Day +80.

Just wanted to update everyone on why we got readmitted. On Friday we had a clinic appointment for Ryan to get an IVIG infusion which essentially gives him a fake immune system because his is currently suppressed. While he was getting the infusion he took a nap all cuddled up and covered in a blanket and got a fever of 38.2 on the temporal thermometer (everything in the hospital is in Celsius) but when they checked his arm pit on the regular thermometer it was 37.8. Anything above 38 they admit you and administer antibiotics immediately.  He got his doses of Meropenem (antibiotic) and they took blood cultures to be sure there wasn't an underlying infection. EBV or mono is carried in the B Cells in the blood which in healthy people can be kept under better control by the T Cells but because of the chemo regimen that Ryan had and that he is on immuno suppressants his body isn't fighting the virus appropriately. His EBV count jumped from 650 to 3,200 from Monday to Wednesday so they had given him Rituximab (which sheds the B Cells) that brought his count down to 990. They are keeping an eye on it but we have lowered his steroid level as well that should help his body to fight the infection more itself. Other than the virus Ryan is in good shape, he is eating like a miniature horse! I was asking today about the possibility of getting a port instead of his Broviac central line and his Oncologist told me that if he keeps up eating like he is and doesn't have any more fevers that we should be able to take it out once we get down to at least one weekly visits!!! So exciting. We are so lucky that he is doing so well, it is not typical for kids with JMML to have such positive outcomes. Well, I finally have a chance to get some uninterrupted sleep so I am going to take it! Have a wonderful week and I will update again as soon as I learn of anything new. 

Day +78.

So we have been readmitted. Ryan had a slight fever and with the EBV they want to play it safe. Hopefully this will only be for the weekend but please think of us over the next few days.

Day +75.

So Ryan now has about 650 copies per mL of EBV (Mono). We will be back in the infusion center for another 7 hours tomorrow to get treatment before this gets out of control. According to my information 500 copies is enough to be positive for mono but it doesn't get dangerous until 50,000. Just another speed bump we will have to laugh at later. When you think positive thoughts for Ryan just think of all of these bad germs leaving his body and having a barrier from any new yucky ones. Thank you all for the support.

Day + 74.

Ryan got platelets today and will be getting a blood transfusion tomorrow. Everything is going well but his counts have dropped some. He is so ready to get out and explore the world. I will update tomorrow if they have any answers for me.

We're on the NEWS!!!

Priority Health: Bone marrow transplant saves boy's life

Day +70

Ryan is FINALLY not Rhinovirus positive. NO MORE COLD!!! Yay. The rest of his results from labs should be in this afternoon, including his EBV results. The amount that was detected before was so minimal they aren't even worried about it. Again, have an excellent weekend everyone!

Day +69

Another great appointment today. His hemoglobin is right on the edge of needing to get a transfusion but we're going to wait out the weekend to get his marrow to start making some more red blood cells. He did have a little bit of EBV (mono) detected in his last blood draw so they are going to check it again. If the level gets higher they will treat him for it, they are unsure if he got it from his donor's cells or if he picked it up in his travels. Hope everyone has a great weekend!