Sunday, September 21, 2014

Oh Happy Day!

I haven't even started typing and I already have tears streaming down my face. Oliver has not had chemo for 2 months and his counts are stable. HIS COUNTS ARE STABLE! I know I haven't posted for a while, so let me back up a bit...When Oliver was diagnosed with HLH we knew the chance of him needing a bone marrow transplant to live was over 99%. When the chemo beat his immune system down to nothing Oliver's medical team scheduled a transplant meeting to answer our questions and tell us what to expect during and after transplant. At this point there was no scientific proof that he needed a whole new immune system. In retrospect I think it was foolish but Sean and I decided we would not transplant unless we knew for SURE, without a doubt that Oliver needed it to survive. Some of Oliver's doctors couldn't believe we would take such a risk and others supported us-and here we are! Oliver has a lab draw on Tuesday and if his counts are still good they are removing his PICC line. This means we will be free to go home! (I'm totally crying again!) He's been weaning off his meds and should be off everything by the end of October. We have some serious work to do before he can get rid of the feeding tube, but I'm up to the challenge. :)  Oliver will still need to be monitored closely with blood work and special attention if he gets a fever-but they said the word home...HOME!

So our newest problem is no longer medical-and I'm unbelievably happy to have this kind of problem-we gave up our house and our jobs to be here with Oliver over the last 8 months. We don't have a 'home' to go back to. I lowered our goal fundraising amount to reflect what I think we need to get on our feet. If you have anything extra to give we could really use it...OLIVER DID IT!

Wednesday, August 13, 2014

Oh what a day!

 For those of you curious about the rash it is most likely from the lovenox injections. It appears to be getting better and I have a list I symptoms that require a phone call/visit. But the rash update is not my biggest news. Oliver's labs are continuing to look stable and everything is trending in the right direction. He only has one more chemo infusion scheduled and he may not even get it! Tears roll down my face writing that! He did it!!! Many of you don't know the odds of Oliver not needing a bone marrow transplant in his situation. 1 in 1.2 million people are diagnosed with HLH, of those only 2% (that's 2% of 1 in 1.2 million) under 6 months old at diagnosis are infectious. We don't know for SURE that he's done and cured, but it's certainly looking that way! I am THRiLLeD that we didn't transplant when it was recommended! Sean's birthday is next weekend and we got permission to take Oliver camping for one night (as long as we're within an hour of the hospital *crying again*) I have to admit I'm a little nervous about going out into the world and making our own way...Sean and I gave up everything to be here with Oliver the last 6 months. We don't have a house or jobs to go back to-and the bigger problem is we still don't have a car! A couple people donated towards our car already and we have managed to keep that money aside but we need to add to it! Please, if you have anything extra to give, we could really use help getting our lives back together. I hate to ask after all the generosity we've been shown-I just don't know how we would have done any of this without you!! Thank you!!!!!

Wednesday, June 25, 2014

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. 

Tuesday, June 10, 2014

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. :)

Tuesday, June 3, 2014

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 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! 

Sunday, June 1, 2014

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!