Saturday, Oct 30th – BMT Day 47 (T +38) NYC Marathon and a little star

NYC Marathon

We are so excited to share with you that on November 7th our dear friends and neighbours Lucy and Linda will be running the New York City Marathon in support of the Maya Kim Fund.  All funds will go to SickKids to support Neuroblastoma Research, this will help Maya and all the other kids who are battling this terrible disease.  Every dollar counts.  Please sponsor Linda and Lucy as they run  42.2 km to help all these  beautiful Neuroblastoma children.  Every penny counts.    Please click here to donate.

Little Star

In my last post I mentioned that the wonderful Garron family had donated 30Million dollars to SickKids for cancer research.  Today SickKids placed a 1 page newspaper ad in the “Globe and Mail” and the “National Post” to thank the family.  I woke up this morning to see a huge picture of my little star as part of the thank you ad.  When i showed it to Maya, she was so surprised to see herself and then continued to play…. well Maya, mom and dad and your brother are very proud of you for being such a fighter and we are beaming with pride and joy to see our little hero today in the newspaper.

Update on Maya

Maya continues to do well, yesterday she was free from all her tubes most of the day.  Last night was the first night Maya went to sleep with no tubes attached.  It was a test run to see how her electrolytes behaved.  Her blood work this morning showed that everything was good.  Maya is getting 4 daily feeds of 135ml each 4 times per day through her nose tube.  Thankfully she is tolerating them well, except for one episode last night.  I took Maya to the washroom and she started to throw up, i quickly pulled the emergency string in the washroom thinking it was the regular nursing call button, before i knew it, I had like 10 nurses standing in the washroom.  Part of Maya’s nose tube came out, and Maya freaked out, she said noooooo I do not want them to put one in again, and when I turned back to see her, she had put her nose tube back inside :-).   The nurses were laughing and of course they did a test to see if the tube was in the right spot in her tummy and thankfully it was.

Last night was also good as it was the first night Maya did not have any tingling attacks, and did not require any morphine.  Right now they are just watching Maya to see how she reacts to not being hydrated 24/7 and they are monitoring her pain and eating patterns.  All her meds are taken orally now (well, through the nose tube), and they are talking about a possible discharge of mid next week!!!! soooo exciting.   Today, Maya did require a platelet transfusion but after it was completed she went back to being unhooked from her IV pole.

Yesterday,  Maya had a great day, it started with her going to physiotherapy , then taking part of a custome contest on the main lobby (7 kids in total and they all took first place).  Maya could not wait to go trick or treating.  At 1:30pm the BMT kids started the parade.  It was wonderful to go from station to station on each floor.  There were too many beautiful kids.   Maya was wondering what can be better than candy as the childlife lady told her the day before that she won’t get candy, but something better than candy, and so kids got stickers, books, bubbles, erasers, little toys, stuffed animals, etc.   Thanks SickKids for organizing this and putting a smile on all these kids, everyone from the volunteers, doctors and nurses took part to give the kids here a happy and exciting halloween.   When Maya woke up yesterday morning, she saw her nurse dressed as a butterfly and Maya told her “You look infinite beautiful” , yep because there is nothing larger or better than infinite.   My sister Horiana and her 3 year old son Sebas came and Maya had a great time with her little cousin.  After two full  hours of trick or treating she was exhausted and took a long nap. – see some pics below.  Maya cannot wait to go home tomorrow for Halloween, she cannot wait to see her friends.  She keeps talking about her little friend Bridget and also Leana, so we are very happy to take her home for a couple of hours.

 

Because of her VOD, Maya’s radiation will be postponed.  Radiation can cause VOD and right now the doctors want Maya’s liver to fully heal before radiating her stomach area.  If we proceed with the radiation now, we take the chance of damaging Maya’s liver which would also mean jeopardizing her qualification for immunotherapy.   Monday we will meet with Maya’s oncologist to discuss the next steps.  Please have Maya in your prayers and chants, they are really helping and she needs some help now with her  future treatment.

Thank you to all of you.

