Wednesday, Sept 29 – BMT Day 16 (+7) dealing with a little dictator

I went home on tuesday afternoon, I thought I was going to take a nap and then go back to the hospital, but I was so tired that  I passed out and had a loooong sleep from 5pm to 7am the next day.   I felt I could be in the energizer commercial…energizer bunny here I come.

After driving Taylor to school, I went to the hospital and found both Maya and Kirby still sleeping.  They had a rough night with Maya going  to the toilet pretty often and sometimes screaming in pain due to the mucositis.  Her frequent lose stools stopped 2 days ago, but then they came back due to the antibiotics…ahhhh.  Maya is not longer nauseous, she is retching a lot though due to her dry throat, but she is still taking granisetron every 12 hours, just in case.

Maya’s morphine was increased to 40mcg/kg, this seemed to control her pain.  She only needed 2 additional boluses , one in the morning and the second one late afternoon.   As Kirby mentioned in the last post, Maya is spitting a lot as she is afraid to swallow her saliva due to the pain, and so she spits and spits and spits.

Maya slept for a good part of the day on and off.  In the morning we could tell she was not very comfortable, by midafternoon she actually talked ,  and played for a tiny bit.   There were a few moments of tears, Maya gets frustrated “ohh am I ever going to swallow again?…why is my mouth so dry?”.  The last two hours I have spent dipping cotton swaps in iced water and rubbing them on Maya’s lips, it seemed to help a bit with her dry lips.

When Maya is not comfortable, her behaviour changes and so this afternoon she pretty much marked her room as her kingdom, if you came inside you had to do what she ordered you.  If you did something that she did not like you would be vanished, and so mom was vanished several times… “Out, Out, Out…I said out of the room NOW”  ahhh, and so I went out, I thought she would call me to come in, but she did not.   I was standing by the door… 30 minutes passed by, and I sneaked in, and Maya went again “Out, Out!” and she actually pointed to the door with her finger.  So again I went out for another 20 minutes.  Karen arrived, so I thought she would let Karen in, but no, we were both vanished for a long time.  Maya  said “Don’t you understand I want to be alone”   Then Karen was allowed but no  mom….. by 6pm I was allowed in but I had to watch this movie, if Maya saw my eyes drifting away from the screen, she would scream “WATCH!!” ohh man… but today i kept my cool and all I could say was “yes Maya, ok Maya, yes Maya, ok Maya”.

Because Maya’s mouth is full of sores, she cannot really talk, or I should say it is difficult to understand her, and so she makes noises when she wants something, but we do not know what she wants and she gets so frustrated that she cries.  So what did Maya do, she created a code of sounds, she said” mom, if I go ‘mmm’ it means I want to spit.  If I go ‘ahhh’ it means I have to pee”, but sometimes  I get mixed up with the codes and I have to bear Maya’s rage “How many times have I told you the sounds, how many times?” …..I take a deep breath

After her night bath and her nightly food massage when Maya and I were alone, she actually asked me to lie down with her….but i then realized that it was because she was watching scooby doo and she was afraid of the monsters.  Once scooby doo was over I was asked to get up from the bed.. .sniff, sniff, sniff.  When I asked her if she was ready to rinse her mouth she said “mooom you are tooo demanding! you always say do this, do that” I almost laughed, but I did not dare because as you all know sometimes I become afraid of my daughter, who is 4 years old!!!!  There were moments of sweetness though, at some point Maya said “mom, I am afraid you would be up for a long time, because I cannot stop spitting”… I smiled because she used “I am afraid” and gave her a kiss and said “do not worry, I had lots of coffee so I will be up all night to take care of you”, Maya just gave me a sweet smile… I love her!

Maya last spiked a fever at 8am wednesday morning, after that her temperature has been around 37C which is GREAT, if she keeps like this for another 24 hours the antibiotics would be stopped and hopefully her frequent stools would go away.  Again we hope that the mucositis does not get any worse.  What she is going through is what was expected, we were warned of that, we just hope that the other things that they said may happen do not really happen.

