Chemo Yesterday...

Gracie had chemo yesterday. Her sweet and helpful brother, Tanner went along. It's hard for both of them, but they support each other. Grace received Vincristine and her third dose of Doxorubicin. The doctor warned that we should really start seeing strong steroid side effects (appetite, mood swings!!! etc.). The Doxorubicin is definately taking effect. Grace is pale as a ghost, exhausted, and her ANC (absolute Neutrophil count) went from 3, 100 two weeks ago to 800 yesterday. We are told it could reach 0 and we just have to cross our fingers that she'll not get a fever or any sort of infection, or she'll be back in the hospital. The nurses have told us that Grace shouldn't go to any closed in places-malls, church, movies, etc. Of course, the doctor keeps saying live life as normally as possible, and just use really good hand washing, etc. We're erring on the side of caution and sticking around home! Many people have asked if her hair is coming out. In answer to that, yes it is. It is really thin, but still there. Although, in a fit of a toddler tantrum, Eva pulled on Grace's hair this morning and a big chunk came out. Grace was, needless to say, VERY cross with her baby sister. But, through it all, Grace remains as sweet as she can be under the circumstances. She is really enjoying books, movies, drawing and laying low because she's so tired.

Tanner has had fun over Christmas break...we don't know what we'll do without him when he goes back to school. He's such a happy medium and a source of fun in our home. He's crazy about Star Wars and making up all kinds of battle scenes with his figurines.
Eva is hilarious right now. If you give her a kiss, she wipes it off and laughs at you! She loves reading books and she is constantly following Annabelle around saying "sit and good girl" (more pronounced Goog Gil). She also calls JR and me "babe" constantly. We are in for trouble!

Merry Christmas to you!

Each Christmas we relish in the fun things of the season. We love the sights, smells, excitement and love the holiday brings. But, this season...the feelings are stronger. Our love is deeper, each time we hug and tuck our little ones in at night...we hang on a little longer. And, this Christmas we are so thankful we got to be at home and not at the hospital! We got the best gift ever possible. Grace felt well and hung on until...well...what you see in the picture (and then got WAY too tired). Tanner, Grace, and Eva really loved their Christmas!
We would be remiss if we didn't express our thanks for ALL that has been done for our family! There have been so many people who have blessed our lives and who have demonstrated the good, compassion, and love that this world offers. It is you, all of you, who have taught our children what service is and how to bring peace and comfort in a time of turmoil. We are so grateful! You have changed our lives and our experience through your goodness. And, hopefully not being too candid here, I have to say that we are so grateful to our Heavenly Father. We have really had a divine hand looking out for us. On this Christmas day, we want to express how grateful we are for the greatest gift that humanity has known, the birth of Jesus Christ. And, perhaps more miraculously-the way that His life was spent and the purpose for which He came. We are grateful that because of his life and sacrifice we can be together forever and that Grace, nor any of us, ever have to wander this world aimlessly or alone. Tonight, I've been thinking of what Mary must have felt as she swadled her little child, knowing his life's course. I also have felt more tender towards Joseph, knowing in his arms was the Savior of the world, and the responsiblities he must have felt to raise him well and keep him safe. JR and I are so blessed to have three children. And, we are so blessed that we can walk hand in hand with them through the good and the bad.

The Novelty of snow....

Is wearing off! It's so fun to have snow here, being from Utah and all. But, I must say...when you are completely snowed in and can't back out of your driveway...and yet the doctor says find a way and bring her to chemo-the snow presents a challenge. Thankfully, the Sands were gracious enough to drive JR, Tanner, and Grace to her chemo appointment. The hill to the hospital was closed-so they took the tram. That was a really fun part of the experience! Despite how nervous Grace gets for her appointments, she did very well and is brave as always. She is actually feeling pretty well tonight (it usually hits her a day or two later). This is her second dose of Doxorubicin, so we are just literally on pins and needles for when her hair is going to fall out. We just don't have any clue when or how it will happen...so we wait and hope to help as best we can. Overall, we feel really blessed that with just a few days until Christmas she is doing as well as she is. And, we have to admit...it's nice to be snowed in-it let's us focus on being together and what is the most important to us.

