Status Quo

Well, I’m still dealing with the new CarePage design for now. I have heard that there is a pretty big uproar about the changes and I’m waiting to see if the technical glitches get worked out before moving to something else. My new favorite CarePageism is that the swear word filter is catching the word m-o-t-h-e-r. You can’t say mother on CarePages! I think I have one nice thing to say about the changes, it appears that there is no longer a 4,000 character limit, so there won’t be any more “click older for more” notes. 🙂

Now for more important things. We are still outpatient, that’s good, right? 🙂 This weekend went exactly like the days of being inpatient. He has his ups and downs and after he throws up, he feels much better. He is having to down a LOT of oral meds (5 on the days he has bactrim). So today, we asked if they could move the really nasty one that has to be given 3 times a day (4 squirts per time) to IV. Sure enough, they ordered it up and got it to us tonight so we’ll start that tomorrow morning. Today we had to be in the clinic to see both the surgery team (Dr. L) and the Neuroblastoma team, so we had them do Bactrim and one round of the nasty stuff via IV while we were there. Dr. L was very happy with the wound and how it is healing, so while we still have to do a daily dressing change, Lacey no longer has to stuff the wound with wet gauze anymore with tweezers. This will make Eli much happier during the dressing change since she can now just set the wet gauze on top of the wound.

Regarding 3F8, I think this bowel issue has changed our plans. They really want to get something going since he has been without treatment for so long, but nobody thinks he can handle the beta glucan and keep it all down. So, per an informal discussion with Dr. Modak in the kitchen today, we are probably going to move to the one week 3F8 with the GMCSF shot. We have an appointment again tomorrow to talk to Dr. Modak and get all the particulars lined up so we can start the shot on Wednesday. We feel more comfortable with this, but are slightly nervous about what the narcotic they give Eli during 3F8 (dilaudid) is going to do to his bowels. We also would love to get him off of TPN as soon as we can because it’s not good on their liver to be on it for long. We expect it has something to do with his throwing up as well, so there are still some things we’re trying to work out in regards to his bowels. Dr. L said that he will want a CT scan done this week, but not quite yet. We have to go back in and meet with him on Wednesday so he can decide what to do next.

So we have some unknowns, but we’ve been happy to be back at the Ronald and not inpatient anymore. It’s been great for Eli to get to see his buddies back at the house again. Lacey’s parents just left this weekend after being here to help us out while we were inpatient. The next day, my brother Adam and his wife Jo showed up and they will be here until next Monday, so Eli has been enjoying having visitors from home as well. Please pray that we get some of these bowel issues figured out. It really is miserable for Eli to not be able to eat when he’s very hungry and to still be throwing up every day and feeling rotten. You know a kid is desperate when he comes down to a BBQ dinner and asks to lick some baked bean juice off of a spoon over and over again because he can’t actually eat the baked beans. 🙁

I know many of you have been praying for Coleman Larson (carepage: ColemanScott), who we met in Iowa City while he was being treated for Medulloblastoma. You can check their site for the history, but the short story is that they will be joining us in New York to get treatment at Memorial Sloan-Kettering Cancer Center and one of the doctors that deals with Medulloblastoma is also a Neuroblastoma doctor, so we know they are in very good hands. Of course, those of you that remember our drama with Iowa City and their extreme personal dislike for Sloan can imagine how thrilled they were to be losing another customer, I mean child, to NY. The important thing is that they are coming to a place that is ready to try anything to beat this nasty beast for Coleman. We remember all too well how intimidating it is to come to NY for the first time, so please pray for them as they do a final round of chemo this week in Iowa City and prepare to come out here for treatment.