Friday, February 25 (BMT + 156) Damn Roda Virus

In my last blog entry I wrote that Maya’s diarreah seemed to have gone better…. well I was completely WRONG!!  Wednesday we went back to the clinic and  stool samples were taken. I was told that it was just a protocol as it was most likely Irinotecan (chemo drug) which was causing this.  Surpringsily, Maya’s blood work, including lites were perfect, even her creatinine was at a low of 39 (a bit in the high side, but low for Maya).  This of course was due to Karen and I sitting next to Maya the day before giving her liquids every 20 minutes.  The staff said “you are doing such a great job!  on keeping her hydrated and running the feeds”  (Maya was not eating anything at the time), “keep up the good work”   and then we were sent back home.

Oh boy Wednesday afternoon and wednesday night things got worse, Maya continued not eating and her diarreah just became a nightmare.  At  night, poor Maya went to the washroom 21 times (yep I counted them :-)).  Around 5 am she finally slept until 9am and then things started again.  Maya did not want to leave the toilet.  At some point both Maya and I fell asleep in the washroom.  Not pretty, it was tiring.  Even when the home care nurse came to change Maya’s central line dressing on Thursday afternoon, Maya had to go the washroom several times.  Keep in mind that this dressing change is a sterile procedure.  The nurse and I had to make sure that the now uncovered central line was kept sterile at all times, not easy with Maya moving  from the diningroom to the washroom with not so much notice, because it was “I have to gooooo nooooow”.  Yes there were a few accidents along the way when we could not make it to the washroom on time.

— Maya please wear diapers

— Noooooooooo, I am a big girl, diapers are for babies

— Please wear them, if you have an accident it will be easier to clean and we can throw it away

–Noooo, I am not going to wear them,  you are just freaking out mom

3 minutes later…

— Mom I think I will wear a diaper, I just had another accident

Finally we settled on Pull ups, oh boy, I had not bought them in ages, I had forgotten how expensive they were.

Then, I got a call from SickKids saying that Maya tested positive for Roda virus (basically a stomach bug), a bit of a relief in a way as thankfully it was not the chemo drug that Maya is schedule to take again in the upcoming days.   Thursday night was the same thing, every time I ran a feed or I gave Maya some pedialyte, Maya was just getting rid of them as soon as they came in.  We had a very loong night.  But finally she was able to fall asleep at around 4am.   On Friday morning we headed to SickKids, Kirby came with us.  We were all exhausted and very, very cranky.  We had to go directly  to an isolation room as they did not want Maya touching anything.  It  was already Friday and Maya had not eaten anything since the previous Saturday.   The scale showed her weight at 15.5Kg, the week before she had been at 16.9Kg.  Inmmediately the dietitian came to talk to us.   Blood work also showed that Maya’s electrolytes were all over the place.  There was a concern that Maya was not keeping any of the feeds and we did not want her to keep on losing weight.   The clinic was busy and we were stuck on the isolation room for hours until they came to tell us that Maya needed to be admitted as they wanted to give her TPN  to prevent her from losing more weight.

Maya needed to be admitted, but there were no beds at the oncology ward at SickKids.  The options were:

a) Go to emergency and stay there until Sunday when there could be a bed available.  Negative part:  emergency would not administrate TPN.

b) Go to Credit Valley, a satellite hospital for SickKids in Mississauga. Not a pediatric hospital, but they had  a pediatric ward with oncologist nurses trained at SickKids.  They had a bed and could administrate TPN inmediately.

We chose B and off we went to a hospital we had never been to before.  To all of us Toronto Residents, and all of us who have supported SickKids throughout the years, we need to be proud of SickKids, as it truly is an outstanding pediatric hospital, with outstanding staff and outstanding services.  We noticed the difference as soon we stepped into CreditValley.  Did I ever, ever complained about the kiddie showers at SickKids?  I take that back, I sooo take that back, there were no showers at CV.  The rooms at SK look like little suites good for the patient and for the parent staying with the child.  At SK you see sanitizers everywhere, inside the rooms, outside the rooms, supplies are in the room for patients to use.  Maya was complaining of tingling (neuropathic pain) and she wanted a hot pack.  At CV, they told me to use my own heating pad as the hot pads were hard to get, and they brought some hot towels instead.  So every time Maya would scream in pain, I had to run to the nurse station, get the key to the kitchen, heat up the hot pad, and run back to the room.  Of course during that time Maya went ballistic.  Finally, They really saw Maya in pain and  I was able to get 2 hot packs.  I treasured those hot packs.  I would only pop them right when Maya started to have the tingling, then I would run to the nurse station, get the key to kitchen, heat up our hot pack and go back to the room.   The nurses at CV were very, very nice and kind to all of us, the lack of supplies was not in any way their fault.  We just got very spoiled at SK with free TV, cheaper parking rates for parents, a food menu where kids can pick what to eat (as opposed to a set menu), a bed for the parents (as opposed to a chair that extends into a flat surface), etc, etc, etc.

