Monday, November 29 (T + 68) Radiation option opens up

[KHK] goto my blog for the latest on where we stand. Thanks.

Well… It’s hard to believe that we’ve been in BMT for some 50 days or so.  And we’ve been home just shy of three weeks.  These three weeks have been a bliss.  Hospital stays are draining to say the least.  But right now, Maya is well.  Matter of fact, you can almost see her former self; Full of life and spunk and yes, even vinegar.  Maya is also putting on some weight, albeit it is through NG tube feeds.  But, she is Maya and we love her so much for who she is.  You can’t instill “spunk”.

Life outside the confines of Sick-kids have their own unique properties.  Yes, it is a lot less stressful. It brings our stress level down. And that’s when your body catches up to you. The sickness that you could hardly afford blooms when you’re not admitted.  The “I can’t believe our daughter can be so sick” catches up too. And what must we do, now that we have a moment to breath? These are the primary issues that we deal with.  Then, there are clinic days to contend with, the naturopathic doctors to see in the midst of trying to keep Maya entertained as well as trying to make dinners and keep the house clean etc.

The past two weeks or so have been additionally stressful.  We started our journey not on our own.  We’ve met fabulous people, parents and children who are stricken with neuroblastoma. And in the past 8 months, we’ve become close to four families; Connor Fox,Reece Hudson, Jake Schaeffer and Nate Hudson.   These four children and Maya are all neuroblastoma kids with parents who share each others victories as well as set backs.  Reece is NED (No Evidence of Disease)  We can’t be happier for little Reece.  She got away!!!  It reminds me of “The Great Escape” or the “One flew over the Cuckoo’s Nest”.  Yes!!! She did it!!!.

However, there were some setbacks as well.  Connor is not doing so well.  Jake did not respond to chemotherapy and subsequently, Jake’s parents have decided to take Jake to Boston for MIBG-131  treatment.  Sick-kids is over a year away from getting MIBG-131 treatment center set up.  Nate, who was just about  done with immunotherapy treatment,   suffered a relapse and had a brain tumor resection just this past Friday. Please say a little prayer for these children.  They deserve to be well and live free of this horrible disease.

These events were occurring in our surroundings as we were also dealing with a dilemma. Namely, it didn’t look like we were able to qualify for immunotherapy because of VOD. (Veno Occlusive Disease).  Part of the prerequisite for immunotherapy is radiation therapy minimally on the primary tumor site.  The criteria for immunotherapy include:

  • good organ function, including heart, liver and the kidneys (or kidney)
  • Radiation therapy.
  • No relapse or progression of disease.

The studies have shown that radiation therapy do help, despite the fact that there is a small chance of secondary cancer developing some time later.  Now, because Maya suffered VOD, the radiation oncologists did not feel too comfortable radiating Maya, as radiation have also show to cause VOD. If you recall, VOD under severe case is pretty much fatal (96% fatality for severe case of VOD).  If Maya’s VOD returns, Maya will not qualify for immunotherapy.  But if we don’t do radiation, we do not qualify.  If we get the radiation and there is a complication, we do not qualify. Damned if you do and Damned if you don’t.  More over, Maya still has significant amount of disease left over.  And for children like Maya, immunotherapy does not work so well.  Recall that ANBL 0532 consists of three sections:

  • Induction. (Try to reduce the disease as much as possible)
  • BMT. (Through high dose chemo, try to get rid of the remaining disease)
  • Immunotherapy. (address the relapse by getting your body to recognize NB as a foreign body and get rid of microscopic tumors)

Immunotherapy is not really there to “mop up” significant amount of disease.  So then, what can we do?  We are now consulting with Sloan Kettering hospital in NYC. On an initial consultation Dr Modak had the following statements :

  • The fact that Maya has significant disease is a concern.
  • Need to get her to NED.
  • May be necessary to do additional chemotherapy using other chemos.
  • MIBG may be an alternate solution.

Dr Modak had not yet seen the scans and so, he will have more definitive statements  in the next few days .