I wanted to end this by saying thanks to all of our friends, neighbours, family and all of you who follow the blog.  We certainly think that your prayers, chants, thoughts, and positive energy our way have given Maya the strength she has.   Yes Maya sometimes is in pain, but it does not compare to the horror we went through when Maya had hemorragic cystatis after cycle 2… we do believe that Maya’s strength come from all of you.

 

Monday, Sept. 27 – BMT Day 14 (+5) Neutropenia, first fever and did you say bipolar?

The first 11 days at SickKids were like a breeze, Kirby and I were thinking is this it? oh yeah we can do it again!   We thought our super hero Maya was going to sail through BMT.  We were wondering, was it all the naturopathic and homeopathic suplements she took prior to this?  For 10 days before her transplant we strengthened Maya’s immune system.  She got a daily intravenous injection of a whole bunch of supplements (I will detail what she got in a future post), plus she was getting a lot of supplements orally (green tea extract, resveratrol, DHA, CoQ10, etc, etc, etc).  In any case, Maya did great for 12 days, not so good in the last two days, ok today, and hopefully this will be as bad as it gets… crossing fingers

This morning, her counts signaled that she was neutropenic (neutropenia is an abnormal reduction in the number of neutrophils -white cells-in the blood).  We had been waiting for this as we knew this would be the start of infections and  wild mucositis, etc.  Maya’s hemoglobine was also low at 71 (at 70 a blood transfusion is required).

Maya slept for most of the morning, but continued to be nauseous and have runny stools very often.   The pharmacist suggested to give Maya Dexamethasone or better known as “the Dex” around here.  We have avoided this drug since cycle 3 as Maya turned  into a literally a bipolar person ….well she behaves on a bipolar manner with mom  even when she is not on dex.  With the Dex she just turned into a little monster -enraged, angry, lots of meltdowns, screams, you name it, to the point that mom was afraid of her and a psychologist was called for both mom and Maya :-).    In any case, initially I thought ok just give her the Dex as  I wanted to alleviate Maya’s nausea, but after talking to Maya’s nurse, it was agreed to change to another drug first, so instead of ondasetron, Maya would get Granisetron around the clock.  We would then monitor how she does it with it…crossing fingers.

Luckily, Maya’s diarrhea stopped by mid afternoon, her first set of cultures came back negative.  However, a mouth sore was spotted under her tongue.  Maya is retching a lot, and that can be because of mucositis on her throat.  A morphine drip/infusion was started, this is running around the clock.  It took a while until we got to the right dosage to make Maya comfortable.

Maya is not feeling well, she is pretty much only watching TV.  She asked for Karen to come to see her today, when Karen came Maya just wanted to watch her play Mario.  Today, again she did not eat anything, only a few ice chips and half of a popsicle.   The doctors said not to force her to eat, to offer her food but not to force her as this is pretty normal post transplant…ahh normal…but normal sounds good now…. I have heard horror stories about mucositis.   Maya had a very mild case of mucositis in one of her chemo rounds.  She had only one mouth sore then, and the pain was pretty well controlled.   We really hope this time is like that too.

Maya slept most of the day, how can you not sleep with so many drugs going into you? : Adavent, granisetron, gravol, fluconazole (prevention of menigitis and candida infections), morphine, add TPN and Lipids to this.

By around 8pm Maya spiked a fever.  The thermometer reading was 38.0 C.  This for a neutropenic kid means that antibiotics had to be administered…. suddenly the nurse was running around, blood cultures from Maya’s lines needed to be taken, 2 antibiotics had to be administered.  Peripheral blood needs to be drawn with the first fever, and so the phlebotomy team was called.   I thought Maya is going to have a meltdown, but when they came, she was so tired that she gave them her arm and cried only when the needle was in her vein, and then went back to sleep..pheeeww….ahh my little girl.  The fellow came to see Maya, and a blood transfusion was ordered, they did not want to wait until tomorrow…. and so my little girl is now sleeping, the blood is dripping, the morphine is dripping and all of the other meds are dripping… I hope she sleeps through the night.

