I'm so sorry that we haven't updated since our November 28th MRI. It's really hard to update since I don't have a computer at home. The tumor looks stable and although they don't notice a difference, I thought it looks a little better. At this point in the game, the next possible hurdle is the MRI in May a few months after we go off the medications. The tumor might looked flared, but that could just be that a larger amount of blood flow has returned to the area since we will not be taking the med that restricts blood vessel growth anymore. We'll see. It could look great too, which we're optimistically hoping for.
We got all of his scans on CD and I was hoping to put one on here to show everyone, but it's copyrighted and there's no way to save the images.
Mitch has been trying really hard to improve his behavior and seems to have suddenly grown up in the past week or so. I was really proud of him the other day at school when one of the little girls was bossing him around and instead of fighting with her, he handled it by soliciting the teacher's help. I know it doesn't sound like a big deal, but it was a glimpse at my old Mitchell a bit older and I loved it.
Our sweet little friend Luke who has an epyndamoma successfully completed his radiation and chemo this past June after 8 months of treatment and was stable until this past week when they discovered more tumors had grown including one on his spine. Please pray for him and his family. They are really great people and our dear friends during our stay in Seattle. The hardest part about this trial is the constant ups and downs. There's rarely a middle ground and it becomes exhausting.
Thanks for your support everyone! We cannot do this without all of you.
Friday, December 9, 2011
Friday, November 11, 2011
Finally Pictures!
Poor Mitch has had a hard few weeks. Still doing great, just struggles day to day with behavioral outbursts. We'll get it figured out and I'm sure things will be well. Our next MRI is Nov. 28th. Here are pictures from this summer and fall.
We love our sweet Mitchell dearly. Yes, this is all very hard, but we can do it and we'll keep doing it because we love this little boy "To infinity and beyond!" (Then Mitchell replies, "I love you Woody!")
On October 23, (Jackson's birthday,) our sweet little friend Peyton passed away. We pray for comfort for her family. I KNOW these special angels who come to earth and fight these battles hold special places in their Heavenly Father's heart. I pray I can care for my little sweetheart as his Heavenly Father would have me do.
Mitch at the library.
Playing with brother and sister.
Mitchell and Aunt Sharon's baby sheep.
Always love the pony rides at Remlinger Farms!
With cousins Jake and Mackayla
Snoqualmie Falls
Cherry Hill
We love to see the temple!
Lagoon!
Thumbs up meant he wanted to go on that ride again, thumbs down meant no thanks.
Cooling off in the fountains with grandma.
This was a double chemo week for Mitch, plus he caught a horrible stomach flu but he was a trooper!
Wipeout course with our cousins.
HAPPY HALF BIRTHDAY MITCHELL!!!
He wanted a water gun fight and we had tons of friends show up to play and celebrate.
Central Washington Fair 2011
Climbing through the laser beams at Jackson's spy training birthday party.
"Take a picture of me mom!"
Happy Halloween MJ!
We love our sweet Mitchell dearly. Yes, this is all very hard, but we can do it and we'll keep doing it because we love this little boy "To infinity and beyond!" (Then Mitchell replies, "I love you Woody!")
On October 23, (Jackson's birthday,) our sweet little friend Peyton passed away. We pray for comfort for her family. I KNOW these special angels who come to earth and fight these battles hold special places in their Heavenly Father's heart. I pray I can care for my little sweetheart as his Heavenly Father would have me do.
Thursday, October 6, 2011
Oh-Bla-Di, Oh-Bla-Da, Life Goes On
The craziness of life seems to have taken on a snowball effect. Although I keep thinking life can't get any busier/crazier, it does. And yet I still think that just around the corner is a patch of easy peacefulness--must be a mirage!
Our church's general conference was this last week and it was as if I came into sit by the fire after plodding along through a blizzard. I felt that patch of peace; a feeling of optimism that I CAN do all of these things; and such a happy gratitude as well. Now I'm back out in the blizzard with that memory of the fire to keep me pushing forward.
I've had two dear friends struggling with major illness and I want to serve them and their families. My responsibilities at church are also very important to me, but time consuming. Our little puppy is as good as they come, but still, it's another body to care for. The kids' schedules keep us occupied every night of the week. Not to mention drs appointments and volunteering in classrooms. My house is definitely not as tidy as I'd like it to be these days and my chances to run are few and far between. I know I need to let some more things go.
