Even after getting some fresh air, he wasn't able to sleep Sunday night which was really rough; he was so frustrated and upset. Surprisingly, he had no leg pain at all over the entire weekend. It was so weird the way it was agonizing and then completely gone.
We saw the doctor Monday morning and she said she'd like us to stay one more night, ahhhh! MRI didn't give Eric an appointment and instead said they would give us a call if they could squeeze him in. Additionally, Eric's digestive system wasn't quite back to normal yet and he'd been on supportive fluids. She wanted to take him off fluids and see if he could drink enough. During the day, every time someone came in the room we asked if they had any news, but nope! The doctor had said that we could go out on a day pass, so at 3:30 I figured we were probably out of luck for MRI and we decided to escape for a bit. We started at a toy store on Main Street where Eric was very happy to pick out another Ninjago Lego set. We drove past our old townhouse on Sophia and then were driving by D&R's, but D was on the front porch so we stopped to say a quick hello. Next we headed to Queen Elizabeth Park. The Patient Parent Advocate on T8 has a pass to the Bloedel Conservatory that we were able to use. We just did a quick lap because Eric was a bit uncomfortable in there with his mask on. It was cool for him to see though because you can see the dome from some of the rooms at the hospital.
Walking around the park, we saw people enjoying the patio at Seasons in the Park so we decided to check it out. Eric was thrilled to discover they have a kids menu so we joined the people on the patio. We got a great table with a wonderful view of the city and mountains as well as the people walking through the park.
It was a great date with my mini and so nice to get out of the hospital for a few hours, and when we got back, he had new Lego to build!
Tuesday morning MRI called our nurse when she was in the room so we heard them say they wanted to get an appointment on the books and the earliest they could do was Thursday (!!!!) at noon but they'd keep trying to squeeze Eric in on Tuesday and Wednesday. Eric was still feeling well and so done with the hospital. He was not impressed that he might have to stay there until Thursday. However, his doctor came in the room shortly after and when we relayed this info, she said forget it. Since the pain had resolved, she figured by Thursday there would be nothing to see anyhow. She said if we were okay with it, she would cancel the MRI and we could go home. We were definitely okay with it!!! She did order platelets prior to our discharge and said we needed to come back on Friday for an appointment in clinic. We made it home early afternoon and it was amazing!!! I unpacked and went directly to bed and a lovely friend brought us dinner so I didn't even have to think.
Wednesday the plan was to rest and recover from the hospital stay, but Eric did go to school for an hour because people came from middle school to do a presentation for the grade 5s and he didn't want to miss that. Thursday morning he was feeling like he still needed more rest so decided to stay home again.
Friday we headed back to clinic for a later appointment this time so we got to have a nice relaxing morning at home first. This was only the second time Eric's port would be accessed since it did the weird flippy thing. Eric was nervous, but it went quite smoothly. Platelets were ordered and I ended up talking to Eric's Oncologist on and off for most of the appointment. He had some fascinating things to say about research. Or at least they are fascinating if you can divorce it from your kid. Once Eric's bloodwork came back, we had a more relevant conversation about Eric's current situation. First, we learned Friday that we were getting access to the drug to treat the mutation that was discovered. BC Cancer denied the request, but the drug company came through and approved compassionate access. A few pieces need to fall in line until we actually have that in our hands, but it should be soon. Meanwhile, we've been watching Eric's angry liver. It is functioning fine, but is inflamed. It has always been a little angry which we tolerated, but earlier this month it became very angry. Eric's Oncologist said it could be from a few different things, one of which was a virus, and then Eric started vomiting later that day. However, the virus that he had doesn't usually cause an angry liver, though it can and we all know that Eric's body likes to be special. As a result of his angry liver, we haven't been able to restart the oral chemo that we usually do at the same time as the IV one. While in hospital, the liver numbers did improve and Eric took it for a couple days, but then the liver got angry again so he stopped. I am concerned about him not taking it because his blast count was rising in only 5 days off treatment. On Friday I had hoped with the virus behind him that the liver numbers would decrease and we'd be able to restart the oral treatment. Unfortunately, his liver numbers are still really high and, as expected, his blast count is rising again now too. His Onc wants to give it a little time to resolve, in case it is the virus, but can't give too much because of the rising blast count. We were given a requisition and asked to go for bloodwork in the community on Monday. If the numbers drop then we can restart treatment, but if they don't, then we'll have to treat it with steroids (ugh) so that we can restart treatment at the same time.
For now, we just wait and see. Eric is feeling good and we're enjoying this beautiful sunny weekend! Next clinic visit is planned for Wednesday, but I guess that might be changed depending on the bloodwork Monday.
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