Indira

Thursday, Oct. 28th – BMT Day 45 (T+36) Kindness, Goodness and Google

I want to start this entry by saying a very BIG, HUGE thanks to the Garron family.  Some of you may be aware that this wonderful family donated 30 million dollars to SickKids this past week (read article on the Globe and Mail). Thirty million, and yes I am excited because it is 30M!!! and  because part of this money will fund Neuroblastoma research at SickKids.  Sick Kids will be one of the first pediatric hospitals in Canada to offer MIBG therapy (yes people a new MIBG treatment room will be built at SK), and yes this could help Maya on her treatment.    When I read the news this past Tuesday I was very close to screaming with joy.   Thanks Garron family!!! you know the anguish, the fear, the tears and all the emotions that go with having your own child battle Cancer, thanks for your compassion and your good heart.  You just have given these children more hope and another chance to life.

Also a big thanks to Spirit Halloween, this company brings a  lot of happiness and smiles to many pediatric hospitals in Canada.  This year at Sick kids, children were invited to pick a halloween custome.  I took Maya to the bear  theater and there were lots of outfits, masks, wigs, and accessories.  I was so touched by all these hospital kids who were so happy and so excited to get a custome.  They were in wheelchairs, carrying their IV poles, wearing helmets, wearing masks (Maya one of them) and they each got a trick or treating bag.  There is halloween parade on Friday at 1:30pm at the hospital and Maya is soo excited, she cannot stop talking about the parade and halloween.

And yet again another big thanks to Maya’s dear friend Ross Maynard and all the people at the Museum of Natural Sciences in North Carolina.  They got together and send Maya a lot of bug related items (tatoos, stickers, coloring books, erasers, glow in the dark bugs,   etc), yes BUGS!  Maya loooves bugs.  Maya met Ross, a Herpetologist, last December in Ecuador.  Ross and my sister Jen (a Zoologist phd at UBC) took our family, including Maya on a night hike at the Jatun Sacha reserve.  Maya looved  seeing all the spiders, bugs, and snakes.  Thanks to them Maya knows so much about insects in general.  Thanks again Ross and your friends at the Museum’s gift shop, you made Maya’s day.

Maya is doing better, however, we are still here at SK as Maya is not  eating much.  She was in TPN/Lipids feeds for over a month.  Now these feeds have been reduced to only 12 hours to give Maya a chance to eat, but she will put 2-3 tablespoons of food in her mouth and then she would say that she is full.  Likewise she is not drinking much.  We talked to the nutriotionist today to start feeding Maya through the nose tube in order to stop the TPN/lipids.  Maya does not longer like what she used to eat before, not even cookies or chips, no, no, no, she just refuses to eat, or she would have a bite and not more.  Today, she did ask for macarroni and cheese, but the boxed one :(.  I was very happy and asked my mom to bring her some of that.  Another thing that has been holding us here is Maya’s neuropathic pain.  Her tingling attacks are not as many as before but when they come, Maya cries and screams.   This morning at 6am she woke up and kept on screaming and screaming, she said “Mom, please do something, help me, make my tingling go away”, this just shattered me and there I was crying with my daughter.  The nurse came in and gave her some morphine and some water for me.  Yes, it is a dreadful feeling knowing that I cannot make her tingling go away, and that I can only be there to comfort her….

Some good news is that the doctors will allow  Maya to go home for halloween for a couple of hours.  Maya is super, super excited about this.  I have to go home and try to decorate the house before sunday.

Yes, we have been at SK for 45 days now, a loong time, but it is a time that I cherish.  I have been able to spend a lot of time with my daughter.  A rollercoaster of emotions, good and bad times…. but the good times are wonderful.  Every day when Maya watches the backyardigans or any other show with music, she would stand up on the bed and start dancing.  She will then ask me to dance.  Or when at night she wants to cuddle with me, and asks me to tell her stories, or the joy of watching her grow, or  use these big words  “dreadful, sophisticated, exquisite, etc” on her daily conversations.   The other night, Maya wanted to play a barbie game in the computer, and then I said ok let me look on the computer, and she said “use google mom, because only Google and God know everything”, gosh i started to laugh and she said “I am serious mom, only Google and God know everything, for real”. Sometimes I forget that Maya is 4 years old….

I end this with a a heartfelt thank you for all your kindness and goodness.  Your prayers, thoughts and chants are surely working.  Today we will meet the radiation team to plan Maya’s next stage, please think of Maya.  Things are a bit complicated as radiation can also cause VOD.   On Monday we will meet Maya’s oncologist to discuss the results of the last MIBG scan and next steps of this treatment.

