Happy Sunday everyone. I fell sick with that cold bug going around and spent the last 2 days sleeping and catching up on rest. Last night I slept in Mathew’s chair and was so tired I don’t recall it being a problem ~ mind you, after the hospital chairs his chair feels like a comfortable bed!
Mathew is fighting nausea mostly and it was the worst Saturday morning. We left the hospital without any instructions. John called the oncology ward and they suggested we fill the “golden nugget” pills for nausea. Which we subsequently did and after Mathew took one of them he felt much, much better. There is a lack of communication going between the hospital and us making it difficult to care for Mathew before something happens which is frustrating. Some of the nurses seemed surprised that Mathew already had one cycle of chemo before this stay and they probably thought we received all cycle information then.
The pictures are mostly from the first and last days ~ the ones in between we were all very tired and Mathew didn’t feel well or awake for very long.
This photo is from last Sunday… wow, a WEEK ago already! That drawn curtain is all that separates Mathew from his unfriendly neighbour. Once Mathew settled in the nurses took his vitals (blood pressure, temperature, heart rate and oxygen measurement) and hooked him up to the IV pump via his portal. The needle pinched going in and it made him uncomfortable for about 10 minutes. After the needle was inserted, bloodwork was drawn and the omnipresent saline solution started.
John and I stayed with Mathew on Monday when the chemo started because Mathew was scared. Here the chemo is actually dripping in through his line but you can tell Matt is being goofy. In addition to the 2 drugs that were infused daily, Mathew also received regular infusions of Decadron, a steroid to help with nausea and Mesna, the drug that coats the kidneys and bladder to protect them from the chemo drugs. Then he also had constant saline, plus his daily pills. By the end of the week he didn’t want to take any more pills. Period.
Mathew took his ipad mini, my laptop, and his Nintendo DS with him. We paid for the tv on top of that so all of those toys kept him busy and generally content. Originally we were going to pass on the tv however once he saw it and realized he could watch his daily shows…well, what were we to do? The rate is $10/day which seems high, as in rip-off the patient high however as for many patients, it was worth it. The people who hook the tv up are in the hospital from noon until 9 pm on weekends and show up very soon after requesting services. Even they are with the times – they accept cash, debit or credit!
This photo shows a closer look at Mathew’s port. Once the needle clips in then the whole structure is covered in see-through tape to protect it. Mathew is still feeling pretty good when this photo was taken…and yes, that is probably a little bit of dinner around his mouth. Mathew didn’t eat the hospital food ~ we did. He munched on his craving; chicken strips or nuggets and also the Mac-a-beef. The first night Mathew ate the piece of chicken off the hospital tray but passed on the mashed potatoes and stuffing. He didn’t like the apple crumble either. He ate the scone off of one breakfast tray and besides that left everything else untouched. Thank goodness we were there to finish off his meals and not let all that food go to waste!!
These next few photos capture his IV pumps.
The IV pole held 2 pumps and the next photo shows that one was for his chemo drugs only. These stayed attached the whole 5 days and had to be unplugged and dragged each time Mathew went to the washroom. Certain drugs are hung inside the brownish, plastic bag you see hanging there. I thought the bag was used for disposal however it is actually to protect light-sensitive drugs. Those drugs break down quickly if exposed to light and must stay in the dark while being infused into the patient. The Mesna was one of the drugs hung inside the bag and so were the chemo drugs themselves.
High tech way of making sure the right pump is used for the chemotherapy! The chemo drugs are prepared daily by the hospital’s pharmacy and brought up immediately for use. All of his drugs were dispensed by the pharmacy. It is a good idea to go over the drugs each time they pass by because Mathew and I caught one error; he had received an IV bag of Decadron but still complained of nausea 2 hours later. The nurse brought in another bag and prepared to hang it until we alerted her Mathew had just had one. Her computer terminal at the nurse’s station didn’t show that drug but when she accessed the computer by Matt’s bed she saw it there. She then went BACK to the nurse’s station and by that time it showed up on the terminal there. Since he couldn’t have 2 doses so close together we were relieved to catch that. It never hurts to check, double check and triple check what your child is getting.
Mathew had the option of spending Friday night in the hospital and then going home on Saturday. He didn’t want any part of that! He wasn’t released until 10 pm Friday night because he had to receive certain medications at certain times. The final hold out was Mesna.
By Friday Mathew was emotional and broke down in occasional sobbing spells. John found out that Decadron, one of the IV drugs Mathew received, causes mood swings and that leant to his ups and downs throughout the week. The other major factor was dashing to the bathroom every hour to relieve himself. Spending a night, unhooking him and so on, every hour or so was exhausting. Now imagine Mathew doing that continually for 5 days straight… on top of everything dripping right into his major vein and flowing throughout his body. Those chemicals are poisons which were found to kill cancer. It is nauseating to realize we are willing allow these poisons to flow through our son’s body in an effort to cure him.
When it was time to leave Mathew was beside himself with excitement. He hadn’t breathed fresh air or seen the outdoors in 6 days. He was estatic. Once we arrived home, he gratefully sank unto his bed and fell into a contented, blissful sleep. He was home.
As Dorothy, in “The Wizard of Oz” says, “There’s no place like home! Mathew had a long, luxurious shower on Saturday and enjoyed his chair and his bed. Yesterday he sat up for hours, ate and drank very well (once the nausea was under control). Today controlling the same nausea proved more difficult and Mathew slept until nearly supper time.
Mathew found his drink of choice: Dole’s Strawberry and Kiwi drink. It doesn’t upset his stomach and he can drink it with impunity finally! I always limited it before to special occasions because of its sugar content but now, where 2 litres of liquids a day is mandatory he’s free to imbibe. He also likes the Brisk and he tried the Punch Gatoraid this evening without any problem. Mathew struggles with small mouth sores but is taking the Nystatin frequently to head off and reduce the severity of sores that develop.
When we arrived home there was a huge, beautiful pot of fall Mums on our front door. They are gorgeous and are also my favourite fall flower. I discovered today that our neighbours left them for us…and they also brought over some freshly made squash soup with baguettes and an apple crisp for dessert. Their kindness and thoughtful are deeply appreciated and I haven’t ever tasted such wonderful soup! I hid some in a container for my lunch tomorrow and left enough for the boys.
I am awed by the people stepping forward to help during these difficult times and we are so appreciative. From the little gifts bestowed upon Mathew, to meals and snacks, to the gorgeous flowers… people taking our dogs out… we cannot begin to express our appreciation. For those not close enough we thank you for your wishes and thoughts – they mean as much too you know! I know the frustration of being farther away and wishing to be handy; we were away from everyone for many years. Everyone’s support helps us in ways you might not imagine!
I hope to go to work this week and just pump myself full of drugs and go on autopilot if I have to. It is a bad time to fall sick. I wear a mask in Mathew’s room because his white cells will start falling now. The doctor explained that each round of chemo will knock his white counts down further from their initial high count. The daily neupogen shots will help manufacture new cells but it might not be enough to ward off infection so we are being very careful around him.
Mathew’s next round of chemo is next Tuesday (right after Thanksgiving) and it will be as a day out-patient.