“Luckily”, the radiation team feels that Maya will receive no more radiation to the liver than what the COG (Children Oncology Group)  guideline dictates.  However, they have no experience dealing with radiating a patient with VOD.  “Luckily”, they are willing to proceed with radiation if we are able to accept the fact that they have no data to support the radiation. In other words, they are willing to “wing it”, if we can accept that we’re going in to an uncharted territory.  What do you do now?

Mean while, we are running out of time.  We are now at T+68.  Radiation therapy as well as the scans must be done  before T+100.  If we agree, Maya will receive 12 radiation treatments to her primary tumor site. We also need a week to get the tests done prior to immunotherapy registration.  So, next few weeks will be very busy.

We have also started a new regiment with the Naturopathic Doctor.  Dr. Weidenfeld was kind enough to put us on an aggressive treatment that has shown progress.  (I will detail it on my blog in the next few days)

Indira and I are in the midst of discussing our options.  If we can at all get treatment in US, we will do it.  We have even talked about picking up and moving to US, if we can make things work.  We are not certain what options are available to us. But, we are looking.

What is clear right now, at least to me, is that we are running out of options here at sick-kids.  Even if we can finish the protocol, it does not mean Maya will be free of cancer.  Our battle is not coming to an end.  We will need to find something to help Maya become NED.  We wish for a normal and healthy little girl.

Please continue your prayers and chants for little Maya.  And also please, say a little prayer for these lovely children, Connor, Jake, Nate and Reece.  We need them all in our lives…

Sincerely…

Kirby

 

Note: Please, please have Connor Fox on you prayers/Chants/good thoughts on Tuesday, November 30th at 8pm. IG.

 

Monday, November 22 (T + 61) ……………..Limbo

I am not sure where to start this post….

Since my last entry where I had mostly good things to report  a lot has happened.  In fact last week was a very busy week, a lot of sadness, a lot of tears, a lot of unknowns.

Our initial understanding that Maya would receive immunotherapy without going through radiation  turned out to be false.  Kirby got a call from Maya’s oncologist last Monday to say that the COG protocol ch14.18 that Maya is receiving would not allow Maya to receive immunotherapy unless Maya received radiation to the primary site.  Dr. Irwin had thought that in a case like this they would waive this or defer the radiation until later allowing Maya’s liver to further heal from the VOD she got during her bone marrow transplant.   Even though immunotherapy is now part of a so called “standard treatment’ for Neuroblastoma, it is still a trial drug- not FDA approved, the Canadian goverment has very strict rules with the qualifications for this study…….

These news were yet another devastating news for us, suddenly our glimpses of hope for Maya were shattered.  Maya’s MIBG scans pre and post transplant are exactly the same, meaning that Maya has still a lot of cancer left (yes 50% less than what she was diagnosed, but still a lot cancer left nevertheless),  she desesperately needs this treatment.

After Maya’s VOD the radiation part of her treatment was definetely a no go, however, given that Maya does not qualify for immunotherapy they asked Maya to go to Princess Margaret (this is where SK sends all the children for radiation) for CT scans to assess the exact location of her liver (Maya’s liver was being pushed by her main tumor and after the right kidney was removed, chances are the liver moved).  It was an appointment as if Maya was going to receive radiation.  A radiation buddy , a blanked and a princess radiation calendar were given to Maya.  She had to  lie down on this  thin foam mattress which hardens, sort of like a cast.  Maya also got two small tatoos on  the right and left side of her waist.  She did not like it one bit, but it got done.  Basically, what the radiation doctor explained is that they did not want to especulate, they wanted to know the exact  position of her organs and calculations will be done as to how much radiation could be given and how much of it could affect the liver….We are waiting for those results, as even if she does get radiation with the hopes of qualifying for immunotherapy, it may happen that the radiation would further affect the liver.   Organ damage would be a cause for not qualifying for immunotherapy, hence it would be another road block as organs functions need to meet a specific treshold  to qualify…. damn if you do it, damn if you don’t.  We’ll know more later this week.

