Endless Hope | Team Devon

Hi All,

Sorry to keep you waiting, we did get Devon's MRI results last week in January and can't believe what we heard. The tumor shrunk a few millimeters all around which is a-typical this late in treatment according to her Neuro-Oncologist. In addition, the tumor has developed several cysts in the middle which may be an indication of tumor cells dying. We can't tell you how blessed we feel to get such good news. As a result of this reaction, her doctor has decided to keep Devon on chemo for another six months. 

When Sean told Devon that he had good news - bad news she knew immediately what the answer was.  She said "my tumor shrunk and I have to continue with the chemo" right? Although she is a little upset with the continuation of chemo she was happy with the results. We promised her a pool party in the summer to celebrate the end of chemo and hopefully the end of tumor (if there is such a thing).

They are both back to swimming and continue to do great in school.  We are so proud of them.   Although they are both looking forward to spring and summer, they truly enjoyed the 26" of snow we got today.  With Duffy at their heels they jumped through the snow and made snow angels and were back in after 15 minutes.   Everytime I see them playing and being happy little children, I can't help but think how lucky and blessed we are.

So those prayers and good wishes are working. Therefore, pls keep them coming, not just for us but for all of our BT children and their families like Genna, Rosie, Kyle, Lilly, Kira, Lexie, Luke, Jaclyn, Brielle, Zack, Emily, Terry, Samantha, Jake and many many more.

As always, thank you for visiting Devon's site and sending us your thoughts and prayers. Devon does still read the blog and guest entries although we have been attending to this site much less frequently.

 Banu

Hi Everyone,

HAPPY NEW YEAR & NEW DECADE!!!!  Devon is ten years old now. Can you believe how fast time is flying? It has been exactly 2 years and 81 days since her diagnosis; I can tell you the hour we were told: it was 2:10pm in the afternoon on Friday October 12, 2007; that is when time stood still, we lost our breath, our innocence and our life as we know it. We have been so fortunate since however... although Devon has overcome many obstacles since, she has been responding very well to her chemo and the tumor appears to be stable for now.  She is also doing great in school and with her swimming.  She has another MRI scheduled at the end of January and we are hoping and praying for the best.  If this MRI is also stable, she may get a break from Chemo.  Every week for the past two years, Devon has been getting a needle along with many other procedures.... but I am not complaining believe me.  I know that not all our BT Children have been so lucky or blessed (in a strange way).  Therefore, we thank GOD for every minute we are given and for every minute we are together. 

Because of all this googly good stuff, the girls got a little spoiled over the Holidays. For some reason this year, we did not stick to our 3 from 3 Kings, 1 from Santa & 1 from Mom & Dad rule... we got them few more and of course as usual family and friends showered them again; causing their super spoiling (if there is such a thing).   It seams like they got a bunch of practical gifts this year from Santa and the 3 Kings. I think those guys are starting to realize that the girls are growing up (ugh this is happy and sad at the same time for me).   Duffy was happy with all the wrapping and the stuff that dropped on the floor.   Overall it was almost a "Normalish" word that I am so afraid to use.  It was uneventful and that is what we are thankful for. 

So as the new MRI is approaching on January 26th, we are asking all of you to start sending your good thoughts and prayers our way.  In the meantime, we hope that you keep all our BT kids in your thoughts and prayers; as everyday one of them is getting an MRI or some type of medical procedure and struggling with life and death. 

We wish all of you a Healthy, Happy and Prosperous 2010 and a new decade!

Banu

Hi All,

Sorry to keep you waiting. I got an email Wednesday from Devon's Neuro Onc. saying that the tumor is stable; Wooo Hooo! Her doctor thinks that it may have even shrunk a little, when compared to prior MRI, however pathology report called it stable.  The sign of it shrinking is great but we know that it is very difficult to measure at such level of detail; so we are still VERY happy that it is considered stable.  One more stable MRI and Devon may be off chemo. Although, if there is a sizable reduction in her next MRI, then she may be on Chemo until Nov 2010.

We were so delighted to hear the news, we shuffled them from Bookfair on Wednesday to swim practice yesterday so that Devon could do ~600 laps in the pool (which is crazy... but she is amazing, despite being on chemo and all the obstacles, she keeps going strong; God Bless Her). They were both very exhausted. It's like living in bits and pieces. Today we are taking it easy and letting the news finally sink in.

We have been so lucky (blessed?) that things are still going in the right direction for our child but many of our friends, in this community, are dealing with various issues surrounding this illness. So please send your prayers not only to Devon but also to our BT Friends and Families (Genna, Rosie, Lexie,Joseph, Brook, Lilly, Luke, Kira, Terry, Samantha, Kyle, Jaclyn, Emma, Jake, Brielle, Rafie and many more).

Thank you and have a wonderful, healthy and happy Holiday Season.

PS: Devon did get vaccinated for the H1N1 and so did we thanks to Dr. Friendler.

Take Care! Banu

Hi All,

Another MRI date is upon us. Devon is scheduled to have her MRI on November 10th. She is still on weekly chemo and if this MRI is stable then her Neuro Onc. is going to continue chemo for another 3 months. If Devon has 3 consecutive stable MRI's then her Doc. may stop the chemo.  However Devon will continue to get the quarterly MRI until we reach certain level of stability.