Still more snow mixed with freezing rain..

Freezing rain makes for strong snow fort walls.

Still snowing into the night...

WE ARE AT ABOUT 7 INCHES OF GREAT POWDERTHE KIDS (yes that includes Belles) LOVED PLAYING IN THE SNOW....

AND THEN THEY FOUND A WAY TO STAY WARM.

Delayed Intensification

Grace started Delayed Intensification on Tuesday. But, there was nothing delayed about our intense feelings. We have worried, been warned about, and prepared for this phase of her chemo for a while now. We know this will be eight difficult weeks for Grace in so many ways. From hair loss to steroid effects, it's just hard on such a tiny body.
Grace had a spinal tap on Tuesday and received intrathecal methotrexate. Fortunately, they listened to me this time when I was absolutely persistent that they use the Whitaker needle-it is smaller, and makes it less likely that she'll get her awful spinal tap headaches. The headaches usually hit about 3-5 days after the spinal tap, so we'll cross our fingers that it worked! The spinal taps are hard on her, and we know that the chemo there causes brain damage, however to what extent, we won't know until after chemo is done in two and a half more years. She also received vincrinstine through her port and a new chemo she's never had-Doxorubicin. Tuesday, she was exhausted and hurting. Wednesday she was achey and vomiting often. But, thankfully, today she had more energy and didn't vomit. We kept right on top of the nausea medicine so she wouldn't feel the effects. She actually did a dance off today and at moments felt ok. She is one tough little lady-always focusing on the good and wanting to have fun, despite the war that wages on inside of her. We are really proud of her, and grateful that her medicine is working. We are proud of how compassionate and understanding Tanner is and grateful that Eva is so fun loving and happy.
Grace goes back to the hospital tomorrow morning for chemo shots and then returns again on Tuesday for more chemo. She's a precious child, and it's hard to see her suffer. One thought keeps returning to my mind this week-why??? I don't know...it just keeps replaying in my head. "It is far better to light one candle then to curse the darkness."

Fun for Christmas

Send your own ElfYourself eCards

Snow serves many a purpose...

It provides water, beauty, playtime...and a postponed chemo/spinal tap time! Yeah...a day or two more without beginning Delayed Intensification! The doctor's orders are in...we are to stay indoors and stay safe!

A perfect day to play before Chemo begins....

We didn't measure, but we think it was about 3-4 inches of powdery awesomeness. We can't tell who liked it more, but it was a great distraction. The only sad part is that church was cancelled and Tanner was going to sing a solo in sacrament. Guess we will have to wait one more week. Gracie is scheduled to start her hard chemo and spinal tap tomorrow weather permitting. We will let you know how it goes.

Tanner the writer

Tanner has always impressed us, his parents, with his love of writing and the creativity he puts on the page. We thought it would be nice to share some of his recent poems. We will ask him for his permission when he wakes.

THE DETECTIVE

This detective has a serious face,
and a wrinkly overcoat tied up with lace.

He has a slanted brown top hat
and gets stuck in the middle of physical contact.

The policemen adore him, and timetaking things bore him,
and that is the brave detective.

ANACONDA/ROPE

It's body is sleek and slender,
if you pull it, it is very tender.

That's something you don't want to do ,
for then it will strike at you.

Sometimes it is tan,
and othertimes grey,
so sit down and pray,
that it won't wrap around you.

You can use it to swing,
but joy it won't bring,
for that will be the end of you

Getting ready for Christmas!

We LOVE Christmas time...and we have had fun preparing for it. The kids always love our night of setting up the tree and decorations and then fine dining on milk and cookies!

Have to give thanks...

Our family has a lot to be grateful for. We have found blessings in abundance, even admist hardship. We have seen miracles and endless acts of kindness. This Thanksgiving we were able to be with some of the people we love (Shele, Glen, Sam, Max, Nick) and we are grateful because it meant the world to us!