We are hoping that the fever goes away, we are hoping for a quick engraftment,   we are hoping for a mild case of mucositis, we are hoping for Maya not to be in pain, and yes we are hoping for NB to go away and never come back.
Below are some pics of Maya’s BMT hospital stay:

BMT  admission day -Sept 14,  arriving at 8B, and playing with Taylor on the 8B parents lounge

Admission day for BMT playing with opah

 

Sept. 16 Day 2 of chemo, Maya watching youtube videos

watching videos

 

Sept. 17 – Day 3 of chemo – Maya making music with the music therapist

making music

 

Sept. 19th – Rest day- Maya completed her first 4 days of high dose chemo, she is happily playing the Wii with her brother in the 8B parents lounge

maya and taylor

 

Sept. 22 – Transplant Day – This captures Maya’s transplant – Maya’s own marrow cells being infused.  Maya is happily making music

transplant

Tuesday, Sept 28 – BMT Day 15 (+6) Dad to the rescue?

Couldn’t sleep last night, so this morning I got up and started the morning in a daze. Up at 5:30 AM to start my day, sit at TZC and take Taylor to school. When I got to the hospital, Indira looked like she had a rough night.  Maya looked a bit worse as well.  Her stomach has been bothering her and she’s been hugging the hot pack over night.  It’s likely due to mucositis that has spread to her stomach.

Maya’s morphine intake has also been increased to 30 mcg/Kg as well.  And for now, that seems to have her pain covered. However, anytime Maya wretches, pain shoots up and she screams in pain.  Since it hurts her to swallow, she’s been spitting like a tobacco chewing cowboy. It’s not easy.

We also saw blood coming up from her stomach as well.  Maya has been given Ranitidine(zantac) to control her stomach acid, but that was not cutting Maya’s pain in her stomach.  So, in the afternoon, the fellow and I agreed to put her on the Proton Pump inhibitor to reduce the acid production in her stomach.

Maya is also febrile. So, more antibiotics to try to stay on top of the fever. Given that Maya is also at borderline level with platelets, she was given an infusion to help her along. Of course, all these decisions span the afternoon and Maya was under some amount of discomfort.

So, is it bad? Well…yes, but not so bad. It still does not compare to our previous complication.

We’re at T+6 now. And grafting takes anywhere from 9 – 14 days.  We’re hoping for T+9 rather than T+14.  And hopefully it will not mean that in the next few days, Maya’s condition will degrade any further.

Indira is home tonight.  The great mother nature decreed that Indira should incubate a new batch of bacteria/virus for her cause.  Well, the great mother is kind not to have chosen both of us at the same time.

When Maya found out that mom won’t be around, she let me know of her displeasure.  But, she knows. Dad’s not so bad.  She’s fine for now. Morphine bolus is settling her down. She should have a good nights sleep, so I hope.

 

 

Sunday – Sept 26 BMT Day 13 (+4) … did you just order me to leave the room?

Yes, we have been here at sickkids for 13 days and counting.

In my last posting from Saturday,  I mentioned that Maya went to bed at 9pm on saturday night,  yes! this was goood …but she woke up at 3am and was wide awake 🙁 for the next few hours.  She wanted to watch TV, play her DS.  She only finally slept at 7am, and I took advantage of that and both Maya and I slept until 2pm.  Maya lying down on her bed, and me sitting up on the by now cozy chair next to her bed.

Maya has not been feeling very well since saturday.   On Sunday , she threw up several times.  She continues to have frequent lose stools.   Right now the doctors are not sure if the nausea is chemo induced (unlikely since her chemo  was stopped almost a week ago) or perhaps she has a stomach bug.  Her stool was sent out to be cultured and we are waiting for the results.    Kirby also is sick, same conditions as Maya.  It was pretty much Maya and me on Sunday.   Before Kirby came I was craving a coffee so badly, but I could not leave Maya in the room alone as she frequently wanted to pee and she would not let the nurse help her. Kirby came only for a couple of hours on sunday, and as soon as he arrived looking very pale , I quickly ran to grab a cup of coffee and luckily my mom brought some food (a yummy sopa de bolas de verde)…it was good as it was 4pm and I had not eaten anything.  Kirby left right after I went back to the room.  I found him looking sicker than Maya so he was sent home to rest.