The only place in North America where Maya could possibly qualify for Immunotherapy would be Memorial Sloan Kettering in New York.  After the shock of the news and after realizing that once again our lives are in limbo Kirby and I got our strenght back to careful assess what is happening and plan different avenues to continue fighting this Cancer with Maya.   Early last week, we were so happy, this was going to be our first Christmas in Canada in a while as the last two years we had spent it overseas, but today we do not know where we are going to be.   We have started talks with Sloan Kettering again, and the option of going NY for Maya to receive treatment would be pretty much the only option for Maya to receive immunotherapy and have her survival rate increase to 50-60%.  This would put an enormous stress in the family not only financial but emotional, physical, etc, etc

It is not pretty, it is not a happy picture, there are nights that we look at Maya who is peacefully sleeping and we start to cry… how can she be so sick? The talk with Maya’s oncologist today was also not so good.  She was very open and honest, but her optimism was not there, she was reserved about what would happen, basically she wanted to wait and see the results of the radiation team and was very specific about the need for not only radiation to take place but also after radiation all of Maya’s organs tests need to be good for immunotherapy qualification. There was no “her organs are fine so far” she was being very careful.  Luckily, Maya’s organs are fine so far and we pray and hope and wish that this continues to be the same.  After the talk, I was calm but it seemed surreal, it seemed as if I was floating.  On the way home I was obviously floating too that I almost ran over people twice.  My mind was just not there, and at some point I was afraid to continue driving as I could not concentrate on the road.

Last week, was tough, and busy, just a blur.  We ended up going to emergency on Wednesday night as Maya was complaining of a sore throat.  Luckily it was a quick visit.  Oncology patients are given a room and seen right away in emergency.   The waiting happens if you need to be admitted to one of the wards as there may or may not be any rooms.  This time also we were given a room with its own private bathroom, this is because of Maya’s recent transplant.  After a throat swab Maya was sent home and surprinsingly Maya slept through the nigth and the next day she did not complain of throat pain anymore.

But we have small things to celebrate too, Maya’s platelets are recovering up nicely.  Last week she only required one transfusion instead of the usual two, and today her counts were at 86 yupiii, so far so good.   We are also thankful that Maya is doing well, eating a bit more, lots of energy and just enjoying life.  She is still has neuropathic pain which worsens during the night.  She still has an NG tube for feeds and her meds.  Today at clinic they had to change the NG tube, and it was not pretty, but it could have been worse.  Maya was given adavent in preparation and she got quite high, she was being silly, and the nurse jokingly  said “are you acting like a monkey” and she told the nurse ” noooo I am a human, a pretty human,  I have a bold head and a nose, seee”, yes a beautiful bald head with lots of new tiny hair coming up.

We were also very happy to hear that little Reese, a beautiful 3 year old also fighting Neuroblastoma was able to kick NB’s ass, yes she is NED, NED and we are so happy and so hopeful as well.  Reese and her family were the first NB family that we met on those first few days when Maya was just diagnosed.  Amber gave us so much hope on that first conversation. Thanks Amber, and CONGRATULATIONS to all of you.

In the midsts of all these news we did celebrate Kirby’s birthday, not once but twice.   A quick surprise cake on thursday as Maya was so excited to have her dad have a surprise party.  And on Saturday we invited Kirby’s parents and sister Monica,  my mother and sisters for dinner.  We had 2 Mariachis  come over to serenate  Kirby – a surprise for him- we had quite a good time.  Maya could not wait to see the mariachis, she would ask me over and over again “when are the mariachis coming?” once they arrived, Maya ran to sit with Kirby and covered his eyes so he would not see them.  We had a great time, we even had some latin dancing.  Maya danced with mommy and daddy.   Taylor danced with Maya and Halmony.  It was nice to see everyone happy and for a few seconds put aside the sadness.  Thanks to my mom who helped me a lot with the preparations, without her I could not have pulled out this happy gathering.