Be Thankful

Be thankful that you don't already have everything you desire, If you did, what would there be to look forward to? Be thankful when you don't know something For it gives you the opportunity to learn. Be thankful for the difficult times. During those times you grow. Be thankful for your limitations Because they give you opportunities for improvement. Be thankful for each new challenge Because it will build your strength and character. Be thankful for your mistakes They will teach you valuable lessons. Be thankful when you're tired and weary Because it means you've made a difference. It is easy to be thankful for the good things. A life of rich fulfillment comes to those who are also thankful for the setbacks. GRATITUDE can turn a negative into a positive. Find a way to be thankful for your troubles and they can become your blessings.~ Author Unknown ~

Chemo today...

Grace had her last round of Interim Maintenance today and received two forms of chemo. She has done really well today ( she has some really fun visitors to distract her)! Grace begins her hardest round of chemo yet (Delayed intensification) in 18 days. She will lose her hair, so we're told, she will more than likely feel pretty yucky, so we're gearing up for the second week in December and hoping she'll feel alright through Christmas. Wish us luck...and say hoorah for an 18 day break from chemo!

Rambling thoughts..........

We consider this blog a journal of sorts, or maybe a way to preserve the raw feelings that accompany our experience with Gracie's Cancer. I'm hoping one day we'll look back and be grateful we monitored the moments. Otherwise, we might believe it never REALLY happened. It feels that way sometimes...raw, and unreal, and far to fresh to fully be absorbed into reality. But, I think that the good thing about life is it's more black and white than it appears...you're either in that boat or your not, you either sink or swim, you either are or you are not. A few things I know: our daughter has Cancer. I know it is harder than I ever could have imagined, and yet somehow it has already been three months. I think we are actually living through this ( oh wait, yeah...I just pinched myself) This is real. I know that we have never had a feeling like we had when the doctor's told us Grace was sick. I know that life already felt like it was moving quickly with three children growing so fast. But, now...well...how to describe it except to say I feel like we're frozen in this very unfamiliar existence and we watch as the world just spins crazily all around us. It is hard to forfeit all control to circumstances so far beyond us. We felt this tonight. Grace had a spinal tap headache all through the night last night and all day today. She cried in pain...actually that is inaccurate...she screamed out in absolute pain. When they puncture her spinal column to give her Methotrexate, it disrupts the fibers in the spinal column and creates a little gap where spinal fluid can leak out, causing the balance of fluid to be off. All the reading I've done explains that it is the "headache of all headaches." Poor Gracie just wailed in pain, and all we could even do is hold her. She kept saying, "please just make it stop! When will it stop?" Our hearts just ached for her. She got to a point where we just laid by her in a dark room and she couldn't speak because it hurt too much. She asked her daddy for a blessing, which he lovingly gave. JR's voice is always so comforting. I see how it calms our children and makes everyone feel so safe. She was able to doze off and her spinal headache finally subsided.
Now, it is not that we like to share the harder side of Grace's experience. But, we hope to someday look back on this "journaling" and tell Grace a few things we knew for certain amongst all the things we couldn't understand. We know that Grace is unusually strong for someone her age. We know she has a kind spirit and worries about everyone else even while facing something so hard. We know that even when she spent the whole day crying in pain...she always smiled when Tanner or Eva came in the room. We know that there is power in prayer. We know that Grace has faith. We know that we are grateful she is surrounded by Tanner and Eva-two of the sweetest kids I know. We know that we have seen so much good in people and so many people doing so many wonderful things for us-we can't even begin to explain it. We know that somehow we will get through this...and perhaps gain a few things worth journaling about!

After chemo...

Gracie did remarkably well at chemo. She had three forms of chemo: vincristine, methotrexate (through her port in her chest) and a spinal tap-with more methotrexate in her spinal column. Grace continues to astound us. That day, she was happy, energized and playful. She lasted until 3pm that afternoon, and then got really nauseated and unwell. It is not that Grace doesn't feel awful most the time, but she tries so very hard to be happy and she is so joyful in general that she really can distract herself from her pain. Tonight, she was crying because her body ached so much. I rocked her to sleep, and relished holding our precious child. As her eyelids grew heavy, she softly said, "I just wish I didn't cause my Cancer." It seems that regardless of how you can reassure her that she has neither caused this, nor is deserving of this, a child's mind goes to the deepest corners of worrying. I told her that she most certainly did NOT cause her Cancer. We explained that Grace is also not defined by her Cancer. Rather, she is conquering something far bigger than most people ever endure! Somehow, she's making it through the hard times. And, there are many. It feels so inadequate to fall short of relieving her suffering. But, if holding her tight as she lulls herself to sleep is what we can do, at least she'll know she's never alone.