Maya also started complaining of her throat hurting, morphine was given to her.  She got 2 boluses during the day.  Also we were trying to control her nausea as by late afternoon she was quite nauseous.  Ondasetron was given around the clock.  She also took gravol which made her very sleepy.   By 6pm Maya was out, but by 10pm she woke up throwing up, and literally she wanted to pee every 10-15 minutes, she was stooling as well.  From 10pm to 3am it went like this:  Pick Maya up, take her to the commode, wait for Maya to pee, sometimes she would sit for 5 minutes or so, put a towel on the floor so she would stand on it, wash hands, wipe her, take her to the bed, put a diaper on.  Take the commode out, wipe it with virox, come back to the room, wash hands, help Maya rinse her mouth, sit down and then 10 minutes later, do the same thing again.   At the same time Maya would continue to throw up, so adavent was given.  When Maya threw up a few spots of blood were visible, hence Ranitidine (reduces the amount of acid in the stomach, and also prevents damage to the stomach from certain medicines) was also initiated.  By 3am Maya was finally able to sleep.  Hopefully, the nausea can be controlled very soon once we figuere out what is causing it.

We have definitely seen a change in Maya.  She is very cranky, very irritable, and very hard to please.  One moment I have a sweet daughter telling me “I love you mom” and then next I have this little commander getting irritated because I wiped her the wrong way, because I dared to ask if she was thirsty.   I heard a nurse laughing last night  because Maya was ordering me around.  I wiped Maya the wrong way and she said very angrily “Mooom, I cannot believe you did that, I just cannot believe it”, “Do that again  and you’ll go out of the room”… ahhh.  One of the hardest things during this treatment has been finding a balance when disciplining Maya.   Sometimes I do not know whether to be stern with her, or just be patient and let her take her rage on me… I am a softy and in my head I think, oh she is going through so much, so most of the times she will boss me around.  This is not the case with her dad….. But then she would say “mom, I am not feeling that well”, “why am I throwing up so much?” and my heart just melts, and I want to protect her….. By 1am after Maya  telling me off for hours and hours, I stopped her, she cried and said “I am sorry mom”…and yes, of course I felt guilty, I felt like a bad mom…gosh, yes this has been one of the hardest parts for me.

Aside of ice chips and a quarter of a popsicle Maya has not eaten at all.   TPN and lipids are running around the clock.  Maya’s weight has been stable in the last few days…thanks to TPN.   Her counts continue to drop.  We have also seen sign of mucositis : Maya complaining of Pain on her throat and the blood spots when she throws up.

At night Maya has to hug a stuffed animal to sleep, but stuffed animals are not allowed here, so what are we doing, Maya is hugging a bag of 500ml of saline to sleep.   The bag is soft, it feels like one of those water babies, Maya likes it and we are relieved.

We have received a great deal of support from family, friends, neighbours.  Apologies for not getting back to you, returning calls or replying to your messages, life at the hospital is very exhausting.  We deeply appreciate your support and we will be forever grateful.

Indira

Sept. 25 – BMT Day 12 (+3) sailing along

Lack of sleep, just being tired and friday(9/24)  just flew by without me having a chance to writing an update on Maya.  Friday (Day 12 here at SK, and Day +2 post transplant) was a quiet one.  Maya’s appetite has been decreasing, but she still had  a lot of energy to play and be active in this little room.   Maya was happy to see Karen, her nanny, who came for a visit and to play the Wii with Maya.  Kirby and I took advantage of this and went out for quick lunch.  Karen left and I left too to catch up with some zzzz’s at home.  Kirby stayed with Maya and they had a great time watching videos and playing videogames, and of  course Maya took a nap….   I came back to the hospital around 9pm with home made food for Maya.  We gave Maya a bath and Kirby left for the night.  We noticed also that Maya was having frequent bowel movements.  This could be a side effect of the TPN (total parenteral nutrition”intravenous administration of a solution of essential nutrients to patients unable to ingest food”)

 

 

Saturday – Sept 25   BMT Day 12  (+3)