 

 

Maya and Ross in Ecuador (Dec. 2009)

Night Hike in Jatun Sacha, Maya touching a snake -fearless

 

 

 

Playing Dress up with Maya at SK

 

Monday, Oct 25th – BMT Day 42 (T+33) Manners, Manners, Manners

We had a wonderful weekend.   Maya was unhooked her IV pole 3 hours on Friday, Saturday and Sunday and it was nice to go for walks  and to see family and friends.

Friday, Maya was given meds for anti nausea as she was due for her last dose of lugol and pentamidine (to prevent pneumonia), by 2:30pm Maya was out. By 7pm she continued to sleep and we decided not to wake her up.  Well, Maya got up at 11pm, and she was up until 6am the next morning.  It was Kirby’s time to stay at the hospital, when I got back the next day at around 4pm, Maya had just woken up a couple of hours before and was happily watching TV but Kirby was all beaten up, and he went home right away.

Maya and I made crafts, went out the ward for a walk around the hospital, I took her to the hospital chapel, and then I gave her a bath, she was asleep by 10pm, good sleep for mommy.

Lately Maya has been giving the nurses lessons on manners.  If a nurse blocks the TV while checking Maya, Maya inmediately would say “Please watch your manners, you have to say excuse me” :-).  Maya does not like to be called funny.  While watching TV, Maya was telling me the rules for trick or treating in halloween, she then said “Halloween is a exquisite time of the year” so the nurse and I laughed and Maya got so upset, she told the nurse “You do not have any manners, you are so rude, didn’t anybody tell you that you are not supposed to laugh at people”. Yes these signs of outspoken Maya are signs of Maya getting better.

Maya does not longer have VOD, the Defibrotide was stopped this morning.   Her TPN and lipids have been reduced to 12 hours per day only, and we are all waiting for Maya to catch up on her eating.  Likewise the morphine infusion was stopped and would only be administered as needed, if needed.     Maya still needs platelet transfusions every other day, and she is still taking gabapentine for her neuropathic pain (tingling of the fingers , legs and arms).   Her kidney, and liver seemed are also fine.  We are grateful for her recovery, and at the same time we are tired.  We have been here at SK for 42 days.

Maya is so looking forward for halloween, if she is not discharged from the hospital we are looking into getting a day pass  for Maya to leave the hospital for a few hours, so she can go trick or treating with her friends.   If she does not need morphine by sunday and we can time her meds we should be able to leave or even better if Maya continues to do well we are hoping to be discharged by the end of the week.

Yesterday was a good day for Maya, her aunts Horiana and Carla came to see her with all her primos (cousins).  Maya was looking forward to see them and was so excited.   In the afternoon, 2 year old Sebas, 3 year old Phoenix, 1 year old Connor and 3 month old Lily came to see Maya.  They were not allowed in the ward but we met in the parents lounge.  We had a good time.  Maya and her cousins were running and jumping.  Kirby and I, we both looked at our little one having difficulty walking and running…. Maya tried her best.  Maya is currently undergoing physiotherapy to strengthen her legs as she was in bed for a long time, we hope that her difficulty in walking is due to this and not due to her compressed fractures in her back due to the cancer.  Later in the day Maya wanted to visit her friend Connor Fox, and so it was nice to see Connor and his family on 8A.

We have uploaded some pictures from Maya’s time during her BMT. Click here or in the “more photos” link on the right side.   A couple of pics from the last couple of days below.

Thanks again for your continue support, please keep praying and chanting for our dear Maya, she still has radiation and then immunotherapy left with the hopes of getting rid of her cancer.

Indira

Pics from Sat, Oct 23rd crafts night

 

Maya’s physiotherapy, and during Maya’s VOD -exhausted mom and daughter taking a nap

Friday, Oct. 22nd – BMT Day 39 (T+30) The sun is shining

Kirby and I are exhausted, and it is weird because up to last week we were both fine, but somehow this week it is just pure exhaustion.  Elena (Connor’s mom) said yesterday that when things are critical or not going so well we do not allow ourselves to be tired as we have to be alert and on the go constantly, and it is only when you are over the hump that you allow yourself to be tired.   I think the statement is so true, as it is only this week that we started to feel very, very tired. It is only this week that Maya started to get better and both Kirby and I were able to relax a bit more and with it came the sense of being completely tired.  We have been her for 39 days.  We will be here for at least one more week, and we hope Maya can go out trick or treating with her friends, she is so much looking forward to it.

