Journal

Journal entry by Steve White

Yesterday Lance had his last appointment with his primary oncologist of the past 5 years and 2 months, Dr. Neff. Lance's primary team of Dr. Neff, RN - Holly Kubaney, Nurse - Dina Grayson were all there as was Dr. Patel - who's been a big part of Lance's life as well. These folks are part of our extended family.

5 Years. 2 Months. Diagnosed at 13. Last appointment at age 19.

Time to move on.

Lance's #s were all good. He's still not back to his weight he was at age 13. His recent echo cardiogram was good (taken because two chemo drugs Lance took can damage the heart).

Just wanted to say "thank you" to all those who spent time following, praying, sending positive vibes Lance's way. It surely helped.
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Journal entry by Steve White

Likely to be the 2nd to last post we'll make out here on CaringBridge recording Lance's journey.

After this milestone, Lance has one more oncology visit on November 1st. He will then move over to the "survivorship" side of the clinic.

October 3, 2019

Today marks 5 years since Lance went into remission. We know it's significant. But not sure why, really. We just know we have him with us, and we are thankful for that.

Lance is slowly healing. We see it in him everyday. One thing this journey did not take from him was his amazing smile and his desire to do good and help others, and his faith.

To those fighting, healing or holding memories close - we are with you.

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Journal entry by Steve White

Today is Lance's 18th birthday!!!

Lance continues his monthly blood work visits to see where he's at. To date, all his blood work has been excellent. He has two more monthly visits (November and December) and will then move to quarterly visits (still at Children's Blood and Cancer Center) before moving on to survivorship visits.

These last 4+ years have been something else. To those still fighting, prayers and positive vibes.

Journal entry by Steve White

Quick update on Lance as he starts his Senior year of high school today @ Cedar Park.

Lance still visits his oncologist monthly for blood work and check ups. He will do this until December 2018 and then his visits will occur every 2 months for 1 more year.

His blood work during his past 2 visits has been awesome. His ANC is strong - sitting around 2300 after this past week's screening. So we are not as worried about infection or colds as he starts back to school as we have been in past years.

He is participating in football practice (see picture) - although he has NOT been cleared for contact. We have ZERO expectations... but Lance loves being out there with his brothers and the goal is getting healthy. He has been out of sports for 4 years (2014, 2015, 2016 and 2017).

On the health front... Lance's appetite is still weak/lacking, he still suffers from peripheral neuropathy (feet and hands), and osteoporosis. We head back to his endocrinologist in mid September and expect to better understand how his bone density is doing.

Getting back on the field has Lance exhausted... but he is slowly getting stronger and really enjoys the social aspect of it as well.

Here is to a great year!

Journal entry by Steve White

Quick update on Lance... some of you may already be aware of some detail here... but there seems to always be something new.

Regarding his monthly follow-up care - they continue to be excellent. All of his key blood work numbers have moved into the normal ranges. This includes - WBC, RBC, HGB, MCV, Platelets and ANC. His latest ANC was 2270.

His visit to his urologist - came back w/ no concerns from a kidney stone / perceived hydrocele perspective. In fact no hydrocele was diagnosed by the urologist. He does want to do a test on Lance's kidneys to see if there is a reason for the stone being produced from there and any markers that might indicate further formations.

Physically, Lance has reached 122 pounds and is looking stronger and stronger. He has started physical therapy and workout regimens. More on this in a moment though...

On April 8th, Lance's port was surgically removed. Emotional day. One of Lance's buddies he spent practically the entire past 3.5 years under treatment with - was there getting his port out as well.

Re. working out and the "1 step back" perspective. Lance fractured his heel bone stretching this week. We're still trying to figure out the details... MRI was performed Friday and a follow-up visit the orthopedic surgeon is next Tue. At this time thought is there is no damage to tendons or muscle. Lance is in a lot of pain... in a boot... and on pain meds. He is pretty devastated by the injury, he thought he was on his way back. Not sure yet if his osteoporosis diagnosis is involved - but likely is.

Thank you for your continued prayers and positive thoughts. Lance could use some love re. foot injury - we need it to heel quickly and correctly without adverse impact.

For those still fighting and who might stop by out here... know we're thinking about you and praying.

Journal entry by Steve White

Quick update following Lance's 2nd post treatment follow-up care visit.

First, still no evidence of disease... 🙏!

Regarding Lance's immune system, his numbers improved across the board. While his white and red blood cell counts and his absolute neutrophil count (ANC) are all low - they improved. His ANC is at 1200 and he is no longer considered neutropenic. His hemoglobin moved into normal range and his platelet count remained normal.

In the two (2) months Lance has been off treatment - he has gained eight (8) pounds and FINALLY surpassed his 8th grade
prediagnosis weight. He weighed in at 116 pounds.

Oncology team was very, very happy with the numbers.

While all this was going on... the clinic threw Lance an end of treatment party, Becky Nichols (Loving Libbie Memorial Foundation) made Lance a cake, Dr. Neff presented Lance with a trophy and then presented Stevie with a medal for her being such a fantastic sibling. Lift Brigade sponsored the day providing materials to make slime and brought in breakfast tacos for the patients and families in the clinic.

