Today I am almost too tired to blog. What started as a beautiful sunny day, taking the kids to school, Vega happy, Alys and I on our way to the playgroup, shopping to be done, washing machine filled and running… well it changed when the nurse called at 9.15am to say that Vega’s bloods are low (red cells this time, 6.5) and we have to go to Kings for transfusing. Bleurgh. Back to school I go, get Vega, go home, prep port with numbing cream, take Alys to Beccy, off to Kings. There they want to retest (crap, this will add like 2 hours to our day here). After the expected two hours, bloods come back still low so Vega is hooked up for transfusion, to run over 3 1/2 hours. This was the 6th time the port was accessed this week and once the needle went in the port started oozing blood at the needle site. It is not supposed to do that but the port is pretty bruised and overused so it was not unusual. Our onco nurse Kat says she wants to send bloods off for a blood film. When you send for a blood film you are looking for marrow stuff, ie how well are things working etc. Blood films are being done regularly for kids on treatment but today’s was not a regular scheduled one. Kat could as well have said “we are checking for something wrong/ this blood business is odd/ we need to check for relapse.” Instantly I had a huge lump in my throat and a brick in my stomach. I was sitting across from Vega while she was watching ‘Frozen’ on the IPad, and I was wondering how to keep my anxiety under control. I kept thinking that I will probably feel like this many times over in the near and even distance future. I thought about my grateful post yesterday and felt just the opposite today. I felt really angry and pissed off and mad and sad and scared. I kept thinking I will never get over this, never be able to shake this fear. She listened to ‘Let it go’ on repeat for at least 10 minutes and it reminded me of her obsession with Rapunzel’s Healing Incantation during her chemotherapy induction. But, jeez, Disney you are letting me down. As much as the healing incantation did not heal Vega back then, I am now unable to “let it go” regardless of how many times I listen to the song. Letting go, getting over things, takes so much more in real life. I wish it was as easy as letting my hair down and changing into a very sexy outfit.
The hematologist came to chat with us a few hours later, and the blood film looked fine. No cancer cells. Apparently the clotting is still a concern, and they are clearly worried about it. It could be a number of things, some as simple as unclear blood samples because of the heparin they use to lock Vega’s central line, or maybe an infection that the liver is dealing with. At the most unwanted end of the possibility spectrum is liver damage, but Vega does not present with these clotting problems all the time, only occasionally, so it doesn’t quite fit the bill.
We left the hospital after more than 7 hours- Wiggly (Vega’s pet name for her accessed port) remains in place for tonight. The nurses are coming tomorrow morning to take more bloods because platelets had fallen again and it looks like we might be back at Kings tomorrow for more blood in a bag. Since the port looked so worse for wear earlier we decided it would be best to leave the needle in. It has been such a long time since Vega has been home with her port accessed- Alys made a real dash for her and Vega just started freaking out and then Alys saw the port and was in tears. I think it was the shock of Vega shouting but also the sight of the port that really shook her- another reminder how long it has been. Vega has just gone to bed and was crying because she said it hurts. Nothing I can do about it though.
I spent the evening catching up on things I should have done earlier. Over the last two years I have often felt like this, always trying to keep up, make up time. The unpredictability of this all is what gets me, I never seem to be able to feel “safe”. I am reminded how stressful stress is.