Tumor Resection + 11, Home sweet home

WE ARE HOME!!!

Apologies for not updating the blog, I did not have a laptop with me.   On Sunday night (7/25) after two nights in the observation room on the surgical floor we were finally given a private room.  After being on a communal room for 6 nights the little private room at Sick Kids was definetely a luxury to have.

Monday (7/26) – Maya got up and actually walked, she was afraid at first but then she continue to walk.  She had also complained of back pain, and xrays were taken.  An echocardiogram  was also done in preparation for upcoming chemo. Maya’s chest tube was  still draining a lot of fluid.

Tuesday (7/27) –  Maya’s chest tube is  draining less fluid, they disconnected the chest tube from the suction on the wall, the plan was to observe how much it drains without the suction.  To get Maya ready to go home, her pain medication hydromorphon (11mg) is now to be taken orally (2.5 ml).   After two doses of oral hydromorphone, Maya’s nurse informeds us that she thought 2.5ml was way too much for Maya’s weight and that she was checking with the pain team.  The dose was then reduced to 1.2ml (less than 50% the original dose).  We expressed our concerns about this and  someone from the pain team would talk to us.  Maya had a great day walking around 5B, 8A and the cancer clinic.

Wednesday (7/28) Busy, busy day.  At 9am the nurse comes and tells us that transport would come to get us at 9:30 am for x-rays.  Then plans changed as Maya had a GFAR (kidney test) scheduled for 10:30 am, since Maya was sleeping I did not tell her of the change of plans.   Maya was sleeping and was fine until we got to the room and realized that it was the GFAR test which by now she knows involves a poke as they have to inject some radioactive material  in her veins to see how quickly her kidney flushes it out.  Maya once again lost it, she screamed, kicked, begged for us not to do it.  Her heart reate went up to 220.  The nurse put in the needle  but the vein would bruise and she could not inject the liquid.  After two attempts the nurse gave up and paged the IV team- which meant an hour  wait.  For Maya it is the anxiety of knowing that she will get poked, after the needle is in she is fine.  It is is very heartbreaking to watch, and this is something we need to work on with her.   While waiting for the IV team Maya thought that pictures were being taken  as she was lying down and strapped to the sliding bed of the GFAR machine.  Maya was happily playing with one of the nurses.   The IV team came, and Maya again got anxious and cried, but this time was so quick, oh boy these people are good.  Two people came in, the needle went in and they were done.  After the test was done, the GFAR nurse gave me a hug and gave a present to Maya.  I could tell she was feeling sad that she poked Maya twice and still could not get it to work.  She was very apologetic.

We went back to our room to wait for the Xray appointment – which Maya did very well.  While waiting for the  xray appointment, someone from the pain team came and explained that two doses of high doses of hydromorphone would not cause any harm to Maya.  She was defensive and said that they converted her IV dose to the oral dose and 2.5ml was correct,  but since I had said that Maya was sleeping a lot after she started to take it orally, they thought about changing it to 1.2ml.   This sounded like bullshit to me, as i only mentioned that Maya was sleeping a lot when the nurse said she thought Maya’s doze was way over for her weight and that she wanted to check with the pain team.  It made me upset, yes I am not a doctor but it does not mean i am a dummy.  I was about to blurt out that i did not believe her, but by this time I was so drained from watching Maya struggle on her GFAR test and the long stay at the hospital, and if I said something  all of my rage and anger would have come out so i just said thanks for the explanation.

Thursday 7/29 First thing in the morning Maya was given adavent to calm her down as the plan was to take the chest tube out.   A resident came in and took the tube out.  Adavent did not help Maya at all and she again screamed in pain when they took the stitches out and pulled out the tube.  Maya was also unhooked from her IV.   They wanted to monitor Maya for a couple of hours before we were sent home.   Then the Resident came back to say she forgot to take one stitch out, grrrrrrrrrrrrrrrrrrr, so we had to put Maya through all that strain again of taking the stitches out.    Early afternoon Maya had low blood pressure and a high heart rate, they hooked her back to the IV for some hydration.  I was all packed and by 5pm they told us that they were keeping Maya one more night to observe her, I was about to cry, and Maya cried as she wanted to go home. Oncology and surgery were debating wether to send us home.  Then plans changed and they said they wanted to do another set of vitals at 8pm.  To make the story short, we were discharged  from the hospital and by 10pm we were home.

We spent 11 days at the hospital, with half of those sleeping on chair.   It was a difficult experience, but thankfully Maya is doing well now.   Maya is due to start her 6th chemo cycle this coming thursday.

Again thanks to all of you who have sent notes, emails, food, cards.  Thanks to the prayer group who come to our hose the sunday before Maya’s surgery and to all of those who have prayed for Maya.  Thanks from the bottom of our hearts.

