About Lisa

On August 27, 2004, the subject heading in the email we sent to family and friends read “A warm welcome”.  We were delighted that Tommy age 6, and Christina age 5, had been placed in our home by our foster agency. Our biological daughter, Maranda age 7, was ecstatic about having a sister and brother and used her own money to buy each of them a gift from the Dollar Store. The email ended with a request that everyone keep us in their prayers so that we could do right by these children.

On August 31, 2004 Tommy and Christina’s little sister Lisa Marie was born in a hospital in Northern Michigan. 

 

On September 2, 2004 we received a call from the agency asking if we would like to have Lisa placed in our home so she could be with her siblings.  "Absolutely" was our response.  The subject heading in the email the September 4, 2004, read “Hold on to your hats'" and we expressed our joy to everyone about being blessed with this little baby.

 

Being foster parents for the second time, we knew that our latest additions would most likely be temporary, but we tried to focus on what we had in the moment.  For the next three and a half years we raised the children equally, but we also took time to take the children to visits with their biological parents. We also attended court hearings on the childrens behalf and all the while wondered if perhaps one day we might become their forever family.

 

Three and a half years later after they arrived, in March 2008, the Oakland County Court decided that returning the children to their biological parents was not in the childrens' best interest and terminated the parental rights of the biological parents. As sad as that was, we knew we could continue provide them a safe and loving home.  About that same time we started to notice that Lisa was having leg and back pain.  While she couldn’t really verbalize what was going on, she was irritable and having difficulty sleeping. We also noticed that she was limping and having trouble going up and down stairs.  We took her to our family doctor who took x-rays and ran a number of tests but they revealed nothing of interest.  We also took her to our chiropractor who was able to alleviate some of her pain which seemed to resolve her sleep problems and allowed her to move much better.

 

In March 2008, we sent an email titled “Great News”.  In it we shared the news that ”We are one step away from being a forever family!! We got the call last week that all paperwork is in and completed on Thomas, Christina and Lisa.  Next step is just a quick trip to the court to sign final documents on April 7, 2008 .YAHOOOOOOOOOO!!!!”  Once again we asked family and friends to keep us in your prayers as we moved towards finalizing the adoption.

 

April 7, 2008 went without a hitch and we became a forever family.  We celebrated with family and friends and planned a trip to Disney in May.   At the same time, we noticed that Lisa’s condition had reappeared.  The email to the doctor read “Lisa had a restless night and slept late this morning but kept crying out in pain.  When she finally woke up, we had to get her out of bed and she complained her leg hurt.  She limped all day and we ended up carrying her whenever she need to go up stairs or fast….There doesn't seem to be any rhyme or reason for what triggers the problems….we are  a little concerned that the condition keeps reappearing.  Any idea as to what it could be?  As much as we trust and value the chiropractor, we would be devastated if we missed some neurological or physical condition. Please let us know what you think next steps should be.”

 

The doctor recommended that we get in to see a Pediatric orthopedic and Pediatric Neurologist.  As we worked to get the appointments set up, we started to search the internet for possible causes.  In late April, we sent the doctor this email “Lisa went to chiropractor yesterday...they didn't see anything except said her knee looked swollen...they did some minor adjustments and told us to ice her knee.  No change this morning, she is still in pain and she is really limping/dragging her leg.  She can't do the stairs or get up on to chairs.  Not to be hypochondriacs, but what are the chances this could be muscular dystrophy? We know it's less common in girls, but there is still a chance and Lisa's symptoms do match the MD ones….”

 

We were quite alarmed at Lisa’s pain and symptoms. It seemed so odd that a 3 1/2 year old would lay in bed and not be able to stand up from the floor or get herself into chairs.   We knew it was something, we just didn’t know what.  The internet provided us with a plethora of ideas…perhaps muscular dystrophy, bone spurs, arthritis, rheumatoid….all kinds of ideas, no real answers.

 

April became May and Lisa’s symptoms subsided.   We were scheduled to see the Pediatric Neurologist in June and the Pediatric Orthopedic on May 14 with our vacation scheduled to begin  four days later.

 

On May 14, we went to the orthopedic appointment.  It lasted about 3 hours and included a lot of x-rays on back and legs and an order for a MRI order to look at the fluid(?) throughout Lisa’s body to see if there was any inflammation.  We really had no idea what was going on and what any of these tests meant or what we should expect.  Two days later the pediatric orthopedic called and said the radiologist saw something on the x-ray that could be nothing or could be something.  She threw around some medical jargon.  The words we caught were....new bone on side (could possibly mean tumor)...luceny (means bone not normal)....bone not infiltrated (means other cells replacing it which could mean leukemia), possible fat deposit (most logical given Lisa's size). 

 

The end result of the conversation was that we should keep our June 10 appointment with the neurologist, as well as, get an MRI of Lisa’s right femur and a bone scan. The doctor advised us not to panic or worry and to just go on our trip and enjoy ourselves.

 

We celebrated the adoptions at Disney in Mid-May determined not to worry about Lisa’s tests and appointments until we got back.  Lisa was quite the trooper and we all enjoyed our forever family vacation.

 

As June rolled in we attended our appointments on June 10 at U of M.  One day later I sent our doctor an email titled: “HELP!”  It read “Lisa’s leg problem has flared up and with a vengeance.  Earlier last week she was complaining about her left shoulder hurting.  It was a complaint, but didn't seem to impede her in any way.  Saturday and Sunday she started complaining her leg hurt and the limp/funny gait was back.  Monday, she was limping around but didn't have a lot of energy.  Monday night she spiked a 101 temp.  We treated with Tylenol.  She had a restless night and kept crying out in pain. Tuesday was neurologist day and MRI day....she was in pain and still had a temp.  Neurologist didn't see anything that indicated it was a neurological problem.  Bloodwork did come back with elevated WBC, but that could be because of fever.  They did do MRI although they were leery because of fever.  We've heard nothing else.  Today is another bad day.  Still has fever of 100 and when she first wakes up she can't get out of bed and she cries when we move her.  Once we get her up and moving about (usually a good hour later), she seems a bit better but is definitely limping and moving at slow pace.  She looks in pain. Help...what else can we do....they are finding nothing which is one sense is a relief, but on the other hand...there has to be something for her to feel like this.  It's slow torture for us all.”