Today too I was so touched by one of the BMT nurses.  Maya is a friend of her son, well Maya has never met him, but somehow while on the BMT ward Maya would be very interested on knowing what he was doing and what he liked.  When Maya got stickers she would send her friend some.  Last friday she was Maya’s nurse in the day clinic while Maya received platelets.  Maya asked for her son and we were talking about plans for the weekend.  Her plan was to build a gingerbread house with her son.  Maya got excited and wanted to build one too.  Today at the clinic she had left a package for Maya, and her  four yearl old son had written  his name on the card.  It was a princess castle gingerbread kit.  I almost started to cry.   So thank you and thank you to all of our friends and neigbours and family for all your support.   Thanks to Jenny who we do not know but sent a beautiful framed movie poster with a big picture of  Maya…Maya and her family starring on a  Princess Warrior movie.  We saw it and we cried.  Thanks everyone for your prayers,, chants,  your good thoughts, and good energy our way, if it is not too much to ask please continue to have Maya in your thoughts.

Please also have our dear friend Connor Fox in your prayers, it has not been good for Connor lately.  We love you Connor!!! you and your family have been and are an inspiration to us.
With love Indira

Monday, November 15 (T+54) Life goes on

You can now follow Maya on twitter @maya_pookie_kim

 

Yes life goes on….

Life has been super busy at the Kim’s household, but thankfully Maya is doing great, she is back to her full self, silly, funny, outspoken and sweter than ever.  We have been going to the BMT clinic (which we looove as things run sooo fast there- same location as the cancer clinic but different staff) and no pokes for Maya.   We were at the clinic Tuesday and Friday last week, Maya still required platelet transfusions.   At the cancer clinic a platelet transfusion is given when the count is 10, but for Maya because of her VOD her treshold is 30, and so she has been hovering in the mid 20’s.   Her last set of blood work was great.  Last Friday we saw Dr. Tal (Maya’s new favourite doctor – a position hard to achieve as Maya has pretty high, high standards :-)) she was happy to report, that Maya’s liver enzymes and Kidney measures were back to normal… ahh what a relief.  Based on what she said, I believe that the Doctors were really concerned about Maya’s VOD and how it would hurt her chances to qualify for immunotherapy, but they are now happy that things are back to normal, and we HOPE that things continue to be like that.  Maya’s next round of tests are coming up in a few weeks.  There are days I cannot sleep thinking and thinking about those results.  I want this F%*#$ (excuse my language) NB cancer to go away.  Maya’s prognosis will be much better if the cancer has reacted to the high dose chemo, so please pray, chant, believe, Maya really needs all the support and positive energy that has been coming her way and that has gotten her trhough her treatment so far.

Last week we also saw Maya’s naturopath, we want to be aggressive with the supplements but at the same time we want to watch for Maya’s liver and kidney.  Thank goodness for Maya’s NG tube, we have been able to give her a lot of fresh juice  (although the dietician at sickkids was against the idea as it seems that the sugars in the juice may cause bacteria to grow, but the formula she takes is also full of sugars….anyhow we are making sure we flush with lots of water) mixing all of Maya’s hated vegetables and fruit.   Maya is still not eating much, but she has not lost any weight thanks to the 4 daily feedings, which are a lot of work but helpful.  The drinking is ok, good days and bad days.  Her taste is still off, and there are only a few things that she likes, and again she will not eat much as she feels full right away, but we can see she is eating a bit more every day which is good news.