Indira

Note:   Did you know that rounds on the surgical floor take place between 6am and 7am in the morning.  A team of sometimes 10 people come in.   I am so done with setting the alarm at 6am, quickly go wash up, change and wait for the doctors to come.  I want to sleep for 12 hours straigth :-).   Also thanks Elena and little warrior Connor for dropping by every day this week.

Tumor Resection +3

July 23 8 PM.  Day +3

We are finally on the fifth floor. This is the surgical floor. All the surgeries that are performed at sick kids will eventually end on this floor. So, there are both young and old children here. The kid next to us, who looks to be 16 or 17, has a goatee. Damn. That kid has more hair on his face than I do, period!

Tonight, Maya will be watched in the observation room. It?s a little more relaxed place and it?s a bit less noisy here. There are fewer monitors that can go off. But presently, there are 4 children here with oh? 3 nurses and a doctor. So, it is busy.

Intensive care team does come up here to check on the children on a regular basis. If anything happens, the response will be quick.

Maya is also doing well. She has her scrappy attitude back. Apparently this morning when the X-ray was taken, Maya told the nurse that she was the worst nurse ever.

Two nights ago, the NG tube came out. Last night the small catheter that administered Bupivacane (for the incision) was removed. Late this afternoon her catheter came out. And tonight, we?ll remove the IV in Maya?s left hand. So then, the only thing left in Maya is the pleural drain that removes the fluid. Hopefully that too will come out in a day or two.

This afternoon, we met with the BMT (bone marrow transplant) team. Dr Tal came and provided some information about what we can expect. Overall picture is that Maya has only one more chemo cycle left. This is the vinchristine and doxorubicin cycle. After this cycle, she will go through an entire set of tests to see where she is.

Then come the consolidation cycle, which I call the carpet bombing cycle. She will be given so much chemo, her bone marrow will have died off. Side effects include organ damage (kidney and liver failures, compromised heart function) to death. Two to five % of the children don?t make it out of high dose chemo, due to complications, likely due to infections. On the other hand, most children do make it out with some compromised functions but for that, they gain an additional 20% survival rate over 2 years.

Twenty percent increase in the survival rate is really attributed to immunotherapy. Unfortunately, high dose chemo is a gateway to immunotherapy. With out high dose chemo, immunotherapy is not available to us. I feel like we?re being taken hostage here.

Part of me thinks that high dose chemo will really hurt Maya. My feeling on this is to a degree based on how Maya has reacted to chemo up to now. Not too poorly, but she has gone through quite a bit. And to increase the chemo to 3 times of what she?s seen so far is hard for me to consider. Moreover, no one can tell us how Maya will fair.

So, we are being asked to step into the void and hope that somehow we?ll make it across the void.

We do not need to come to a decision just yet.  I think we may have a month or so to decide.

Right now, recover.  In about a week or so, we start Cycle VI. And roughly around the start of September, we start High dose chemo.

Yeeehaaaw!

Tumor Resection +5

First full day  in the observation room on the surgical floor (5th).

I was able to go home and sleep.   This is the first night that I spend away from Maya, but I needed the break after spending 4 nights sleeping on a chair.  Maya did not want me to leave but once I did she was fine.

Saturday was the the day when finally Maya could eat, she was very hungry on friday night she was telling me what she wanted to eat for breakfast:  fried egg, bacon , toast, cheese sandwiche and cereal :-).  Once the doctors came on saturday morning, they officially gave her the go-ahead for Maya to eat.   Maya had a third of a cheese sandwiche, then throughout the day she had some chicken broth, popsicles and some crackers and cream cheese.

For me it was a very emotional day and  by the end of the day i was a basket case.  Maya’s blood work came back and her glucose was high, her magnesium and sodium were very  low.   To confirm these numbers, especially the glucose they wanted to do additional blood work , which meant that they would not use Maya’s central line (no pain to her if done this way) but they needed to do peripheral blood work .  Apparently this is the protocol as they were giving Maya glucose through her central line and they thought the results were tainted.   In any case, Maya is ok with procedures she is familiar with but she woul freak when needles come into the picture.  Once she realized that they were going to take blood from her arm she lost it.  I could see the fear on her eyes, she screamed and screamed and screamed “Please do not do it,  I am scared of needles, please do not do it, mom tell them not to do it”.  4 people had to hold her.   Her heart rate went up to 21o (her normal is 100), once the needle was in, her vein collapsed and no blood was coming out.   I overheard that this was because she was very anxious.  No blood came out and the phlebotomy team went outside to talk to the nurses.

After Maya continued to cry and ask if they will do it again “will they do it again, will they, will they?”.  She continued to be very agitated and crying,  she wanted to go home.  She had so many questions and her anxiety level was very high.   Maya has so many questions for her age when we said no more blood work now she said “what about later, or at some point, will they take blood?”  Even when we answer the questions, she will continue to ask the same questions over and over again.  At some  point i could not longer answer any of her questions, I could not talk, my brain did not work, I felt  tears  coming down my face.  This is the very first time that Maya sees me crying and she said “Why are you crying mom?”, and i said ” Because I am sad, because I do not like it when you are in pain”, was this the right answer, i do not know, but that’s the only thing i could say to her. I was then able to wipe my tears away very quickly and be a strong mom for her again.  Maya’s anxiety with needles and new procedures  is something we need to work on.

