Daddy:
May 23, 2012
My little boy's curiosity has lead him to play with his heart and breathing monitor's leads. The alarm on the machine rings out at least 4 times in the late hours of the evening. Every time I get up to check the cause I see him smiling a devilish little grin. He says " I didn't do it!" I realize it is going to be a long night.
May 24, 2012
My son's dreams must be worlds of darkness and not much happiness. I have noticed that he wakes me up at night a lot more in the past two days and it is not intentional. "No, NO, NOOO"! These are the words I hear as I am bolted out of sleep at 2 AM. When I reach my boy I can see that he is having a bad dream. His head is covered in sweat and he has filled his diaper past capacity soaking his pajamas and sheets. I quickly clean the mess without waking him because even though nightmares fill his sleep, his rest is still valuable and I have a feeling he will need it for the struggles ahead.
I can only imagine what he is dreaming about but the blood draws before we installed the port and his daily power struggle with us during medicine time rank high on the list of possibilities. At 4 AM I am treated to the same scenario and for a moment I have a feeling of deja vu. I cannot decipher his words this time but his face is contorted in a woeful expression and I can tell his dream is not pleasant. I gently caress his face with my hand and whisper soothing words in his ear. He relaxes and I proceed to clean him up again and return to bed. Another night of broken sleep.
We have been dealing with the side effects of the steroids: these include tantrums, back talk and the ballistics of objects within his reach. Another side effect of chemotherapy arrived recently, nausea. Luisito complains about his stomach more and more. He threw up food today for the first time: I think he felt embarrassed about it but I assure him that it is OK and that he can throw up all he wants. I was going to tell him that ancient Romans would do that to continue eating during festivals when they were full but I keep that to myself. They are giving him Gravol through his IV. It makes him pass out but it soothes his nausea. I find myself wishing he could sleep through this whole mess.
A nurse stopped into the room today to tell us about the nature of our upcoming lives. His blood cell counts will be the subject of our undivided attention. Although not yet Neutropenic, the nurse says that his immune function is probably already somewhat compromised because of the chemotherapy. Yesterday we made plans to let him go play in the children's playroom but because of the high volume of children present, and germs they carry, we were forced to play in the teen lounge. I used this opportunity to disappear and go for a walk outside the hospital: I finally made it outside!
The nurse's grim lecture continues. If he has a fever of 38 Celsius, that means a trip to the emergency room for a minimum stay of two days, possibly two weeks. As she continues, the previous night's events catch up with me and I find it impossible to stay awake. Fortunately for me Jen is listening attentively. I snap back to consciousness and I hear "Never give Luisito anything to that can mask a fever". A teeth brushing regimen is explained. They expect him to have mouth sores and this side effect bothers me more than the others: I do not know why but the thought of sores covering the inside of my son's mouth really upsets me. "Look for rashes, draw a circle around it in pen, that way, the next day you tell if it has grown or shrunk in size" says our teacher. She continues to explain other side effects; some are likely, less likely and some are rare but serious. I remember reading some papers the first night I was here with those headings but at that point I could defer them for later worry. Now it seems that time is here.
The topic then changes to explain the regimen of Luisito's chemotherapy and I find myself wide awake again. It seems that the most important phase of the chemo is the first month and they are aggressive about its uninterrupted completion. She tells me that during a sickness the chemo may stop to allow the body time to recover but during the first month all bets are off. I find myself grateful that he was sick already so we should be able to complete the first month successfully. We were also informed that the nature of his treatment is subject to change depending on his condition after the first month.
We are told that our time in the hospital should be ending soon and we will be moving out to the Ronald McDonald House across the street but that depends on Luisito's response to the drugs and their side effects.
We expect his hair to start falling out soon and Jen has plans to preemptively cut it off to spare him the discomfort. Uncle "Robbie" has already buzzed his head and I hear that some other folks will be doing the same thing, the support continues.
Luisito is spending more and more time out of bed and he is still getting used to his new best friend, the IV pole. I think once his smiley face balloon has deflated, I will attach it to his pole to give it some character.
Friday will be a busy day for Luisito and us. We may even get a definitive answer about whether or not the cancer has spread to his bone marrow.
Luisito has a spinal tap scheduled for 11 AM to administer the drug methotrexate into his spine. Once he has recovered he will have a date with Daunorubicin and Vincristine. These drugs are sensitive to light and as a result, they come packaged in dark plastic with a colour reminiscent of beer bottles. This makes them appear rather menacing and the nurse administering them is dressed in protective clothing that reminds me of my field days working as an Environmental Consultant. The drugs are given intravenously. The Vincristine is clear and the Daunorubicin is orange adding to its sinister reputation. I have read up on this drug and I do not like it at all but it is a vital component of the treatment so once again Luisito and the rest of us will need to be strong.
I find myself anxious but resolute. I tell myself that I will do whatever is necessary to help my son beat this disease.
One last thing. When we told you about the destruction of the tumour in 6 days a lot of you asked me if this was a common response or if something extraordinary had happened. I asked one of the Oncologists about this and he said that this is typical. I ask him if the aggressive treatment will continue and he says, "We spend the first couple of weeks killing 99% of the cancer cells and the remaining 2 years chasing the 1%".
Happy hunting.
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