Sometimes I forget Maya is just 4 1/2 years old, she is so smart, every time she sneezes or coughs, she holds on to her NG tube, she wants to make sure that it will not come out as she knows that if it does, a new one has to be put in and that is just painful.  She does not like her tube but she knows she needs it for her feeds and her meds.    I am dreading the time when the tube has to be changed (only there for a month) in a few days as Maya is nowhere near eating enough on her own.   Maya organized a surprised birthday party for her nanny last week complete with easter eggs :-), and she is soo excited planning a birthday party for her dad.  Maya is a handful too, we have had to be creative with her, especially the days karen is not with us as Maya wants to play constantly, so our new game is playing cinderella, and both maya and me dress up in our princess customes and pretend to be in cinderella’s castle, and so i can get the laundry done, and the dishes and clean the house.  Cinderella and cinderella stepmom’s do all the work ;-).      Maya’s tingling (neuropathic pain) is also getting better, she complains from time to time but is not as bad.    Yes things have been busy but it is so beautiful to see our little Maya just being at home, having family dinners.   Yes it is a big deal to have a family diner for us.  Taylor, our 14 year old, said the other nigh this is so nice to sit together.  My heart ached as yes, this cancer is not a fight that is only Maya’s, it is a cancer that is fought by everyone in the family, including Taylor.  Our boy coming home to an empty home after school, or eating diner by himself for so many nights…. it is not fair for Taylor.   My heart fills with pride and joy when Taylor comes home after school and Maya runs to the door to give him a hug and say “I love you opah”, and Taylor hugs her back and says I love you Maya.   Maya likes to  say “girls rule, boys drool…except my opah” 🙂 . During Maya’s VOD, Taylor and I went shopping  and he desesperately wanted to know why Maya had an oxygen mask “what are the doctors doing?, how are they going to take all that fluid out of her lungs”.  He is a quiet teenager now and to see the despair and anguish for his sister really broke my heart.

Kirby got a bad cold late last week and our paranoia began, we did not want him anywhere near Maya as we do not want Maya to catch anything, she is still immune suppressed.  Kirby went to sleep in another room and Maya and I got our big bed to ourselves.   Maya likes to talk before falling asleep, and in one of those nights she said “Mom I hate cancer, I want to be normal, I want to be normal like you, I want to have hair, and I do not want to have an NG tube, and I do not want my CVL lines”, this was out of the blue, it took me by surprise as we were laughing before that.  It was as if someone punched me in the face, for a moment I did not know what to say, but I said, you are normal Maya, your hair will grow back, your NG tube can come out if you want, your CVL lines will come out after treatment.  She gave me a hug and that night  Maya and I prayed  for her cancer to go away and never come back.   I could not even bring myself to tell Kirby what Maya had said as I wanted to cry every time I rememebered her words.

But not everything is sad, on saturday night Kirby and I went to a concert in casinorama, the tickets were bought loong ago and even though Kirby was sick we still went as we had not been out in a loooong time.  Maya had 3 great babysitters looking after her. She had a great time, and she was up waiting for us when we got back.  She also made sure to call every hour or so to check on us.  Yes Maya is a master of the iphone and rolls her eyes when her mother does not know how to download an application.    Thanks abuelita, Tia Horiana and Karen for looking after Maya.   Unfortunately, after the concert I started feeling sick as well and sunday was just a day to stay in bed, poor Maya she wanted to play and play, but both mom and dad were sick, so kirby and i took turns to play with her while the other rested.

With love

Indira

Discharge Summary (Nov 2nd, 2010)

Allergies

2010-09-27

Aninoglycosides; Reaction: Unknown; Description: Patient has significant ototoxicity and a solitary kidney. Avoid aminoglycosides if possible.

 

Health Issues

2010-09-13 Visit Reason: Stage IV neuroblastoma

Discharge Medications

2010-11-02 Morphine 2 mg PO, Q4H PRN (By mouth every 4 hours as needed)

2010-11-01 Gabapentin  200 mg PO, TID. (By mouth, three times daily)

2010-11-01 Metoclopramide 3.5 mg PO, QID. (By mouth four times daily)

2010-11-01 Ranitidine 30 mg PO, BID (By mouth, two times daily)

Discharge Information

Expected date of discharge: 02,Nov 2010

Hospital Course: Maya is a 4 year old girl with stage IV neuroblastoma that has been treated on the ANBL 0532 protocol and underwent 6 cycles. She had a surgical resection and nephrectormy for the primary abdominal tumor (after cycle 5). She was admitted to the BMT unit for high dose chemotherapy followed by a rescue autologous stem cell infusion. Due to her noted moderated to severe ototoxicity and the fact that she had a nephrectomy and was left with a solitary kidney, it was decided to treat with busulfan and melphalan for her high dose chemotherapy to minimize nephro/ototoxicity.