After some discussion, it was decided that they could not do the peripheral way so Maya’s lines were flushed and additional blood work was taken from her lines.  I am thinking why didn’t they do that on the first place, the answer is: they were following a protocol :(.   Results came back and her glucose was fine, but Maya needs to take Magnesium suplements which for now they are giving her through the IV.

I had a nice welcomed break when our dear friend and neighbour Dr. Joe Kim stopped for a visit.  He was very re-assuring about current Maya’s care at Sick Kids.  The rest of the day was filled with anxiety as Maya refused to take any oral medication, she would start to cry and say she was scared it would taste bad.  She did not even want to take tylenol which she had no problems taking before.   Maya also overheard that she needed to sit up on a chair and she started to cry again saying that her tummy would hurt (from the surgery).  And of course Maya was acting up, “Noooo, I do not want that movie, Put that down” and her new line taken from one of her kids movies  “I am going to get rid of you”.  In a room with other people, 2 babies who cannot talk, a teenager and a very quiet 2 year old, our family must appear to be a very colorful one, with Maya screaming and just telling everyone to go away or to not look at her.

One of the nurses said that Maya needed to sit up, unfortunately she had spent too much time in the ICU, and that in the surgical floor they make the kids sit up the second day.  I decided that perhaps we did not need to move Maya to the chair as we did not neet another melt down.   Instead we played with a sticker book and read stories in Maya’s bed but we lifted up the bed, so by the end she was sitting upright in the bed.  Initially when i  i started to move lift up the bed  she complained of a headache and started to cry and said her tummy hurt, and then she said she was nauseous ” I am nauseous, I want nausea medecine” .   Tylenol was given for the headache, but when I asked for gravol, the nurse said she did not think Maya needed it, and she thought it was more of a behavior problem 🙁 ahhhhh, yes of course after all the drama and all the screaming and bossing around the nurses thought Maya was making her nausea up.   She was a very nice older nurse, but when it comes to one’s sick child it is hard to take criticism,  i was ready to start screaming at her ” you would be the same if you had to endure what maya has gone through since she was diagnosed with NB”.   I felt my face getting very red, but I took a deep breath and said,  “It may be so, but please give it to her”.  I mean, Maya had been lying down in bed since monday morning, some headache and nausea the first time she sits up are expected.

While  i was reading her a book, Maya fell asleep ( around 9pm).  I lewer her bed, and I sat down on a chair and flashes of our journey through NB started appearing, I closed the courtains dividing Maya’s space in the room and had a good cry, it was a good cry as it cleansed my soul.  Kirby came around midnight and i went home for another luxurious sleep in my bed.

Sunday is going to be hard as Maya needs to walk.  Maya is going to fight it and she will start to cry as soon as she hears that she needs to walk.  From her sitting up yesterday, I do think her pain is controlled, but it will be hard for Maya to give that first step.   I hope Kirby starts the process of making her walk.  Hoping also that we get moved to a private room.

Thank you all for your thoughts and prayers and thanks for sharing this journey with us.

Indira

 

Tumor Resection +3

July 23 8 PM.  Day +3

We are finally on the fifth floor. This is the surgical floor. All the surgeries that are performed at sick kids will eventually end on this floor. So, there are both young and old children here. The kid next to us, who looks to be 16 or 17, has a goatee. Damn. That kid has more hair on his face than I do, period!

Tonight, Maya will be watched in the observation room. It?s a little more relaxed place and it?s a bit less noisy here. There are fewer monitors that can go off. But presently, there are 4 children here with oh? 3 nurses and a doctor. So, it is busy.

Intensive care team does come up here to check on the children on a regular basis. If anything happens, the response will be quick.

Maya is also doing well. She has her scrappy attitude back. Apparently this morning when the X-ray was taken, Maya told the nurse that she was the worst nurse ever.

Two nights ago, the NG tube came out. Last night the small catheter that administered Bupivacane (for the incision) was removed. Late this afternoon her catheter came out. And tonight, we?ll remove the IV in Maya?s left hand. So then, the only thing left in Maya is the pleural drain that removes the fluid. Hopefully that too will come out in a day or two.

This afternoon, we met with the BMT (bone marrow transplant) team. Dr Tal came and provided some information about what we can expect. Overall picture is that Maya has only one more chemo cycle left. This is the vinchristine and doxorubicin cycle. After this cycle, she will go through an entire set of tests to see where she is.

Then come the consolidation cycle, which I call the carpet bombing cycle. She will be given so much chemo, her bone marrow will have died off. Side effects include organ damage (kidney and liver failures, compromised heart function) to death. Two to five % of the children don?t make it out of high dose chemo, due to complications, likely due to infections. On the other hand, most children do make it out with some compromised functions but for that, they gain an additional 20% survival rate over 2 years.

