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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.

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! 

Ryan's Army on Facebook

Ryan's Amazon Birthday Wishlist

GiveForward Site

Day +43

Ryan's birthday is tomorrow, we are so excited to celebrate! This weekend will be a lot of little adjustments and monitoring because his counts have been bouncing around. His bloodwork got sent out on Wednesday to check his STR's, hopefully we get the results back today but it probably will not be until next week. I'm going to make a wishlist on Amazon for his birthday if anyone wants to get him gifts. I'll update once we get results. Have a great weekend and welcome to Summer!

Day +37

Time is like a black hole here, you come out of the other side unsure if it has been 15 minutes or 15 days. Everything is going VERY well. Ryan's belly has finally gone back down to almost normal size and his weight is normalizing as well. The rash he had has already cleared up with a little boost in his immuno suppressant. We are now just waiting for his body to start producing enough platelets for us to get discharged. His appetite has gotten better slowly with the abdominal swelling going down. They have started weaning him off of his morphine which has gone well, he has to be at a manageable level to leave. Tomorrow is Father's Day and I am lucky to say that Ryan has the best Dad in the whole world. Have a great weekend everyone!

Day +34

Ryan's had an eventful afternoon. We finally got his drain placed, ND tube put in, and bone marrow aspiration done. They removed about 100cc of the fluid during the insertion. The doctor said that the fluid they drained was clear which is a great sign. Instead of taking it all at once it will be about 100cc every 6 hours until it is back to a level they are comfortable with. We will begin tube feeding some breast milk tomorrow to try and kick start his digestive system again. Once he is having good intake of breast milk and he begins making his own platelets we will be discharged. Fingers crossed. The bone marrow aspiration will take a week for results and they have sent a sample to the specialist in California to help them do research to help find a cause / cure for JMML. Well I need to try to get some sleep now. Keep us in your thoughts!

Day +33

Dan and I went to a job fair so Ryan got a visit from his abuelos so we could get a break together. After another day of delays Ryan's doctors have been trying everything they can think of but he is still retaining a lot of fluid (basically 15% of his body weight) in his abdomen. If his weight and abdominal girth doesn't go down by morning they will be putting in a shunt to drain the excess fluid. We also noticed the other night that he has developed a rash on his scalp / forehead which has spread a little to his face. The rash is graph vs host disease (GVHD) which is the donors cells realizing that Ryan's cells are not theirs, the school of thought is that this minor rash is a good sign which should actually mean that he is less likely to relapse. He is in amazing spirits, just a little uncomfortable. Keep up the prayers, they are working. There are just a lot of hurdles on the track to recovery from transplant.

Day +32

 The bone marrow aspiration is postponed again today. Ryan has about 400 CC's of free fluid floating around in his tummy so he has a giant 59 cm belly right now. They didn't want to put him under anesthesia with the pressure from the fluid so we are trying multiple doses of diuretics to try to flush the fluids out. This is all very normal after the strength of the chemo he received  He is also having some issues making his own platelets so it is looking like we will be inpatient for another week until his appetite improves and he doesn't need to get platelets everyday. We have been so fortunate to have such great medical staff to explain it all and make us a part of their decisions. We should know later today or tomorrow if he is 100% donor cells from a blood sample they had taken on Friday. Our Oncologist is very confident that he is all donor cells but wants to verify that he has shedded his KRAS mutation which can cause future problems. Well looks like I have a minute to nap so I will try to update again tomorrow!

Ryan is 100% donor cells!!!!!!!!! Now they just need to verify with the aspiration that he no longer has the KRAS mutation. Still a long road ahead of us but the good news is always welcome.

Day +30

Busy day. Ryan's counts keep coming up but we had to postpone his bone marrow aspiration today. The doctor that studies JMML is going to get a sample of it so they needed to push to Monday so she can get it fresh. While he is under anesthesia they will be doing an endoscopy to make sure he isn't experiencing graph vs host disease (GVHD). We are seeing his energy level soar but he is still reluctant to eat so he is getting his nutrition from his IV. With any luck his appetite will fire back up in the next few days. Have a great weekend!

Day +26

ANC this morning was 1,700!!! If he keeps this up it looks like we will be discharged next week. What a wild roller coaster. Keep up the prayers!

Day +25

Today Ryan's white blood cell count is 2.05 and his ANC is 1125! This is what we have been waiting for. He has returned to my full force terrorizer. I'm going to start him on PT and OT tomorrow to give myself a break, with any luck he will be walking by the end of the week. As a whole there are clear signs of him engrafting so by the end of the week they will do another bone marrow aspiration to find out what percent of his marrow is his donor's cells. He still hasn't taken his nap today so it's time to fight a losing battle. I will try to update soon with info about his counts.

Day +23

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!