There you go! More photos to come…
It is Saturday morning, day 2 of this treatment, I cannot even begin to think about the events of yesterday. In a previous posting Kirby said it was going to be trivial, gosh he jinxedit, it was nothing like that.
Kirby had night duty, he was up all night, Maya and Kirby are now sleeping and I just read a posting in Kirby’s blog about Maya, my beautiful Maya, and here I am outside Maya’s room, with tears streaming down my face while her room is being scanned for radiation levels. Yes Kirby, If the world was more like Maya…
I have not really posted much in a long time, maybe because I want to run away from this cancer world, and now that I am writing there are so many emotions, so many things to write about, but for now I will write about the events from yesterday. I do not usually like to write sad postings, but yes cancer is sad and never easy, and Maya if one day you read this, please know that you are such a fighter, You make your mom and dad so proud, and Yesterday even though you hated me, and screamed and yelled, I was so damn proud of you. I was in awe of you, you speak your mind and tell it as it is…. I need to learn that from you Maya.
Maya got prepared for the catheter with benadryl, and gravol. We know her better and asked for ativant as well, it was denied. A few minutes before the procedure, we explained to Maya what was going to happen, she freaked, the fear on her eyes, the trembling, it was hard to watch. She would not even open her legs, she lost it, screams of terrors, looks of terror, hard to watch. Ativant was ordered, she calmed down but when they tried to insert the catheter again, she lost it again. she would scream and say “Please, listen to me, all of you just listen to me, you can put it in, just give me sleeping medicine”. Maya trust me we asked for it, but in the hospital world, that implies calling an anasthesiologist, involving other departments and it gets complicated, you will know the word burocracy when you grow up. Maya we tried to be strong in front of you and sometimes stern, but your mommy and daddy were crying with you, inside and out. Kirby and I took turns to quietly weep. When we asked for the sleeping medecine, the response was “nobody likes a catheter, all children fight it”. Once it was in, I could feel Maya felt so violated, so angry. She wanted to pee, but of course she needed to go to the toilet. Every time she peed she would scream in pain, and shake her legs. “Please Maya just go in the bed, the pee will go in the tube, do not move, you are hurting yourself”, she would respond crying “You are not the boss of me”. At some point she went to the bathroom, and locked herself in, she wanted “privacy” and kicked Kirby and me out. We could hear her from outside, she was screaming, crying, ranting. From outside my thoughts were, why do we put her through this? would this therapy work? . After a while she called me in, more like she ordered me in, she would cry again and say that she hated the tube, “please take it out”, “I hate this hospital”, “the doctors here are dumb, and the nurses too, they do not know anything”. She kept on removing the ancher on her leg which held the catheter tube, she said it needed to go a bit higher, oh boy she was right, it was not placed correctly and with her direction, it was put a bit higher, she felt better but still would refuse to go pee. Every time she went pee, the pain would come, and she hated me, “You are the worst, meanest mom ever, get out”. Oh Maya, yes I would feel like crap too if strangers came and put a tube inside me, and I would be angry, and in a way I am thankful you were able to release all that anger, even if you hated me.
By late afternoon, we noticed Maya’s urine to be a bit pink, with Maya still refusing to pee (weird as with the catheter she would not have had the need to go pee), we noticed blood cloths on her urine, her screams and pain, reminded us of the horrible hemorragic cystatic Maya had after a round of cyclophosphomide. Kirby and I know by now to be extra vigilant, to advocate for Maya, to ask and push for additional information, for more care, for more precautions to be put in place. They said, that Maya was moving too much and perhaps the cloths were from the stress of the catheter inside her bladder. The plas was to deflate the ballon push the tube inside a bit more and inflate the ballon again. More ativant, benadryl and gravol were given. Maya was feeling “oooozy”, and sleepy, but when the time came she put on another fight, and she vomited. Of course everyone freaked because of radiation contamination. Our wonderful doctor (Dr. Lambert) came back to the hospital late at night to scan the room and the people for possible contamination. The people were good, the sheets and everything that Maya touched, were put in plastic bags and taken away. After the procedure was done, Maya seemed a bit more comfortable. Kirby and I were exhausted. The room right across Maya was empty so the nurses offered the room to us to sleep as we could not be in Maya’s room but in a chair outside her door. I went to sleep for a bit, but around 1am Kirby woke me up. Maya had vomited again, and there were big cloths of blood on the tube. Maya continued to freak when peeing.