Twenty percent increase in the survival rate is really attributed to immunotherapy. Unfortunately, high dose chemo is a gateway to immunotherapy. With out high dose chemo, immunotherapy is not available to us. I feel like we?re being taken hostage here.

Part of me thinks that high dose chemo will really hurt Maya. My feeling on this is to a degree based on how Maya has reacted to chemo up to now. Not too poorly, but she has gone through quite a bit. And to increase the chemo to 3 times of what she?s seen so far is hard for me to consider. Moreover, no one can tell us how Maya will fair.

So, we are being asked to step into the void and hope that somehow we?ll make it across the void.

We do not need to come to a decision just yet.  I think we may have a month or so to decide.

Right now, recover.  In about a week or so, we start Cycle VI. And roughly around the start of September, we start High dose chemo.

Yeeehaaaw!

Tumor Resection +2

This is Day +2.

Today was another day of excitement at PACU (Pediatric Acute Care Unit)

We were hoping for the transfer to 5B yesterday but were kept as Maya?s vitals were higher than what the Fellows were comfortable with. So this morning, there was an expectation from everyone that Maya would be transferred out.

The first thing I saw as I walked in the ICU was Maya?s stats. 120 HR, 80/45 BP.This is good. This is very encouraging, I thought. Maya?s baseline is 100HR, 90/60 BP. So she was not too far off from her normal stats.

Through X-ray it was noted that Maya had fluid building up in the pleural cavity. This is the area where the lungs are located. The fluid was building and putting pressure on Maya?s right lung. Secondly, through the day, Maya?s pain came back in her stomach. We went from 30 mcgK to 40 mcgK morphine. 40 is what Maya had when we were first diagnosed with Cancer and was dealing with the compression fracture in her back. We are now back in the similar landscape. On top of the 40 mcgK, Maya is getting additional bolus shots as well as Tylenol. And even with these drugs in her system, Maya can be heard moaning with each breath.

PACU team consulted with the surgeon and they came to the conclusion that draining the pleural effusion (fluid in the area) was probably the thing to do. Or in other words, they?ll introduce a catheter on her to remove the fluid build up.

Around 8:30 PM, the PACU team perform the procedure ant removed the fluid. I was allowed to observe and comfort Maya. The team drained approximately 500 ml of fluid from this cavity. Due to the procedure, Maya?s morphine infusion was increased to 50 mcg/K, the highest continuous dosage ever for Maya.

8:30 PM

Approximately at 8:30 PM, the PACU team started the procedure to drain the fluid that?s been building up in Maya?s right lung area. This morning X-ray showed that there was some fluid build up and it was putting pressure on her right lung. Based on consultation with the surgeon, they decided that it would be best to drain the fluid. The procedure is simple. Basically they put a catheter in the cavity and drain the fluid. That?s it. There were:

  • Primary staff PACU physician who oversaw the procedure.
  • Resident who performed most of the procedure, under the guidance of the primary physician.
  • Anesthesiologist.
  • Respiratory physician.
  • Maya?s nurse.
  • Little ol me.

When Maya saw a group of people congregating around her, she started to get excited.

What are they doing here? What are they going to do to me?

Oh nothing much Maya. They?re just her to take a look at you. They?re going to give you some medicine to make you sleep.

What are they going to do to me? I don?t want to sleep.

She?s already figured out that when she?s asleep, sometimes things happen which she definitely does not like. Smart girl!

The physicians covered up the area and proceeded. They typically do not want the parents to hang around because sometimes the parent will faint or some such thing which distracts the physicians from their task on hand. They did allow me to stay, but I had to sit in a chair just in case I behaved untowardly. It was harder than I expected. To sit, holding Maya?s hand while she was heavily sedated wasn?t so bad. It was the tears streaming down hear left eye, even under sedation and not even being able to blink, that was hard for me to watch. I tried my best to give her the smiling eyes under the mask and the hair net. I hope it helped Maya just a little.

The procedure was as follows:

  • Use ultrasound to determine the best spot to introduce the catheter.
  • Apply local anesthetic to the area. The area was just on the side where her right nipple is located.
  • Make a puncture into the pleural cavity.
  • Extract some fluid. The fluid looked something like diluted cherry cool-aid.
  • Introduce the catheter. At times they were firmly pushing the catheter in.
  • Attach to the draining tube and close (suture up).

They drained over 500 ml of fluid from her right side. The procedure took just under an hour. She is now sleeping off the anesthetic that she received. Morphine was increased to 50 mcg/K, which is the heaviest continuous infusion that she?s received to date.

And myself? I had a good cry afterwards. It?s never easy to see your child suffer. I wonder why it is that Maya should have to go through this.