Maya went to bed very late once again, by 1am.  After giving her a bath we made a deal to watch the new thinkerbell movie and then we would sleep.  Maya was good to her word.    Kirby came by 9am and I left to run some errands.   Up until yesterday Maya was doing great, today it was not so great.   We noticed that Maya’s demeanour had started to change.  She was tired, and did not eat anything at all.   Maya asked for food but would have a tiny bite and then she would say that she was not longer hungry.  The drinking is not great either, she must have had only 100ml of liquids today.   TPN is now running constantly 24/7.    Also, she had 15 runny bowel movements today.  We asked Maya if she wanted to wear diapers as so far she had been wearing underwear but today she had a couple of accidents.  Maya was ok with it but still wants to be picked up to be taken to the toilet.   We are back to giving her ondasetron, gravol and adavent as she complained of nausea a couple of times today, and actually threw up.  As of this morning all of the anti-nausea medicine was to be given to Maya on a per needed basis – this was because Maya had a good day on friday and the doctors thought that Maya did not need to take anything that was not needed.  Tomorrow we will talk to the fellow as we want them back to being around the clock.   By 9pm Maya was out profoundly asleep.  I just noticed that she is drooling a lot, so perhaps sign of mucositis….

I have to say that everyone here has been amazing, the doctors, the nurses, the PSAs, volunteers, clowns, everyone is so helpful and just willing to help at all times.  The fellow that we are dealing with, Tassos, is very nice, likewise with the staff doctors.  They know what to expect, even before Maya stopped eating they were on top of things.   I remember round 3 of chemo when Maya got cisplatin for the first day, Maya did not eat for 5 days and the offer for TPN only came at the end when Maya had started to eat….

Anyhow, aside of the no eating and nausea, Maya managed to have fun today with daddy, it was a good day, not a great day, but a good day, and we take good days …..

Sept. 23 – BMT Day 10 (+1) the waiting continues

Day +1 after the transplant was a quiet one.  Maya’s counts continue to be ok, although they are slowly decreasing, but she is not yet neutropenic.

Maya’s appetite has decreased a bit but I think it is more due to the TPN she is getting overnight.  Maya missed one meal today as she woke up at 11am – that was a solid 13 hours sleep from 10pm the night before.     She asked for udon noodle soup , so I made that at home and brought it for her.  She had it for dinner.  I went home last night and got a lot done.  I had to do a late  night shopping run, making sure we have food  and snacks at home for Taylor.

There was a talk of stopping her anti-nausea medication, but that quickly was overwritten as Maya threw up once today.  So far Maya is getting regular saline hydration during the day, ondasetron every 12 hours and TPN overnight.  Maya is doing great.  Thank goodness for nintendo DS and wii as it is hard to keep her entertained.  We have been coloring, playing cards, playing the wii, watching movies, watching tree house,  and telling stories, and she will still complain that she is bored.   Maya cannot leave the room.

Thankfully so far this experience has been a positive one, Maya is in high spirits asking for the meaning of everything, what does this mean, what does that mean? There is a little 7 year old girl next door, my impression is that perhaps she was just diagnosed or she is in  a lot of pain as she cries constantly.  As soon as the nurses go in she screams and cries.  My heart aches for her parents.

This is it for today, not much to report… but I wanted to update on Maya’s condition as I know there are a lot of you that are worried and rely on this blog to get updates as we have not been able to return phone calls or reply to emails.

Thanks again for all your support prayers, chants, messages, and all the good energy our way

Indira

Sept. 21 -BMT day 8 (Day -1)

Tuesday was another good day for Maya.  Her nausea was under control.   Maya’s counts were still high.   The fellow said that usually they bottom out on day +2.

Tuesday was also the last day that Maya could come out of the ward and her room, so we had lunch with Kirby in the parents lounge and then took her for a walk in the hospital’s lobby.  When we are at the hospital, Maya’s routine usually gets all screwed up.  Maya has always been a night owl going to bed around 10pm and sleeping until 9am or 10am in the morning (no naps).  But with all the meds she receives here at the hospital and the chemo, Maya gets tired by mid afternoon and she will ask for a nap and so she took a nap monday afternoon and she only went to bed at 3am.  Likewise on tuesday she took a nap in the afternoon and so she went to bed pretty late around 2 or 3am.  Mom is very tired as Maya sleeps in most of the morning but Mom has to get up early as doctors and nurses start coming in around 8am.

