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. 

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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! 

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“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! 

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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. 

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“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

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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. 

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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).  :( 

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“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

Don't Forget

For those of you interested in joining Spencer in the bald  brotherhood,  here's a sample of what I'm looking for picture wise:   

Thanks to Taylor, a friend of Spencer's from church, who was one of the first people to show support to Spencer in this way. 

For girls who would like to show support without the dramatics of a shaved head, please consider donating your hair to Locks of Love, an organization that takes donations of hair of at least 10-inches long and makes them into wigs for children with cancer.  Colored hair is fine as long as it's not bleached or highlighted and hair must be cut off in a ponytail or braid (not swept up off the floor).  See the website for more details and DON'T FORGET TO SEND ME THE PICTURES! 

Please send pics to wawadehut@gmail.com

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Spencer

(a peek under the bed this morning)

The nurses said that most people start losing their hair 1-3 weeks after chemo has started (Spence is at day #16), but his hair is mostly still hanging on. 

The results from yesterday's spinal tap showed no white blood cells and no "blasts".  Yippee!  Now he just needs one more negative result (hopefully on Monday) and we can lay off the bi-weekly spinal taps! 

His ANC is '0' for the first time today.  ANC stands for "absolute neutrophil count" and is figured by a formula having to do with ratios of white blood cells, bands, and neutrophils.  Normal is over 1500.   This is an expected result of the chemo and it will likely stay at zero for a few days before gradually zigzagging its way back up to a high enough level (250-500 range) for him to go home for a few days.     It's now more important than ever that visitors are healthy, sanitize their hands before entering the room, and not touch him.   Thanks for helping Spencer to stay healthy (and loved)!

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"But behold, verily, verily, I say unto you that my eyes are upon you.  I am in your midst and you can't see me." 

Doctrine and Covenants 38:7

Aunt H's Hair-do's

While we sit here and wait for Spence to show some signs of hair loss (only a few small pieces so far), my girls are excitedly taking advantage of Aunt Heather being in town, so they can sport the prettiest hair-dos in town.

She may be a tax attorney by training, but my girls are convinced that Heather's mission in life is "Niece Hair Dresser" and sincerely hope that she stays in the DC area for a long, long time!

A glimpse at their pre-church hair this past Sunday...
from the left:  Emma, Cami, Ellie

Thanks, Aunt H!

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Spencer

He had his 5th spinal tap today.  He has another one scheduled on Monday. 

The new anesthesia and anti-nausea medicine made him extra sleepy, as expected. 

I went to our first parent support meeting tonight.  There was one other parent there who spoke only Vietnamese.  Everything the group leaders or I said had 2 minutes of translation to go through before we could go on.  We ended the session with some meditation involving visualizing a beam of divine light going through us and me almost falling asleep.  It'll take some convincing for me to go back.

I reviewed Spencer's original CBC (complete blood count) results today--the ones that sent him to the hospital in the first place-- and was shocked at how a good 3/4 of the elements they looked at were way outside the range of normal.   I can see why the pediatrician was alarmed.  (WBC=60.75, RBC=2.06, Hgb=7.4, Hct=21.3, Platelet=90) 

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"Trying to comprehend the trials and meaning of this life without understanding Heavenly Father’s marvelously encompassing plan of salvation is like trying to understand a three-act play while seeing only the second act."

Elder Neal A. Maxwell 

Dear Spencer,

I just wanted to let you know that there are easier ways to get someone else to clean your room for you than confining yourself to the hospital and getting poked and prodded a gazillion times a day.  Surely a little case of mono or a broken leg would have done the trick just fine.   Of course, since the hospital method did prove highly effective in your case, I hope you realize the shock you caused your dear mother when I saw the floor in your closet for the first time in years.  Carpet over the hardwoods in there?  Who knew?! 
Love you sweetie!  Get better soon! 

Love,
Mom

Spencer

the fevers have subsided! 

the mucositis is improved!

