M.R.D.

Yesterday was by far the happiest day of our life!!  I started to get nervous and anxeity filled Wednesday evening with the realization of what the M.R.D. result would possibly mean for our T.L.P.'s future and treatment.  I phoned the PAU unit at Kapiolani a few minutes after they opened to see if her results were in but was told the doctor would call me in about an hour.  I couldn't breath...

Dr. Des phoned me in just a few minutes and told me the MOST BEAUTIFUL words I had ever heard!  "Good news Heather, we found LESS THAN 0.01 percent of cancer in her bone marrow!"  We all cried tears of joy on our little Trevor's 3rd birthday and had such a wonderful day!  Happy Canada Day to all of our family and friends in Canada!

Complete remission - the absence of any signs of disease - is determined by analyzing bone marrow samples for Leukemia cells.  In the 1990's, technicians could only measure the number of leukemia cells to an accuracy of 1 cell in 100 cells, and at that time, complete remission was defined as less than 5 percent leukemia cells.  By 2009, tests at the molecular level for minimum residual disease (M.R.D.) could detect the number of leukemia cells to an accuracy of 1 cell in 10,000, or 0.01 percent.  Increasingly, researchers are incorporating the concept of MRD into their definition of remission for several types of leukemia.

Current treatment plans for ALL incorporate a "traditional" definition of remission of less than 5 percent leukemia cells and a definition of remission using MRD values.  Since 2009, the Children's Oncology Group (COG), the group that Carmen is a member of, defined MRD Remission as anything less than 1 percent and full remission as anything less than 0.01 percent.

The tests that Carmen received on Tuesday were gathering data to be measured for MRD.   We needed to wait until yesterday for the results and it was worth every second.

Not only that,  Carmen's doctor let us know that after 8 days of treatment, Carmen's leukemia cells we at 0.03 percent, meaning that her quick response to the chemotherapy treatment put her cancer in remission after only 8 days!!!!  Studies show that children who achieve remission in the first 7 to 14 days have an extremely good change of long-term survival.

Though this is amazing news that we took time to celebrate with a bottle of bubbly, we are staying vigilant for the next two to three years of treatment to KEEP her cancer free.

Carmen has now entered the Consolidation phase.  Without further therapy Carmen would quickly relapse.  The goal of the consolidation therapy is to continue killing the remaining leukemia cells and stop new disease cells from forming.  As long as her counts meet the protocol requirements, Carmen and mommy will be traveling to Oahu every week for the next three weeks for Carmen to receive LP's.  She will get intrathecal chemotherapy in her spinal fluid for her next three appointments which require her to be sedated.  By the way, Carmen's Oncologist never did find any cancer cells in her spinal fluid!!

This process is far trickier than it sounds because cancer cells, which by definition are very unstable, tend to mutate frequently and can become resistant to the drugs that initially kill them.  As a result, the consolidation phase consists of new combinations of drugs designed to destroy the cancer cells that survived the induction and stop the development of new cancer cells.

Putting all the scary medical "mumbo jumbo" aside for a minute we can all take this moment to celebrate this enormous achievement.   Our TLP is fighting hard everyday and she is hearing your prayers!!!

Today, Heather needed to take Carmen to Lihue for a blood test in preparation for her Chemotherapy therapy treatment on Tuesday.   Carmen's ANC and Hemoglobin came back terrific but her platelet counts were too low to receive the Chemotherapy Treatment.   Heather needed to change her flight to Honolulu to Wednesday and will need go for another blood test on Tuesday to ensure her counts are up.

I am happy to tell that you that our sweet little baby girl is starting to get back to her old self again.  The sound of her little voice and laughter is once again filling our home.  Gone are the cravings and returned is the appetite for fresh fruits and vegetables.  The juicer Heather introduced is a bit hit.  Carmen's mood is improving and her activity level and strength is slowing starting to return.

She is having a great time playing with Trevor and getting back into playing with her crafts and stickers.

Below are pictures from the last few days

Color Silly

Mmmmmm.......I am making juice!

Carmen's first Coconut in a month!

Tracing time!

Window Art

A little driving snack on the way to give blood this morning.

With Flying Colors

Once again our tough little princess went to battle yesterday and came out victorious.

Everything started on Monday night at 10:50pm when we had to start restricting Carmen's intake of food and beverage.  If you have been reading the last few blog posts you will know that our lives have been fairly focused on managing Carmen's ferocious appetite so you can imagine what sort of night it was.

We needed to be up early and to the hospital by 6:30am to get Carmen ready for her 8:30am procedure.

She was pretty scared with the pre-surgery commotion but was mainly pissed off that they only had blue socks to wear.  We seriously need to donate pink socks and gowns to this hospital.

While Carmen was sedated for her surgery the chief oncologist, Dr Kyono visited with Heather and I to explain the second phase of the procedure.  After the port-o-cath was in place, Dr. Kyono would be giving Carmen yet another spinal tap and take a bone marrow biopsy.  It is hard to believe that we are getting used to these phrases and treatments.

Dr. Kyono re-emphasized how important the first 29 days of treatment were for the successful cure of Leukemia.  If Carmen had experienced any complications during the induction or had to go back on antibiotics it could have disrupted the chemotherapy schedule creating unforeseen complications.  He told us that Carmen had come through the induction phase "With Flying Colors" and he expects nothing but positive results.