Then we made it home and reality set back in. We received Lance's DEXA scan (bone density) results his endocrinologist ordered. Lance has full on osteoporosis. Description: "There is osteoporosis in the total lumbar spine, total hip and femoral neck."

So we have to add this to the long list of Lance's "late effects" he'll be dealing with. Not complaining. We are grateful in where Lance is... just disappointed and a bit overwhelmed.

Prayers for Lance as he approaches this new stage of his life and learns how to overcome and hopefully fully recover from where his body is post treatment.

We send our thoughts and prayers out to those still fighting!

Journal entry by Steve White

This will be the last update for awhile as I'm sure you all know by now... Lance has completed all of his treatment plan for his cancer. His last chemo infusions (chemo via port) took place on December 14, 2017. He took his last chemo by pill on December 29, 2017.

Lance's diagnosis remains - T-cell Acute Lymphoblastic Leukemia in remission.

Yesterday, Lance had his 1st follow-up care visit with his oncologist. The primary reason for these monthly follow-up care visits is to test Lance's blood for the recurrence (relapse) of his cancer. There are additional reasons of course (see below) for these follow-up care visits... but the primary reason for the next year is to see if Lance has relapsed. Scary to think about. Lots of anxiety.

Yesterday's tests showed Lance has not relapsed. Yay!

The other reason for the testing, especially over the next few months, is to see how Lance's body is healing - specifically his immune system. On that front, Lance's immune system is still impacted by his treatment as was expected. His white and red blood cell counts, his hemoglobin count and his absolute neutrophil count (ANC) are all low. His ANC is at 900 - it is expected to be in a range between a low of 2250 and a high of 7150. His platelet count is within in range.

Lance did put on 3 pounds... but we have not seen much of a change in his eating. He is still 4 pounds below his 8th grade weight.

Lance is still dealing with multiple side effects of his chemo treatment plan. This includes the neutropenia discussed above, chemo induced peripheral neuropathy in his hands and feet, chemo brain or fog, severely weakened muscular system, anxiety, social acceptance, and many other things.

Over the coming months, as Lance's body heals, Lance will be attending a number of doctor visits. In addition to the monthly oncology visits, Lance will be attending visits across a range of specialists (i.e. urology, endocrinology, neurology, etc.), will (re)start physical therapy and have surgery to remove his chemo port.

We'll post an update at the six-month post treatment point.

So... for those who still come out here and take a moment to read up on Lance... thank you for coming and visiting. You can also keep track of Lance on Facebook at his Lift Brigade page.

This has been such a big part of our coping over the past 3.5 years. Thank you for letting us share and document Lance's journey.

To Stacy Wrenn - we're thinking about you. Prayers. We are going to meet in Fort Worth at Joe T's!!

To Heather Meyer - we're thinking about you too! Your update did not come until after I finished typing this update. Prayers. We're here for you... and if updating you on Lance helps in any way - I'll continue to post!!!

Journal entry by Steve White

Yesterday, Lance took his LAST dosage of chemo by pill and is now officially through with treatment of his cancer he was diagnosed with on September 2, 2014. He will return to the clinic in mid-January for his 1st follow-up care visit and will return monthly for the next year. Follow-up care will focus on tests to see if the cancer has returned. Lance's port is still in, and will be removed via surgery at a later date.

We are very thankful. Prayers and the Lord above have helped - especially lifting Lance and our family when we were down. To our family, friends, and our community here in Central Texas and abroad - thank you for your support, prayers, positive vibes and encouraging words.
 
So many emotions.

Lance has come so far and been through so much since his diagnosis.

That 1st week...

Included initial concerns of stroke and organ failure; a likely life saving emergency medical helicopter flight (Travis County STAR Flight) from Austin to Dallas - that he was initially denied because they thought he might have a heart attack in-flight; two major surgeries he had to endure awake due to a "large, superior mediastinal mass" which was compressing his trachea; two (2) 4-hour leukapheresis treatments and then chemo started just 48-hours after being told he had cancer.

Delays... delays... delays...

Lance was diagnosed as high-risk (CNS3). The primary factors were age (older), his high white blood cell count at diagnosis, his type of leukemia - T Cell vs. B Cell, and gender.

Based on his CNS3 designation - Lance's initial plan was to go through 4 Phases of Primary Treatment and then 3-Years of Maintenance Treatment. With no delays, these 4 phases of treatment would take 210 days and include cranial radiation. Lance took 288 days to complete these 4 phases and reached a low weight of 78 pounds during one of his hospital stays.

Lance's oncology team did change his CNS level to normal risk and removed cranial radiation, but added a 5th Phase of Primary Treatment and another 56 days of planned primary treatment that would take Lance 70 days to complete. So with delays, Lance's primary treatment, stretched to 358 days vs. the initial plan of 210 days.

