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Saturday, December 2, 2006 10:34 AM CST

Long time since we have updated...

Over the past 60 days Destiny has had
THREE surgeries. With each they felt
we were possibly looking at a secondary
cancer.

#1 Her primary doctor (Lillian Mecham who is over the 'Long Term Survivors' study here in Atlanta), was
concerned about a swelling on her neck. After some test
it was apparent that there was a growth there, on or having
invaded the Thyroid. Once again we met with Dr. Ricketts
(Destiny's initial Surgeon back when she was Three). He
agree that it needed to be taken out, and possibly the
Thyroid along with it. The incision was only about 2",
and the found that the 'growth' was actually SITTING ON
the Thyroid - and had not invaded it at all. And, the
pathology report confirmed that it was BENIGN (although
'possibly' becoming malignant).

#2 Dr Meecham was also concerned about a mole that had
changed on the bottom of her foot. Again it required
'minor' surgery (three stiches), and again it was benign -
although it this case they were SURE it was 'becoming'
a melanoma (i.e. VERY dangerous).

#3 They also had noted that she had lost 8-9 lbs, and
'just to be safe...' they decided to do a CT Scan, on
shich they found a 'lesion' on her kidney. Unfortanately
it did appear to be growing (although rather slowly). Because she only has that one functioning kidney (the left
was invaded by the original tumor, and it has 'atrophied').
SO... she just had MAJOR surgery this past Tuesday and
they found not just the lesion/tumor that they were seeing
on the scan - but one other nearby. They were able to get
BOTH... and we just got the pathology report back and BOTH
were BENIGN...!!!

He recovery has been tough... They had to spead her ribs
to get to the kidney and, understandably, she is in pretty
severe pain and has been on morphine.

So... the war continues. We counted it up and determined
that Des has now stayed at our Childrens Hospital over 25 times...!!! BUT... we are still winning!

Thanks for your responses...

David - Destiny's Dad - Hurst

Saturday, July 23, 2005 11:18 AM CDT

For those who have requested this info, below is the 'short version' of Destiny's history:

She presented with an ugly 'bump' between her eyes in May of 1990. After the normal "it's nothing" responses from her Pediatrician, they finally did X-rays - then sent us up to Egleston Children's Hospital here in Atlanta. Soon after they were focusing on her abdomen, and we began to get that sickening feeling (why were they looking primarily in her abdomen if we came it to check this swelling in her head). Soon after they told us that they suspected that Des had Neuroblastma (and verified this with surgery a couple days later - ON her 3rd birthday - - May 29th). We met Dr. Roger Vega who, in spite of the fact that he was telling us HORRIBLE news about our very precious daughter, we liked immediately.

Dr. Vega asked if they could try an 'experimental' chemo "up front", primarly because her disease was SO extensive - and (we found out later) they were not convinced that a regular protocol of chemo would work. At the same time people of faith (from around this country) began to pray. With-in ONE WEEK of that first Chemo treatment we began to see a HUGE response. In fact, just a few days later they COULD NOT FIND the primary (grapefruit sized) tumor in her abodomen (on physical exam). We were beyond ecstatic!

Soon they started her on a regular protocol which in cluded: Cisplantin, Adrimycian, VP-16 & Cytoxen. We believe her marrow was also clean VERY quickly, and by October there were finding 'zero' response on her scans. But, because her the original pathology report was SO bad (back then they did "Oncogene counts"... her's was 143, which was "off the scales"), Dr. Vega insisted that we continue the plan - which included both local and full body radiation, and a bone marrow transplant. We completed her BMT in FEB of 1991, and at that point she was "officially" considered to be in remission.

When Destiny was first diagnosed we had asked Dr. Vega at what point would he consider her "cured". He responded, "five years of continuous remission". We responded, "so we expect to see you at her Eight Birthday Party"... and he smiled, and promised to be there.

NOTE: 18 months after diagnosis we saw Dr. Vega at a Social event and asked 'why' none of the 'new' NB patients had received that "experimental" chemo that we had seen SUCH an AWESOME and quick reponse from. He said, "I knew you would ask me that someday..." He went on to tell us "of the ten children who received that chemo, 7 are not with us today... of the three who have survived, Destiny is the ONLY one that we saw a substantial response from". We then responded, "But, Dr. Vega... you saw what WE saw with in those first couple weeks..." Being a man of faith also, he just smiled and said "maybe we should look above the clouds, eh?" We truly believe that prayer works...!!!

Then... we had a "True Celebration" on Destiny's NINTH birthday (at diagnosis you aren't thinking that it will take a YEAR... to get to remission)! And... Dr. Roger Vega was our primary speaker... :]!!!

Unfortunately, just over TWO months later... she relapsed! The shock was almost equal to the first time! And, it seemed to effect our dear friend, Dr. Vega, almost as much as us. She had lesions in her liver, and a positive "NB" marrow. Once again we had to put her on Chemo (Taxol and Ifosphimide), and we almost lost her on the first infusion (BEYOND terrifying...!). Then, four months later, we had to make THE most difficult decision of our life. While her marrow was clean, the lesions weren't changing (and, these chemo's were the HEAVY guns...!!!). And, we were convinced that they were KILLING her... SO, we decided to take her OFF treatment, try to get her back to health... and simply trust God. Three months later her scans were "the same", SIX months later her scans were "the same"... NINE months later the lesions had DISAPPEARED... (with ZERO treatment)!!! Besides his customary warm smile, Dr. Vega's response was "maybe we should look above the clouds"! That was September of 1997.

Since that time we have had THREE major scares, and have been told that she has relatively serious lung and heart condition (Esther does an AWESOME job of finding natural remedies which have assisted much in addressing those). With one of those 'scares' they wanted to remove the left lobe of her liver "immediately"! Twice (including that time) we insisted that they do a CT-guided needle biopsy (which were "inflammed 'normal' liver tissue" the first time, and "Cirrhosis" the 2nd. Then, just last year (2004) she began having pain in the bones below her left knee. X-ray's found an OBVIOUS tumor... and, they again assumed this was a 'recurrance'. The MRI & Bone Scan confirmed an active tumor... but, the "Orthopedic Oncologist" who we 'finally' got in to see, VERY quickly eased our fears. He said that it WAS a tumor, but a benign type that he sees in teens "all the time"! ONE MORE TIME... we could breath again!

God's Grace is SO real...! And, we are SO blessed to have our Destiny still with us. While the long term effects will be with her for the rest of her life, and she does get frustrated with being 'different' at times, overall - she seems to understand that she is a "walking miracle", and God has kept her 'for a purpose'.