Good news to share is that we got results of her bone marrow biopsy and they continue to be clear of Neuroblastoma yeahhhh!!!.

Day O is Wednesday, the actual transplant will take place at 1pm in the afternoon.  Before that Maya will be given a bath, her line dressing will be changed, and she will be moving rooms.   Everything that goes into the new room has to be scrubbed.   Parents have to wear gowns to go inside the room.    All of the clothes have to be washed, taken straight from the dryer into a plastic bag.  Clothes need to be doubled bag, once we get to the anti-room the first bag will be disposed.

If you have a moment at 1pm on wednesday,  please say a little prayer or think about Maya.  It is an autologous transplant (meaning she is receiving her own stem cells)  hence the risk is not as high as if she would have had a donor, but nevertheless there are risks of infection when her counts bottom out and she has no immune system.

Thanks everyone

Indira

Sept. 22 – BMT day 9 ( Day O Transplant Day)

Wednesday was a busy day. Maya went to bed very, very late, by 3am. I turned off all the lights, and I could hear her talking to herself and singing?.which is better than crying as when we ask her to sleep and she is wide awake she would remember sad things and would start to cry very loudly. For example she would remember that her gold fish died, and she missed them sooo much, or that long ago her daddy or mom got upset at her, or that she almost lost her Nintendo DS, and if she did she would miss it a lot.

Anyhow, I was up by 7:30am, Kirby arrived shortly after and preparations for the transplant started. I started disinfecting things and moving them to the new room. I also decorated Maya?s rooms with Disney princess wall stickers. At around 10:30am we woke up Maya, and of course she was tired and not very happy. We gave Maya a bath and then she was covered with a blanket and taken to the clean room. Maya was happy to see the princesses, and felt at ease in her new room.

At 11:00 Maya started to get hydrated, she needed 2 hours of hydration prior to the transplant. Then she was given Benadryl and Demerol, this was to prevent any reactions from the transplant (a transfusion of Maya?s own stem cells). Then different people came to wish Maya good luck, nurses, fellows, and doctors. It also happened that the music therapist passed by and Maya was so happy to see her. While Maya was in the middle of the transplant, which lasted 20 minutes, Maya was also making music.

Kirby and I sat watching the transfusion, and really with all the hype around, it was a bit anticlimactic. The first time I heard ?transplant? I thought of a major surgery, but no, the autologous transplant Maya had was just an infusion of her own cells, similar to a blood transfusion. Because the stem cells are thawed, there is only a period of time on which they can be infused, and so everything was timed for 1:00pm but since Maya was a bit late, it quickly changed to 1:30pm. The bag of cells arrived in a red cooler at 1:20pm.

Thankfully Maya did not have any reactions, well?. I should really not say that as she did become a bit annoyed with me and she kicked me out of the room. My daughter kicked me out of her room . Everyone was expecting for Maya to fall asleep with the Benadryl and Demerol, but she did not. Her eyes were closing and she was fighting it. I asked her ?Maya are you tired? and she screamed ? I am noooot tired, I am fine, I do not like you, go out of the room now? ahhhh. No blood pressure issue, no heart rate issues, no rashes, but just a tantrum against her mom. The nurse said it was normal as kids really do not feel well with all those drugs and they do not know how to express it and they take it on a close person. So I went out of the room, and then Maya said ?close the door?, she then asked the nurse and the fellow to step out of her room, she said ?I want to be alone, get out?, ohh boy. Of course I wanted to go and be close to her and hugg her, it broke my heart to see her all alone in the room. Maya is so tough. I gave her some space and came back to the room 20 minutes later. Maya was still upset and she told me she wanted to be alone. I then said, can I just sit on the chair, my back aches, and she said ?ok, but doooon?t move and don?t look at me? . So we settled on that arrangement. I so much wanted Maya to take a nap, but no nap. I am exhausted, I think I have slept 8 hours in the last 3 days.