Yes, the sun is shining, our little princess is doing much, much better.  Maya is also on a much better mood and is back to charming the nurses.  This is a big change because she was grunting a lot at them and telling them they were awful nurses :-).  In the last two days, Maya has been given a couple of hours breaks and therefore she has been freed from all her tubes and has been able to go for walks tube free.

Last night Maya’s abdomen was at 53.31cm (65.5 the largest measure), and  her weight was 17.1kg (19 kg the heaviest).  She still has a bit to lose but we are happy, very happy with the improvements.  Her last ultrasound yesterday showed that there was a tremendous improvement. The doctors are very happy.

Maya has been off the oxygen mask for the last couple of days.  In terms of transfusions she is requiring platelets every other day, which is great as at some point last week she sometimes needed 3 transfusions per day.  Maya also has started to eat, not so much but eating nevertheless.  She will be weaned off the TPN slowly. She is still off the antibiotics as she has not had any fever for several days now.  Yeahhh, things are looking good.

Yesterday was a busy day, Maya had an ultrasound and an MIBG scan (Nuclear scan using a radioactive material -radioisotope- to located the presence of neuroblastoma) .  For the MIBG scan Maya had to take lugol’s iodine solution for 3 days (before, the day and the day after the test).  The lugol’s iodine solution blocks the radioactive uptake into the thyroid.  This solution tastes horrible.  Last time I mixed it with orange fruitopia which worked wonders, but I was not prepared here at the hospital as there was a confusion with the dates of the scan.     Initially the scan was scheduled for wednesday but the doctors said that they would cancel it and have it  on friday instead to give some additional time to Maya to recover as she just started showing improvements from VOD this week.  On wednesday morning the nurse came in to say somehow they forgot to cancel the scan for wednesday and that IGT wanted the scan to take place later in the afternoon as they had already purchased the  radioisotope injection and it was way too expensive not to use it.   I quickly went to try to find  orange fruitopia with no success.  We tried mixing the solution  with orange juice and  with red fruitopia but it tasted horrible.  Poor Maya as soon as she got it in, she would throw up.  From 12pm to 4pm we tried and tried and Maya would constantly throw up.  Even the doctors came in to help but we had no luck.  Maya would cry and say “I cannot help it, it tastes yucky”   I am not sure how expensive is this radioisotope injection that the IGT technician waited until 7pm (she was supposed to be off at 4pm) to give this injection to Maya.

Because Maya could not take the lugol by mouth, it was decided that they would put in a nose tube, and so they gave her some adavent, and in went the tube.  I had to go out as I could not see it.  I heard Maya crying.  Even after they put in the nose tube, and they  injected the lugol solution Maya threw up as she could feel it in her stomach.  Oh boy,  by 5pm they gave her some gravol so she would sleep and then they injected the lugol solution through her nose tube.   At 7pm the IGT technician came up to the room which was nice (instead of us going to the second floor) and gave the radioisotope injection to Maya, by this time Maya was already peacefully sleeping.  Maya still has the nose tube, it was uncomfortable the first day and Maya asked constantly for it to be taken out, but now she is good, and it is more of a blessing as her oral meds are given through the tube and she does not feel it.

The MIBG scan was yesterday, it lasted 2 long hours.  the first hour Maya did great, but after she became irritated, she asked for several breaks because she was sweaty or because she was itchy and needed to scratch.  I do not blame her as it is not nice to be strapped onto this skinny and hard table.  When it came the time for the head scan, she freaked. The flat plaque was on top of Maya’s head  almost touching her nose.  It was nice to have a nurse there whose specific job was to entertain Maya, she was good at distracting Maya.  Every picture takes between 5-10 minutes, and so for that time Maya could not move.  My little girl did fine at the end.

Maya has also been receiving physiotherapy as she spent a long time lying in bed.  She is walking but needs to strengthen her legs.