I started to write all the teams we’ve interacted with in the past few months.  And quickly realized that this list is impressive.  So, here they are:

  • Oncology and Hematology group and clinic. We are primarily under their (Dr. Meridith Irwin) care.
  • Pediatric team on the 7th floor, where we stayed on our initial diagnosis.
  • IGT group (Image Guided Therapy) They?ve provided a number of services on our behalf including:
    • CVL (Central Venus Line insertion)
    • Femoral Catheter
    • MRI,CT Scan, Echo-cardiogram, Ultrasound.
  • Surgical Team including Miracle man Dr. Justin Gerstle.  Apparently, Dr Gerstle performs more NB tumor resection than any other surgeon in Canada.
  • Pain Management Team for helping with Maya?s pain.
  • PACU (Pediatric Acute Care Unit) where we spent some time after Maya?s tumor resection
  • Transplant team. Who have collected Maya?s PBSC (Peripheral Blood Stem Cells) for transplant scheduled in the near future)
  • Radiation Therapy Team to be seen in the near future.
  • Audiology group
  • Emergency team, whose services were essential on a couple of occassions.
  • Social Services (Karen Fung et al)
  • Physiotherapy
  • Music Therapy

[KHK]

It’s April 22nd, 2011.  I ‘ve been reading the posts that I’ve made.  It’s been a hell of a year, 2010.  I wanted to just add a little something to this post. During the procedure, Maya would stare at me intensely.  I didn’t think much of it at the time, but many months later, Maya told me about this procedure.  Of course, she doesn’t really remember much.  But she did tell me that I had four eyes and she was questioning why daddy would have four eyes. I recall at that time, it was unnerving to see Maya staring at me so intently.  I guess I know the reason now.

 

Tumor Resection +2

We are still in a critical care room, which even though the nurse to patient ratio is 1 to 1 we still need to share the room with 3 other patients.   There are no sleeping cots for parents but just a chair.  Some parents do not stay overnight.  Kirby and I have been alternating, with Kirby mainly staying during the day and evening and mom me staying overnight.   My entire body aches by now, yesterday I went home at 6pm and came back at midnight, I had a somewhat good sleep but cannot wait for a bed and a  loooong sleep at some point in the near future.

I have not had the time to write about the days events, but Kirby is doing a good job, so check his updates, i have copied and pasted his last update below.

 

This is Day +2.

Today was another day of excitement at PACU (Pediatric Acute Care Unit)

We were hoping for the transfer to 5B yesterday but were kept as Maya?s vitals were higher than what the Fellows were comfortable with. So this morning, there was an expectation from everyone that Maya would be transferred out.

The first thing I saw as I walked in the ICU was Maya?s stats. 120 HR, 80/45 BP. This is good. This is very encouraging, I thought. Maya?s baseline is 100HR, 90/60 BP. So she was not too far off from her normal stats.

Through X-ray it was noted that Maya had fluid building up in the pleural cavity. This is the area where the lungs are located. The fluid was building and putting pressure on Maya?s right lung. Secondly, through the day, Maya?s pain came back in her stomach. We went from 30 mcgK to 40 mcgK morphine. 40 is what Maya had when we were first diagnosed with Cancer and was dealing with the compression fracture in her back. We are now back in the similar landscape. On top of the 40 mcgK, Maya is getting additional bolus shots as well as Tylenol. And even with these drugs in her system, Maya can be heard moaning with each breath.

PACU team consulted with the surgeon and they came to the conclusion that draining the pleural effusion (fluid in the area) was probably the thing to do. Or in other words, they?ll introduce a catheter on her to remove the fluid build up.

Around 8:30 PM, the PACU team perform the procedure ant removed the fluid. I was allowed to observe and comfort Maya. The team drained approximately 500 ml of fluid from this cavity. Due to the procedure, Maya?s morphine infusion was increased to 50 mcg/K, the highest continuous dosage ever for Maya.

8:30 PM

Approximately at 8:30 PM, the PACU team started the procedure to drain the fluid that?s been building up in Maya?s right lung area. This morning X-ray showed that there was some fluid build up and it was putting pressure on her right lung. Based on consultation with the surgeon, they decided that it would be best to drain the fluid. The procedure is simple.Basically they put a catheter in the cavity and drain the fluid. That?s it. There were:

  • Primary staff PACU physician who oversaw the procedure.
  • Resident who performed most of the procedure, under the guidance of the primary physician.
  • Anesthesiologist.
  • Respiratory physician.
  • Maya?s nurse.
  • Little ol me.

When Maya saw a group of people congregating around her, she started to get excited.

What are they doing here? What are they going to do to me?

Oh nothing much Maya. They?re just her to take a look at you. They?re going to give you some medicine to make you sleep.

What are they going to do to me? I don?t want to sleep.

She?s already figured out that when she?s asleep, sometimes things happen which she definitely does not like. Smart girl!