The girls had a great Halloween.  Devon was a vampire and Paige opted to be a witch again (her 3rd year). Oh and little Duffy was a pumpkin. Yes we named the dog Duffy (which is close to Murphy). Name was recommended by Devon's Neuro Oncology Nurse Brenda. Thank you Brenda! 

The girls have joined the Mako Shark's swim team and are loving it. Can't wait to meet up with their Nova Sister's and Brother's again to show their improved swimming skills.

Have to run. Please send your prayers for a good MRI result and also remember to keep all our BT kids in your prayers. (Genna, Rosie, Jaclyn, Lilly, Joseph, Brook, Brielle, Kira, Terry, Zack, Emily and many many more).

I will keep you posted once we get MRI results.

Thanks! Banu 

Hi Everyone,

The girls have started school once again and Devon is very excited to be in 4th grade this year.  Can you believe she already had several tests/quizzes and scored 100 in 5 out of 6?  She loves school and loves learning. Paige is in second grade this year and she too loves her teacher and has a more social way of learning :). It's amazing how quickly time passes.  The girls had a very busy and fun summer.  They were on the local swimming team GO WC SHARKS & NOVA! of course, they attended Ronald McDonald camp in the Pocono's for a week (ovenight yea!!!) & enjoyed Devon's Make-A-Wish Nickelodeon cruise on the Royal Caribbean... however it all went by so quickly.  We are slowly settling into fall as we welcome a new member to our family shortly. NO! We are not having a baby (get that thought out of your head folks) but we are adopting a little dog from the SPCA in Lindenwald, NJ. Little mutt that looks so much like Murphy. He is only 8 weeks old and has a dogie cold so we will not be able to bring him home until next week but the girls are going crazy getting ready for our pup.  We got a crate, dog food, treats and many many toys already.  The hard part is finding a name! You can imagine what the dinner conversation is like at our table on a daily basis now... the dog seams to be on their minds 24/7 when suddenly someone just shouts out a name while we are cooking dinner or doing homework or when ever. So you can help by leaving us suggestions on what to name our pup. I am going to try and upload a picture (wish me luck!)

Anyway on a more serious note, as we approache the second anniversary of Devon's diagnosis, we are  both happy and sad at the same time.  Devon is almost a two year survivor of this dreaded illness now.  Despite the challenges she faces everyday with the vision loss, the weekly chemo treatments she endures, the monthly shots she receives, the fevers that send us to the ER and the constant fear of MRI results or what is happening in between,  she is still a very happy little girl and we feel so blessed as a family.   We have many reasons for that.  Devon compensates very well for her impairment , the chemo is manageable for now, the treatments have become nearly routine, folks at CHOP are like friends who we miss when we don't see them, BT families are part of our inner circle, and LIFE disguisingly appears normal between MRI's.  So we are blessed and fortunate because so many in our community today are struggling with much more difficult and severe challenges or have paid the ultimate price as a result of this monster or its treatment. 

Just when I become a little complacent and don't want to go on updating this blog or raising funds for the cure and simply want to forget, I am quickly reminded that we are still in this world and will be forever unless we find that unconditional cure.  Just last Sunday we ended up in the ER with a high fever at 3pm.  Shortly after we arrived, they tried accessing her port (a needle to her chest) three times  unsuccessfully and finally around 10pm they gave up and stuck her hand to put an IV to take blood & give her fluids.  We left at 1:30am and she was exhausted.  I felt pain in my hands where I had dug my nails deep into my palms feeling helpless as I saw my kid in pain.  The next day we still had to take her to the clinic where once again they accessed her port.  The good news is that they did not find an infection and sent her home after giving her antibiotics.  Although, this is a very small incident given the grand scheme of things, it is just part of the BT life that continues to remind us that we are always on that slippery slope. Unless we find that unconditional cure, we have no chance of getting off. 

So this year, I am back on the Dragon Boat Team raising funds for the PLGA foundation and I need your help.  I know this year has been very difficult, from an economic standpoint, for everyone but Devon is still here only because of available technology and treatment she received so far that are made available through research & research grants.  As a mother, I want that unconditional cure for my child and all our BT children and need to fight hard to make it happen.  So please please please, sponsor me in this dragon boat event by sending your donation to the PLGA foundation supporting "Team Devon Dragon Boat Event"... you can either use the link on our page or just go on their web page www.fightplga.org to make your donation. 

Hi All,

Got the word earlier this afternoon and the tumor is "STABLE".  No growth and no shrinking... Stable is good and in-fact it could mean very good in our unpredictable world.  However, it is way too early to say.  If her next few MRI scans indicate stability, her Neuro Onc. would most likely stop chemo and then we will be in the Wait and Watch (WAW)  state... which is even more stressful come MRI time but at least that would mean no more needles, every week, for Devon.... and if things stay stable for a while, then they would take the vital port out (she would be so happy with that... she hates her port). 

But for now, we will take our good news and keep on going. Thank you for all the prayers and good wishes. Remember to keep them coming for all our BT children and families.

Got to run today. Have a great weekend!

Banu