Faces of Solidarity and Support

This post is dedicated to all those who have shown their support and love to us over the last few weeks.  There are countless more faces I could add to this post, but here's a glimpse at a few who showed their support in a "hair razing" kind of way....

Spencer's childhood friend:  Jake S. (Utah)


 Spencer's cousin:  Devin G.   (Utah)  Spencer and Devin are only a few weeks apart in age and were best buds when they were toddlers.

Lara's cousin:  Aaron S.  (Texas) who still dresses to match his brother apparently⇩⇩⇩

Lara's cousin: Ashley S. (Colorado) Aaron's brother ↑↑↑

Lara's high school friend's husband:  Thaddeus L.  (Minnesota) donated his hair to Locks of Love



Spencer's friend:  Aaron P.   (Virginia)
 

Spencer's cousin:  Andrew K.  (California)  some kids in his class teased him the first day after shaving his head, so his mom (my sister) went into his class and showed pictures of Spencer and a collage of these pictures.  Afterward everyone in the class thought it was really cool. 

Spencer's friend:  Daniel H. (Virginia)

Spencer's uncle (Glen's brother):  Alex G.  (Utah)  he is a high school football coach, so he held some kind of weight lifting competition with the team and let the winner shave his head for him
 

Lara's uncle:  George "Buddy" C.  (Utah)

 

Spencer's sister:  Emma G.  (Virginia) donated 10-inches to Locks of Love.  Emma's been wanting to donate her hair for ages, but was just waiting until it was long enough.  Spencer's diagnosis just  gave her extra incentive to do it sooner rather than later. 

Spencer's Dad:  Glen G.  (Virginia) he's since shaved off the mohawk

ME!  with two baldies and two short-haired girls in the family, our shampoo bill is sure to plummet significantly.  :)  I probably shouldn't admit it, but I miss my long hair.    

Family Friend:  Catherine T. (Virginia) donated to Locks of Love

Spencer's Grandpa (Lara's Dad):  Steve C.  (Utah)  

Spencer's Friend:  Kaili E.  (Virginia) donated 12-inches to Locks of Love

 

Spencer's Great-Uncle (Lara's uncle):  Joel P.  (Utah)
 

 Lara's friend and recipe blog partner:  Jen H. (Paris, France) donated to Locks of Love

 Lara's cousin:  Lauren C.  (Washington State) donated to Locks of Love

Spencer's Uncle (Lara's brother):  Matt C.  (Maryland)

 Spencer's friend:  Matt H.  (Virginia) who gave a fabulous talk in church about how the young men in our ward were standing behind Spencer. 

Lara's High School friend who is in the middle of her 3rd treatment for cancer:  Monica T.  (Minnesota)  Monica's the one in the middle, with her two daughters on either side of her.

 Spencer's friend:  Taylor C.   (Virginia)

Spencer's friend:  Matt G.  (Virginia)

 Family friend:  Mike G.  (Virginia)

Lara's uncle:  Mike C.  (Texas) 

 

Lara's high school friend and her daughter:  Rebecca W.  (Oregon) donated their hair to AngelHair foundation (which only needs a minimum donation of 8-inches)

Lara's cousin:  Tanner G.  (Washington State)

Lara's cousin:  Ryan C.  (Oklahoma)

Spencer's uncle (Glen's brother):  Eric G.  (Colorado) striking a Warrior Monk pose

Thirty-one people in ten states and two countries...
you guys are awesome! 

PS  If I missed your photos somehow, please accept my apologies and email me again.  For those who missed the deadline for this post, send them anyway and I'm happy to keep adding more pictures as we go.   

************************************************

Today's Update

The doctor ordered double butter and cream cheese slathered over all of Spencer's food seems to be doing its trick.  Spencer's weight is up to 56.3 kg.

Spencer's ANC is up to 100 today (it needs to be 250 and trending upward before going home)! 

