Wednesday, January 30, 2013

St. Pete

Today we went to All Children's Hospital in St. Petersburg to meet with the team that will be doing Ryan's bone marrow transplant. The preliminary bone marrow match search came up with some candidates; five adult donors with three that are 10 for 10 matches and there were some cord blood matches that they are looking into as well. They have 'activated' the donors that are the best matches for him and will be double checking the H.L.A. (human leukocyte antigen) typing to be sure that we have a perfect match. Once we have a match they will call us to come in and start his conditioning treatment. Another great piece of news is that all of their treatment methods are exactly what we wanted. He will not need a splenectomy or have to undergo radiation instead he will be given a pretty intense combination of chemo drugs in the hospital for about a week before his transplant.  Once they have his immune system broken down the transplant itself is just a bag of stem cells from the donor's bone marrow, it looks like a bag of blood, which takes about an hour to infuse and should not be painful or difficult at all. They will most likely need to get blood transfusions as we progress to keep all of his blood counts where they need to be. Then we will wait to see if it takes, they hope to see signs of his red blood cell counts going up within 30 days. Once he shows improvement with signs of engraftment we will be able to stay at the Ronald McDonald House or another place close by for frequent clinic visits for about 100 days. The transplant coordinator gave us a tour of the hospital today including the floor Ryan will be on. The nurses loved him, so I took full advantage of it and asked if we can get one of the bigger rooms with  a view of the bay which seems like it will work out! This unit is the hematology / oncology floor where the kids that are getting chemotherapy treatments are, when we arrived on the floor we walked in as a little boy was getting released to go to the McHouse. It was amazing to see how excited he was and how happy his family was, soon that will be us!!! One step at a time this is becoming more and more manageable. Keep sharing our story and spreading the word, every single prayer counts. 

Tuesday, January 29, 2013

Milestones

You never really see how strong something is until you put it to the test. As a parent you are constantly worried about your child's well being but when your child is sick that worry becomes somewhat of an obsession, I have to admit that becoming 'nurse mom' has been the only way for me to handle this without being a blubbering mess. My husband and I aren't very religious people and with what is happening in our little boy's body it makes it harder to believe some days that an all powerful being could allow innocent sweet babies to get sick. Then again you have a greater appreciation the days when you see the sunbeams breaking threw the clouds. On January 1st in his ICU hospital bed we discovered that Ryan's first tooth broke threw then he very shortly after stood on his own for the first time. Before we were discharged from the hospital our fragile and meek infant had overcome a terrible infection, had more blood drawn from him than I had seen before in my life, gained weight all while teething with the worst diaper rash I have ever seen. Against all odds every single day without fail he was laughing, playing, cuddling and even flirting with the nurses. Everything was put into perspective for me. Now that we've been home I can see now more than ever how lucky we are to have the support system we have. I just want to thank all of you, every single prayer and positive energy you are sending us is much appreciated. At his oncology appointment his white blood cell count went down again to 44,000! With any luck they will contine to go down. We have an appointment tomorrow at All Children's Hospital in St. Petersburg which is where Ryan will be having his conditioning and bone marrow transplant, once we get the information about his treatment I will update everyone. Thank you so much for reading and being a part of this process with us. (Ryan's second tooth broke threw a few days ago, I added the picture for you to see)

Saturday, January 19, 2013

Hurry up and wait

Our appointment yesterday at the Oncologist went well. I was really hoping he would tell us they found a match and they were just waiting for us to get there, all things in good time I suppose. Taking the oral chemo at home has been doing it's job keeping his white blood cell count down, it was down to 47k yesterday which is half of what it was when we were at the ER. I spoke with the bone marrow transplant coordinator at All Children's just to be sure we have alll of our bases covered. As soon as our insurance sends them authorization we will have an appointment to meet with our tansplant doctor and start building on our treatment plan. Once I get a better idea of what our medical costs will be I am going to be setting up some fundraising to help with medical bills, so stay tuned for that. We have sent off for our bone marrow donor kits which I put up in an earlier post, if you are under 44 it is free to get the kit sent but they prefer donations. Since we know that finding a donor is important to so many families were are making a team for a walk/run if anyone wants to join us on March 9th in Tampa you can join our team but we are also looking for donors for the walk as well if you want to check out the link below. I hope everyone is having a great holiday weekend and if anyone has any questions about anything feel free to email me and I'll try to post some answers up here for you.