Thanks again for all your support, I firmly believe that Maya is on her way to a good recovery because of all your support, your chants, your prayers, and your good wishes.  Kirby and I are very thankful.   Maya has shown us over and over again that she is a fighter.  We will continue to fight this cancer alongside our little hero.

Little Things

Most of you guys know what Maya is going through and sometimes we blog about intimate details of the therapy or complications we’ve had.  Well, today I thought I would mention about the bi-products of all the pokes and works that’s been done on her.

Pokes

It is inevitable that Maya get’s pokes.  And it’s also inevitable that Maya will scream and fight to not get it.  She hates it.  Matter of fact, when we ask whether she wants to go travelling again, the first question she asks is whether she’ll have to get pokes (vaccinations).   And often, she’ll say no because of more pokes.

The worst ones are encephalon.  This is a needle she gets after a round of chemo.  It is left in for about a week so that Maya can receive GCSF, which promotes blood cells to differentiate.  Thankfully, no more GCSF.

Marks

There are patches of dark spots all over her chest.  This is from all the tapes she had to have over the time.  There is her central venous line.  This is the on that enters into her chest and down the jugular vein and sits just outside her heart. The dressing must be changed at least once a week.  Because of the CVL, there is an anchor that needs to be taped down as well.

Often Maya’s skin gets damaged when the new skin comes in, it’s patchy dark. I wonder when Maya will end up with soft baby skin she used to have.

Nails

Maya’s fingers and toes are also darker.  The darkness is caused by certain type of chemo, such as melphalan. It is supposed to go away, but it’s not nice.  What is interesting is that you can see distinct bands on her nails, just like tree rings.  So, you can actually figure out when she received chemo, if you know the rate of nail growth.

Scars

There are one dominant scar.  This scar was the gift from the tumor resection / nephrectomy.  It is shaped like a chevron and follows her diaphram.  This is the large one.

On her chest, there is a little scar due to the CVL line.  There’s also a smaller scar from the incision opening up her jugular vein.

On the back side of her pelvis, there are several small scars from bone marrow aspiration procedures.

Tattoo

Maya will also get couple of tatoo’s in the next few weeks.  It won’t be a little butterfly or a heart.  there will be a couple of little crosses tatooed on her. It will be there to use as a guide marker for radiation.

Yes my daughter is a bad ass.  She’s had more drugs than I’ve ever had during my impressionable ages.

Hopefully, these two marks will be the end of tattoo thing for Maya.

 

Prayers and Chants for Little Connor

Hi Everyone,

Connor is a great little boy with Neuroblastoma.  His family was one of the  first NB families we met earlier this year.  Elena and Patrick (Connor’s parents) became our good friends.  Maya and Connor have played several times together.   Connor  relapsed in May and he  could use some help right now – Connor’s Story and updates.

Please say a little prayer for Connor Fox.

Thank you.

 

Our little Maya is doing much better, her weight keeps on coming off little by little.  She went off the antibiotics yesterday which is less fluids going into her.   Yesterday she even went for a walk around the ward.   Today, she was unhooked from her IV pole – no tubes yeahhh – for 45 minutes and we actually went for a walk on the main floor of the hospital – Maya wearing a mask.  Maya wanted to pick a little toy ( a magnet) from the toy shop.   Yesterday also her morphine infusion was reduced from 20mck to 15mck, however at night she woke up a couple of times complaining about her tingling.  The morphine  infusion went back up to 20mck today and Maya had a good day today.   So far so good, and we are sooo very grateful.

Monday, Oct. 18th – BMT Day 35 (T+26) Stop the nonsense….

“Stop the nonsense! Too many people in this room and that’s sooo rude!…it is too early”  These were Maya’s words this morning at 9am when the fellow and the nurse came in to the room for the daily fellow visit.   Maya was still  sleeping and did not like being woken up.  Maya has been sleeping a lot lately.   No more 3am bedtimes, she is tired by 9pm and will sleep until 11am or so.  She does wake up at 4am for vitals and blood work and to pee if she is given lasix.  If we are lucky she would go back to sleep, if not she would be wide awake but not for long.

I have to apologize for not updating the blog, it is just a blur of things since my last update, Kirby and I  are both exhausted, it has been over a month since Maya got admitted and it appears we will be here for at least another 2 weeks.