Spencer had a little big earwax removal procedure yesterday that went down in the nurses' record books for its pure awesomeness.  It was so impressive, in fact, that Nurse Becca saved the wax so she could show off its massiveness to her colleagues (and to me, who, to your relief,  resisted taking a picture of it for the blog).    With the wax gone though,  the doctors can see that he has an infection in his right ear.  He's on so many antibiotics right now already though, so he should be good. 

he's in process of receiving his 4th blood transfusion. 

he's devouring the Heroes of Olympus series.

they're trying a new anti-nausea medicine and anesthesia for tomorrow's spinal tap and they've warned us that it's likely going to make him extra sleepy for much of the day.  If you're planning on visiting on Thursday, you'll definitely want to call the room first to make sure he's up for it.   703-776-4513 

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"A merry heart doeth good like a medicine..." 
Proverbs 17:22

Reflections on Peace

It's hard to describe all that's gone through my mind since that first moment, two weeks ago today, when the pediatrician first uttered the word 'leukemia' to us.  I've had moments of sobbing panic when I let my mind dwell on some of the scary possibilities that may lie ahead for us.  Other times I just feel  a sense of mourning over the old life we used to take for granted.  A life where we our biggest concerns  revolved around homework, chores, and what was for dinner. Now we find ourselves muddling through talk of cytarabine side effects and other medical jargon we wish we could have stayed blissfully in the dark about.     

Looking back at the very beginning moments of this journey though,  when we were just beginning to glimpse the unknown paths ahead,  we have recognized the hand of God at every turn, even in the very timing of his diagnosis.

Just as I can hardly turn a corner without a set of arms enveloping me in a hug lately, we literally feel that we have the arms of God and an entire community around us every step of the way.  Though we do occasionally have those dark moments where we find ourselves faltering, overall we have felt a pervading sense of peace that no matter where this journey takes us, that we will be okay.   Not that it will be easy or not be filled with heart-wrenching, difficult moments as we watch our son endure pain, but that at the end of it all, that we will be okay...even better people for having lived through it. 

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So, amid the conflict whether great or small,
Do not be discouraged, God is over all;
Count your many blessings, angels will attend,
Help and comfort give you to your journey’s end.

Spencer's Signs

Today was a busy day, mostly without internet access, so this post will be quick. 

Here are the signs decorating Spencer's hospital room.   There are four signs all together and I love that they show a glimpse of the different communities of love that are supporting him through this trial.  Family, church friends, school friends, and lax friends.    

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Top left:  --made with dozens and dozens of staples by his six-year-old sister, Ellie, and signed by members of the family

Top right:  --very large sign created and signed by the FCHS class of 2013.  All the nurses are quite impressed with its enormity. 

Bottom left: --large banner created by the Vienna Ward Young Women and signed by the attendants of the stake dance last week. Bright, colorful, and filled with signatures, this sign attracts a lot of ooh's and ah's as well. 

Bottom right:  --laminated sign created and signed by his Rebelax travel lacrosse team. It's decorated with cool action shots of him playing lacrosse. 

As Spencer's parents, we want to express our gratitude to all of you who have embraced him and helped him to feel so loved through this (even when he's lethargic and not as talkative as usual).   Your support means more to him and us, than we will ever be adequately able to express in words. 

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Spencer

....had to get platelets twice today to get his blood counts up to par for his spinal tap.

...had his fourth spinal tap this afternoon. 

...will likely get another blood transfusion tonight.  His blood counts are dropping quickly now, as is expected as the chemo kicks into gear. 

...I caught the nurses in an error today when, as he was getting ready for the anesthesia for his spinal tap, the nurse mentioned his current weight of 60 kg.  Yet Glen had just told me last night that he'd weighed in at 55.8 kg. yesterday, so I insisted that I would feel better if they weighed him again, just to be safe.  Sure enough, he weighed 56.2 kg. today, a pretty significant difference of 9 pounds from what they were about to base the anesthesia amounts on.  

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“Fear not, I am with thee, oh, be not dismayed,
For I am thy God, and will still give thee aid;
I’ll strengthen thee, help thee, and cause thee to stand,
Upheld by My gracious, omnipotent hand."

Spencer Wants it to Be Known...

...that mucositis totally sucks.

...that morphine is lame, anticlimatic, and completely overrated. 

...that he happily accepts all donations of delicious soft foods, including muffins. (Thanks to  Bro. Dahlquist for bringing the only food Spencer's been able to eat all day)

...he is not sad about missing midterms this week.

Spencer
Despite his extreme throat pain (because of the mucositis), Spencer is actually quite a bit happier and more talkative today.   I'm guessing the transfusion from yesterday finally kicked into gear. 

He's lost about 10 lbs. since his admission into the hospital (25-lbs. down from June) and the mucositis is not going to help that.   He is now 5'9" and 120 lbs. 