Mmm, avacado.

Tuesday, January 15, 2013

Since everyone is trying to help us one way or another and many people have asked how they could become a bone marrow donor. The following link will take you to a web site that will ship you a testing kit.

http://marrow.org/Join/Join_Now/Join_Now.aspx

Saturday, January 12, 2013

New ThanksMas

Today we decided that because our holiday season was so crazy and we didn't have a traditional American holiday dinner together that we should do it while we were all home today. I cooked a turkey, stuffing, all the fixings then we all sat at the table with the fancy plates and said grace. It was nice to have a relaxing day together and just enjoy each other's company. The last few weeks has had many ups and downs, we are taking this all one day and one event at a time. The downs this week have been much easier to take on, Ryan has begun taking a low dose oral chemo (mercaptopurine) at home and so far only seems to be a little more tired than usual. The first few days giving him the medicine was incredibly difficult for me knowing what I was feeding him but I had to keep reminding myself that this is what he needs. We had our first office visit with his oncologist on Thursday and it went very well but there was an anxious feeling inside of me that was worrying that they would readmit him to the hospital. (it seems silly thinking about it now but nothing has been rational in my mind so far) His blood counts were all exactly where they wanted them to be. Things were all up from there. Ryan even got a new toy, a Mickey ring stack, which he has become very smitten with. At the office the nurses were all impressed with Ryan's activity levels, even Dr. H. was joking saying they will think he's crazy giving treatment to such a healthy baby. Since he has been doing so well our next appointment will not be until Friday the 17th, by then we will have the results of his cytogenetics and a treatment plan. For now it's looking like his treatment will take place at All Children's in St. Petersburg  which is about the same distance from the house as it is to Florida Hospital so we will be able to be close to family and a great support system. A lot of people have been asking about bone marrow donor information to see if they can help, I'm in the process of figuring that all out myself. They have been looking in the registry for a match already, hopefully they will tell us more about that at our next office visit. I have been using all of my free time looking at information / support groups / blogs for survivors and families of JMML patients, it's amazing how much you can learn so quickly! Keep up the prayers, the power of positive thinking is greatly underestimated. 

Friday, January 11, 2013

Facebook Official


After keeping the information of our pending diagnosis within our family and spending our New Year’s Eve at the nurses station in pajamas with complete strangers we decided that we needed to share this news with all of our friends and family… what better way than to put it on Facebook.  
[Facebook post] January 1st, 2013. – For anyone who has been waiting to hear from us we just want everyone to know that two days ago Ryan was admitted into the Pediatric ICU at Florida Hospital For Children. Based on the current information it’s a 99% chance that he has a very rare form of leukemia. We are keeping in good spirits and he is doing VERY well right now, he has the best doctors on his case and they are doing every possible thing they can to make this process better. Once we get more information we will share with everyone but in the interim please keep us in your thoughts and prayers. If you could refrain from phone calls, we’re dealing with this one day at a time. Feel free to send Facebook messages and I’ll get back to everyone when I get the chance. Thank you
The outpouring of positive thoughts and prayers was so much more appreciated than we could possibly ever put into words. I’m not sure if it was more the medicine or the prayers but his infection cleared up and his blood counts kept getting better everyday. January 3rd, we finally caved and got a room at the Ronald McDonald house which was amazing just to shower and lay down in a bed without having to think about anything for a few hours. Ryan started sleeping through the night and things kept getting better. 
[Facebook post] January 4th, 2013- Today we got moved off of the Pediatric ICU, YAY!!! The doctor has confirmed that Ryan does indeed have the rare juvenile myelomonocytic leukemia but there are still tests that are being processed so we need to wait two more weeks until we can start talking about treatment. Luckily Ryan is doing VERY well. If he keeps his stats where they are all weekend the doctor is going to try to let him come home until the rest of the results come in. So we’re in good spirits and can’t wait to kick this cancer’s butt!
This was the day that the JMML was confirmed and Dr. Hajjar told us that Ryan also has a gene abnormality (monosomy 7)  which is another branch within the leukemia. So not only does our sweet little baby have the rarest 1% off all childhood leukemia, his abnormality only affects 11% of these children. We have also been lucky enough to have one of the best pediatric oncologists  who is also on the board of governors for St. Jude’s so he personally knows the doctors there as well. Things just kept looking up; our doctor was in contact with the world leading reseacher and oncologist who specialists in JMML (Dr. Loh at UCSF) and we have an extended family member who is a pediatric oncology nurse who actually works with her at UCSF. So she has received his bone marrow and blood to start testing the cytogenetics to get all of the pieces to the puzzle before we start treatment. Those results should get back Thursday January 17th. 
[Facebook post] January 8th, 2013 – Due to all of the positive thoughts and prayers we will be going home today! We will be having clinic visits until his blood work comes back from U.C.S.F. around the 17th. He just has to stay healthy until we start treatment so we can stay at home until treatment. Keep praying, we are seeing the results every single day.
Being home has been the best thing for not only Ryan but for us as well. To hear him laugh and play in our own living room is worth more than anything money could buy. Now that things have slowed down some we’ve been able to enjoy the little things. Sorry if any of this has been redundant or doesn’t make much sense, I’m still a little foggy. 
We began a very low dose oral chemo at home which has been the most difficult thing in the last few days, mostly the fact that we have to whittle his cells down to nothing to be able to let them grow healthy again. We will have our first visit to Dr. Hajjar’s office where they will be monitoring his white blood cell counts and other blood function twice a week. So far it looks like we’ll be doing his bone marrow transplant in St. Petersberg at All Children’s but we have no idea when but they have started looking in the transplant database for a match. But he just woke up so I’ll fill everyone in again once we get some more information.

