelocyte -> metamyelocyte -> band -> neutrophil. When looking at Judah's sampled he has lots of promyelocyte, some myelocyte, very little metamyelocyte and nothing after that. He said if it was option 2 then they would expect Judah to have at least a little bit of cells from each stage. But in his case he doesn't have any at the band or neutrohpil stage which is more consistent with SCN. So that's the bad news. Obviously if his body isn't producing neutrophils (which are the white cells that fight infection) then he is very susceptible to infections.
Thankfully there's good news though. There are options and steps we can take. There is a medicine we are going to start giving him that helps his body create neutrophils. It's a shot he will get 3 times a week. Our Dr said prior to this medicine life expectancy for babies with SCN was 1-2 years. But with this medicine children are living normal lives and making it to adulthood. If this medicine doesn't work, then our next option would be a bone marrow transplant. So thankfully there are things we can try. Until the medicine starts doing it's job we are still homebound and must be very careful about not exposing him to germs, fevers, sickness, etc. Once his levels get normal we can actually let up a bit...as in we can take him to public places, or if he does get a fever we can treat it like we would our other children, from home, rather than spending days in the hospital.
Thank y'all for all the prayers and encouragement and support. It has meant a lot to us. Please keep it coming.
We'd like to add a few things to the prayer requests and list of praises:
Prayer Requests
- he gets his first dose of that medicine tonight. Pray for no reactions to it.
- 1 potential side effect from this medicine is bone pain. Sounds like Tylenol can relieve that, but pray we don't have to deal with that, especially because he's a little baby so it'll be hard to know if he's suffering from it.
- another thing to be on the look out with this med is it could eventually lead to lukemia. Pray for protection from that. Thankfully we will be checking his bone marrow pretty regularly, and so we will be able to monitor it and catch it early enough and stop if we need to.
- above all that this medicine would do it's job and create a high level of neutrophils in Judah so that he can live a normal life.
Praises
- Thankful for our hematologist Dr who prayed with us before the biopsy
- the hematologist will now be Judah's Dr regarding all things, but our pediatrician came by today to be our cheerleader. He actually came just as our hematologist was telling us it's SCN and he was real supportive and before he left had us all hold hands and pray
- a smooth successful biopsy
- that we will only be in the hospital for one night, and we are staying overnight not because of fever but because Judah was put under anesthesia for his biopsy and they want to monitor how he does from the anesthesia
We are thankful for everyone and all the prayers and support and encouragement! More importantly we are thankful that God is in control and that we can rely fully on him!
Continue praying for this little guy!
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