Day +14

What a week! Ryan has been recovering well, we are just waiting for his blood counts to start going up. Once his ANC is above 500 for three days and he doesn't need platelets for a few days they will consider him engraphted. We had a minor set back yesterday with one of the lines of his broviac became occluded so they had to replace it. The surgery was at 1pm, the surgeon said everything went smoothly now he's sleeping in my lap. It's been a week with lots of ups and downs but our little soldier is so strong. Now we wait. If you want to think of the donor's cells settling into Ryan's body and starting to do their job it would be greatly appreciated.

Day +7

So today was the day, the one we had been waiting to hit. He slept so well overnight and only needed a little extra does of Morphine to make it through then morning came. Once we woke up to get his morning weigh in and diaper change it was clear that the mucositis in his throat was acting up. Because of amount of pain that it causes when he swallows he no longer has any interest in other foods or even drinking bottles. Unfortunately it also causes his throat to create a mucus-y film that makes it difficult for him to eat even if he wanted to so he ended up spending his morning getting himself worked up until he would vomit up the sticky stuff. We have been dreading the day that this would all begin to happen, I think he handled it the best we could but it is so rough to see him suffer and not be able to do anything other than kiss / hold him to make him as comfortable as possibly. While we was having one of his purging moments he spit up his NG tube so they had to remove it and because of the progression of the sores they don't want to replace it, which I completely agree with. So this evening he was started on TPN which is nourishing him by IV until the mucositis clears up enough for him to resume eating and drinking. It will most likely be a pretty rough weekend but we are looking at the horizon knowing that the finish line is somewhere up ahead and if we keep pushing it we will get there eventually. I believe everyone should have gotten their shirts by now, I hope you like them all. I've been wearing mine around and the nurses all want some now so I'm going to see about doing another run since they are still very popular! Thank you again from the bottom of my heart for all of the kind words and Happy Mother's Day to all of the ladies. It's been one hell of a year and by the end of it we will have our little survivor back and getting on to the next chapter.

 

Our visit from Vinny Lecavalier

Day +5

Today was a good day, still just bracing ourselves for the storm that is about to hit. We got a visit from the music therapy volunteer who played the ukalele for Ryan, he seemed to really enjoy it. It is great when they have people like that come in, it makes the day seem shorter. Unfortunately he started losing his hair today just a few strands at a time. Everyone who ordered a shirt should be getting it this week. It looks like we will be doing another set of shirts since people seem interested.

Day +4

Time goes by much faster in here than you would expect. Day +2 was a rough day for Ryan, he started presenting with signs of mucositis in his throat. Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy treatment for cancer. The nurse explained that it feels similar to having a really sore throat but they decided to place a feeding tube during the early stages while he would still tolerate it well. Luckily he has still been drinking bottles by mouth and eating some table foods which is apparently very rare at this stage. The advantage to the feeding tube is that we can give his oral medications without upsetting him and he is still getting breast milk which (I think) has kept him a step ahead. They also started a small continuous dose of morphine to keep him comfortable and get through the next few weeks. Everyone that comes in to see him always seems shocked at how well he is doing, at this stage in the game we were expecting a much rougher time for him but he seems to be chugging along. Day +3 was Mother's Day and it was the best day I could have asked for. My in laws came to visit and see Ryan while my mother and I went to have lunch and get our nails done then Dan and I went to see Iron Man 3. Ryan had a great day and was so happy to have a day surrounded by grandparents. Today has been another great day, we even had a visitor! Vinny Lecavalier from the Tampa Bay Lightening has a foundation which sponsors the oncology department at the hospital and he occasionally visits the patients so Ryan got an autograph, shirt and a photograph with him. He even said  Honestly if he didn't have the tube you would have no idea looking at him that he finished treatment and he was as sick as he is. It's about time to see if he wants something to eat, thank you for reading and bless you for all of the thoughts!