Kirby is staying with Maya tonight. Maya was out by 10pm. By then there were no reactions to the transfusion just a strong smell of creamed corn? ohhh even Maya smelled, she said the room smelled like yucky potatoes. Apparently this smell is normal of the transfusions. Anyhow, now the waiting begins, waiting for a fever, and waiting for engraftment. During this time Maya cannot leave the isolation room. Once her counts drop (they were still high, but slowly moving down today) she will be at risk of any infections and we have to be very, very careful. Once Maya engrafts, she will be able to leave the isolation room and yes we will get moved to a luxurious room with a private bath and a kiddie shower? ahhh how I miss those, and yes a big mirror too  Thankfully, Maya continues to do well. Aside of her attitude today, she played and did some coloring and watched a movie. Maya ate, not lots but she ate today. It was decided to start Maya on TPN today. However, since Maya has been eating quite well , Kirby and I asked for the TPN (total parenteral nutrition given through Maya?s central line) to run TPN only overnight. If Maya stops eating then it can be ran 24/7.

Kirby and I wanted to say a BIG THANKS to all of you who had Maya in your thoughts today. Thanks for all those messages, cards, prayers, and chants. We felt your support today. To all of our friends, and to those who we do not know but who follow Maya?s blog, and to our families who prayed for Maya today, THANKS!. Thanks to Mary Cruz y el grupo de oracion por tener Maya presente en sus oraciones. Gracias mom for the yummy dinner tonight.

Indira

T-0, H2O2, cherry cool aid and creamed corn

It’s T-0.

I arrived at the hospital around 9AM in anticipation of the Autologous PBSC transplant (from self, Peripheral Blood Stem Cell).  There is a knot in my stomach largely due to the fact that we’re now in jail.  I suppose the feeling might have been similar for… Linsay Lohan?

The clean room is on the opposite side of where Maya has spent the first week. (Oh yeah, I guess we’ve been here a week now) It’s the same setup. The only difference here is that the room has been wiped down clean and from now on, following procedures are in place:

  • Everything coming into the room must be wiped down with Virucide. It’s just Hydrogen Peroxide in higher concentration then what you might pick up at the pharmacy.
  • You can bring stuff into the anti-room, but it must be wiped down before it enters the room.
  • You must wash your hands to your elbows before entering the room.
  • You must also gown-up prior to entering the room. If you leave the anti-room, you must disrobe the gown. When you re-enter, you must wash your hand and gown up again.
  • If anything falls on the floor, kick the thing out of the room, and wipe down. Do not pick up.
  • Wash your hands often in the room.
  • Try not to touch Maya often.  This might be an issue with Indira and Maya.
  • Food and drinks must not be left out for more than two hours. If it has, throw out.
  • Maya was given a bath prior to entering the room and her “caps” were changed as well.

So, we can expect to be in this room for approximately 3 weeks.  What else can we expect?  The side effects could appear anytime now, but it is likely to happen around T+3. So, this weekend could be bad. Having said that, again each child is different and apparently some children do not show any side effects. We hope to be in this category.

Stem cells arrived at 11:30 AM and it looks just like cherry cool-aid. Maya was given benadryl and demeral as well as additional saline in preparation for the stem cells.  Well, more for the preservative than the cells. Stem cells have been under cryogenic freeze since May 10,2010 in preparation for today.

There’s something to be said about Maya’s constitution. She should have been knocked out by the drugs, but she was stoic? She played and watched t.v. flying high as a kite. The only sign of the drugs were that after a while, she became irritable and she kicked everyone out of the room, including Indira.  (Welcome to my world, babe)

In order to preserve the cells, the lab adds in something called DMSO.  And this stuff, exudes out of the body through the pores and smells like creamed corn. Weird.

So far, our experience here at BMT, has been anti-climactic. This is good. This is very very good.  But then, we’re also aware of the fact that cancer can present a false face and things can turn on a dime.

Oh and in BMT ward, there are no residents.  This fact seem to indicate to me the serious nature of this ward. There is very little room for any errors and I am guessing this is the reason for lack of residents on this ward.