The doctor actually mentioned the possibility of going home earlier than Thursday if his counts keep jumping up like this.  His bone marrow biopsy and spinal tap are still scheduled for Thursday,  so if he did get released before that he'd have to get those done on an out-patient basis. 

We met a leukemia survivor from Spencer's high school today.  He and Evan hadn't ever met before, so it was great to meet another teen who'd been through it before us. 

************************************************

"I am only one, but I am one.  I cannot do everything, but I can do something.  And I will not let what I cannot do interfere with what I can do."  ~Edward Everett Hale

Horsing Around in the Fresh Air!

Now that his first round of chemo is done and the worst of his side effects seem to have passed, Spencer's been able to enjoy the opportunity of being unhooked from his IV for a couple hours a day.  Earlier this week when the temps were in the upper 60's, the nurses (one in particular) were eager to get him out to the courtyard to get some fresh air. 

The first day he was a little tentative, but his friend Sean helped him out by chasing him around on his trike and trying to steal his hat. 

 
Sean's good cheer and silliness seemed to give Spence a little boost of energy and fun times were had by all. 

Success! 

********************************************

At 72 degrees, the next day (Wednesday) was even more fabulous.   That day Glen, my mom, dad, and sister were visiting with Spence. My sister, H, was the photographer. 

Spence and Grandpa ended up playing some catch together....

And Spencer proved that the leukemia hasn't affected his throwing arm...

Afterward Glen and Spence played a little game of HORSE where they got creative in the tiny courtyard...

Spencer ended up beating Glen soundly....

A fact which he likes to remind Glen of frequently. 

*******************************************

Today's Update:

--Spencer's friend Sean (mentioned above) had his last chemo today and was heading home for good!  This picture shows their departing high fives!   We'll miss his cute little voice and friendly visits to the room. 

--The doctor mentioned next Thursday as a possible going home day for Spence.  Of course, in the end, it will depend on how his blood counts are going.  Today his ANC is about 28 and we need it to be 250 and trending upward before he goes home. 

--He'll still be quite neutropenic (immune-suppressed) when he goes home, so he still won't be able to go out in public and we'll have to hand sanitize at home like we've been doing at the hospital.  

--Fridays are the day to change the dressing on his central line (IV in his chest).  Today I had to remind the nurses to do it and still they haven't done it at 10:00pm. 

--Cami got a PR in the mile run at the indoor track district meet tonight!

**********************************************
“Let us never forget to pray. God lives. He is near. He is real. He is not only aware of us but cares for us. He is our Father. He is accessible to all who will seek Him.”

― Gordon B. Hinckley

Silver Linings

We have hesitated sharing this little piece of news, but since word is starting to spread anyway, we wanted to make sure that people knew things from our perspective. 

On the evening of Tuesday, January 10th, we first learned that Spencer likely had leukemia.   On the morning of Wednesday, January 11th, Glen's company restructured and laid off his entire group, including Glen. 

Because Glen had taken the rest of the week off to deal with our newly turned-upside-down life, he didn't know he was laid off until he went back to work the following week.   As you can imagine, we were shocked and totally overwhelmed at the enormity of these two blindsiding detours to our lives that occurred in less than a week's time.   

But after we were done crying about it, we started to see some silver linings (and a little miracle) to his new joblessness. 

The silver linings:
1.   The severance package made it possible so that Glen can spend a few months being far more involved in taking care of Spencer and our family through this time, than he otherwise could have been being mired down with his stressful job. 

2.  Glen wasn't super happy at his job anyway, so this gives him a chance regroup, network, and figure out where he wants to go next in his career. 

The miracle:

The timing.  We are grateful that the diagnosis came the day it did.  Glen's company, although somewhat heartless in their delivery of the news, did make some concessions about insurance because of our situation.  If Spencer's diagnosis had come even a day later, the termination papers would have already been signed and we would be up a creek with insurance issues. 

In summary:

We are fine and trying to see the bright side of this unexpected detour.