The physicians covered up the area and proceeded. They typically do not want the parents to hang around because sometimes the parent will faint or some such thing which distracts the physicians from their task on hand. They did allow me to stay, but I had to sit in a chair just in case I behaved untowardly. It was harder than I expected. To sit, holding Maya?s hand while she was heavily sedated wasn?t so bad. It was the tears streaming down hear left eye, even under sedation and not even being able to blink, that was hard for me to watch. I tried my best to give her the smiling eyes under the mask and the hair net. I hope it helped Maya just a little.

The procedure was as follows:

  • Use ultrasound to determine the best spot to introduce the catheter.
  • Apply local anesthetic to the area. The area was just on the side where her right nipple is located.
  • Make a puncture into the pleural cavity.
  • Extract some fluid. The fluid looked something like diluted cherry cool-aid.
  • Introduce the catheter. At times they were firmly pushing the catheter in.
  • Attach to the draining tube and close (suture up).

They drained over 500 ml of fluid from her right side. The procedure took just under an hour. She is now sleeping off the anesthetic that she received. Morphine was increased to 50 mcg/K, which is the heaviest continuous infusion that she?s received to date.

And myself? I had a good cry afterwards. It?s never easy to see your child suffer. I wonder why it is that Maya should have to go through this.

I started to write all the teams we’ve interacted with in the past few months.  And quickly realized that this list is impressive.  So, here they are:

  • Oncology and Hematology group and clinic. We are primarily under their (Dr. Meridith Irwin) care.
  • Pediatric team on the 7th floor, where we stayed on our initial diagnosis.
  • IGT group (Image Guided Therapy) They?ve provided a number of services on our behalf including:
    • CVL (Central Venus Line insertion)
    • Femoral Catheter
    • MRI,CT Scan, Echo-cardiogram, Ultrasound.
  • Surgical Team including Miracle man Dr. Justin Gerstle.  Apparently, Dr Gerstle performs more NB tumor resection than any other surgeon in Canada.
  • Pain Management Team for helping with Maya?s pain.
  • PACU (Pediatric Acute Care Unit) where we spent some time after Maya?s tumor resection
  • Transplant team. Who have collected Maya?s PBSC (Peripheral Blood Stem Cells) for transplant scheduled in the near future)
  • Radiation Therapy Team to be seen in the near future.
  • Audiology group
  • Emergency team, whose services were essential on a couple of occassions.
  • Social Services (Karen Fung et al)
  • Physiotherapy
  • Music Therapy

Tumor Resection +1

Maya is still in the ICU, I am running on fumes now and have not had a chance to sit down and write , but Kirby has beenupdating his blog, here is his latest update:

July 20th 9 AM.

Maya slept most of the night. She was uncomfortable enough that the morphine dose was increased from 20 mcg/K to 30 mcg/K. In addition, Maya has a couple of tiny catheters placed just above her new scars. These catheters deliver a numbing medication (like novocan) to numb the cuts she has now. They are just below her rib case in the shape of a chevron. Immediately, I became a huge fan of this apparatus.

She woke up a couple times to ask for water. She is quite parched, but giving her more than a tea spoon or water is forbidden. The water will activate the stomach to excrete more fluid (acid, bile) which we do not want. It also makes Maya nauseous and wretching will definitely cause her pain.

There are many lines coming out/in from Maya.

  • There is an NG (Nasal Gastric) tube. You can see bits of old blood coming out from her stomach. The color of the fluid is somewhat green from the bile that is excreted into the stomach.
  • Her CVL is connected to the IV pole.
  • Maya has an automatic blood pressure and heart monitor.
  • She has the two catheters for the pain blocker for the incisions in her stomach. The pain medication is like Novocain and numbs the area where her incisions are. She is also catheterized for the urine. They have been monitoring the urine output to ensure that her only kidney is working fine.
  • She has two additional IV, one to monitor the ABP (arterial blood pressure) and the other that wasn?t removed after the surgery.
  • She also has a monitor inserted into her CVL that measures the blood pressure just outside her heart.

Over the night, there were two concerns that were monitored carefully. Firstly her heart rate was elevated. Elevated heart rate could be due to the trauma of the surgery itself and/or due to loss of blood. Maya was given two pints of blood during the surgery.Additionally, Maya?s blood pressure was low. Her vitals over the night were 150 ? 180 BPM and 60/33 ? 80/55. Maya?s normal ranges are 100 BPM and 90/60. To lower her heart rate and to increase the blood pressure, Maya was given salin boluses to increase the fluid level in her system.

Maya is awake and watching T.V. She is swollen and all puffed up. Apparently, this is quite normal for post operation recovery process.

The feeling of helplessness is palpable at times. But then, I think how fortunate we are to receive one of the best cares that one could receive. I think about the parents who don?t have access to such care. Or for that matter, don?t get any care at all. For these parents, I offer my heart felt sympathy. I can not imagine what it would like to be in their shoes.

We pray that their suffering is alleviated.