Maya tolerated her chemotherapy relative well. She had her autologous stem cell infusion on Sept 22nd. She engrafted on day + 12, with an ANC of 1.08.

Maya started having hiarrhea on Sept 25th. Stool studies were negative for viruses on electron microscopy and c.diff toxin was not detected.  Maya became febrile on Sept 27th. She was cultrued and started on ciprofloxacin and piperacillin/tazobactam. The cultures were negative.  On Spet 27th, she also developed significant mucositis (WHO stage IV) requiring a morphine infusion and intermittent boluses. She continued to be on morphine infusion that was gradually weaned as her mucositis gradually resolved. She was off morphine on Oct 25th.

Hospital course continued: On day + 15, she was noted to have acute respiratory distress with abdominal pain and distension. Her CXR showed rt pleural effusion and rt Pneumonia. She was started on IV tazocin, ciprofloxacin and caspofungin.

She had increased weight by 10% from admision. Her abdominal ultrasound showed mod-severe ascitis and abnormal hepatic-portal flow suggestive of Vaso-occlusive disease of the liver. She was started on diuretics and fluid restriction. Defibrotide was started on day + 18 for wrsening VOD symptoms. Maya was closely monitored for weight, abdominal girth and fluid balance. She showed signs of significant clinical improvement gradually and a decision was made to stop defibrotide on Oct. 28th.

Maya was seen by the nephrology team for increased creatinine associated with her diagnosis of VOD. They recommnded to keep her in even or slightly positive fluid balance, to closely follow her renal function. Her serum creatinine and urea were slightly elevated initially but started improving with her overall clinical improvement. She was off diuretics on Day + 33.

Maya was also noted suffer from neuropathic pain; specifically tingling sensation in her finger tips, toes lips and vagina. This was treated with Gabapentin, as per neurology team and pain service recommendations. The pain was well-controlled on Gabapentin.

Maya also had very poor oral intake during this admission. A decision was made to insert an NG tube on October 20th to assist with feeds and medication administration. Maya tolerated the tube well. By discharge, she was receiving four 250 ml feeds of resource Just for Kids 1.5 w w/ Fibre daily, each time followed by 50 ml of water, as well as one “feed” daily of 150 ml of water. This will be continued at home as Maya works on her oral intake. Her goal TFI is 1400 ml  / day.

Investigation results:

Pretreatment Investigations:

GFR: 106 ml/min (Aug 30)

Echo: Good biventricular systolic and diastolic function. No RWMA. No precardial effusion. Normal chamber sizes. Normal septal curvature. Tip of CVL at RA/SVC junction without obvious clot seen.

Normal flow in SVC.

Hearing Screen: Abnormal, suggested hearing aids with referral to ENT (Aug 30). Worsened from previous.

Abdo ultrasound: There is hypoechoic soft tissues seen in the right suprarenal region that may represent residual tumor. The appearance is not typical of fluid collection although it appears to have decreased in size in comparison with the previous CT.

Anechoic fluid collection posterior to the left lobe of the liver, which is slightly smaller compared to previous.

MIBG – may be faint residual increased activity in the thoracic spine, there is faint residual increased activity in the pelvis and proximal femurs, mild MIBG uptake in multiple small foci in the abdomen which appears to be lymph nodes, heterogeneous activity in the upper abdomen with no new abnormalities were seen.

Repeat MIBG on Oct 21: Stable MIBG with multiple foci of increased activity in the spine, abdomen, pelvis and femur, without evidence of new lesions.

Repeat AUS on Oct 21: Normal portal venous flow; imaging consistent with imporving veno-occlusive disease and hepatic function.

 

Diet

  • enteral formulas: Tube feeds.
  • Tube feeds: Resource Just for kids 1.5 with Fibre.
  • Energy Level: 1.5 Kcal/mL (6300 KJ/L)
  • Volume: 150ml QID
  • Route: NG Tube

 

Follow up:

Floow up comments:

  1. Follow up in the BMT clinic at 10 am on Friday Nov 5, 2010.
  2. Return to the ER, if Maya develops a fever or becomes lethargic, develops increased swelling and pain in her abdomen, has a change in her urine color, or for any other new and concerning symptoms.