If anyone happens to know of any good job opportunities for tax accountants turned finance guys, that happen to offer really fabulous insurance, please feel free to give us a call! 

*******************************************

Spencer

...we've been informed that the nurses all take turns choosing their patients for each shift and Spencer is always one of the first ones chosen.  Apparently his politeness and good humor are winning them all over. 

...after his nausea episode last night, the doctor prescribed him Benadryl, which effectively knocked him out flat for 12 hours.    It was the best night's rest he'd had in a long time.   

...is eating better and has stopped losing weight. 

...as part of the preparations for Spencer's short stint at home (hopefully next week), we took our dog to the vet and got all his shots up to date, so he won't be responsible for spreading any germs. 

*******************************************

“Even if you cannot always see that silver lining on your clouds, God can, for He is the very source of the light you seek. He does love you, and He knows your fears. He hears your prayers. He is your Heavenly Father, and surely He matches with His own the tears His children shed.” 

Jeffrey R. Holland

Short and Sweet

My laptop is in the shop, which means that my blogging is going to be short and photo free for a few days while I attempt to blog from the hospital iPads.

Spencer

...has been feeling much better the last few days...until tonight when he had a sudden wave of nausea and broke off his IV line as he made a mad dash to the bathroom. He's fine but tired and still a bit queasy now.

...has been able to go out in the courtyard and play basketball the last two days. It was his first breaths of fresh air in three weeks (and at 65 degrees it was mighty fine February air, if this native Minnesotan does say so herself).

...if his blood counts continue to rise Spencer could possibly go home for a few days next week.

...Spencer wants it to be known that his dad got beat in a game of HORSE (basketball) by a cancer patient today.

Bone Marrow Matching: Round 1 Results

We found out the preliminary results of the bone marrow matching today.  We didn't originally realize that  further tests would be required after these results in order to find the best match, but preliminarily the news was unexpectedly good. 

Spencer has four siblings and based on these first tests, three of them are perfect matches (thus far in the process).  The hospital said to have that many matches, even in this first step, is so unheard of that they double checked the results just to make sure. 

Even while they were gushing about how they'd never seen that many matches before, they were also quick to tell us not to be too relieved yet, since more extensive (and expensive) testing still needs to be done. 

We'll take what we can get.    

All three of his sisters are 6 out of 6 HLA matches.   

Random Facts about Bone Marrow Transplants

The preliminary bone marrow matching tests 6 HLA markers in the blood.  The remaining 4 markers  are much more expensive to test for, so they do the preliminary testing to weed out the number that move on to further testing.  All three girls will go onto the further testing.  The most successful transplants have 10 out of 10 matches. 

If an in-family perfect match is found, then round 4 of Spencer's chemo will be performed at Children's Hospital  in Washington, DC.  The chemo will be very intense and will basically destroy his immune system in its entirety before the transplant.  The whole process is expected to take about 2 months in the hospital and another 2-4 months of recovery. 

Bone marrow transplants are risky, but also give the greatest chance for a complete cure.  Having an in-family match maximizes the chances for success.     

A bone marrow donor can have a different type of blood than the recipient.  In this case, after the transplant is done the recipient often changes blood types to match the donor.

The bone marrow recipient will also often develop similar allergies as the donor, since basically their immune systems will be the same afterward. 


 

The Unveiling

Something we learned about Spencer very early in his life is that he does not like the attention to be on him.  I understand that he sprouted a little class clown streak in his teenage years, but for the most part he's always sought to avoid the limelight. 

Too bad having leukemia isn't very conducive to limelight avoiding. 

He's accepted my blogging as a way to keep people in the loop, but other than that, throughout this experience he's been embarrassed by all of the attention he's received. 

So when I mentioned the whole head shaving party thing to him, he  immediately and adamantly wanted nothing to do with it.  When the day came to lose his hair, he wanted no crowds, no videotaping, and if he had his way, no cameras at all. 