This is not to criticize CV, this is just to THANK all of YOU who have supported SickKids.  Definetely all the donations, all the funding, all the fund raising have truly contributed to SK being  a top notch pediatric hospital.

Surprise, surprise, We got to CV hospital and Maya starts asking for food, and she had gone four hours without going to the washroom.  Anyhow, Friday night TPN was not given to Maya, the decision was to wait for Saturday Morning.   Saturday morning comes, and Maya was having runny stools but every 5 hours or so, pheeeew nothing compared to the ones every 10-15 minutes.   Maya continued to ask for food and the resident decided to try introducing back Junior peptamen at half the strength (1/2 water, 1/2 peptamen), and another surprise Maya was handling those perfectly.   Then it was increased to 75% strength and Maya continued to do well…..No TPN at the end.  By sunday morning we were dying to come home.  Maya’s blood work showed her electrolytes were back to normal and we were sent home in the afternoon.

At home we continued with the feeds, they are now back to once a day as Maya has fully recovered her appetite.

On Tuesday morning:

–Mooooom My stool is formed!!!

I had a big smile on my face, yes this kid was listening to all the stool talk with the doctors ” is it formed?”, “is it runny?” so Maya knew a formed stool meant no more diarreah and she was truly happy for it!!!!

Maya is doing well now.  We are hoping for the damn roda virus to never come back again.

Then it was turn for Mom to get sick.  By saturday morning I did not feel well.  Kirby slept at the hospital with Maya that night.  By Tuesday I was feeling extremelly ill, I could hardly get up from bed.  My hormones were racing, all that lack of sleep from the previous days, the coughing, the headaches, the running nose, the exhaustion, all just accumulated at once.  On Wednesday, Kirby took Maya to the clinic for a check up (all the blood work was perfect), and I was able to stay home and sleep most of the day.  Apparently the visit to the clinic was soo easy and smooth that Kirby made fun of his wife’s complains that going to the clinic alone would be sometimes difficult :-).  My answer to that is try going there 3,4,5 times a week and you’ll get suffocated by the cancer world, by all the waiting, the crying, the running around.  Yes there are easy days and there are difficult days, and we all crave for those easy days, easy days for Maya is all we ask for.

Indira

Tuesday, February 15 (BMT + 146), Don’t freak out Mom!!!

Apologies for not writing any updates any sooner.  Life has been pretty, pretty busy.

The first weekend of February we went up north to a cottage with my mother, my sisters and their families  and of course, Kirby, Taylor and Maya.  Only my sister Jen wa missing (we missed you tia Jen, but keep on writing your thesis, you’re so close to becoming a doctor)  It was  a GREAT, WONDERFUL, HAPPY weekend (some pictures below).  Kirby and I delighted on watching Maya had a blast.  Maya was so excited to go, she packed her own clothes, and she was happy to be with her cousins, especially with 6 month old cousin Lily.   Maya tried ice skating for the first time and by the end of the day she was walking by herself.  It was chaotic, with 5 kids under 5, temper tantrums, crying, fighting, but oh boy it was good.  I have to say, Maya as the oldest cousin was just so independent and perfect, no tantrums, no crying, just a bit of fighting 😉

On Monday, February 7th, we arrived very early at SickKids as Maya was due to start her third cycle of these two new chemo drugs.   As usual Maya arrived happy an cheerful.  After the blood work was done, she played with Karen while Kirby and I met with Maya’s oncologist to discuss the results of the latest MIBG scans.  Well……the cancer is still there :(,  it is not going anywhere.  It has not progressed, but it has not been reduced either.  This MIBG scan was exactly the same as the previous one.   Kirby took it well,  as we had been warned before by the doctors that this is a milder chemo and it usually takes an average of 6 cycles for the results to be visible, and of course not progressing is better than progressing……but for me there was a bit of sadness, I mean how much long do we need? is it ever going to go away?  Every time Maya has scans I go to get the results with the hope of a miracle, with the hope of hearing NED (not evidence of disease ) or at least “2 spots are now gone”

Anyway… Maya did great on the MIBG scan, it was very close to two hours long.  By now we know a lot of the staff at SickKids, doctors, nurses, cleaners, residents, fellows, technicians, etc.  When we arrive at SickKids the place is so eerly familiar, we always bump into someone we know, they all say hi to Maya or they ask for her…. well, I would much rather not know this people…. don’t get me wrong, these people are all so wonderful and so caring but the familiriaty with them means that we are constantly at the hospital, that we practilly live there.