Tumor Resection +1

Maya is still in the ICU, I am running on fumes now and have not had a chance to sit down and write , but Kirby has been updating his blog, here is his latest update:

July 20th 9 AM.

Maya slept most of the night. She was uncomfortable enough that the morphine dose was increased from 20 mcg/K to 30 mcg/K. In addition, Maya has a couple of tiny catheters placed just above her new scars. These catheters deliver a numbing medication (like novocan) to numb the cuts she has now. They are just below her rib case in the shape of a chevron. Immediately, I became a huge fan of this apparatus.

She woke up a couple times to ask for water. She is quite parched, but giving her more than a tea spoon or water is forbidden. The water will activate the stomach to excrete more fluid (acid, bile) which we do not want. It also makes Maya nauseous and wretching will definitely cause her pain.

There are many lines coming out/in from Maya.

  • There is an NG (Nasal Gastric) tube. You can see bits of old blood coming out from her stomach. The color of the fluid is somewhat green from the bile that is excreted into the stomach.
  • Her CVL is connected to the IV pole.
  • Maya has an automatic blood pressure and heart monitor.
  • She has the two catheters for the pain blocker for the incisions in her stomach. The pain medication is like Novocain and numbs the area where her incisions are. She is also catheterized for the urine. They have been monitoring the urine output to ensure that her only kidney is working fine.
  • She has two additional IV, one to monitor the ABP (arterial blood pressure) and the other that wasn?t removed after the surgery.
  • She also has a monitor inserted into her CVL that measures the blood pressure just outside her heart.

Over the night, there were two concerns that were monitored carefully. Firstly her heart rate was elevated. Elevated heart rate could be due to the trauma of the surgery itself and/or due to loss of blood. Maya was given two pints of blood during the surgery.Additionally, Maya?s blood pressure was low. Her vitals over the night were 150 ? 180 BPM and 60/33 ? 80/55. Maya?s normal ranges are 100 BPM and 90/60. To lower her heart rate and to increase the blood pressure, Maya was given salin boluses to increase the fluid level in her system.

Maya is awake and watching T.V. She is swollen and all puffed up. Apparently, this is quite normal for post operation recovery process.

The feeling of helplessness is palpable at times. But then, I think how fortunate we are to receive one of the best cares that one could receive. I think about the parents who don?t have access to such care. Or for that matter, don?t get any care at all. For these parents, I offer my heart felt sympathy. I can not imagine what it would like to be in their shoes.

We pray that their suffering is alleviated.

Tumor Resection +1

July 20th 9 AM.

Maya slept most of the night. She was uncomfortable enough that the morphine dose was increased from 20 mcg/K to 30 mcg/K. In addition, Maya has a couple of tiny catheters placed just above her new scars. These catheters deliver a numbing medication (like novocan) to numb the cuts she has now. They are just below her rib case in the shape of a chevron. Immediately, I became a huge fan of this apparatus.

She woke up a couple times to ask for water. She is quite parched, but giving her more than a tea spoon or water is forbidden. The water will activate the stomach to excrete more fluid (acid, bile) which we do not want. It also makes Maya nauseous and wretching will definitely cause her pain.

There are many lines coming out/in from Maya.

  • There is an NG (Nasal Gastric) tube. You can see bits of old blood coming out from her stomach. The color of the fluid is somewhat green from the bile that is excreted into the stomach.
  • Her CVL is connected to the IV pole.
  • Maya has an automatic blood pressure and heart monitor.
  • She has the two catheters for the pain blocker for the incisions in her stomach. The pain medication is like Novocain and numbs the area where her incisions are. She is also catheterized for the urine. They have been monitoring the urine output to ensure that her only kidney is working fine.
  • She has two additional IV, one to monitor the ABP (arterial blood pressure) and the other that wasn?t removed after the surgery.
  • She also has a monitor inserted into her CVL that measures the blood pressure just outside her heart.

Over the night, there were two concerns that were monitored carefully. Firstly her heart rate was elevated. Elevated heart rate could be due to the trauma of the surgery itself and/or due to loss of blood. Maya was given two pints of blood during the surgery. Additionally, Maya?s blood pressure was low. Her vitals over the night were 150 ? 180 BPM and 60/33 ? 80/55. Maya?s normal ranges are 100 BPM and 90/60. To lower her heart rate and to increase the blood pressure, Maya was given salin boluses to increase the fluid level in her system.

Maya is awake and watching T.V. She is swollen and all puffed up. Apparently, this is quite normal for post operation recovery process.

The feeling of helplessness is palpable at times. But then, I think how fortunate we are to receive one of the best cares that one could receive. I think about the parents who don?t have access to such care. Or for that matter, don?t get any care at all. For these parents, I offer my heart felt sympathy. I can not imagine what it would like to be in their shoes.

We pray that their suffering is alleviated.

Tumor Resection

It’s been a long day.  Will fill in the details as we get the chance.

Maya’s surgery started at 8 AM and finished around 8 PM.

