Lots of news--some good, some bad

Today's clinic appointment was long but it went well. It turns out that there are a lot of new patients starting their pre-transplant work up and around this time of year they tend to have lots of annual check-ups, there are also a lot of kids that were recently released the result is that the clinic is packed. We have always had early appointments. Since Olivia is an early riser we would get the first appointment of the day at 9am. Today we arrived at 9am to find that all the rooms were full. One of the nurses was telling me that when she got there at 7:20 there were already 4 families waiting. Interesting since the doctors usually don't arrive until around 9:30 or 10:00, I think they might have had really long days today in clinic. We arrived at 9am but we didn't leave until after 12:30pm, we spent that time waiting for the doctors. It's a long time to spend in a tiny exam room. We received some really good news at clinic today. Olivia doesn't have C. diff and the cultures of her stool have all come back negative. She isn't vomiting anymore. The chance that it is Graft vs. Host is unlikely right now. Today we were able to discontinue one of her antibiotics and one of her blood pressure medicines. Olivia has lost about 1 pound since Monday's appointment. We're hoping that she'll be able to maintain her current weight or gain a little weight by Friday. We have to go into the clinic on Friday for a weight and blood pressure check and if all is well we won't have to go back to clinic until November 18th! This is fantastic news but we're a little apprehensive about getting really excited about it. We're focusing on taking one day at a time.

Olivia and I returned home from clinic to find a very unhappy Peter waiting for us. Apparently Peter had been vomiting and having diarrhea all day. Hmmm, sounds familiar, perhaps Peter caught something from Olivia? I didn't want to take any chances so I left Olivia here to have lunch and take a nap while I headed to the pediatrician's office with Peter. I really like his pediatrician here. I picked him from a list of providers approved by our insurance company. He had worked in the blood and bone marrow transplant unit at the University of North Carolina Chapel Hill and he's familiar with MPS and Sanfilippo Syndrome. He understood my concern given Olivia's compromised immune system he thoroughly examined Peter. He did take a stool sample from Peter and will try and culture that but he thinks that Peter likely has a 24 hour stomach virus. Peter hasn't thrown up since early this afternoon and his diarrhea is getting better. He is still pretty fussy but hopefully he'll start to feel better after a good night's sleep. Perhaps Olivia had the same virus but with her compromised immune system it is taking a little longer than 24 hours to resolve itself. I don't know if we'll ever really figure out exactly what is going on. I just hope everyone is feeling better tomorrow!

Living in the moment

We still don't know what is going on with Olivia's stomach issues. Since Olivia has been on her anti-nausea medicine she hasn't thrown-up. She is still having some stomach craps and diarrhea, she really hasn't eaten much at all today. I called the clinic to see if they had the results of the stool sample tests from yesterday. Olivia does not have C. diff and she doesn't have salmonella. It will take a full 21 days to get final results but so far the cultures have all been negative. That leads me to belive that at this point it's either Graft vs. Host or she's just having stomach issues caused by her other medications. I know that these meds have been rough on Olivia's system, they are rough on all of us. I dread giving them to her, she hates the way they taste. We've tried switching some of the really bad tasting meds to tablet form, that worked for a while but the novelty of that has worn off and she just hates them. Tomorrow is her last dose of one of the really nasty ones (Avelox/moxifloxacin hydrochloride ) and she's scheduled to finish another gross one (Linezolid) this Friday. I hope that they don't end up changing this tomorrow and she really is able to stop these two meds soon. I'm anxious about tomorrow's visit. I'd really like to have answers and I'm nervous that they won't be able to give us answers. We're learning that medicine can't always provide a simple answer, it's almost always more complicated than that. All we can hope for is knowledge so that we can make well informed decisions.

In the mean time I'm really trying to live in the moment so enjoy these pictures of us "living it up".

Day +103--What the heck?