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Numb

In the ambulance on the way to the Children’s Hospital the lady EMT spent the whole ride trying to keep me occupied with idol chit chat, I think she could see by the look in my face that nothing was clicking for me and she just wanted to distract me while she had the ability to. As she was telling me about her failed dating history I spent the majority of the time watching Ryan sleep in his car seat strapped to the gurney with my mind spinning wondering what our lives would be like the moment the doors opened, just knowing that nothing would never be the same. Dan met up with in the ambulance bay as we were heading into the back entrance to the hospital. It felt like every single thing was whirling by us and we were barely moving. Getting off the elevator on the 6th floor we rolled down the hall and came to double doors “Pediatric Oncology / Hematology” was printed on the wall. In the previous post my husband mentioned how you find yourself repeating in your head how there is no way your infant could have cancer, what kind of cruel world would that be. Leads were attached, an IV was started, tests were being taken and Ryan wanted nothing to do with it. There is a moment that I can describe as nothing short of panic, you want to grab your baby and run, run as far away as you can. The nurses assured us that everything was fine but it felt like my soul was tearing. Once the sun started to peak into the window in our room and Ryan feel asleep from pure exhaustion the nurses convinced us to try and get some sleep on the pull out couch in his room. It wasn't more than hour later that the nurses traded shifts and we were awakened again for the day. Time in a hospital is just to hurry up and wait. The oncologist came in and started right away feeling his belly and checking his reactions. The nurse took Ryan out of the room for a walk as the doctor started speaking with us, there was a look of concern on his face that I couldn't quite get past. He went on to say that Ryan was presenting with all of the signs of Leukemia and that with his current white blood cell count they wanted to move him to the ICU. Not even 12 hours before our baby was fine, he had a cold… how did we go from having a cold to being admitted to an ICU?!? At this point we decided that we needed to call our parents, we were not going to be able to do this ourselves. By the time the nurses from the ICU made it to our floor to move Ryan, Natalie (Dan’s sister) had made it to the hospital and both of our parents were on their way. They transported him and as soon as we arrive on the floor they once again began hooking up leads and I had to start explaining everything from the first cold symptom to a new doctor and staff. A whirlwind of doctors / nurses, IV drugs, tears, hugs and confusion kept me fueled until we finally crashed for the night. At some point our parents had arrived and began to ask the doctors all of the questions that we couldn't manage to get past our own lips. Each day passed day to night and we would not have known otherwise. 