Family pics

Bracelets are in!

Thank you once again Grandma, Grandpa, Nick, Max and Sam for the second order of great bracelets.

We have been trying to keep track of who has requested them, but don't feel afraid to ask when you see us.

Eva

Spinal Tap in the morning

This has been a weekend of many ups and downs:

Tanner's soccer team had a end of the year party and it was great. We all got flu shots. As soon as Eva saw the doctor she started to wail, then Grace started cry and there we were, a family of 5 in a little room at the doctors office getting our shots to the tune of crying.

Grace has been very brave. She has not been feeling well and yet continued to try out many things this weekend. We are so very proud of her. Grace went to two birthday parties, one of which was a rollerskating party, and participated in the primary program for church, saying all her lines in front of the congregation. The rollerskating party was great. Grace played with her friends for a couple of hours and even Eva rollerskated between my legs. She has been in high spirits, but tonight she gave us a small peak into what goes on in her life and inside her head.

As Grace was eating an apple tonight she was starring at a picture of herself on our fridge. She began to cry telling me how she wished her life was what it was like before getting sick. She said she hated going to the doctor, hated taking medicine, and wouldn't be back to being healthy until she was a teenager. Kim and I tried to comfort her, but we wanted to let her express herself. When Tanner heard Grace he told her that she should be grateful , although she is going through a very difficult time, she would not want some other girl to have Leukemia who does not have the same family and friend support as Grace. This seemed to comfort grace and once again it was such a sweet moment revealing a little of their relationship. We tried to tell Grace that we felt the same way and wished that we could go through this instead of her. Grace responded "Oh it hurts so bad I would never want this to happen to you."

Because of her courage and positive attitude we forget that Grace hurts all the time. Because she is such a trooper it is nice to hear from her about her feelings. We know everything will go well with her spinal tap and Chemo in the morning and will post with some updates.

IT HAS BEGUN!

All day today Eva wanted to wear Grace's clip-on cheesified earrings.

I guess having Gracie as a big sister makes being a girly-girl inevitable.

Tanner's soccer team ended their season undefeated. We are so proud of Tanner. He had 4 goals in the last game and left it all on the field. He is also loving school and working very hard each night. He has been invited to participate in a program called Destination Imagination which starts on Fridays. He went to the first class and really enjoyed it.

Gracie has been doing well, but Kim and I have noticed what is called "Chemo Brain." We were warned that it would happen by the doctor's and hopefully it should be a short term thing. For example Grace loves doing her letters for homework, but once in a while she will forget how to form a letter. She knows that she has learned it but her brain is sometimes slow to catch up, which is very difficult for her when she has written that letter many times in the past. Last night she woke up in the middle of the night and was so frustrated. She could not express herself because she said she couldn't remember the word she wanted to use. We have been doing all we can to help, but have noticed that most of the time it happens when she is very tired. She is very optimistic and most of the day very energetic and happy.

The meaning of Grace

Grace's grandparents wrote her this tonight in an email:

Grace, look up the meaning of "grace" in the dictionary and then in the scriptures. Part of grace is acceptance of the Lord's will.
Think of this scripture. It reminds us of you:
"And now I would that ye should be humble, and be submissive and gentle; easy to be entreated; full of patience and long-suffering; being temperate in all things; being diligent in keeping the commandments of God at all times; asking for whatsoever things ye stand in need, both spiritual and temporal; always returning thanks unto God for whatsoever things ye do receive."

A day at chemo...

