We continue to have a somewhat bumpy road, but as usual Ellie seems to take everything in stride and thankfully in the last week there have been more days with smiles.
We had gotten spoiled over the last year of maintenance, for the most part Ellie's little body has done quite well. On most weeks we were only having to go the hospital once a week and we had a pretty good routine going. Last week we had 3 days at the hospital, and we are hoping for just 2 this week.
Last week started with labs and a quick visit with her oncologist on Monday. The good news from last Monday's visit was the adenovirus had decreased significantly in her blood, and that the erythromycin seems to be a wonder drug for gastroparesis and has made her feel 100% better. Also, her counts had come up enough for us to start her 6-MP back at 50% of her regular dose. The bad news from the visit was that her oncologist wasn't comfortable leaving her on the erythromycin long term (more on that later).
Last Thursday we went expecting her counts to be up to start the rest of her chemo...unfortunately her platelets had fallen below 50 so her chemo was again held. They also did some clotting tests which were abnormal. We were sent home expecting not to be back until today (Monday). Then at about 8pm on Thursday night we received a phone call from her Nurse Practitioner (never a good sign when they call you after hours) and she let us know that there was a problem with her labs and we needed to come in first thing in the morning before going to school. On a normal Friday this would only be a mere inconvenience, but this Friday, Timmy and Ellie's preschool had a field trip planned, a train ride that they were both SO looking forward to. We arranged to meet the Nurse Practitioner early before the LPCH lab opened at the Stanford lab so we could hopefully get the labs done and still make it to the field trip. Because the labs they were doing had to do with clotting and had been so abnormal, they decided she had to have them done in her arm not her port. She knew this going into it because we put numbing cream aka "tickle cream" on her port when she is being accessed and this time we put it on her arms. Unfortunately, she doesn't have great veins and we've had a lot of problems with the arm pokes in the ER visit so she was very nervous...but as usual she got through it and was so brave. And we made it to the field trip in time so she got to ride the train with her classmates. Upon arriving at the train station, she insisted on taking her sweatshirt off even though it was cold outside. At first I didn't realize why, and then when she saw Timmy she stuck out her arm with the pink bandage on it and told him she did her labs in her arm...she was so proud of herself.
Our weekend was relatively quiet. And she and I made the trip back to the hospital this morning. Again, I expected her counts to be up and to be resuming chemo but that wasn't the case. She had to do another arm poke today as they are still checking her clotting, and this time there were no tears...she just sat on my lap and watched as they drew her blood. When we first walked into the room, she looked to make sure they had the pink bandage with purple hearts and then she was ready to go. There was another little boy who came into the room while she was getting her labs. He is 6 or 7 and just went off treatment a few months ago. When I saw his mom in the waiting room after the labs, she called me over and whispered how helpful it was for her son to see Ellie, someone a lot younger than him, be so brave with the arm poke and not cry.
We waited for about an hour for her labs to result and meet with her oncologist. First, we discussed the plan moving forward to take her off the erythromycin. There are no studies on the interaction between erythromycin and the chemo she takes so long term they don't want her on it. So, she will keep taking it for about another week and then we will go off of it and pray that her body can keep processing her food. My understanding is that if she is going to get sick again with the gastroparesis it will happen within a couple of days.
The other development from today's appointment was that her platelets fell again and today they were quite low. During maintenance they have been somewhere between 150,000 and 200,000 and as of today they were down to 9,000. They haven't been this low since frontline treatment. So she needed a platelet transfusion today. First we had to wait for a room and then for the platelets to arrive. Her doctor believes that this dip is a result of the same virus that had hit the rest of her counts last week.
When she was diagnosed we knew what it was and her doctor laid out a course of 2 and a half years of treatment. Was it a guarantee, no, not at all, but it was a plan and he knew what to do. I think what has been so hard about the last 6 weeks is that there have been so many different things that have come up and they don't all have a diagnosis and a plan. So, I wasn't surprised today when he said the dip in the platelets was due to a virus, though at times I think this is code for, we are not really sure what's causing this and the only real course is to wait and see if things change. So for now, we wait until Thursday and hope and pray that the transfusion from today has held and her platelets are in a safer range.
My father-in-law told me today that to donate platelets at the Red Cross it takes two hours. To the person who donated Ellie's platelets today, thank you!! Without all the people who donate blood products we wouldn't be in the place we are today.
I leave you with two pictures from today. The first one is her getting her platelet transfusion and the second one is her showing off her pink bandage from the arm poke. Thank you everyone for continuing to keep Ellie in your thoughts and prayers.
MissyE is so brave!
ReplyDeletePolly, thank you very much for the update!