How is Maya?  The VOD is stable, Maya has not really gotten any worse since last week.  Late last week we started to see very tiny signs of improvement.  Maya has not gained any more weight, but has not lost much of it either.  She peaked at 19kg.  This morning her weight was 18.3kg.  Yesterday it was 17.5Kg and we were happy.  Her tummy measures 63cm, better than 65.5cm last week.   Her blood work has been stable.  Both her kidney and liver seem to be doing fine.  Maya also had an echo and it was  normal.   On friday night Maya went off the oxygen mask, however last night when she went to sleep they put a blower next to her face so she could have a bit more air, but Maya was quick to ask for the oxygen mask, more for comfort, she loves it.  Right now, she does not need oxygen when she is awake.   Another small victory is the decrease on the number of transfusions.  Last week at some point she was getting three platelet transfusions per day.  In the last few days she has had only one per day, and yesterday she did not need any.  However, this morning she just got both platelets and blood (hemoglobine was low) transfusions.   The kidney doctors are coming to see her often and thankfully both her liver and kidney are working fine so far.  We hope, hope, hope that this continues to be the case.    This will be a slow process as Maya will take a while to recover from VOD.  They have warned us to be patient and to take one step at a time, so yes, we will be here for a while….

What is really bothering Maya is the tingling.  Maya is specific about this, when we say ‘where is your pain Maya?’ she is sure to say ‘nooo it is not pain, it is tingling’.   Basically, she has been complaining about finger, toes, legs and arm tingling.  She was put on gabapentin last week, but the medecine takes a week to take effect.   By saturday the tingling had not improved so much so the dose was increased.   So far it seems it is much better, but it makes Maya very sleepy and yes she sleeps most of the day.   The pain team was involved , also the neurology team was consulted  to see where is this pain coming from as one of the chemo drugs that causes the tingling was given to Maya over a month ago.

In any case, it is one day at a time, and yes we have seen a little improvement and we are happy with that.  Maya is more upbeat and not as grumpy as before.  We still need to be cautious though, but so far so good.

We wanted to say a BIG, BIG THANK YOU to all of our friends, co-workers, neighbours and our families (specially my mom, and Kirby’s parents) who have been soo supportive.   We cannot thank you enough for all the food, cards, coffee, gifts for Maya, etc, etc.  But overall thanks for your chanting, prayers and good energy, we surely feel it.

Indira

Wednesday, Oct. 13th -BMT Day 30 (T+21) Cancer sucks

Not a revelation…. Cancer sucks, especially when you have to see little kids go through it, especially when it is your own child who is going through it.

The last couple of days have been tough for Kirby and I, a lot of tears, a lot of silence, and a lot of love.  In spite all of that, our Thanksgiving day was a happy one.  Thankful for all the blessings we have, thankful for our kids, thankful for our little warrior.

Every drug has a side effect, yes the chances are so slim to get these side effects but they are there.  Cisplatin can cause hearing loss….Maya lost her high frequency hearing… Cyclophosphomide can cause hemorragic cystatis…. Maya got it after cycle 2.  Busulfan can cause VOD (veno-occlusive disease is a condition in which some of the small veins in the liver are blocked), and yes Maya is currently fighting VOD.  It seems like  an infinite loop, you get a drug to treat something, but this drug has side effects, and then you have to get another drug to manage the side effects of this second drug and so on.

Last night Maya slept through the night, which was a nice break as we had had a lot of sleepless nights.  Today Maya is looking good, her mood has improved, she is watching TV and talking.  the last few days Maya spent mostly sleeping, and dealing with nausea and throwing up.   Physically her stomach is big, it measured at 61cm this morning, better than last night which was at 65.5cm .  Her weight has been creeping up too, she was admitted at 15.1 kg, and yesterday morning she peaked at 19 kg.  This morning her weight went down a bit to 18.7kg.   All this weight is just fluid because Maya has not eaten anything for the last 2-3 weeks.   All this fluid is in the  lung cavity (pleural effusion and edema) as well as in the peritoneal  cavity.