My mom and sisters stayed at the hospital with him, so Glen and I could go to church together.  The priest quorum came and brought him the sacrament again today.

His first round of chemo is done!  Now it's just a matter of waiting until his blood levels drop and then come back up (about 10-14 days) and hopefully he can go back home for a week or so before starting his next round.   Apparently this next week, as his blood levels continue to drop, has the potential to be  quite miserable.  :(

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"Trust in the Lord with all thine heart; and lean not unto thine own understanding.  In all thy ways acknowledge him, and he shall direct thy paths."  Proverbs 3:5-6

Moving In...

We decided that if we're going to be long-term residents of room #513, that we may as well make it a little more comfortable...

...so we went ahead and added a couple inches of memory foam to the mattress! 

And it did the trick just perfectly.  The first night we put it on the bed, was the first night I slept past 5:00am since his entrance into the hospital. 

Of course, we still get woke up through the night, but now we are actually able to roll over and go back to sleep for a while. 

Sleep is good. 


Spencer

....received another 2 units of blood today (his 3rd transfusion).  Is it just me or does the room seem a little Twilight-esque whenever he's getting blood? 

....was running a slight fever last night (less than 100 degrees), but since infections are such a concern with this treatment, the nurses checked his vitals every hour, on the hour, through the night.  It was a long night (even with the memory foam)!  

....is still a little weak (even after the transfusion) and still has a sore back after the spinal tap on Thursday.  He is already dreading the next tap coming on Monday.

Good News!

You'll all be happy to know that leukemia has not robbed Spencer of his sense of sarcasm nor his appreciation for uplifting video clips: 

Thanks, Pete. 


___________________________________________________________________


Spencer

...is still a little low on energy today, but is feeling much better than yesterday.

...Spencer's spinal tap and chest x-rays came back  clear {some white blood cells, but no leukemia "blasts")!  He'll still have one or two more spinal taps next week, but we hope that the improving results will negate the need to have them so often. 

...wants it to be known that his mom can still be very annoying.

...Glen and I are going on a date tonight.  It'll be our first time alone since last Tuesday.   After that, we're hunkering down (one of us at home, one at the hospital) for a little winter weather that's supposed to be coming our way. 

A Hard Day

After a relatively uneventful first week, I suppose it was inevitable that Spencer's first day of feeling yucky would come along sooner or later.  He started the day with low blood counts--not quite enough to qualify for a transfusion--but plenty low enough to zap his energy level.  That combined with coughing all night and getting awakened early for the spinal tap, the day did not get off to a great start for him. 

Still he was happy enough going down to the spinal tap and even commented to the nurse on how the spinal taps were becoming rather run-of-the-mill for him.  All along his week of treatment the nurses have been pleasantly surprised at how well he's done with all the procedures and treatments--with him experiencing very little in the way of side effects. 

Then today it hit him.   The nurse thinks it's all from the spinal tap and the anesthesia that was used, but today he got the horrible spinal backache and a queasy stomach.  That combined with the low blood counts made for the least fun day for him yet.   

We're hopeful that with a little infusion of blood tonight, some Tylenol, and some talkative visitors, that tomorrow will be a better day.  

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Thank you for all of your prayers, notes, and kindnesses!  We truly have felt so buoyed up by all of you and can't imagine how hard of a challenge this would be to face without the amazing support of the earthly and heavenly angels surrounding us right now.    

What Does He Do All Day?

With his recent exit from the average teenage life, suddenly Spencer has found himself with lots and lots of extra time on his hands.  He's still feeling reasonably well, yet he has no homework, no chores, and nowhere to go. 

So what's a boy to do? 

Besides music, Facebook, reading, and video games, he's also recently discovered the floor's plasma scooter.   Usually he's toting around a pesky IV tower that cramps his scooting style, but this day he took advantage of being unhooked for his shower, and he zipped around the floor several times.     Eventually he wants to beat four-year-old Shawn at a race, but I'm thinking he's got some serious technique to hone before he gets that fast.

Although he's one of the "old guys" on the floor, we're learning that there are definitely some pretty cool perks to being a pediatric patient (other than getting sedated for spinal taps).  Besides the carts of books that get wheeled around twice weekly, there are often special visitors as well.  There was an art therapist that dropped by and offered a place for him to express himself artistically.  He kind of scoffed at that idea, but was a little more impressed with Turley the magician, who came and not only showed him a few tricks, but also gave him  a book of some tricks he could try himself.   We've been absolutely amazed at all they do to make these kids and their families feel as normal as possible while their lives are turned upside down.  What an amazing place! 