Dr Gerstle, Maya’s surgeon saved her left Kidney. It was left in a “pristine” condition.

Based on his discussion with Dr. Irwin, Maya’s oncologist, they decided that removing the tumor was important enough to sacrifice Maya’s right kidney. For that,  Maya has complete tumor resection in her abdomen.

Thank you Dr Gerstle (and Dr. Irwin) for my little girl today.

Thank you to all who kept a vigil over our little girl Maya. We are again, grateful.  Also, thanks to our friend Elena for keeping us company and lifting our spirits.

Sincerely…

July 19th, 2010

Today is yet another day that we?ll remember for a long time. As we got closer to today, our anxiety level have increased steadily. At 2 AM, I was still up, trying to push tomorrow back just a bit longer. If I don?t sleep, tomorrow won?t come. Three hours later, we were up blurry eyed and tired.

Few hours earlier, Maya clued in on the fact that we were reading a lot of ?operation? books and that an operation was in store for her. She did not want an operation and cried. ?I?m scared of the operation?? Indira chided her and after what seemed like hours, finally got Maya to fall asleep.

At sick kids, we went through our usual pre-procedural steps.

  • Check in.
  • Get to the fifth floor and check in there. Wait.
  • Went back down to the second floor for prep. Maya was frightened and held on to Indira for a good long while. Child services practitioner came by and played with Maya. They blew bubbles through the gas mask that Maya was going to wear.
  • Sign concent forms.
  • Maya got some medication to ease her anxiety. 30 seconds is all it took for Maya to get glassy eyed with a goofy grin on her face. Yup. Flying high as a kite. She should be listening to ?Dark side of the moon? right about now.
  • Kiss my little girl just one more time before she was taken away. Both Indira and I wipe away the tears? We know everything will work out just fine, but on this side of surgery, one?s imagination can run amok.

We had few minutes to talk with the surgeon during the preparation. Dr Gerstle, the surgeon said that there were no significant changes to his original plan based on Maya?s May CT scan. The primary tumor for the most part is stable. The lymph node seems to have enlarged a little. In June when we had the first presurgery consultation, he was very confident that he could save the left kidney. When I asked him if he felt equally confident, he stated that he was somewhat confident. He won?t know until he gets in.

Looking at the CT and MRI is not the same as looking at the mass directly. The scans will not provide the resolution required to determine the morphology of the tumor. Is it dead or matured or still viable? We won?t know until we get the pathology report, which will take a week or more. So, more waiting is in order. Is the chemo cocktail doing its thing? Certainly it is, to a degree. We don?t know to what degree.

So, the waiting begins. It is 8:30 AM. Waiting area is a lounge with a couple of nice volunteers who manned the phones. They help relay information to the parents from OR. There is a large LCD screen that has children?s initial and their present state.It?s not much different than the Air plane schedule at any given airport. Everyone stares at it.

So, here we are. I look over to the board that lists the children in surgery. The board says, Ki,M (6E4), ?In OR?. We were the first few listed in the morning. The waiting begins.

Around 11 AM, we got word from OR that Maya?s left kidney operation went smoothly with excellent results and that the surgeon is starting on the right kidney. I sigh the sigh of relief. OK. So, we?re in a relatively good spot. We are assured that Maya will have at least one kidney. Hopefully we can save the right kidney as well.

Time drags on. Only two minutes later, I glance over to the LCD screen again. Still I see Ki,M. Still in OR. As time passes ever so slowly, I feel the pressure build inside of me. It feels like a bomb that is just seconds from exploding. I must take deep breaths and that seems to release just an ounce of pressure that mitigates the fear of the explosion, even if for a minute or so.

Since the morning, surgeons have been intermittently coming into the waiting area, all talking to parents like us? The overheard conversation all seem to have gone well. Other parents sigh their sigh of relief.

At 3:30 PM, we get more words that everything is going well, but they?re running overtime. I thought that was rather good news. I hope that means the surgeons are able to save the right kidney. Finally at 7 PM, we get the word that Maya is done and that everything went very well.

Dr Gerstle, after discussing the situation with Maya?s oncologist, Dr Irwin, decided to remove the tumor and sacrifice the right kidney; the price for a total tumor resection. There is no visible (or felt) tumor in Maya?s abdomen. Dr Gerstle felt that the surgery went very well, albeit took longer than anticipated.

We were told that Maya will be sore and uncomfortable for a couple of days. She is to spend a night in ICU followed by a couple of days in observation area on the fifth floor. Subsequently, Maya will recover on the fifth for a few more days.

When finally we got to see Maya around 8PM, I thought that Maya looked remarkably well, given that she had been in surgery for close to 12 hours. Of course she had tubes coming out everywhere and there were staple marks where there once used to be pristine smooth skin. Scars of life has started early for my little girl.

As I wipe the tears away from my eyes, I can still put my hand on her little feet ever so slightly and be thankful that I still have the possibility to touch my little girl.