Day +1

Ryan's transplant took place at around 9pm last night, everything went according to plan and lasted about an hour. In the next few days I will post the photos from yesterday. This is just a page turned in this chapter of our lives, we will be having a rough few weeks coming up before we will see the light at the end of the tunnel. Everyday the doctors / nurses / medical techs / nutritionists come in and comment on how great he is doing. He has still be eating much more than they were expecting him to and is so content to play in the exersaucer or to dance around the room in my arms. So far he has only had one difficult day which was brought on by the ATG and was expected to go down the way it did. According to everyone we have encountered we will be entering a couple of really tough weeks coming up which will be his body responding to the chemo. We will know when things are looking up once his blood counts begin to rise then they will do another bone marrow aspiration to see what percent of Ryan's marrow is the donor's cells. We have had a lot of people asking us for the information about the donor and all we have for information is that he is a 24 year old male from the US. With the National Marrow Donor Program we will have to wait one year (if the donor even wants to be known) before we can find out any more information. This is in place to protect both sides of the transaction, unfortunately some people are a little crazier than the rest of us and may use the information for less than positive reasons. I am just hoping that after the year that we will be able to meet this wonderful young man and our thoughts are with him while he recovers from his donation. It is amazing how selfless and generous it is to give your marrow to someone who you have never even met and save their life. In case one day you are reading this I cannot thank you enough for saving our sweet baby's life and giving him the chance to become the phenomenal person I know he is meant to be.  

Day -1

It seems like my last post was 12 hours ago but apparently it has been more than 2 days! Everything moves so fast yet so slow, it's like a black hole. As a whole Ryan has responded very well to his treatment, even better than anticipated. My mother arrived Monday afternoon as Ryan began getting his ATG. (ATG is not chemo but it wipes out cells as well to make room for the donor.) For some silly reason I had my guard down with this medicine and it's been the only one he had a reaction to, 80% of people who take the medicine have a responses so it is very much expected. Monday night my mom stayed with him so we could sleep but he was running a fever, had chills, vomiting, rapid heart rate but once morning came he did great all day and even did well with his second dose of the ATG Tuesday. He complete his chemo Tuesday early afternoon which is oddly a major weight off of my shoulders, don't get me wrong the next six months of recouperating his little body will be the hardest of my life but knowing that we are over this bridge reminds me that we are still moving forward no matter what the pace. It surprised me that he did very well with all of the chemo treatments themselves and has been feeding himself table food for lunch everyday. The nurses love him but honestly I don't know how you couldn't. He is full of what I like to call 'piss and vinegar' and has been keeping very active with little pockets of great cuddle time. I feel like I may be missing some things but he still has his hair, has a very light diaper rash, and if you came in the room not knowing what we were here for you wouldn't believe by sight that he was sick at all. We have been blessed that so many people care about us and I'm sure that things will continue to be amazing. 

Day - 5

As our day comes to a close we're starting to see the side effects of the chemo. Today had some ups and downs; Ryan is still slowly gaining weight but he needed a platelet infusion today because his red blood cell counts were low. His white blood cell count cut in half within 24 hours which is a good sign that the treatment is doing it's job, one of the hallmarks of the JMML is the body making an over abundance of white cells which actually drowns out the healthy cells from keeping the bad stuff out. (Think of it like a bouncer trying to make their way into a mosh pit to grab the guy causing problems.) Luckily we had a good 30 minutes of our happy little man playing around earlier. They have him on a diuretic so he doesn't retain too much water, which is a common side effect of his next set of chemo. His last dose of Busulfan will be 3am which will be followed by Cytoxan around 10am. Sorry I haven't been too good about updating, time seems to melt together when you spend your day in one room. I've been fortunate enough to have my wonderful husband here to allow me some nap time and alternate sleeping at the Ronald McDonald House. I'm pretty sure I've been getting our money's worth out of Hulu and Netflix, by the time we are out of here I will have seen every episode of every show that has eluded me over the last few years. As we are pushing through the next few days of chemo and you continue your prayers please keep in your thoughts the cancer cells leaving to make room for the healthy, fresh donor cells. Watching the things that I've seen the last few days it's hard to know how you truly feel but I have confidence in the hospital staff to put our Humpty Dumpty back together again. Bless you all and good night!   

Photo Update

Ryan seems to be taking the chemo well. We had a little issue with his Broviac line getting a hole in it tonight but the nurse was in the room and it was fixed as fast as it happened. I figured I would post some photos of our last few days so everyone can see our little monkey. Time to attempt to get some sleep!