Chemo today

Grace has Chemo today. She has been getting two forms of chemo put directly in her Port in her chest every 10 days. The appointments take 3 to 4 hours because we always have to wait on her blood chemistry to make sure that she's not to low to administer chemo. She receives Vincristine and Methotrexate-two very strong forms of chemo. It usually hits her pretty hard for about three to five days, though predominately in the middle of the night. She often wakes up screaming with pain in her joints. She gets a bad tummy, as well, from the methotrexate and typically won't eat for several days (at least more than nibbles, though we usually insist on an apple or something and of course, water). She gets really nervous about her appointments, so today we're going to take her beautiful new teddy bear that our friends, the Sopers lovingly MADE for her! And, we're taking along her medical bag. I think Teddy is in for an arduous appointment via doctor Grace, but she'll make him better! After all, as she tells us, she is training to be an animal rescuer.

T's great soccer game

T had a great game on Saturday. Like always he hustled like crazy and got 4 goals for his efforts. He has one last game and we are so sad because he is so fun to watch. One more win and he will end the season undefeated!


Today Grace decided she wanted to go to church, but she wanted to wear her new dress Grandma and Grandpa Ujifusa gave her, her play earrings, her charm bracelet, her silver necklace, and her pink purse. We were fine with her request except for when it all came together she looked way to old. It was even hard for us to post this picture.

Happy Halloween!

Halloween is always a favorite holiday around our house! We love to decorate and we love the whole feeling in the air surrounding that night! We had fun making carameled apples, listening to Halloween tunes and just being together. We knew this would be a different Halloween, by virtue of what's going on in our life right now. We have always spent it all together, so it made us sad to divide up to conquer Halloween. Grace was able to make it to about 5 houses, and she had a great time. Then she decided she was too tired to go on. We are grateful she tries so hard, and is so good about knowing when it is all too much. She has done fairly well this week, despite chemo. She had a few nights up with aches and pains and has had a bad stomach from it (in fact she won't eat more than a few bites of yogurt, and a bite or two of dinner and she's done for the day). But, she still championed through Halloween-even visiting JR's office that day. Tanner had a blast! He and JR met up with friends and made out like bandits on candy. Tanner loved being a special ops army man! Eva thinks the whole concept of Halloween is just delightful! Who wouldn't love practicing a newly found walking skill coupled with free candy at each door? We hope everyone had a great Halloween!

A funny set of deviants...

Grace and Tanner are little buddies. They have so much fun together and, if Tanner can forget the harder effects of Grace's steroid on her personality, they will have sweet memories of this time and growing closer from it. They love to have sleepovers and one night when they were supposed to be sleeping we heard secretive giggles from our room. When we retired to bed for the night, we found them in our room-beautified in sleep masks (thank you Jet Blue)! When they look this cute it's hard to be mad! (we wrote earlier of Grace's surgery to insert a porta catheter through which her chemo would be administered. You can see the small circular scar where the tube went in, the line where it was placed and the bluish bump is the actual device. Hard to believe a little body can have so many battle wounds-she is so brave)!

Why?????

Eva makes us laugh! She is so funny, smart, and for a one year old is able to verbalize so many things. But, her trick of late stops us in our tracks. She now asks why! Isn't that something that is supposed to begin when a child is around 3 or so? If I say, "Eva, we cannot play with markers anymore-she says, "why"? After I tell her it is because she eats the tips off of them, she lays her head on the ground and pretends to cry. When she looks me in the eye and says, "oh un" I know she is sweetly begging for more lotion. But, I have to tell her no. What does she do? She asks "why?" Then, I have to spout off a mini dialog about how the last time she got a hold of it while I was on the phone with Grace's doctor, she managed to pour out an entire bottle and wipe it across every reachable surface. Why is a commonly used word in our household. Between three children we hear it often enough, but it still surprises us when our 15 month old shouts it out!

Chemo, leg warmers, and dancing

When Kim and I sat in the hospital listening to a team of doctors tell us what our lives were going to be like, we hoped and prayed that our daughter would be healed no matter what. We knew Chemotherapy was poison and as such we expected the worst. We expected and were grateful to have a bed-ridden child who would slowly, yet increasingly improve... There are many of those days and we are so grateful for the fact that we are out of the hospital and Grace is healing.

Today was a Chemo day. This morning Grace decided she wanted to go to school so she went to school and loved every minute of it asking to stay longer when it was done. She then went to Doernbecher to have her port accessed where they took blood, and administered two types of Chemo into her blood over the course of three hours. Yet, in true Grace form, she came home and rested for a little bit and decided she needed to dance, sing, and play. I guess even in the shadow of Cancer Grace cannot help but be herself...happy, joyful, sparkling, and energetic.