And so, for the MIBG scan we got the same familiar faces, and of course it brought some comfort as they now know how to deal with Maya.  As soon as we got into the room Maya started to freak out as it was the same room where the GFAR test takes place, and the GFAR test (kidney test) requires a poke.  Maya knew this and it took us a while to convince her that it was the MIBG – the long scan.  In previous occasions Maya got very irritated 1 hour into the scan to the point of crying.  This time there were no tears, and when the head scan came where there was a board literally touching Maya’s nose, a second technician joined, and both technicias entertained Maya, and happily we got through the scans.  These people were amazing.  They allowed Maya to take breaks in between, to cuddle with mom…..was I just  complaining that I was too familiar with the staff?? well in this case it worked wonders, they both knew Maya and Maya was delighted to have them play and watch a movie with her while the scans were taking place.

After Maya finished the scan, Maya got a barbie doll from the staff and off we left, but Maya was annoyed with her mom, and I made the mistake of touching the barbie doll the wrong way and all hell broke lose.  By this time we were at the cancer clinic and there Maya threw the barbie against the wall, she kicked me and yelled at me saying that I was not a good mother…. ahhh yes I was not a good mother because I touched the barbie doll the wrong way… all this in front of the clinic staff…whatever I had to do there got postponed and I took Maya to a corner for her to calm down.  Then we headed to the museum, this time we took the subway as Maya had been eager to ride the subway for a long time.  Thankfully my mother came along and Maya was delighted to show her abuelita the Museum, and my bipolar daughter 🙂 was back to being a sweet little girl.

Back to the chemo week… well Maya’s chemo was increased from 75% of the regular dose to 100% on this cycle.  Not sure if that made a difference but that week Maya was not herself, she was more tired and very, very irritated.  On Tuesday Maya’s beloved nanny Karen did not come to the hospital with us, and so Maya cried all the way to the hospital “I want Karen, I want Karen”.  Later in the afternoon Karen came to the hospital and of course I was vanished from the room.  Unfortunately Karen is with us only Monday and Tuesday, so the other days were very difficult.  Thankfully my mother dropt  by on Wednesday, Thursday and Friday for a couple of hours so I could get food, coffee, etc.  By Thursday we noticed that Maya was not really eating as much.  She not longer cried or was anxious to eat (for this chemo she has to be NPO for 3 hours prior to the chemo, and 1 hour after the chemo).  On Friday, the last day she hardly ate and in the afternoon she spiked a fever of 38.1C, immediately blood work was ordered and luckily Maya was not neutropenic, so we were sent home.    But early saturday morning Maya started with diarreah, by noon it was gone thanks to immodium, she also threw up a few times.  She did not eat anything at all.  On sunday she was feeling better and we took her to watch “Gnomeo and Juliet” poor Maya, her diahrreah came back half way through the movie and we missed most of the movie.   Maya has not eaten anything since saturday.   Today was the worst day of her diarreah,   we were literally sitting in the bathroom from 9am to 12pm.  Every time Maya said she was done, she started to wash her hands and suddenly she had to go again, and so we sat there watching videos on the ipod :-).   Likewise in the afternoon Karen was sitting with Maya and at the same time we were hydrating her constantly.  Thank God for the G-tube as we have been able to run a few feeds of peptamen (complete liquid nutrition).  She is not longer throwing up and her diahrreah seems to have stopped.    Maya has also complained of tingling, she said that her legs and feet tingled.  This is not constant but of course, I am paranoid thinking what if the cancer is progressing, what is going on?  With the scan taken only last week we are blaming all this on the increase on the chemo dose.  Maya has had a drastic change from a happy girl  with a big appetite to an irritated girl with no appetite whatsoever……

The week of the chemo with all the rushing around and Maya not feeling well, I was rushing Maya, “Maya put your hat on, Maya put your boots on” and at one point I was getting irritated because Maya was not listening, she was playing and playing and playing while her mad mother was running around making sure we had everything for the looong afternoons at the hospital (movies, toys, coloring books, change of clothes, extra shoes, food, snacks, water, etc).  And of course my beloved daughter would  just ignore me and did not listen at all.

I- said “Maya pleaseeee help me, put on your hat”

Maya- yelled “Mooooom DO NOT FREAK OUT!!”

I -was about to laugh as I had my 5 year old daughter lecturing me  “what do you mean freak out?”

Maya- “You know freaking out, running around saying do this, do that, not respecting your daughter” ***

I -must have had a puzzled face (not wanting to laugh)

Maya – “Do not worry mom, you are just being a mom, moms freak out”

I- turned around and had to control myself not to laugh out loud.

***Maya’s new sentece “please respect your daughter”, this is after she kicked me and I said, you have to respect your mother, and now every time she wants to do something and I say no, she said “you need to respect your daughter”

Thanks

Indira