This week we had Brynlee's 3-month scans. Tuesday was the MRI, and things that day went relatively okay. It did take the IV team 3 tries to get the IV started in her foot, but I guess a silver lining of having a paraplegic child is that she couldn't really feel what they were doing. She always says that it tickles. Recovery went well, and Brynlee was able to sleep after coming off of the scanner, so when she woke up she was very pleasant. She got her MIBG injection before we left, and we were off. It was a long day, but not bad.
Wednesday was a different story. The IV went better, and the IV team was able to get her IV started on the first try. However, there were no orders from the clinic into the lab for her blood work to be drawn, so I knew already that we were going to have issues with clinic today. The scan went by quickly, but recovery did not go so well. Brynlee was able to sleep when she came off the scanner, but she did not wake up pleasant this day. She did okay until we got off of the elevator to go to clinic, and then she threw the most irrational and biggest tantrum I have ever seen her throw. For those of you who do not know, sedation is not the kindest to these little bodies. It can be downright hard on them. They can't eat or drink leading up to sedation and then they wake up feeling not so great. Post sedation tantrums are a common thing, and Brynlee has had these tantrums before but just never to this extent. Excluding the two weeks when she was in the PICU and was constantly sedated, I can think of over 30 times just off of the top of my head when she has been sedated and gone through this. Yes, it gets old, and scan weeks are very much not my favorite.
So we were waiting in the clinic waiting room and Brynlee was screaming, thrashing around, and throwing anything she could get her hands on, and the receptionist asked me if we had gotten labs. I told her the lab said there were no orders but that we still had her IV in if we could do it in clinic. She said that was fine but made it well known to me that there were indeed orders in the lab for Brynlee. Well, maybe there are orders now, but at 8:30 this morning, there were no orders. Finally the tech that was doing the vitals came up to me and said that they didn't have any exam rooms open and that she couldn't get Brynlee's vitals with her acting that way. Ya think? So I took Brynlee out of the clinic and was trying to calm her down when our social worker saw us and came to try and help me. She was finally able to get us into a room across the hall in the other clinic where they usually do the lumbar punctures (so we've never been over there before), and we closed the door, turned off the light, and put her on the bed with the rails up so she could scream her little heart out. Finally, after over an hour she calmed down. The regular clinic finally had the treatment room available for us to use (we love the efficiency of clinic), so we went over there and finally got our clinic appointment going. The nurse drew the labs and then Dr. Staddon (the fellow) came in and informed me that the scans showed "essentially no change" and that they wanted to continue with the Accutane (isotretinoin) treatment for another 6 cycles. We start cycle #7 next week.
Since Brynlee hadn't been processed normally when we arrived at clinic it took Dr. Fluchel a while to come and find us, but when he finally came we had a somewhat frustrating (at least for me) conversation. The MIBG scan is specific to Brynlee's neuroblastoma, and the radioactive isotope that is injected into her body attaches to all of the neuroblastoma cells in her body and then lights up on the imaging study. Eventually we need this scan to improve in order to get rid of this cancer for good, and Brynlee's MIBG has not changed since we finished chemo 6 months ago. He said that it can take awhile (even years) for the body to do this and that since we didn't have any change on the scans between cycle #2 and cycle #4 of the relapse chemo that chemotherapy is not the treatment needed at this point to make this happen because the cancer is not growing. So this is a reason why we do the Accutane treatment to try to take those remaining neuroblastoma cells that are still lighting up on the MIBG and get rid of them from a cellular approach instead of a toxic approach. If there is no growth when we finish the Accutane, we will go into a watch and wait period to see what happens. Obviously no one knows what will happen, but it could end up that her body will be able to manage these cells and get rid of them on her own over time or it could start to grow again (like when she relapsed) and then we will have to look at more aggressive treatments, including high-risk neuroblastoma protocol, which could include antibody therapy, MIBG therapy, radiation, stem cell transplant, etc., which all come with a lot of risk, potential side effects, complications, and let's face it, they are downright awful and suck!
Although her scans weren't as ideal as we would hope them to be at this point, in no way were these scans necessarily bad. Her doctors are happy that her cancer is not growing, especially since she has been off of chemotherapy treatment for 6 months. This is a good thing! So what we are hoping for is that her MIBG scan will improve over the course of the next 6 months and beyond. The nature of intermediate-risk neuroblastoma is just so tricky, and there is no clear-cut solution. Sometimes it takes awhile to get the right combination of just enough of the right kind of treatment to be done with it. So until February, we will hope and pray the Accutane works and things will improve, and we will basically just put her cancer on the back burner of our minds. It really is out of our hands. We have no control over it and we can't change any of it. Life is to short to dwell on that which we can't control and can't change.
Even though I was especially frustrated and somewhat down because of my conversation with Dr. Fluchel yesterday as it sometimes feels like we are never going to be done with this cancer, we are constantly trying to move on from it. Even though we are still on treatment, Brynlee is free of her central line and her current treatment is not horrible, so we can still live our lives as normally as one with cancer can live. We were also given permission to delay the start of one of her Accutane cycles until we return from her MAW trip so we won't have to deal with any of those side effects while on her trip, which will be really nice.
Otherwise, Brynlee's robot leg walking on the treadmill with the Lokomat is still going well. I don't know that I have seen any big differences yet, but I figure that it has to be benefitting her in some way.
Thanks all for your love, prayers, friendship, and kindness!
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