Rest In Peace Alex

Alex was a little boy, 5 years old.  We met him first, when we were visiting St. Justine’s in January.  And when we met him, he was going stir crazy and threw a temper tantrum, when Maya could not go into the room to play with him. Alex was getting the MIBG treatment ahead of Maya.

Although we ran into Alex and his family on a couple of occasions at Sick kids after MIBG, we never got the chance to get to know him or his family.

So, why is it so hard to hear of his passing?

It is because all neuroblastoma children belong to all of us neuroblastoma parents.

Rest In Peace Alex.

www.alexbeaudry.com

March 13, Post MIBG Therapy Scans this week

Some pics from this year.

 

It has been over a month since our last post.  We added a twitter feed window to this blog to post quick updates.  Maya started having transfusios 3 weeks after the MIBG infusion, mainly platelets, but last week her hemoglobine was very low and a blood transfusion was also given.  2011 was a transfusion free year for Maya.  The chemo she was getting did not affect her blood counts.  In the past she never got reactions with any blood products, but this year, in transfusion number 3, she broke up in hives, thankfully the wonderful doctors and nurses were quick to have this under control.  Now Maya has to be pre-medicated before any transfusion, which means, benadryl and a grogy, mad and sleepy child.

Maya is also getting GCSF shots to boost her white cells.  We have stopped the injections twice, only to see her counts drop very quickly to the point of her being Neutropenic.   Maya’s daily injections are administered via an insuflon catheter, which needs to be changed every week.   The insuflon eliminated needle pain, however, we still need to inject the GCSF very, very, very slowly for Maya not to feel any pain.  To insert the insuflon, an emla patch is applied for 3 hours  then  an ice pack 5 minutes before inserting the insuflon, and voila, Maya does not feel it.  This used to cause a lot of tears and terror back in 2010.  Gosh, Maya has grown, we have all become more savy,  adding a lot of nursing skills to our resumes.

How is Maya doing?  Maya continues to amaze us, she is always running around.  Maya has been able to attend school a few days since the MIBG therapy.   Yes, we spend a lot of time at the hospital, and there is a lot of blood work done, transfusions, etc, but hospital visits have become part of who we are, in a way we are used to it.  It is weird to say it, but yes that’s what we do.  SickKids has created a nice environment for the kids on the 8th floor where the cancer clinic is, and so Maya does not mind going as she knows that she will not be hurt, she knows the routine and she knows that she will have a lot of fun with the Oochvolunteers.   If not at the hospital or at school, Maya is at home with her friends, there is always a  friend for a playdate, and for that we are thankful.  Aside of the long hospital visits, mainly due to the waiting around, MIBG therapy has been definetely much easier than chemo.  It is expected that Maya fully recover 8-10 weeks post MIBG therapy, and so we are on week 7.  We are hoping that her bone marrow will recover on its own, otherwise a stem cell transfusion will need to take place.   We would rather keep the 2 remaining bag of stem cells we have for the future .

If you recall, back in November 2010,  Maya was recovering from her bone Marrow transplant.  She developed VOD and after much talk with her medical team, we opted delayed radiation (the next step of her treatment) to give her liver a bit more time to heal, this meant that Maya was out of the protocol and could not go to the last step which was Immunotherapy.  Initial studies showed that Immunotherapy gave an additional 20% survival rate to Neuroblastoma kids, going from 40% to 60%.  We had consulted with Sloan Kettering in New York, and the plan was to reduce Maya’s cancer and then travel to NY to receive the therapy there.  This put additional stress as the retainer fee was and is of $350,000, and no the Canadian goverment will not pay for this treatment in NY.

By the end of last year, we became aware that a second phase Immunotherapy trial was going to open on the children oncology hospitals (COG) in North America, SickKids being one of them.  We wainted, and waited, but it opened and closed quickly, then we decided to proceed with MIBG therapy, and 2 weeks ago, the trial opened again, and it is now available at SickKids.  We are so excited, well, cautiously excited as Maya is still recovering from the MIBG therapy she received in Montreal, plus she needs to go through a whole bunch of tests to see if she qualifies for this trial, and so it is a matter of timing.   We hope that by the time Maya recovers the trial is still open as these trials close and open very quickly.  Gosh, we are crossing fingers so we can do this here at home.  This would also imply that the COG will cover all the costs.

Jake, also a Neuroblastoma warrior, is currently receiving this therapy here at SickKids, he is in our thoughts and prayers daily.

This week is very busy for Maya, she has a CT and MIBG scans, this is a follow up from the MIBG therapy, we are crossing our fingers and thoughts and hoping and praying that all that radiation really busted those nasty neuroblastoma cells.  We have had no progression news for over a year (which is also good), but gosh we would love to hear that the remaining cancer is going away.  As usual for me, every time these scans are going to take place, anxiety takes over, fear takes over, sleepless night take over, and Neuroblastoma just sucks the life out me, but another day comes and I see Maya’s smile and with that comes hope…

Thanks everyone for following Maya’s story, we’ll update you more often, and we ask you  to please, please have Maya and Jake and all those kids suffering from pediatric cancer in your prayers and thoughts.

Indira