Mitchell is doing really well physically. For the past month we've had him in gymnastics and put PT on the backburner. He lost interest in our sessions, and the idea to try gymnastics came to mind. He LOVES it and exerts more effort in class than the rest of the week combined. He has made progress too! He's jumping off two feet now (albeit not very high), and seems more agile to me. Tonight during his class I tried to hold back tears. He tries so stinkin' hard and yet there still is such a large deficit in what he can do and should be able to do. It's so hard not to remember my wild little boy bouncing off the walls and wonder what's going through his mind now as he can't make his body do what he wants it to do. Yes, I am so grateful that he's come this far and yet for him, I'd be so ecstatic to see him free from these limitations. Tonight as I thought about all of this and his innate optimism, I realized that his little spirit is compatible with this trial. I know he gets frustrated, but his optimism will always carry him through and continue to push him forward. That is something to be very grateful for.
He has also started preschool and seems to really enjoy it. He's spent some time on the "watching chair" (their term for time-outs), and of course I knew that would happen. He's angelic most of the time and suddenly a switch goes off and he loses all control. For that reason I don't like him out of my sight, but I know it's best for him to be in the world and learning how to deal with it. He told me a boy stuck his tongue out at him and that made him feel sad. He also said he plays by himself at recess. All things to be expected, but still so heartbreaking for a mama who is already so scared to send her little ones into the harshness of the world.
Other than the behavioral outburts I think we're doing really well. We are so grateful to all of our supporters out there! On a sad note, our sweet little friend Peyton (a dipg patient) is declining. I think about her and her family a lot each day. Please pray for them.
Our church's general conference was this last week and it was as if I came into sit by the fire after plodding along through a blizzard. I felt that patch of peace; a feeling of optimism that I CAN do all of these things; and such a happy gratitude as well. Now I'm back out in the blizzard with that memory of the fire to keep me pushing forward.
I've had two dear friends struggling with major illness and I want to serve them and their families. My responsibilities at church are also very important to me, but time consuming. Our little puppy is as good as they come, but still, it's another body to care for. The kids' schedules keep us occupied every night of the week. Not to mention drs appointments and volunteering in classrooms. My house is definitely not as tidy as I'd like it to be these days and my chances to run are few and far between. I know I need to let some more things go.
Mitchell is doing really well physically. For the past month we've had him in gymnastics and put PT on the backburner. He lost interest in our sessions, and the idea to try gymnastics came to mind. He LOVES it and exerts more effort in class than the rest of the week combined. He has made progress too! He's jumping off two feet now (albeit not very high), and seems more agile to me. Tonight during his class I tried to hold back tears. He tries so stinkin' hard and yet there still is such a large deficit in what he can do and should be able to do. It's so hard not to remember my wild little boy bouncing off the walls and wonder what's going through his mind now as he can't make his body do what he wants it to do. Yes, I am so grateful that he's come this far and yet for him, I'd be so ecstatic to see him free from these limitations. Tonight as I thought about all of this and his innate optimism, I realized that his little spirit is compatible with this trial. I know he gets frustrated, but his optimism will always carry him through and continue to push him forward. That is something to be very grateful for.
He has also started preschool and seems to really enjoy it. He's spent some time on the "watching chair" (their term for time-outs), and of course I knew that would happen. He's angelic most of the time and suddenly a switch goes off and he loses all control. For that reason I don't like him out of my sight, but I know it's best for him to be in the world and learning how to deal with it. He told me a boy stuck his tongue out at him and that made him feel sad. He also said he plays by himself at recess. All things to be expected, but still so heartbreaking for a mama who is already so scared to send her little ones into the harshness of the world.
Other than the behavioral outburts I think we're doing really well. We are so grateful to all of our supporters out there! On a sad note, our sweet little friend Peyton (a dipg patient) is declining. I think about her and her family a lot each day. Please pray for them.
Sunday, September 25, 2011
September is Childhood Cancer Awareness Month!
- Every day, 36 children are diagnosed with cancer.
- The average age of children diagnosed is six.
- More than 40,000 children undergo treatment for cancer each year.
1) Donate money for children's cancer research. Curesearch.org If you donate $36 this month, you are entered into a drawing for some vacations. Also, donations are matched by sponsors this month!
2) Volunteer with a local cancer organization. You can volunteer for a fundraising event or a community event in support of families dealing with childhood cancer. If you aren't sure what's available in your area, you can start with the American Children's Cancer Organization, the largest grassroots children's cancer organization in the U.S.