For the last several weeks we've been moving right along, for the most part our clinic appointments were short and sweet, we were even discussing going home next week. Over the last week I think we've hit some road bumps and they're throwing us for a loop. We made unscheduled and unanticipated trips up to the clinic this past Friday and again on Sunday. Today's visit was expected but didn't really go as planned. After her IV dose of anti-nausea medicine last night Olivia felt much better, she was back to playing and laughing. They gave me a prescription for the same anti-nausea medicine at home but by the time we left last night I decided not to get it filled. Olivia wouldn't have been able to have another dose until 4 am and since I knew she'd be asleep then it didn't make much sense to have it filled. I took Olivia into clinic first thing this morning. The good news is that her breathing issues seem to be resolved. She is responding very well to the breathing treatments and her lungs sound completely clear! Her white blood count is down significantly and is back in normal range. She's not dehydrated and her blood chemisries look great. Olivia was still nauseous this morning and was vomiting this morning before I was able to get a dose of anti-nausea medicine into her. Based on our conversations about Olivia's symptoms they suspect that she might have C. diff. From what I understand C. diff is a bacterial infection in your colon and large intestine. These good bacteria are normally present but can be wiped out by antibiotics. Since Olivia is on so many antibiotics it is a reasonable possibility that these antibiotics (while treating the infection in other areas of her body) have wiped out the good bacteria that she needs to keep things working smoothly in her colon. Olivia went to the potty and provided a fabulous stool sample for them to test and hopefully we'll know in another 24 hours or so if we really are dealing with C. diff. If it is C. diff then we would need to have another discussion about treatment options. C. diff can be treated with an antibiotic but that would mean adding another antibiotic to Olivia's growing list of meds. Since Olivia is scheduled to stop her 2 big antibiotics this week we could also wait and see if things resolve themselves when she stops those meds. If the C. diff test is negative then there are a few other possibilities.....the lactaid milk, nausea from her other meds, salmonella. Another possibility is Graft vs. Host disease of the gut. Mike and I are terrified about the possibility of GVH. Olivia seems to have been doing so well! We're reminding ourselves tonight that what is meant to happen will happen and it's not in our hands. Please keep Olivia in your thoughts and prayers tonight.

On another note we'd like to ask that you keep our friend Rachel in your prayers. Rachel is just a year older than Olivia and she became one of our friends when we were up on 5200. Rachel is having a really rough time (and has been for several weeks now). To read more about Rachel's story please visit her website here: http://www.cotaforrachels.com/blog

Good Timing

I am so thankful that my mother-in-law has arrived to help and her timing couldn't be more perfect. Olivia spent all day throwing up. This morning I thought it might have been her medicine. Some changes were made to her medication line-up on Friday and I thought she might still be adjusting to those changes. It's not completely unusual for her to be a little nauseous in the morning. The doctors say that this is pretty common. Chemotherapy can really do a number on your stomach and sometimes it can take months to resolve. I also gave her some Lactaid milk today for the first time. She had been having soy milk but she has seemed really interested in Peter's whole milk so I thought she might like the lactaid milk. The vomiting continued throughout the day even though she only had milk with breakfast. She didn't have a fever and she was still acting like herself. Around 3:30 this afternoon she was still vomiting. She was just having water but it didn't seem like she was able to keep anything in her stomach. I called the clinic and they suggested that we bring her in. I quickly packed up and I headed into the clinic with Olivia. I am so thakful that Sonia was here to help with Peter. I would have hated to drag him into the clinic. Olivia and I arrived around 4:30. They started Olivia on some IV fluids and and gave her some anti-nausea medicine. They drew some labs and we waited for the results. I could tell the anti-nausea medicine made her feel better. Her labs came back showing that she wasn't dehydrated but that her white blood count was very elevated. At this stage in the game an elevated white blood count is an indicator that her body is fighting some type of infection. Olivia is on almost every kid of antibiotic known to man so I don't know how she could even have an infection. Olivia stopped throwing up after her anti-nausea medicine so they eventually let us head home around 8pm with a follow-up appointment first thing Monday morning and a prescription for some anti-nausea medicine.

At this point we're not really sure what's going on. I do know that I am very glad that Sonia is here to help. It was so nice to leave Peter happily here at home instead of having to drag him along with us. With just Olivia to occupy at clinic our time seemed to go by so much faster.