Vascular Access

Access Information: vascular access CVL

Blood Products Blood products patient received: Red cell concentrate, platelets.

 

Nov 12, 2010 Blood Count

 

Sodium (Blood)140

Potassium (Blood) 4.9

Chloride (Blood) 103

Glucose (blood) H 6.2

Calcium (Blood) 2.48

Phosphate (Blood) 1.68

Magnesium (Blood) 0.79

Creatinine (Blood) 35

Urea (Blood) 5.6

Total Protein (Blood) 73

Albumin (Blood) 42

Bilirubin Conj (Blood) 0

Bilirubin UnConj  4

Alkaline Phosphatase L 147

ALT (Blood) H53

AST (Blood) H 60

GGT (Blood) H47

WBC (Blood) L 2.2

RBC (Blood) L 2.81

HGB (Blood) L 86

HCT (Blood) L 0.249

MCV (Blood) H 88.7

MCH (Blood) 30.4

CHC (Blood) 343

PLT (Blood) LL 36

MPV (Blood) 9.3

Neutrophils (Blood) L1.25

Eosinophils (Blood) 0.03

Basophils (Blood) 0.04

Lymphocytes (Blood) L 0.62

Monocytes (Blood) 0.27

Retic Count Result 0.72

Absolute Rectic Count 20.1

neuroblastoma web site launch

Link: http://www.neuroblastoma.ca

As some of you may know,  a couple of neuroblastoma parents and I’ve been in discussions about starting a neuroblastoma community.

Well… the website has launched.  This website is, for the most part, the efforts of Antonia Palmer and Aaron Hudson.    I am very proud to be involved in this project and hope to contribute significantly in this endeavor.

There’s been a lot of people who have shown interested in volunteering for this cause.  I would like to encourage you to get involved and contribute.  If you are interested, please send me an email.

Check us out at:  http://www.neuroblastoma.ca

My Very Best Regards,

KHK

 

Sunday, November 7th – (T+46) Home sweet home

After 50 Days of being in the hospital Maya got discharged this past Tuesday, November 2nd.  Few days prior to that Maya was pretty much off the IV tubes and was given day passes on Saturday (we celebrated Harapogi’s – Maya’s grandfather- birthday), Sunday (yes Maya came home for Halloween),  and Monday.  The official discharge day was supposed to be on Wednesday November 3rd, but we got to leave a day earlier.  Tuesday was busy with Maya getting a platelet transfusion and an antibiotic that she takes every two weeks to prevent pneumonia.  By Mid-afternoon Maya could not wait to go home, and she kept on asking “can we go now?, can we go now”.  Finally by 6pm all paperwork was done and we were a happy family driving home.

This past week has been busy, busy, busy.  After almost two months at the hospital there is the exhaustion, but also we cannot stop, there is laundry to do, grocery shopping, entertaining Maya, clinic visits, cooking and so the days go  by so fast.  Maya also requires 4 daily feeds via her NG tube, which is also a bit of work.  The eating has been a challenge, Maya is eating a bit more, but 1/2 and egg and 4 tablespoons of soup a day are not enough.  The drinking is also up and down.  Maya is supposed to drink 250ml of liquids (this is to supplement the feedings and the flushings wich add up to 1000ml), but there are days that she would hardly drink 50ml :(.  We have good days too when she drinks 400ml ahhhh, almost  2 cups.  We are sooo happpy when that happens.

This past friday we had to go back to SickKids to the BMT clinic for a check up.  Maya was charming with all the nurses, she is a different kid when she is an outpatient.  Things got going very fast, there was not asking for blood to be drawn from th CVL lines, it was just a given, which was a relief (in the other clinics they do a finger poke for blood work, which Maya hates).   Maya’s blood work was good, liver was good and the creatinine was in the mid-30’s (good for Maya as during her VOD it was fluctuating between 40-50).  Maya got a platelet transfusion and by 4pm we were on our way home.