3) Give the gift of music. Purchase songs on iTunes through MyMusicRX.org and iTunes will donate up to 5% of proceeds to the Children's Cancer Association. Other examples of gifting music to local children coping with cancer can be found here.
4) Participate in a Fun Run/Walk, Bike Ride, etc. There are so many out there. Here are a few:
a) Find a Curesearch Walk near you.
b) You can walk or ride your bike to support the National Brain Tumor Society.
c) Leukemia and Lymphoma Society's Light the Night Walk (in Oregon and Idaho)
5) Donate your hair. Each organization has different guidelines which you can check out by following the links below.
a) Locks of Love For children who have lost hair from various types of medical conditions/treatments.
b) Childhood Leukemia Foundation
c) Pantene Beautiful Lengths For all cancer patients, not necessarily children. (This is the place I donate my hair because 100% of hair goes to wigs.)
6) Create your own event. I would like to do this!
Sunday, August 28, 2011
YAHOO!!!
Post radiation MRI #3
Stable--nothing new and nothing changed= GREAT! That's our goal. We feel very blessed. Of course no matter what we'd feel that way, because we are. Our Father in Heaven cares for each one of us in the exact way we need to be cared for. Whether or not we see that is up to us. I know He loves us and He REALLY loves my Mitchell. I know angels watch over my little guy all the time and I'm just so thankful for every day I get to be wrapped up in his arms.
I love the film "Life is Beautiful." Although it's so heart-wrenching and tragic it is such a good example of staying positive and choosing to be happy no matter what challenges come our way. I'm weak and succumb to fear and anxiety at times, but I try very hard to choose happiness and optimism each day because that is power. I know that our Father in Heaven blesses us too as we choose to see all that is good around us.
Thanks to all! I'm going to continue to hope because isn't it exciting afterall to think of having my little hero defeat the monster? He always tells me he's good at fighting monsters and I believe him.
Stable--nothing new and nothing changed= GREAT! That's our goal. We feel very blessed. Of course no matter what we'd feel that way, because we are. Our Father in Heaven cares for each one of us in the exact way we need to be cared for. Whether or not we see that is up to us. I know He loves us and He REALLY loves my Mitchell. I know angels watch over my little guy all the time and I'm just so thankful for every day I get to be wrapped up in his arms.
I love the film "Life is Beautiful." Although it's so heart-wrenching and tragic it is such a good example of staying positive and choosing to be happy no matter what challenges come our way. I'm weak and succumb to fear and anxiety at times, but I try very hard to choose happiness and optimism each day because that is power. I know that our Father in Heaven blesses us too as we choose to see all that is good around us.
Thanks to all! I'm going to continue to hope because isn't it exciting afterall to think of having my little hero defeat the monster? He always tells me he's good at fighting monsters and I believe him.
Monday, August 22, 2011
"Isn't This a Nice Time?"
If I had to choose Mitchell's most popular phrase, that would be it: "Isn't this a nice time?" He says it 50 times a day, and although at times the repetitiveness of it gets on our nerves, it has caused us to seriously reflect on the insights of this little boy. Often after that question, he follows it with observations, "The sky is so blue," "It's such a beautiful day," "We're having so much fun," etc. He's our own little Pollyanna. I'm so grateful for that. How could you not be a happy person with an influence like that in your life? Even on days where life just seems a little too much, Mitchell will ask me, "Isn't this a nice time?" and gratefully I'm forced to step back and look at my three little ones around me, my totally amazing husband, and our lovely home then respond with, "Yes Mitchell, it really is." Life is SO hard sometimes, but also SO great!
Mitchell has his quarterly MRI this Wednesday, August 24th. I don't know how I feel about it because honestly we just try to live in the moment and I've really not thought too much about it. Physically, he's doing spectacularly well. We recently signed him up for gymnastics. Obviously he will need our help to complete many tasks, but I think he'll enjoy the exercise a lot more than traditional physical therapy. Emotionally, he is struggling a bit more. He cries at the drop of a hat and loses his temper quite easily too. Could it be the tumor? VERY possible. Could it be a 4-year-old's moodiness? Absolutely. I remember Jackson causing me some serious grief about this age. Hopefully the MRI will look great and Mitchell will have some harsher consequences for his misbehavior as a result...probably not though. :) I admit, however, I am a bit nervous about sending him to preschool without me shadowing him every second. Yes, call me the helicopter parent--I'm keeping my birdies in the nest as long as possible!
