Sunday, July 28, 2013
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.
Friday, July 19, 2013
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!
Wednesday, July 17, 2013
Tuesday, July 16, 2013
Day + 67
Day +67. Our visit yesterday went well, we had to get some platelets which I was anticipating. Today Dan has off from work and we don't have any clinic visits so weather permitting I think we will go find something fun to do. It will be nice to spend some time as a whole again today. As our nurse said yesterday having an eventful-free week would be wonderful.
Wednesday, July 10, 2013
It's been too long.
I want to start with an apology for the lack of updates, it's been a very crazy few weeks. Ryan's birthday was amazing. I was worried being in the hospital that he wouldn't get to enjoy the day as he should but the nurses had everything worked out. He got to smash some cake, open gifts, and even got serenaded by almost all of his favorite nurses. I'll have to make a photo album of everything that's happened so far on our journey and post it with my next update. Right around Ryan's birthday he started having signs of graph vs host disease (GVHD) which is good and bad. The school of thought is that if you have a little GVHD you are less likely to relapse which is amazing. The issue we had was that the little rash ended up spreading to 90% of his body and began to cause lower GI issues. Luckily we have amazing doctors whom I trust wholly who got Ryan back on track. He is on a few different medicines that help combat the rash which have helped it clear up entirely. He is on a dose of steroids which we are beginning to wean him off of. We were discharged July 1st and sent out to spread our wings and we have soared. Ryan's counts have been stellar and we have only needed to get one transfusion of platelets thus far. Daily there is a lot of administering medications and we even give him IV fluids overnight that surprises me that Ryan does so well with, he just opens his mouth and takes them now. Normally when you leave the hospital you have clinic visits three times a week but because he is doing so well we only need to come in Mondays and Thursdays. Luckily we had some time the last few days as a family to spend together which has been so amazing. Ryan's started walking, Dan started a job, I should find out this week about a great career opportunity, things seem to be on the upswing... finally. I don't want to jinx us but it feels nice to be able to think about having your feet on the ground. Today we tested the waters and went to the aquarium and he kept his mask on the whole time! He had a blast watching the other kids and was even pointing out different fish / animals. It feels like we took a baby into the hospital and got back a little man. I just want to thank everyone again for all of the support you given. We are amazed at the amount of people who read this blog especially the vast span of the globe that you are reading this from. Below I have posted the links for Ryan's birthday wishlist and our page on GiveForward. I am also in the process of setting up a fundraiser in Maine if anyone is interested in donating a gift card / product to be raffled off or if you have some free time to do some organizing for me would be AMAZING. We are also going to do another run of t shirts which I will attempt to set up tomorrow. It's time for me to try and get some sleep but thank you again from the bottom of my heart!
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