Today when he woke up looking like this...

he quietly agreed to let Glen shave his head.  I had to beg them to wait until I got there with the camera, but other than that one concession, we decided that we would do this 100% his own way---with no fanfare whatsoever. 

Since his platelets are too low to risk getting nicked from a closer shave, Glen did the shaving with the hair clippers and I promised to not go crazy with the picture taking. 

As you can see, it ended up being quite a pile of hair (pictures of the floor didn't count against my quota)....

With the hair gone, you can see more clearly where the hair had already fallen out... 

and that he doesn't have horns or anything.

Stay tuned later this week for a very exciting blogpost featuring all those who have decided to shave their heads (or donate their hair) in support of Spencer.  It's going to be awesome! 

Please send your before/after pics to wawadehut@gmail.com by Thursday, February 2nd. 

*********************************

Spencer

...had another spinal tap today.  The anesthesiologist who sedated him was the first medical professional we've met since we've been here that was rude and condescending.  People like that have no business dealing with patients and we made sure that we reported the experience as soon as we were done! 

...he intends to wear hats most of the time now. 

...this isn't about Spencer, but since just a few weeks ago this blog was merely a place to document our lives and brag about my kids, I just have to report that Cami is running in the district indoor track meet this week.  She's a part of the 4 x 800 m relay tonight and will be running the mile later this week.  Although she's improved a lot over the season, she was completely surprised (and thrilled) for the honor of running in districts!  Way to go Cami! 

************************

“The companionship of Christlike friends deeply touches and changes our lives. We should well remember that the Lord often sends 'blessings from above, thru words and deeds of those who love'...Love is the very essence of the gospel of Christ... prayers for help are often answered by the Lord through the simple, daily service of caring brothers and sisters. In the goodness of genuine friends, I have seen the reflected mercy of the Lord Himself. ”

Elder Joseph B. Wirthlin

Our New Normal

For someone like me who thrives on having an established routine, this whole life being turned upside down stuff, has been somewhat of a challenge.  Suddenly every comfortable routine our family has worked to espouse over the years, seems like a mountain to climb.  Chores, scripture study, exercising, date nights, laundry, homework---it's all the same things, but twice as hard to do.   

So, tonight I decided that I needed to cook (for the first time in 3 weeks) and we needed to eat a dinner all together as a family.    

I got into my kitchen groove, packed up the food, and toted our dinner (Thai Chicken Pasta, brownies,  and a fruit smoothie ) up to  the hospital room...  

where we ate a nice, normal dinner--complaining kids and all, who apparently don't like chicken thigh meat as well as the breasts.  

Afterward we had family home evening--we sang songs, prayed,  and discussed Hebrews 12:11 as our lesson.

And then to make sure everything felt even more normal, when I asked Spencer if he would pose for a picture with me, he rolled his eyes, sat up for approximately 2.3 seconds, half-way grinned, and flopped back down.  Then when we discovered that the picture was blurry, he wouldn't even consider sitting back up for me. 

Yep, it definitely felt just like old times again! 

*******************************************

Spencer

...is still losing weight.  He's down to 54.9 kg.    We're feeding him doughnuts, muffins, chocolate milk, and anything else he'll eat. 

...in order to get his blood strong enough for tomorrow's spinal tap,  Spencer will get platelets again in the morning. 

...is having fun watching some old movies.  Last night was, "Bill and Ted's Excellent Adventure".

...  I still plan on publishing updates most days, but I'm beginning to see that it may be difficult to maintain the daily posts.   Don't be worried if I miss a day.   

...church today was fabulous.  The sacrament talks were amazing and the lesson taught by Bishop Faust particularly touched and inspired me. 

...the priests came to the hospital and brought the sacrament to Spencer again.  An LDS nurse on duty was also able to join in. 

*******************************************

“God expects you to have enough faith and determination and enough trust in Him to keep moving, keep living, keep rejoicing. In fact, He expects you not simply to face the future (that sounds pretty grim and stoic); He expects you to embrace and shape the future--to love it and rejoice in it and delight in your opportunities."

