Be The Match Walk / Run Tampa March 2014

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Day +234

Yesterday was Ryan's cancerversary. We decided that we were going to let it pass without much acknowledgement, December 28th will be a day that is forever etched into my brain. Looking back on the last 365 days we have experineced the highs and the lows of the human condition but we've always found a way to make the best of it all. It has officially been over six months since Ryan's transplant and he is still 100% donor!!!!! Time seems to just disappear now a days. We have days filled with a healthy, strong, wildly independent toddler who is giving us a run for our money. On December 11th he had his Broviac (chest catheter) removed, which is a major milestone and he is loving bath time more than ever. He has also been totally weaned off of his immune suppression medicine, which has allowed other medicines to start being weaned. With any luck by his transplant anniversary we will be totally free of daily meds (he currently is still on 6 meds, twice a day) but we are taking that all one day at a time. Some days are still rough; you worry about every little bump and I find myself checking his temperature multiple times a day even when he's not feeling warm but it's slowly feeling like we're on an even keel. The holidays were good to us, it was nice to get a break and be able to visit with family. We are going to be participating in the Be The Match Walk/Run Tampa on March 8th. If anyone wants to join the team or make a donation the team page will be posted at the bottom of the blog. I almost forgot our other big news, Ryan's counts at his appointment this week are the best they have been so far! His white count was 3.1, hemoglobin 11.8, platelets were 240!!! So with his positive progress we're now officially going to appointments EVERY OTHER WEEK. This may not seem like much to anyone from the outside world but going from weekly to biweekly visits is a major step. It's way past my bedtime so I'm glad I finally took some time to update everyone, we feel so blessed to have such amazing support. Have a safe, happy, healthy 2014!

Be The Match Walk/Run Tampa (Donate or Join Team)

Day +166

It has been entirely too long since I have posted an update. Since I last posted we have moved out of the Ronald McDonald House, YAY!!! We are almost completely settled into our own place in Clearwater and things have been great. Ryan's counts have slowly been drifting down for the last few weeks so we have been doing weekly doses of Nupagen (which helps push more healthy cells out of his marrow). There is no clear reason why his white count has been down other than the idea that he may have an infection that isn't showing up on any of his blood work or the other tests that he has taken. The marrow aspiration and blood work they have done shows that he is still 100% donor cells which is AMAZING. He has also turning into this stellar little man right in front of our eyes; walking, jabbering, and his motor skills blow my mind on a daily basis. There has been so much craziness for so long that we forget sometimes that he is still just a toddler that will do crazy toddler things like trying to plug a USB into the outlet. Overall we feel so fortunate to have such an amazing support system behind us and that now we have our own space Ryan seems to be flourishing. I have decided to become a volunteer ambassador for Be The Match which will mean that I will be helping with swab drives and helping to spread the word about marrow donation, so if you have any questions I'm your girl. Since he is finally fast asleep I think it's time for me to get to bed myself. Thanks for keeping tabs on us and I promise to try and keep everyone a little better updated.

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.