The SAP test results are in!

The SAP gene sequencing came back normal! This means we can not find a genetic reason for Oliver's HLH to be genetic and therefore can not say he needs a transplant!!! The next test will be weaning him off the chemo. If his HLH is genetic all of his HLH labs will show counts elevating tremendously-if it's not genetic he will finish weaning off chemo and be completely done and CURED! 

Re admitted :(

It was a good five days while it lasted, but we are back in the hospital again. Little Oliver started getting fussy with his meds a couple days ago and then throwing them up. He'd been acting like his tummy hurt, we thought maybe he was just a little gassy, but it turns out that he had some bowel gases leak through his bowel wall into his abdomen. It's very common for this to happen especially in NICU babies who's digestive systems aren't mature enough to handle eating food. We suspected that the fortification we've been adding to my breastmilk may have irritated his bowels causing a weak spot where gas could leak out. The treatment for this is a week on antibiotics and bowel rest, which means Oliver won't be eating actual food for a week but rather receiving his nutrition through his PICC line. When we brought him in he had a low fever and you could tell he wasn't feeling well. He slept most of the day yesterday, but woke up happy this morning I'll smiles and even laughing at being tickled! He is a trooper, that's for sure!! We will likely be in the hospital a week or two and if nothing else happens be discharged again. He will not be getting his chemo this week because of their irritated spot in his bowels, so I'm sure his doctors will be watching his HLH labs closely. 

Flash back

I feel as though I'm having flashbacks to the beginning days when we were waiting for test results. It seems there is one more genetic test that hasn't been done, and will weight things very heavily in either the transplant or non transplant department. We are hoping to have that test back this week or the beginning of next. In the meantime Oliver still is thriving, he's doing so well and always keeps us smiling! Keep us in your thoughts and prayers-more to come. :)

A bump in the road

There are just a few genes that have been linked to HLH and so far all of the ones we've tested have come back normal...until yesterday. We did a preliminary test for SAP and the results prompted a more specific gene sequencing test. The preliminary test is NOT saying he has the mutated gene, but it does suggest it-so last night we drew blood to send to the lab. If the SAP comes back positive we are almost certainly looking at transplant. If it comes back negative we are in the same 'wait-and-watch' boat we are currently in. Oliver's positive trends in his HLH levels and blood counts gives me hope that he can still get through this without going to transplant...as I write this Oliver is sleeping next to me. He is the calmest, most relaxed baby. He sleeps peacefully through the night and when he wakes he is all smiles! His little noises are soft and subtle and his eyes are inquisitive. He rarely complains even though he has plenty to complain about. Yes, we hit the baby jackpot! 

Another record...BROKEN!

Oliver broke yesterday's record with 126,000 platelets today! He is stable and doing so good that the doctors have decided to start weaning his chemo. This means he doesn't have any chemotherapy or steroids for two weeks. We are very excited to get such a break from all the medication, and at the same time nervous because this is the true test of whether or not he will need a bone marrow transplant. If his disease is genetic it will flare up with the lack of chemo treatment, if it was infectious, it should be cured and all of his numbers should stay in the normal range. As of right now the only reason he still has to be in the hospital is because he is on the high flow to help him breathe. We can't go home with high flow, and the only thing stopping him from breathing is his liver taking up all the room in his belly! He's doing well and we are so pleased!!! Thank you everyone for keeping us, and especially little Oliver in your thoughts and prayers!