The Good, The Bad, The Terrifying





This is our son Ryan Douglas. He’s 6 1/2 months right now and about a week ago my wife and I where more scared, angry, and lost than we will hopefully ever be again. It was December 29, 2012 at 4:30 am. I may have worked a 12 hour day the night before and only gotten 4 hours of sleep, but I will remember this moment for the rest of my life. My wife (Jess) came in to our room holding our inconsolable son in her arms. “Dan, I need your help.” I would never in a million years would have guessed those five words would usher in the end of life as we knew it. After a slow and semi comatose husbands gets up grumbling under his breath, he walks out in to the living room to find his wife and child sitting on the couch. I asked Jess what was up and with the tired eyes of a first time parent, she looks up and says “Ryan has been crying uncontrollably for an hour. He has a fever of 102.1 and his eye is incredibly puffy.” My wife called our insurance provider to see what urgent care we where authorized to visit. After finding an available urgent care, we decide to give him a dose of baby Tylenol and wait to see how he does. At noon we decided to go to the urgent care office just to be safe since his fever was unaffected by the Tylenol. After a 30 minute drive and a 3 hour wait, we where finally allowed to see the physician. We told him about Ryan’s fever, his swollen eye, and his stool. He said he was no expert on children but prescribed Ryan an antibiotic and told us to see his pediatrician on Monday. Pleased with the diagnosis we returned to the house and gave Ryan a dose of the antibiotics, some more Tylenol, and booby milk. His fever didn't seem to be affected by the Tylenol. Finally his fever spiked at 103.3 so we immediately went to the Emergency Room around 6:40 PM. Once we arrived and waited for the triage nurse. 2 hrs later and she was going to just send us home having the ‘non emergent’ doctor prescribe us more antibiotics. Luckily for us, the moment he saw Ryan he seemed immediately concerned by the information that we gave him about his status and the treatment we had received thus far and called for him to get an x ray and blood work. If it were not for that doctor we would not have known what was brewing under the surface. After watching the E.R. staff try and fail to get a good I.V. line, blood was drawn and we where all finally able to eat and sleep. 12:20 AM, those numbers, will be burned into my mind for the rest of my life. Ryan was fast asleep, Iron Chef America was on, and Jess and I where trying to sleep. (unsuccessfully) We both knew that something wasn't feeling right, everything about the moment was wrong. The doctor comes in to our room. He pulls the curtain aside and I try to look in to this man’s eyes. But with every attempt he looks away. I've seen this before, the aversion to eye contact, the fidgeting hands… bad news. Expecting the worst, I remember thinking it was a good thing Jess and I where both sitting. And then, the words come out like daggers and gun fire. “Your son has leukemia.” There it was, no wind up. No “I have some bad news…”. Just THAT word. It sounded hollow at the time. A word with immense weight but no meaning. I felt numb, everything stopped working. Had I been standing… I woke up and there was a man in a white doctor’s coat talking to me. Had he been there long? I felt my head shaking up and down. As if because there was no meaning to the words, my mind defaulted to the only appropriate thing. A scream to my left. Ryan’s awake and the man leaves. I pick him up, still not hearing anything except THAT word. Rocking, I’m rocking back and forth now, mumbling something. Still no meaning but I hear the words coming out. “You’re not allowed to have cancer. You’re not allowed to have cancer.” As if by sheer will alone he’d be okay. We pass him back and forth, both of us crying tears of pure sorrow. I pray we never see those tears again because it would probably be the last time. Finally the doctor comes back in and tells us that we’re going to be taken to the Florida Hospital for Children and that an ambulance will be there to pick us up shortly. I deftly drove home to pick up some essentials still thinking that the doctor was wrong or lying to us. (As if Ashton Kutcher would jump out of the bushes screaming “You just got punk'd ”) I get back to the E.R. just as the EMT’s where about to leave with my baby boy and wife. They tell me to follow them in my car to the hospital and I nod in muddled understanding. The rest of the night is still a delusional blur. A dream shrouded in a fog thick enough to cut with a knife. The drive to the hospital was one of the longest drives of my life. At one point, I thought the back of the ambulance was a robot that was waiving at me. At another, a plane revving up to take off. I finally “wake up” from my dream in the parking lot of the Orlando Science Museum at 3:30 am. After that, everything is a blank. Between the shocking news we had received not 2 hours ago and the 4 hours of sleep I had received the night before, the fog came down and didn't lift for almost 2 days. So I’ll let Jess take the story from here.

Our Little Family