On a chubbier note Eva wore leg warmers! They were a perfect accessory for her chubby, juicy thighs. She has been an angel and loves to dance as well. Her favorite thing to do right now is to walk around our house pushing her baby in a stroller. Sometimes the stroller is filled with marbles, lotion, or hand sanitizer rather than the baby.

Tanner is still loving his new school and doing very well. He has two more soccer games to go. If they win both they will be undefeated. In his game on Saturday he had two great goals; one with his left and one with his right foot. His favorite thing to do lately has been to act out either battle scenes or football games while on the tramp. Kim and I sometimes listen as plays outside by himself yelling, making gun noises, and sports commentary. Sometimes even reenacting out the plays in slow-mo. Since T hates his picture taken the only one we got today is blurry because he escaped while we were shooting.

Random Recent Pics

I downloaded a bunch of pictures and thought I should update the blog.

We have had so much help from everyone and we are so grateful. From amazing dinners, to visitors helping with the kids and everything else, to taking our dog on vacation, to letters, emails, and gifts. We are so grateful and feel we will never be able to adequately thank all of you.






Tanner's Jogathon was a great success. Thank you for all the donations




Annabelle is getting gigantic. Here is a recent picture from Wu.

An Amazing Mother

I have taken over the blog tonight to do something I have been meaning to do for a very long time. I wanted to surprise Kim and therefore have not found a solid chunk of time to write this until now.

As many of you know Kim is an amazing mother and has such a tender heart. Since August 13, 2008 Kim has risen to the call of being a mother of a child who is suffering from cancer. She has showed me how to be strong, she has showed me how to be brave and has devoted every minute of her day to learning about Leukemia. She does not take the easy road, or the selfish one, rather she is constantly thinking about how to make our children's lives better, thinking of ways to better their days, thinking of new ways for them to be creative, and constantly trying to improve her parenting. Yet, she is also very hard on herself and for a long time blamed herself for Gracie's illness. Since we find out about Grace I think Kim has read 6 childhood Leukemia books, she has read every single word in every single handout given to us by the hospital. She is constantly thinking of ways to help Gracie and writing down questions to ask the doctors. I just want to express my appreciation for her and for all the amazing things she does. It does not have to take a family crisis to see all the amazing things my wife does, but through this I have seen strength and wisdom that astonishes me daily. She is tireless and selfless and I am so lucky.

Dating and getting married at such an early age did not lend itself to thinking about and evaluating all the minute details which make up a good marriage, a good wife, a good mother, or a good friend. Many individuals search a lifetime for a partner with these traits. I on the other hand won the lottery. I have been blessed with a wife who puts family and love above all else. I cannot express how grateful I am to go on this difficult journey with her. She is more than I could have imagined in a woman, mother and wife and Gracie, Tanner, and Eva will never know how lucky they are to have her as their mother.

Halloween is almost here...

There is nothing the kids like to do more than decorate our house for various holidays. So the spiders, the webs, the "billy bob" teeth, and wigs came out the other night. In addition, the kids made a Halloween gingerbread house so watch out for the black frosting. It looks like they all have it on their faces in one picture or another.

We also wanted to thank everyone for the amazing response we have had in selling the Team Grace bands. In fact I think we have sold out our stash and are going to be ordering more to make sure we have enough.

Team Grace band details...

We first wanted to say thanks for such a great showing of support with the Team Grace Bands! It will be so empowering for the kids to be proactive about her Cancer by helping others along the way. Each of you is instrumental in that! So, thank you sincerely for supporting us! Some quick details about the bands...there are two sizes :adult and child and the bands are 3 dollars each. Oh, and of course-they're super stylin' and sure to nicely accessorize any outfit!

Team Grace Bands

Some of you may have seen the pink bands Kim, Tanner, Grace and I have been wearing. Thanks to Nick, Grandma, and Grandpa we received a bunch. Gracie would like to sell them and donate the funds to the Doernbecher Hematology Oncology Department. Of course, they are hot pink and say Team Grace. If you would like one please contact us.