Sleeping aside, Spencer's absolute favorite thing to do is to  talk and laugh with his visitors.  The numbers of visitors are a lot fewer during the day, now that school is in session, but it's settling out to a good amount--a steady stream, without the big rushes all at once.  Calling the hospital room before a planned visit is always a good idea, just so we can give you  a head's up if someone else is set to arrive around the same time.    His siblings (and cousin) love to visit and I think are a little jealous of all the "fun" it seems like he has here.  

Now we just need to get him some homework to do.* 

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Spencer
*In order to stay caught up in his school work, apparently the hospital works with the county and will bring a tutor to him here in the hospital for a few hours each week.    I guess reading, checking Facebook, scootering, and playing video games can get a little old after a while, because today Spencer informed me that he actually wants some school work to do.   I immediately emailed his school. 

Yesterday was the best day yet for visitors. He still got a steady stream, but there was never a huge rush, and he had at least 20 minutes of downtime between each group.  Perfect! 

He's getting another spinal tap this morning, so that means no breakfast once again. 

He coughed a lot last night, a remnant of the cold he came here with exacerbated by not being able to take a drink, but he is finally sleeping peacefully...just in time to wake him up for his spinal tap.    

For those interested in donating blood directly to Spencer, we were informed that it is best to wait until after the bone marrow matches/non-matches have been determined before proceeding with any blood drives.  Apparently once a patient has received someone's blood, it diminishes the likelihood of accepting that person's bone marrow, should the need arise.  We, of course, are still hoping and praying for an in-family match, but we want to keep our out-of-family options open just to be safe. 

How Many High School Juniors Does it Take....

to convert this transformer back into a truck?

Well, when you're cute, bald,  and ask really nicely...

maybe you can get four or five of them working on it for over half-hour...

and get it *almost* back to truck status. 


Spencer

Other than dismally failing at transforming a toy that says it's for ages 5 and up, Spencer is....

awesome! 

Sibling Love for Spencer

Today was the day....


the kids overcame their fears...

and we all got our blood tested to see if any of us might be a bone marrow match for Spencer. 

(Don't mind how completely exhausted I look in this picture.  I'm actually much more well-rested than I was earlier in the week.) 

Emma wins the prize for bravery when they had to poke her twice when the first one didn't work.

In order to get our blood tested, I had to register us all in the hospital.  I was kind of annoyed at the long process, that included us each getting hospital bracelets, but after we were all registered and they handed each of the kids a very generous goody bag, no one was complaining anymore. 

Especially Ellie...

and Emma, who decided she wouldn't mind getting her blood tested every day...if she got prizes this cool.   

FYI  Each sibling has a 25% chance of being a full match,  but it will take a few weeks to find out the results.  Of course, I will make an update when we find out. 

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Spencer

He celebrated his "week-i-versary" in the hospital by having a relatively quiet day, without any procedures and without as many day-time visitors now that school is back in session. 

He got some noise cancelling Bose headphones from his uncle, which he has pretty much dubbed the coolest thing ever.    I plan on borrowing them next time I want to take a nap.  

His friends came and hooked him up to Xbox Live.  I don't know exactly what that means, but apparently it's pretty cool too. 

We've met a few other Hem-Onc patients the last few days and it's been fascinating to hear their stories.  Obviously Spencer is one of the big kids on the pediatric floor, so the kids are fascinated with him and his big brotherly vibes.  We love watching the kids,  mostly bald and wearing masks, while they race, without a care, around the corridors on their trikes.  

most popular kid in town

Who would've ever thought that getting diagnosed with leukemia would make you the most popular kid in town? 

Since first announcing his diagnosis on Wednesday night, his hospital room has been filled with visitors....

Some of his school friends are close enough to walk to the hospital...

and they come, chat, and play xbox games (with the Xbox the FCHS class of 2013 purchased for him a day after his diagnosis).  You rock Jags! 

Our stake presidency came yesterday and again today (along with our Bishop) to give Glen and I blessings of help and comfort through this trial. 

Friends from church have a little further to drive than his school friends, but they come anyway....

talking, laughing,  and playing magic (the young men's favorite game).