The staff here is all over her, doctors, nurses, dietitians, pharmacist have all met to make sure Maya is getting all her nutrition and meds in the smallest possible volume, and to ensure that VOD is very much controlled.  Her TPN was cut in half, it is now more concentrated, all the meds that can be pushed are being pushed instead of going through the IV (mixed with saline).  Maya is not allowed to drink, only ice chips.  They are doing their best to control her fluids.  Maya has been getting daily transfusions of platelets (sometimes twice a day, and at some point last week 3 times per day) , so this adds to the fluid count.   The kidney doctors also came to see Maya yesterday, they were called to work with the BMT team to ensure that  Maya’s one kidney is not harmed.   Kirby and I do feel very grateful to be here at SickKids, the staff has been outstanding. We feel that they have been watching Maya like hawks.  Blood work is taken 3-4 times per day, and so we now live in a world of Con Bil, Creat, K, GGT, C02, INR, PTT, etc, measures.

Yesterday we sat down with Dr. Doyle, in the conversation Dr. Doyle mentioned that they were doing their best to ensure that Maya’s liver and kidney would remain intact so she could qualify for immunotherapy.  Immunotherapy (the latest in Neuroblastoma treatment) was the only reason why we put Maya through the transplant.  Maya needed to go through this to qualify for immunotherapy, and to hear that BMT could also jeopardize Maya’s chances to get to immunotherapy was heartbreaking for us.   Maya’s organs need to be in top condition for her to continue with her cancer treatment.   We hope and pray that Maya comes out of this with her organs fully working and she can have a chance to continue fighting this nasty NB cancer.

While everyone around Maya is worried, Maya is doing relatively ok.  Yes she is with an oxygen mask around the clock, and yes she can be moody, but thankfully her stomach is not bothering her.    Yesterday after the long weekend, a lot of the  medications were changed.  Maya’s nausea has been controlled with new meds.   Also, Maya was suffering of a lot of tingling on her feet, which drove her crazy.  This was being treated with morphine but it did not seem to help so much.  Yesterday a new med was ordered and this seemed to help a lot.   Overall, from yesterday we have seen a good improvement, and we hope, hope, hope that things will continue to improve.  We were told that this VOD  will take 1-2 weeks to resolve and so we wait patiently and hope for no further complications ….

Yesterday afternoon Maya had a major meltdown, she was tired and could not longer deal with her left foot and her vagina tingling and she cried and said “I wish I did not have cancer”… Maya has been a tough warrior, she has not really complained about her long stay here, and to hear her say this for the first time was heartbreaking.  I cried with her.  Yes cancer %$@# sucks, it is not fair, not fair for children to have to go through so much.  They could be outside playing, enjoying life, life that a lot of us take it for granted…

Maya continues to be Maya and there had been funny episodes as well, I saw Maya sticking her tongue out to one of her nurses.  Every time this nurse would come in Maya would stick her tongue out.  Maya said that it was because she did not like the nurse.  I am sure the nurse most likely blocked Maya’s view or dared to listen to her heart without asking Maya’s permission :-).  On another occasion one of the fellows came to see Maya, and I think he must have had fish for dinner, and so when he got close to Maya, she screamed “yikes what is that awful smell!”, the nurse and I pretended not to hear her, and she went again ” Mom, it is awful, awful, I cannot stand the smell” 🙂 so I said “Maya, I’ll close the door as someone must be heating up dinner in the kitchen” … yes, my daughter speaks her mind, no tact :-).

Please continue to keep Maya in your prayers, chants, thoughts.  Maya needs to come out of this unharmed.   Also, please think of  Jake (http://jakesteam.ca/ ), he is another Neuroblastoma warrior who is having surgery today to remove his tumor.
Thanks everyone

Indira

Monday, Oct. 11th -BMT Day 28 (T+19) The Elephant

We are 28 days in, since we’ve first checked in for the Bone Marrow Transplant unit.  This is the longest stretch at sick kids.  If we’re lucky, we’ll be here another week or so.  I think it might be longer than that.

As mentioned Friday, Maya has shown some symptoms of VOD.  Symptoms include reverse blood flow in the portal vein, ascites and significant weight gain.  However, we’re still not seeing much of conjugated bilirubin and liver function seems to be normal. There is no hepatomegaly (enlarged liver) and her stomach though distended, is not painful to touch.