Once another Neuroblastoma (NB) mom told me that she never knew deep fear until NB came into her life. I share that feeling. Fear paralyzed me, “what are we doing to Maya?”, “Is the MIBG radiation burning her bladder?”, terrifying thoughts crossed my mind. The doctor was called again, the plan was to pull the catheter out, but how did we ensure Maya got rid of all that radiation, she needed to pee to get rid of the radiation. She cannot have pee in her bladder for too long, it is too dangerous. So the catheter came out, Maya was put in diapers and we needed to change them every hour. Of course an hour passed by and Maya’s diaper was dry. She was never going to go pee on her diapers, she has been out of diapers for several years now, so we had to wake her up and make her go pee. With hemorragic cystatis every time Maya went pee she would be in excruciating pain, and she would pass blood cloths. So I am pretty sure, Kirby was holding his breath when he took Maya to pee. Good news, she was not in pain, and no blood cloths!!!, and by this point May was so sedated that she just would say “I want to sleep, I want to sleep”
I was up by 6am, and came out of the room to find Kirby tired from all the bathroom trips, and cleaning pukes all night long. A good thing that had happened overnight was that Maya was now taking her lugol (to protect her tyroid) every 4 hours with no problems. This is a disgusting black liquid, I am not sure how kids take it. Maya was puking every time she took it. The lugol was being put in a capsule. Maya is now a pro at taking pills, so it was soooo much easier for her and for us. I took over the morning shift and Kirby went to sleep. Dr. Lambert was back at the hospital before 8am. They were not sure what was causing the blood cloths, it was too soon to be hemorragic cystatis. But with Maya, we never know, she has been known to be extremely sensitive to the treatments she has received.
And so it is almost noon on saturday. Maya woke up at 9:30am, she was a different girl from the nigth before. She was happy, asked for pancakes. I went to the kitchen to make her some, when I came back, she had taken a urine hat next to her bed, and sat on it to pee :-). Of course it was a bit of a mess, and we had to dispose of all the things she touched and bed sheets, but it was good to see her doing well. I thought to myself “what a mess”, but dared not to say anything, as Maya was doing her best to help, and I did not want to be called “ungrateful” by her :-). She can now pee with no pain, and the blood in her urine is going away slowly.
What a difference a day makes, what I wrote does not even come close to all the tears, the panic, the fear, the anger that Kirby, Maya and I endured, and more so Maya. But today is a new day, and with a new day there is new hope. We wish for things to go smoothly now. Iodine 131 has a half life, so Maya’s is only half as radioactive as yesterday, and we are now inside the room but separated from Maya by a lead shield. Maya remembers she was feeling “ooozy” last night and that she had to kick her legs when she peed because it was painful, but she does not remember much else, she was too drugged.
As for Kirby and I not being able to touch Maya, well… let me tell you that yesterday we were inside the room constantly, taking Maya to the washroom, cleaning her vomits, holding her while they tried to insert, and fix the catheter. Yes we wore a gown, and gloves and booties at all times. I was not going to let radiation stop me from comforting my daughter. Now that I think about it, it sounds silly, but at the time given the situation, it was the minimal we could do for her.
Dr. Lambert told us today that Kirby and I did good, that yes we were in contact with Maya a lot, but we did well. The night nurse would not come close to Maya unless she rolled the lead shield with her. I would let Kirby explain the details of the amount of radiation we received and how it works and how we are not worry about it. But if you happen to see our family turn into spiders do not be surprised :-). Maya asked over and over again why she needed the catheter, we talked to her about radiation, and used Peter Parker from spiderman as an example, and Maya said “I wonder if after I finish this treatment i would be crawling on the walls like spider man” . Yes Maya we hope so too 🙂
Thanks everyone for your loving words and support, keep sending all those thoughts and prayers our Way and on the way of all those innocent kids fighting cancer.