There are more people who are praying and chanting for Maya for this portion of our process. How will we ever pay you all back?  We pledge to do our part.

Thank you all.

Sept. 20th – BMT day 7 (Day -2)

Monday was Maya’s last day of chemo ….we hope it is her last chemo ever…

Maya woke up again her cheerful self;  at around 11am the nurse wearing her very stylish blue plastic chemo outfit came in with a big syringe, it was melphalan.   It run over 15 minutes, and while the chemo was going inside Maya was watching tv and could not care less whether  it was chemo or just plain saline.  I took a moment for a prayer and ask for this chemo dose to be the last one.

Around lunch time, Kirby brought some food and we were going to the parents lounge to eat, but Maya started complaining of nausea, this was the first time during our stay here, and suddenly she started throwing up.  She threw up a couple of times, but kids are so resilient, she still wanted to eat, she said she was hungry, so one bite, and then she threw up again.   When Maya throws up she usually cries “Mom why am I throwing up, please change me, I smell like puke”.  Gravol was given on top of her ondasetron.   Gravol made her sleepy but she would wake up and throw up again.  We talked to the fellow, who is very nice- everyone here has been nice, and asked that Maya’s nausea be controlled better.  We agreed on giving her ondasetron every 8 hours (instead of every 12) and gravol every 6 hours around the clock.  We also asked for Adavent to be ordered just in case we needed as it has proven very good at controlling Maya’s nausea.  We decided not to use Dexamethasone (Mayagets very irritated with this), but if the nausea was not controlled then it could be another card in our back pockets.

Maya slept most of the afternoon.  Mom went home for a quick shower and a nap.  By 6pm when Kirby called, I could hear Maya very happy  and chatty on the background.  When I got back to the hospital Maya was back to being her happy self.  Her nausea was under controlled.  She asked to eat, and Kirby went out to pick some udon noodles with teriyaki sauce.  Maya ate lots.

At 9pm she got gravol again and she became sleepy and a bit cranky, she asked me to turned off the lights and tv and to cuddle her.  I noticed she was not very comfortable, and i made the mistake of covering her up, she lost it, she started screaming and crying.  She said her hands were tingling (side effect of chemo drug).  The nurse came in, and Maya was just not herself, she told the nurse “I do not like you, get out”, she told me “I do not like you and I will never forgive you for touching the blanket” .  It was sad… then she started saying “Mom I had it, I had it” and she was pulling the IV tubes.   It was heartbreaking, i wanted to hug her but she would not let me.   The nurse gave her some adavent and quickly went to get an order for morphine for the tingling.   After 20 minutes, Maya was back to being a sweet little girl.  The nurse came in with a fairy pillow case and Maya was very sweet and said thank you very much and proceeded  to chat with her.   Oh boy, episodes like this make me sad, yes I know that it is a lot to take in for the parents, and I cannot imagine what it is like for Maya, coming to the hospital constantly, with all these drugs being given to her, the uncertainty….sometimes i say why Maya, but I see so many other families and kids that are going through the same and I say, why? why do children have to go through this?….

Because Maya slept most of the afternoon thanks to gravol, Maya was up all night.  By midnight she wanted a snack, and so we had some yummy muffins, better known as Linda’s muffins (thanks Linda).  Then Maya wanted to play, one of her latest games is to pretend she is inside mom’s tummy and she was just born, so I have to cuddle her and pretend to give her a bottle and then burp her.   By 3am I was half asleep, but Maya kept on going.  Maya also likes to be told stories, stories of when mom was a kid, stories of when she was born, stories about her aunts, and so i told her a couple of stories that she had heard before and me being half asleep I would lose track of what I was saying and mixing up stories and so Maya said “ohh mom, you are falling asleep again! no use, go to sleep” and so with my beautiful daughter’s permission I went to sleep, 15 minutes later I opened my eyes and Maya was peacefully sleeping too.

I wanted to say thanks to the High Park Zen Center for your chants.  Thanks for all the positive energy being sent Maya’s way.  We are surely blessed to have so many people chanting and praying for us.  Thanks!

Indira