Day -8

We're all moved in to our new room, the view isn't as wonderful as last time but there is much more space. All of the news  from the doctors so far has been good. Ryan will get his first dose of chemo at 9am tomorrow which will be given every six hours for three days. The first round is the most gentle of the three, which will hopefully ease us into the process. We have been taking pictures so I will post some later of our room and Ryan's handsome face. It has been brought to my attention at someone has donated cash without sharing their information, I believe that this person has been reading the blog so we just wanted to make sure that you know how thankful we are for your gift. The nurse is coming in, I will post an update in the morning.

Here we go again. (Day -9)

All packed up and on the road again. We will be staying in the Ronald McDonald House tonight then Ryan will be getting admitted in the morning to the transplant floor. Ryan has been getting a medicine since Sunday (Paliferman) to cause his mouth and throat to make extra cells to reduce the side effects of his chemo treatments. The treatment process will begin Wednesday morning and will continue until Tuesday then there will be one rest day then he will recieve his donor's cells. The process in the hospital is refered to in days, counting down will be t minus days then transplant day will be Day 0 and will begin from there. Thank you again for everyone's generosity, it is a kindness that we cannot be any more greatful for. The tshirts have been ordered and Ashley will be sending them out once she recieves them from the company, if you have not sent her payment just make sure she gets it soon so there is no delay in your delivery. Once people recieve their shirts I would like to make an online photo album with photos of people wearing the shirts and any pictures you may take of candles you have lighted in his support as a  show of how loved our little man is. Keep us in your prayers and I will try to keep everyone updated with our progress.

Baby steps

The last few weeks have felt like we were walking on a thin sheet of ice, taking baby steps so as not to break through. Within 24 hours of getting released from All Children's we were readmitted to the local children's hospital, Ryan had a fever which cleared up after some Tylenol and a stressful restless overnight. Luckily we were sent home within 24 hours and have since been doing very well. He seems to have gotten over all of the viruses, having a compromised immune system makes the smallest cold for anyone else a major event for us. The donor has agreed to reschedule his date of donation so our new transplant date will be Thursday, May 9th. With the updated schedule Ryan will begin taking Palifermin on the 28th to help ward off the mouth sores that are very common with the type of chemo he will be receiving. He will be taking this for the three days prior to starting his treatment and then again after because the effects can linger for a while. The treatment will destroy his bone marrow and assist the donor's cells to grow. (engraft) Once Ryan's blood is verified to be 100% of the donors marrow, that will mean that we are cancer free. There will be three different chemo drugs they will be used over a week: Busulfan, Cyclophosphamide, then Melphalan. Once we complete his treatment we will still be far from out of the minefield, there will be many more proverbial land mines to look out for. Graft versus host disease (GVHD) is a very common occurrence where the donor's cells see the new host as a foreign body and attack it. Luckily, there are many preventative medications that will serve as a social lubricant for the cells.   There will be a big group of medications that will be given to help prevent and lessen the side effects of the chemo and the lingering effects. The hardest part as a parent is the waiting, I like to think of myself as a very patient person but this kind of waiting is making me think I should sign up for sainthood. With a list of side effects and possible complications as long as my arm to watch out for I am still oddly upbeat. In our journey I have found some solace in reading blogs of other parents of children with JMML and I feel fortunate to have the ability to read their experiences to be better prepared for our next steps. I know it gets old hearing this but thank you to everyone who has been here for us during this transition and process, just knowing that we have such a great support system helps a lot. 

Good news and bad news.

After feeling like we had a handle on everything yesterday we have had a change in plans and are now admitted into the Oncology / Hematology floor until his transplant. Ryan finally slept for six hours straight for the first time in about six months last night only to wake up with a low grade fever. At around 4 a.m. the doctor on call had us go to the ER where they took more blood, administered antibiotics and admitted us to the room we will be in for the next 30 days. It is an advantage with not having to go back and forth from the McHouse to appointments in the clinic for the next few days but we were hoping to have one more hospital free day for our little man. The cool thing is that we are in a room with an amazing view of the bay so Ryan can look out the window at the boats. Very recently he has begun saying "bye" and waving so today when he  was watching planes fly by he was waving to them. Such a remarkable child, he is stronger than even he will ever know.

Parenting (noun)

There is nowhere in any dictionary, thesaurus, or wikipedia that can define what my idea of parenting is. According to any of these sources it's just a matter of rearing a child. There isn't a word mentioned in any of these locations that even comes close to the euphoria, confusion, sleeplessness, heartbreak, trainwreck that becomes your life the moment that your child comes into the world. Even with a healthy child each day has it's moments, let's be honest none of us are saints. Yet it amazes me how much you learn as a parent caring for a child with an illness.  You seem to take this burden onto your shoulders without even a moment of hesitation.  Previous to a conversation with someone close to me today I didn't even realize that what we are doing here and have been doing every single day isn't normal. It has just who we have become. Today my husband and I learned from the home healthcare nurse how to care for Ryan's broviac and how to administer IV medications. Instead of getting upset about the situation it was heartwarming to see my husband taking on this challenge and listening to every detail and even being the one to flush the line and even give him his medicine without any assistance. Each day will come with it's share of trials and tribulations but each one will also bring us closer together as a husband and wife and as a family. This parenting thing isn't too bad, hopefully he is still this loveable as a teen!  

T shirt time!!!

Early this morning Ryan had his broviac (a central line) put in and they took another bone marrow aspiration. Everything went very well and he is recovering very smoothly or should I say wobbly on some fantastic morphine so we are all hoping for a peaceful night of sleep. I will attempt to continue with the updates daily, thank you everyone for your continued support. One  of my dearest friends has been gracious enough to offer her time to set up the sale of shirts to help raise funds for Ryan's medical trust account, the link is posted. 

Ryan's Army Tees

Ready or not here we come!

I'm writing this in the car packed to the gills with what will be our lives for the next six months. We have our first appointment today and first thing in the morning our little champ will be getting his broviac line placed. Not being a very religious person I will still ask for all of your prayers and lighting of all of the candles you can manage to give. Thank you to everyone for your support, the fact that we even know you are here for us is amazing.