After surgery Carmen still had to spend time in the P.A.U. clinic to visit with the other oncology doctors and nurses.

Although Carmen's ANC level was a very positive 5,400, her Hemoglobin numbers were low prompting the need to give Carmen an unexpected blood transfusion.

In one day our baby received general anesthesia, surgery, port-a-cath insertion into her chest, a lumbar puncture, bone marrow biopsy, chemotherapy injection into her spinal fluid, a blood transfusion and her "piddycone" removed from her arm.  It is all too much to comprehend.

Jacquie was in the PAU while Carmen received her blood transfusion to do a wonderful healing and spend time with her buddy.  They have developed a very special relationship with each other, it is so wonderful to see.  Jacquie has three children of her own and has taken so much of her personal time as a busy mom to help Carmen.  We LOVE her!!

A day like yesterday is something that our family will need to get used to over the next 6 to 8 months.  The trips to the hospital will be unpredictable and stressful.    We started the day expecting an out-patient procedure taking 5 to 6 hours and ended the day after 12 to 13 hours forcing us to change our flights and not return home to Kauai until after Trevor was asleep.

Heather and I are ecstatic to finally stop giving Carmen her steroid and look forward to drug clearing her system.  Actually......we do not have to administer any drugs to Carmen until she receives her antibiotics on Friday.

Carmen's friend Neva came over for a play date today.   It was Carmen's first timing playing with her friend since all of this began.   Today was a good day.

Aloha

Team White

Images.

At least I have my pink hat

I love me some ice cream

Carmen's B.F.F. Neva

Rollin with my new Pink iPad.  Thank you Auntie Victoria. 

Always have time to shop for dolls

Blue Monster Tiger Face

Things have been "interesting" over the last few days adjusting to being back home.

Heather and I really see now that our time in Waikiki was completely focused on providing Carmen whatever she needed to heal.  It is also clear that we had created a bubble that was helping Heather and I heal too.   It was almost as if we were suspending reality and hoping to wake from a really bad dream.

Now that we are home getting things back to "normal"- going about daily life, running errands and returning to work the reality of Carmen's Leukemia has been brought to the forefront.  We are coming to terms with the fact that what we thought was once "normal" is now very different and changed forever.  I suppose, more than anything being back home makes it next to impossible to not think about things the way they were before May 26th.

Don't get me wrong.   We are extremely happy to be home.  Re-uniting Team White has been the boost that we all needed.  Trevor is the same, happy go lucky boy who fills the home with laughter.   We had a great weekend with Grandma and Grandpa White and got settled back into things. 

A few highlights over the last few days was seeing Carmen open all of the fun gifts and cards that so many of you sent to her, including arts & crafts, hello kitty clothes, stuffed animals, books and an amazing American Girl doll named Kanani.

Carmen helped her Mom make bread and fresh juice in our new bread maker and juicer.  Heather was already amazing at watching what our family eats, but now we have added a few more things to really help us ensure that our family is only eating the best for our bodies.

Carmen was excited to visit the Hanalei Farmers Market on Saturday where we stocked up on fresh fruit, vegetables and coconuts.  Unfortunately, the trip was probably a little too much too soon and proved that we have to continue to take things slow.  Then we came home and had a fun filled afternoon of face painting and setting up a tent in the back yard which provided tons of entertainment for Trevor.

Daddy and Trevor even camped outside on Saturday night and had a great time!

Heather and I are taking Carmen back to Honolulu tomorrow night for her 5:30am appointment on Tuesday.  This week is very important for Carmen's future.  Tuesday will mark the end of the induction phase.  She will be placed under general anesthesia to have a spinal tap, marrow biopsy and minor surgery to remove her Piddycone and insert a semi-permanent port-a-cath under her skin.  Unfortunately we need to wait until Friday for the results which will essentially dictate how the next 3 years of treatment will go for Carmen.

During the induction phase the doctors prescribe the same chemotherapy treatments for anyone who has ALL.  During this 29 days of induction the Doctors are gathering data, learning about Carmen's genetics and preparing for the final test results of induction.  Once all of this data is compiled, the Doctors will be able to ascertain which therapy protocol is right for Carmen.

It is amazing that they can fine tune Carmen's treatment to exactly what she needs.   On the other hand, it is upsetting to realize that this first phase of treatment may have been giving her levels of drugs that her little body did not need.  The bottom line is, the whole thing is amazing and terrifying all at the same time. 


It will be fantastic when her Piddycone is removed and she adjusts to the port-a-cath.  Even more, Heather and I can not wait until Wednesday when we can stop giving Carmen these Steroids that are reeking havoc on our sweet little baby - impacting her mood, activity level and appetite. 

We are staying positive and have every reason to be optimistic that Carmen's results will be stellar. 

When Carmen had her first spinal tap I asked you all to send positive thoughts towards Kapi'olani Hospital.  Please, where ever you are, send your prayers, love, light and positive energy towards Carmen on Tuesday at 7:30am Hawaii Time.

We love you,

Team White

A few images of the weekend.

Look at those eyes.

Fit for a Princess

Big Smiles

 Grandma "kitty" getting into the spirit

The Blue Monster Tiger Face

Monster Cave (tent)