 

We were helpless.  We couldn’t alleviate her pain, and the tests weren’t showing anything.  What could this possibly be?  We sent our doctor emails on rheumatoid arthritis and lupus, convinced it was something to do with Lisa’s bones.  Never once did it occur to us that it could be cancer. 

 

On June 11, 2008 we got the call from the Pediatric Ortho doctor to bring Lisa to the hospital immediately.  They suspected something serious…either leukemia or another cancer called neuroblastoma.  We raced to the hospital, hearts racing, minds spinning. Cancer?  No, not cancer, it can’t be.  Not Lisa, not us.

 

Lisa was admitted to the ER, doctors told us that based on early indicators they were 75% certain Lisa had some type of cancer most likely leukemia or neuroblastoma.  They planned on running a few more tests to determine which type of cancer.  It was not a question of "does she have cancer" it is a question of "what kind of cancer".

 

After a brief internet education on Leukemia and Neuroblastoma, we found ourselves praying it was leukemia…how crazy was that?!  But, we had heard of Leukemia and knew that people could survive leukemia.  We knew nothing about Neuroblastoma only what the doctors told us which was that it is a very difficult cancer to beat.

 

June 12, 2008, the email subject heading beseached family and friends to “Pray for Lisa” and our journey into living with a cancer called neuroblastoma began.

 

Lisa continues to be a warrior and continues to fight.  She has endured pokes, surgeries, chemo treatments, radiation, hair loss…more things then most of us will endure in a lifetime.  Yet, she remains happy, giggling and an upbeat source of inspiration for all of us.

 

She has inspired all of those who know her to believe, live life fully, aspire to make a difference, stay the course and have tenacity.  Because of her, we have come together to garner resources in hope of finding a cure so that no other children or families have to face this horrible disease without hope for a happy ending.  It is because of her that we have adopted the mindset that we want to  BLAST Neuroblastoma!

 

To read more about Lisa's story, visit her blog at http://www.loveyoulisa.blogspot.com/
  
 

Lisa's Treatment History

6/12/08 Diagnosed with Stage IV Neuroblastoma
 
6/23/08 Started Chemotherapy Protocol ANBL0532
6/23, 7/28 Cytoxan/topotecan
8/11, 9/22 Cistoplatin/Etoposide
9/2, 10/20 Vinocristine/Cytoxan/adrianycin

7/30/08 Stem Cell Collection

11/07/08 Tumor Resection

02/12/09 Stem Cell Collection

02/16/09 Chemo prior to tranplant (thiotepa/carboplatin)

02/26/09 Autologous BMT (discharged 3/11/09)

03/16/09 CT showed no evidence of disease

03/16/09 Received Vaccine Therapy (additional doses on 3/31, 4/4)

04/02/09 MIBG and MRI showed no evidence of disease

04/07/09 - 04/22/09 Radiation treatment

05/2009 - 11/2009  Accutane (13-CIS-RA)

11/18/09 Disease found on routine scans; Lisa was asymptomatic(MIBG uptake in left supraclavicular region, MRI showed left cerebellar hemishpere, CT showed pelvis and lower abdomen);

1/7/10 MIBG show multiple new areas in bone an soft tissue; including vertex of skull, left posterior occiput, skull base, left supraclavicular region, sternum, upper and mid thoracic spine, upper thoracic right paraspinal region, belly, pelvis, bilatateral posteromedial iliac bones, bilateral femoral heads, distal thighs.

01/10/10 Chemotherapy began (Irinotecan, Bortezomib (velcade); completed 4 cycles

4/26/10 MIBG  therapy (MIBG post therapy scan showed femoral bone marrow activity no longer present, uptake in left occipital bone now faintly visualized, no new areas identified)

9/06/2010 St Jude Antibody therapy (HU14.18K322A)---2 courses before disease progression too much (Initial St Jude MIBG showed activity in posterior right hepatic lobe, but no correlative abnormality on CT, no evidence of MIBG uptake in adbomen or pelvis, possible faint uptake in right ilium near sacroiliac join and within sacrum, faint uptake in proximal left femur.  After 2 courses there was  activity present in proximal left femur, distal right femur, midright femur, left pelvis, right paraspinal region, thoracolumbar junction, left medial pelvis)

12/06/2010 Began maintenance chemo at Motts; Irinotecan and Temopdaur (Scans done in Jan 2011 indicated lots of progressive disease.  Continue maintenance chemo drugs every third week until June 2011.

June 2011 Started Phase 1 Study ADVL0918: Chemo includes Temsirolimus infusion (days 1 & 8) in Combination With Irinotecan and Temopdaur(days 1-5). The hope is that Temsirolimus may stop the growth of tumor cells by blocking some of the enzymes needed for cell growth. Drugs used in chemotherapy, such as irinotecan hydrochloride and temozolomide, work in different ways to stop the growth of tumor cells, either by killing the cells or by stopping them from dividing. Giving temsirolimus together with combination chemotherapy may kill more tumor cells.

Aug 2011 Progressive disease shown on scans.  Trying to secure spot on ADVL0912 (ALK) study.

 

Meet Lisa

 
 

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