Elder Jeffery R. Holland

*******************************************

Healing

I mentioned in a previous post that I went to a hospital-sponsored support group the other night.  I had high hopes for it to be a healing place where I could open up and connect with other parents going through similar trials right now, but it didn't turn out exactly how I expected.   

I was a little nervous when I walked in the door and found exactly six people there.  Me, the social worker, the chaplain, a Spanish interpreter, a Vietnamese interpreter, and a woman who spoke only Vietnamese.   I was honestly tempted to walk out right then and there, but then the social worker mentioned that she thought more people would be coming soon, so I decided to wait it out. 

However, upon the commencement of the meeting and hearing the low constant mumble of the Vietnamese interpreter translating every word that was spoken, I started concocting ways I could finagle my way out of the meeting. 

Bless the social worker's heart, she tried her darnedest to engage both of us in opening up and sharing our thoughts and feelings, but if you think listening to someone talk with an interpreter sitting 3 feet away madly translating every word was hard, talking with an interpreter sitting 3 feet away proved to be even worse for me.  I found myself obsessing over whether Mr. Vietnamese Guy could translate what I was saying correctly, or if I needed to slow down or pause for him.  In the end I spouted a whole bunch of disconnected mumbo jumbo--probably all translated very accurately. 

I never did leave and instead of the whole night being a wash, I was fascinated when Hung (the Vietnamese lady) shared how her daughter (also a 16-year-old AML patient) came to her diagnosis.  They too had to go through a process to get there and in the end, she was diagnosed by a doctor other than their normal doctor. 

Her words, via the interpreter, really got me to thinking about my feelings about how everything happened in Spencer's case, especially recently realizing that Spencer's original trip to the doctor was on December 9th--an entire month previous to when he received his diagnosis.  

I remember leaving that original appointment rather frustrated  that the doctor had really focused her energies on only one of the symptoms (the headaches) and didn't even attempt to link the headaches and the vomiting all together.    I mentioned the vomiting several times during the visit and made it clear that the vomiting was much more interruptive of Spencer's life than the headaches were, yet even when she weighed Spencer and discovered that he had lost 15-lbs. since June,  she still wasn't concerned.    I left the appointment mad at myself for even mentioning the headaches when he was much more bothered by not being able to exercise. 

In all the reflecting that the support group meeting triggered in me, I realized that although I've certainly wondered how things would be different if his diagnosis and treatment had started a month earlier, that I harbor absolutely no regrets about how we approached Spencer's care and I feel no ill will whatsoever toward the pediatrician who missed the diagnosis a month earlier. 

I know that Spencer's presentation of symptoms was really unusual.  In fact none of the oncologists at the hospital had even heard of vomiting only when exercising as a symptom.  He had no bruises, no rashes, no fevers, and none of the other tell-tale leukemia symptoms that would have alarmed his physician (and mother) more.   Everything was vague and explainable by other things. 

And in retrospect,  I am deeply grateful that this big upheaval in our family occurred right after the holidays, rather than right before them.  We had a wonderfully laid-back Christmas and New Year this year--probably more laid-back than we'd ever had before.  We didn't travel anywhere.  We didn't go to any parties.  We didn't have any out-of-town guests.  We just spent a lot of quiet time together as a family and now I will always treasure those holiday memories as a gift of peace and calm right before the storm.   

I guess the support group was more healing than I thought. 

****************************************

Spencer

his throat is hurting again, although thankfully not quite as bad as last time.  The options for intravenous nutrition did not sound pleasant, so he needs to keep eating! 

Saturdays in the hospital are quiet. 

He's got a low fever again (100.0).  :( 

*********************************************************

“Healing blessings come in many ways, each suited to our individual needs, as known to Him who loves us best. Sometimes a ‘healing’ cures our illness or lifts our burden. But sometimes we are ‘healed’ by being given strength or understanding or patience to bear the burdens placed upon us...”

—Dallin H. Oaks