Also earlier last week, before Maya got discharged we met with Maya’s primary oncologist.   A few things came out of this meeting.  Maya’s radiation will be postponed.   They feel that radiating the site where the tumor was a bit risky as radiation also causes VOD, at this point they want the liver to heal, and the need for radiation will be re-assessed later.

Maya will go directly to immunotherapy, given that she qualifies.  In about 1 month (immunotherapy has to be given between the 60th and 100th day post transplant) Maya will go through another round of tests to see where her cancer is and to get a baseline of all her organs, heart, kidney, liver, etc.   These organs need to be working at a certain level for Maya to qualify, and of course her cancer must not have progressed.  So we are crossing fingers for Maya to qualify.  As it is now with her current numbers she qualifies.  We hope and pray that this is still the case in 1 month.

We also received not so good news.  The MIBG test done post transplant is exactly the same (no change ) from the MIBG taken pre-transplant.  Which means that Maya still has cancer  in her knees, pelvis and lower back.  I was sad, as yes I wanted to hear, that Maya’s cancer was gone or that most of it was gone.   The good part is that there are no new lesions.  My hope is that this MIBG test was done too soon after transplant and that the the MIBG test that will take place in about a month will show better results….. I pray and I hope and I wish….

How is Maya?  Maya is soo happy to be home, she is active and she just blows my mind away.  I cannot believe she was just hammered with all these drugs and went through VOD ( our postings  here did not really reflect how very serious this was).  She takes a few meds at home, and still has the neuropathic pain from time to time, but since last tuesday she has required only 2 morphine boluses.   The eating has been challenging as her taste has changed completely.   We are still trying to figuere out what she likes now.  Maya cannot be in crowds and we have to be careful to not have her close to people who are coughing, sneezing, have running noses, skin rashes, diarreah, and exposure to chicken pox.

For me, it has been  very busy at home, Maya’s beloved nanny Karen is now working two days a week only.  This is  a huge change for us, and our household  is still adjusting to this change, there is too much to do and so little time.   Ahh Karen we miss you.  On these  4 years you have been with us you have become such a big part of our lives.  Karen knows where everything is and can read our minds, especially mine.  Yes, it is a challenge to be karen-less 3 days a week.  Also Maya wants my attention constantly and so it has been hard to be on top of things when I know I have my little one to take care of and play with.  On the plus side, my relationship with Maya has improved tremendously.  Maya has become sweeter and sweeter, and I just looove spending time with her, playing with her, cuddling with her and just looking at her.  I sooo much want to have her for the rest of my life… yes I should not be thinking about these things, but Cancer is real and it is constantly in our lives that we do not take anything for granted and we enjoy every minute of life, and I cherish every single second of my beautiful Maya’s life.

We are back at the  clinic this Tuesday, in fact for the next few weeks we will be going for check ups twice a week until we start immunotherapy…. yep 1 month off, if things go well.

Maya had a great time at halloween at home, thanks to my mom and sister Horiana who came  early sunday morning to help clean up and decorate the house.  Maya had a blast, she was happy to see her friends and cousins.  She did get tired very quickly after  6-7 houses, but she has ‘infinite happy’ to have gone trick or treating.  We did go back to the hospital that night and Maya could not stop telling the nurses all about her halloween night.

Thanks everyone for everything you are doing for us.  If we have not answered an email or a message from you, please know that it is because life is now crazy.  We truly appreciate your gestures, and love for us.  Please keep sending all this great energy Maya’s way, she really needs all the help we can give her.

Lucy and Linda, THANKS, THANKS, THANKS for helping Maya and all of the other kids who are battling Neuroblastoma.   We are sure you guys kicked some ass (excuse the language 🙂 )  in the NYC marathon.  Thanks to everyone who has contributed.  For those of you who have always wanted to donate to the Maya’s fund for Neuroblastoma research, you can still do it : Lucy and Linda run the NYC Marathon in support of Neuroblastoma Research. Thanks!!!

Indira