To all of you visitors....
thank  you for not coming when you are sick, thank you for diligently using the hand sanitizer (even when it squirts you in the face), thank you for being positive, and thank you most of all...

 FOR HELPING SPENCER FEEL SO LOVED!!!!

(by the way, if you want a picture with you and Spencer, just let me know next time you come.  I sometimes forget to pull out my camera, but as you can see, you never have to twist my arm too hard to take a few.)

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Spencer

His blood counts continue to drop, as is expected with chemo. 

Today he was officially declared "neutropenic" which means he needs to wear a mask in the hallways, visitors shouldn't touch him, and he can't eat raw fruits, veggies, fast food,  lunch meats, soft cheeses, etc. 

He got another spinal tap today.  They are checking his white blood cells and injecting more chemo into his spine. 

He wasn't near so entertaining coming out of sedation as he was the first time, when he sat up, started ripping at tubes, and asking incessantly when he could go back to the room. 

He gets 10 hours of chemo tonight.

We are preparing for a head shaving party soon (if Spencer approves).  Let me know if you want to join us (either in person or by video). 

How Are We Doing?

In truth, we are okay. 

We've all cried more tears than we care to count in the last few days, but for the most part, this whole leukemia thing is becoming like a job to us.  We take notes.  We ask questions.  We answer phone calls and emails (when we can). We talk to doctors.  We try to keep other people up to date.  We try to keep track of all his meds.  All this, while attempting to take care of ourselves and keep the other kids' lives as normal as possible.   It's exhausting, but good to be engaged. 

One thing we're done with though is researching online.  We will still look up a procedure or medicine we want to know about, but we're done with blanket leukemia research.   There are way too many depressing statistics and we've gotten to the point, where we simply don't want to talk about stats anymore.

Spencer is Spencer and the treatment will work.   Or it won't. 

But either way, we have faith that God's hand is ever present in this.   And we need look no further for evidence of this, than at Spencer himself. 

A week ago today, he was sitting in the cardiologist office, so annoyed that he needed to get a blood test.   He probably complained to me a dozen times about how much he hated needles and did not want to get his blood drawn.  Now here we are a week later and he's sitting in a hospital bed with a scary diagnosis, feeling kind of lousy, he's been poked and prodded countless times and, yet he is calm, uncomplaining, and filled with faith. 

Not discouraged.  Not resigned.  He is truly at peace. 

 "Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid."  John 14:27

And we feel that same peace.

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Spencer
...received 2 units of blood yesterday and got blood splattered all over him in the process.  I'm glad Glen was there when that happened.  Ew! 

...the blood immediately helped him feel much better and he did some laps around the Hem-Onc unit.

...his blood counts are dropping quickly

Today I Am Grateful...

--That we live a mere three miles away from one of the best hospitals in the area.  People from all over Northern Virginia come to Fairfax Inova for treatment and ofttimes getting here is a huge burden.  While Spencer may end up at Children's Hospital in DC, especially if he needs a bone marrow transplant, for now I am exceptionally grateful to not have a long commute to the hospital.  Additionally, his high school (and most of his school friends) are less than a mile away and church friends are 3-4 miles away, so I feel the proximity has definitely helped them to be able to stay connected better.   

--That we have good friends with kids similar ages to Emma, Adam, and Ellie who live five doors away from us.  The Tapps are only here in the area for 18 months, but their proximity to us and ability to help with the kids at a moment's notice is a true God-send. 

--That my sister, AnnaLisa, lives nearby.  Having someone that knows my kids' routines and the ins and the outs with our house is a big blessing to us. 

About Spencer today:
The chemo is starting to make his  blood counts drop, so he is getting pretty tired.

He likely will receive another blood transfusion today.  That will help with the fatigue.

He is still in good spirits and loves all the visits, but I think we need to work on keeping visits shorter (15-20 minutes) and making sure that there aren't too many visitors at the same time.   Someone was going to look for an online calendar or something that we could use to try to stagger the visits. 

He is a little congested, which has clogged up his ears.  Don't be surprised when you visit if he has to say, "Speak up Sonny!"   

Glen and I are going to let my sister stay with him for a couple hours today, so we can sneak out to church together.  The priest quorum will bring the sacrament to him. 

Still praying that we will find an in-family bone marrow match.  The blood tests are on Tuesday.