Lance's total number of days under treatment (Primary Phases plus Maintenance) was 1214.

Some more interesting numbers about Lance's treatment...
  • Months in Treatment - 40   
  • Days in "Primary" Treatment - 358   
  • Days in "Maintenance" Treatment - 856   
  • Chemo Infusions via Port - 103  
  • Chemo Infusions via LP (Lumbar Puncture) - 27   
  • Chemo by Pill - Dosages - 1076
  • Chemo by Pill - # of Pills - 3013   
  • Steroids by Pill - Dosages - 197   
  • Steroids by Pill - # of Pills - 681   
  • Different Types of Chemo - 13   
  • Non-chemo/steroid Prescriptions # - 19
  • Visits to Oncology Clinic (CBCC) - 96   
  • Chest Port Accessed - 104   
  • Days in Hospital Total - 101   
  • Days in Hospital - Planned - 18   
  • Days in Hospital - Not Planned - 83   
  • Days in Hospital - During Maintenance - 27   
  • Days in Hospital - Longest Stay - 21  
  • Weight When Diagnosed - 115     
  • Lowest Weight - 78
  • Weight when ended treatment - 108  
  • Height When Diagnosed - 160cm
  • Height at End of Treatment - 163cm  
  • Leap Years - 1 * added one extra day in treatment!!!!!!
  • Age at diagnosis - 13   
  • Age when completed treatments - 17 * and driving!!!!!!
What's next?

So now we need to help Lance heal. Lance's mind, body and spirit are tired. He is diagnosed with Chemo Induced Peripheral Neuropathy. This is primarily in Lance's feet and hands. There are no guarantees - but it is expected to improve with the primary influencer being time.

We've been told we need to prepare for the anxiety that monthly testing will bring. We'll update you from time-to-time on how he's doing in follow-up care.

Again, thank you for your support, prayers and positive vibes over these past 40 months.

We know for a fact Lance felt them and appreciated them.

Journal entry by Steve White

Day 1 of Maintenance Phase Cycle 11.
 
Lance was at the Children's Blood and Cancer Center (CBCC) today and received his every 28-day chemo infusion of vincristine. He was then transferred to Dell Children's Hospital for a intrathecal methotrexate (IT MTX) chemo infusion into his cerebrospinal fluid via a lumbar puncture (LP) procedure.
 
This was Lance's 27th LP surgery.
 
Vitals - hemoglobin was 11.6, platelet count was 161 and ANC was 1570. All strong numbers. Based on these results, Lance's mercaptopurine was upped by 50 %. This will be in place for the remainder of his treatment. The recent blood transfusion and neupogen shot are still working.
 
Lance weighed in at 107.81 - meaning he is going to finish treatment not reaching his 8th grade weight of 115.
 
Lance will start the steroid dexamethasone today for 5 days and continue his daily (mercaptopurine) and weekly (methotrexate) chemo by pill regimen until December 29 - his official last day of treatment.
 
Next visit under treatment is NOT SCHEDULED. Lance will return to the clinic on January 19th to begin monthly check ups.
 
Hard to believe he's done.

Thank you for your continued prayers and positive thoughts.

Link to Lance ringing the bell signalling his last treatment!

Journal entry by Priscilla White

As some of you already know, our 13 year old son has been diagnosed with T-Cell Acute Lymphoblastic Leukemia. This was a complete and total shock and we are still trying to wrap our heads around what is happening in our lives right now and to prepare for the future. We are functioning day to day right now, and are not able to go much farther than that. It is all very overwhelming for everyone invlolved, and we are all trying to cope in the very best way we can, so please bear with us on our journey.  

We appreciate your prayers, positive thoughts and look forward to comments and our Guestbook visitors here. We should probably also add that nothing we say here is a secret, and our opinion is that the more folks who know, the more folks who'll pray, which is very, very, welcome.

Here is a brief synopsis of how we came to this point today. I will forewarn you that the following has very little emotion and a lot of info you may or may not be interested in.  Please know we will post as we can and try not to deluge everyone with numbers and factoids, but focus on how our son and family is doing. For now, this is best we can do.

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Lance’s Story

Site created on September 3, 2014

Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.

As some of you already know, our 13 year old son (Lance White) has been diagnosed with T-Cell Acute Lymphoblastic Leukemia on the morning of September 2, 2014. This was a complete and total shock and we are still trying to wrap our heads around what is happening in our lives right now and to prepare for the future. We are functioning day to day right now, and are not able to go much farther than that. It is all very overwhelming for everyone involved, and we are all trying to cope in the very best way we can, so please bear with us on our journey.  

We appreciate your prayers, positive thoughts and look forward to comments and our Guestbook visitors here. We should probably also add that nothing we say here is a secret, and our opinion is that the more folks who know, the more folks who'll pray, which is very, very, welcome. 

I will forewarn you that many, if not all, the following posts have very little emotion and a lot of info you may or may not be interested in.  Please know we will post as we can and try not to deluge everyone with numbers and factoids, but focus on how our son and family is doing. For now, this is best we can do.

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