The "What"...

We came into the ER over the weekend because Saoirse was throwing up, and not able to keep down much food or water, and some of her meds. We wanted to make sure her labs were ok, and get her a quick bolus of fluids to tide her over. They drew cultures, because that's what is standard, and looked at her labs. Her labs looked great, her blood pressure and heart rate were perfect, and she sounded fine. They thought it was probably just a little tummy bug and that it would go away soon. We brought her home that night, and hoped that the throwing up would stop the next day. 
The next morning she still wasn't herself. She kept down her food and her medicine, but she was very clingy and didn't want to be by herself. After a couple of hours she threw up again. Now I was nervous that she was having some sort of brain pressure causing the vomiting from the tumor sites that we now knew were in her skull. We put a call into the doctor, and they said to see how she did for a little while, and call if she threw up again. Lo and behold, she did, and we were just going to call when they called us. 
The ER called to inform us that her blood culture was growing something and that we had to come back in right away to start antibiotics. We were going to be admitted. We were relieved that we had an answer to her vomiting, and were glad to get antibiotics started. We were hoping to be in for a day or two at most, and then take her home before figuring out what to do next about her bad scan. 


Saoirse seemed to perk up over the first two days. That night, after getting meds and fluids, she ate some dinner and played before bed. The next day, she had a bit of a rough morning, but after some blood, she perked right up and went to play in the playroom and walk around the halls. She was having a blast until she ate too much for dinner, and got very sleepy. The only problem was that she was still throwing up at least once a day, usually at bedtime or first thing in the morning. No one had a good answer for why she was still feeling sick, and thought it would have more to do with her new tumor growth rather than the bug she was fighting. 


We started talking about the next step. Everyone agrees that radiation is the way to go to kick it down quickly, and hopefully get it back under control. Her MIBG scan is set for Thursday, so we will find out then if there is any minute activity in her body (as her CT of her body was normal), or if it truly is all localized to her skull. We are hoping for the latter, and keeping our fingers crossed. We started contacting the doctors at Sloan to see if we should be trying to get down there for radiation. We had already met with the radiation oncologist there, and felt like she might be able to do a better technique than what they typically do here in Boston. Also, they do radiation twice a day, where as here they only do it once a day. We planned on meeting with the radiation oncologist here, Dr. Marcus, just to see what the schedule would be like and what could be done the quickest, and the best way for Saoirse. Initially, Dr. Marcus didn't think that she would be able to start radiation even before Thanksgiving next week. To us this was not an option. We felt like it was urgent to at least get things rolling by the end of this week, and start radiation at the latest on Monday. With this information we decided that traveling to NY would be the best option, if they would be able to get her started sooner and get the radiation done twice a day, meaning it would all be finished sooner. 
However, a few hours later, Saoirse's team came in and asked if we wanted to start radiation planning the next morning. We were confused at this, because the last we had heard, there wasn't going to be a possibility of starting even before Thanksgiving, and we had kind of settled our minds on being transferred down to NY. They said that Dr. Marcus basically rearranged the entire schedule for the machine needed, and had gotten a team together to get her started with planning Wednesday, standard radiation Thursday and Friday, and brain sparing radiation as early as Monday. She had also arranged for her to receive two treatments per day, instead of the one that they usually do. This was astonishing to us, and we were just so shocked we didn't know what to do. We said that we would do her planning, so we didn't lose her spot, but we still wanted to talk to NY in the morning and see if it was really better to just stay here. 
Mike talked to the fellow in NY, as Dr. Wolden wouldn't be in until later, and got some answers, but not definitive ones. We went and did the planning, and learned about what exactly went on as far as the radiation, and talked about how quickly they were going to be able to set up all of the treatments and the brain sparing plan. It was truly amazing how much work they were doing in order to get it together for us. We were very humbled and appreciative. After speaking with them, we really felt like it would be best to stay where we are as long as the technique really was the same, and according to both Dr. Marcus and Dr. Wolden, it is the same technique. We decided we needed to stay here and get things done. What they are doing for us is amazing, and we are so very glad that they are able to work so quickly for Saoirse. It makes us feel like they understand how important it is, and how important it is to us to have her healthy as soon as possible. 


We can see the bumps on her head getting larger, and she has pressure behind her left eye. It is not a drastic as when she was first diagnosed, but it is definitely pushed out a bit. The veins in her head are going crazy, it seems like there are more of them each day, and that they are darker. I have asked about anti-angiogenics, but they will inhibit the effectiveness of radiation, so we can't use them yet. I hope to use them after. Her planning went smoothly and quickly, and we are set to start radiation tomorrow. She has an MIBG scan in the morning, which they are going to sedate her for because of how she is feeling, and the fact that they need a good scan. Then she will receive the first dose of radiation in the afternoon. She will have two rounds on Friday, and also on Monday through Wednesday next week. We will start chemo hopefully Friday, and hopefully be able to coordinate it so that we can go home over the weekend and just have the nurse come to run the half hour IV drug for the two days (the other drug is an oral). We will know more about that tomorrow. We just hope that the radiation starts to work quickly, and that she gets some relief right away. She is just so uncomfortable, and I wish I could take it all away. Fingers crossed. 


We will be starting some research on what to do if 1) the radiation doesn't work, and 2) if it does, where to go next. Now she will not qualify for some of the standard treatments, but in some ways we have more options because a lot of new treatments are used on relapse patients first. There are a couple of very promising ones, and a couple of really alternative (but still promising) ones that we are looking into. All in all, there are about 4 or 5 that we will be researching over the next couple of weeks. Hopefully we will find one that will be the perfect fit, and hopefully it will be a non toxic option. Fingers Double Crossed!