Day +102

We were readmitted late Thursday night early Friday morning when one of the Oncologists called to tell us that the cultures from his line being broken Wednesday morning came back positive. They have given him continuous antibiotics since coming in. He had a bone marrow aspirate this morning to confirm that he is totally donor and that he has shed his KRAS mutation which caused his monosomy 7. They are currently waiting for authorization for the medicine for the infection in his line because it is $6,000 a dose, they had to wait for it to grow to know what it was (Staph). There is a very common issue of lines getting infected especially in infant / toddlers. Sorry if my thoughts are muddled I wanted to post while the little stinker was eating his dinner. Speaking of being a stinker he has officially figured out how to take off his diaper all on his own which is another host of problems that we had totally forgotten about healthy kids doing crazy things. I will try to get on again soon to let everyone know how we are doing but Ryan is holding strong as always we have been so lucky to have such a strong soldier! 

Day + 98

Sorry for the lack of updates. I started working again on Monday and Dan is still working full time so having a spare minute isn't easy. Ryan is doing great, his counts have been holding up well. We had a minor incident yesterday with his central line but that got fixed immediately. I will try to post an update in the next few days with lots of info.

Day +88

Another eventful week for us, Ryan's EBV count is back under 250 copies but they are going to finish the four week treatment to be sure that there isn't any lingering virus. His counts have been good, his ANC was 2410 today. Lots of hours spent in the hospital the last few weeks but every second we spend is another second closer we are to having our old Ryan back better than brand new. I should be starting work on Monday the 12th and could not be more excited about it, hopefully I can regain my social skills to an adequate level quickly! We are also looking to move into an apartment around the end of the month which will be such a wonderful change for us. The Ronald McDonald House has been amazing for us but we feel like to healing process will only be complete once we can be in our own space with our own belongings. I feel like there was so much more to share with you but my brain has gone blank. Have a blessed week everyone.

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.