The severe case of VOD can be very very bad.  And both Indira and I have been worried about this white elephant in the room.  Each time some test is performed, we wait for the result in anticipation and in agony. The staff assures us that longer we’re out from chemo, less severe VOD is seen to be.   In the past three days or so, Maya’s weight has been taken everyday.  It’s been increasing. Today, we weighed in at 18.5 kg.  This weight is about 1.5 Kg more than Maya’s weight lately.  It also translates into about 1.5 litres of fluid in her body.  The problem is, the fluid is not in Maya’s system. It is just sitting in the lung cavity (pleural effusion and edema) as well as in the peritoneal  cavity.  Maya is dehydrated and at the same time, she has this build up of fluids.  And with each test, we expect the turn of events and when it is not there, we try to rationalize… for the  better outcome.

The two concerns still remains to be her lungs and the kidney function.  The staff here is hoping that ascites will resolve itself as aggressive action over the fluid is taken.  Maya is getting higher  amount of diuretics to reduce the fluid in her system.  The catch is, kidney does not like to be dehydrated and complains by creating more creatinin;  A rock and a hard place.

Tomorrow, there will be another chest X-ray to see what her lungs look like. There is definitely pleural edema.  We can hear the wet cough once in a while.  If the symptoms progress, we will have to put Maya on positive O2 mask to ensure Maya is getting enough oxygen.

Staff will also consult with the nephrology team, if the creatinin level increases.  Maya’s base line is approx, 30.  We are presently at 50.  Creatinin level in the 60’s range is a cause for concern, especially when dealing with a single kidney.

A minor positive note is that the conjugated bilirubin has gone to zero, which also seem to indicate proper liver function.

All we can do now is wait for Maya to bounce back and respond to the treatment. We don’t talk about the elephant.

Friday, Oct. 8th -BMT Day 25 (+16) A lot to be thankful for

Maya, Taylor, Indira and I would like to wish everyone a wonderful thanks giving.  We are very thankful that all of you have kept vigil over Maya and our family.  So, thank you all.  Your support have meant a lot to us, especially during the times when things were tough.

Well, if we sailed through BMT, it wouldn’t be like Maya, would it?  And so, we’re dealing with a complication now.   It is thought, with strong likelihood, Maya has veno-occlusive disease.  It is a side effect of Busulfan. We may also be dealing with pulmonary fibrosis.

Yesterday, Maya had some stomach pain.  So, an ultrasound was ordered.  The results are posted under my (kirby) blog section.

While the ultrasound could not provide conclusive evidence of VOD, some of the symptoms were suggestive of it. The radiologist thought that VOD was likely.

This morning, Dr. Doyle came to meet us to discuss two concerns he had.  Namely, there was slight opacity seen in the chest X-ray, in the right lung.  Presently, he did not know the cause of it.  It could be a viral infection or it could be due to pulmonary fibrosis.  He thought that since it was very slight, proceeding with additional tests would not provide more information.  Since there is something going on in the lungs, Maya was started on antibiotics, although Maya is not febrile.

Secondly, the fluid retention along with sluggish and reversed blood flow in Maya’s portal vein seem to suggest VOD. However, Maya is not showing all the symptoms of VOD;  namely, sensitivity around her liver, hepatomegaly (enlarged liver) and the rise in conjugated bilirubin.  Maya’s AST and ALT levels all seem to be fine as well.  Maya’s creatinin levels are also fine.

For now, fluids have been cut down significantly to try to reduce the ascites.  She’s also onlasix, a diurectic to reduce the fluids more.  Defibrotide has been also ordered as well.  Apparently, defibrotide is not a health Canada approved drug and subsequently, a special case was made on behalf of Maya.  If Maya’s symptoms get worse, it should be available on a timely basis, rather than having to wait an additional period to jump through the red tape.

Clinically, we can see that Maya’s stomach is distended a bit more today than yesterday.  She was complaining of tummy ache yesterday, so additional morphine boluses were given.  Currently, Maya is holding at 10 mcg/K. Today, Maya’s on oxygen, as her blood is not fully O2 saturating.

We wait.  Tomorrow, there will be another ultrasound to see if there’s any change in Maya’s condition.  We hope things will stabilize.

BTW, here is a pop-culture reference link to bilirubin and “Silence of the Lamb”.