We appreciate your prayers and support. I am so impressed by how our friends and family continue to walk this path with us because I'm afraid if the role was reversed, I might have abandoned ship by now. It has been a great example to me of enduring service and love. Thank you all!
Mitchell has his quarterly MRI this Wednesday, August 24th. I don't know how I feel about it because honestly we just try to live in the moment and I've really not thought too much about it. Physically, he's doing spectacularly well. We recently signed him up for gymnastics. Obviously he will need our help to complete many tasks, but I think he'll enjoy the exercise a lot more than traditional physical therapy. Emotionally, he is struggling a bit more. He cries at the drop of a hat and loses his temper quite easily too. Could it be the tumor? VERY possible. Could it be a 4-year-old's moodiness? Absolutely. I remember Jackson causing me some serious grief about this age. Hopefully the MRI will look great and Mitchell will have some harsher consequences for his misbehavior as a result...probably not though. :) I admit, however, I am a bit nervous about sending him to preschool without me shadowing him every second. Yes, call me the helicopter parent--I'm keeping my birdies in the nest as long as possible!
We appreciate your prayers and support. I am so impressed by how our friends and family continue to walk this path with us because I'm afraid if the role was reversed, I might have abandoned ship by now. It has been a great example to me of enduring service and love. Thank you all!
Thursday, August 4, 2011
July 2011
Sorry I haven't uploaded any pictures and this one was in my email box! I'll have to load summer pics soon. Here's our day boating.
Sorry to all of our friend and family following this! We have hardly been home this past month. We've had cousins visiting and are truly enjoying our summer. We've been to amusement parks, boating, camping, DRIVING (a lot!), and swimming. Lots of fun. Mitchell is doing really well despite getting much less sleep than he was used to during the spring. We're often out past bedtime and he's missed a lot of naps. His behavior was pretty bad for a stretch. It was very concerning, because behavior changes are a sign of tumor growth. It really could be a wide awray of contributing factors, however, so we've tried to not let ourselves get too worried. He took a neuro-cognitive test at the end of June. His knowledge base/skills are average for his age-group, so he is supposed to be fine for preschool. Of course his fine motor skills are lacking. His verbal/word usage was really high. In short, his weakness is in abstract reasoning, which will eventually become math skills/problem solving.
We've made it through 6 months of chemo, which is the bare minimum, so anything after this is great. We had some rough spots, but we made it through. Mitchell is a champ. He had his first opthamology appointment since November 8th (two days before we discovered his tumor had tripled), and although a bit awkward, we made it through smiling. The dr said his eyesight has improved from patching (yay) and when reviewing Mitchell's scans he said, "With the size of his tumor I can't believe he's doing this well!" Uhhh...what are we supposed to say to that?
I want to share a quote I found the other day and loved by Elder Scott from the Quorum of the Twelve Apostles: "May I share some suggestions with you who face...the testing that a wise Heavenly Father determines is needed even when you are living a worthy, righteous life and are obedient to His commandments. Just when all seems to be going right, challenges often come in multiple doses applied simultaneously. When those trials are not consequences of your disobedience, they are evidence that the Lord feels you are prepared to grow more. He therefore gives you experiences that stimulate growth, understanding, and compassion which polish you for your everlasting benfit. To get you from where you are to where He wants you to be requires a lot of stretching, and that generally entails discomfort and pain."
Chad and I are reading a book called, "The Price We Paid" about the handcart pioneers who crossed America in 1856. It has been eye opening on so many levels, but I've found myself comparing trials/experiences with them. The trial doesn't matter, but there seems to be the same fundamental principles in trials that we all must learn. I am so grateful because I CAN see that I'm learning them and while I still have a LONG way to go I feel so grateful the Lord has blessed me with enough knowledge for it to make some sense.
I have a beautifully talented penpal mother I'm corresponding with whose son is also battling brain cancer and she recently wrote this on her blog: "[As we celebrate our anniversary I realize] there's a shadow there that has changed us forever. It hasn't all been bad change. A lot of good change, actually, but still some very real heartache that we didn't anticipate years ago. " Chad and I just celebrated our anniversary too and I agree. I never imagined I'd experience this kind of trial and this much heartache, but from such intense pain CAN come overwhelming joy. I have a better understanding of what an eternal marriage "through thick and thin" means and I am completely devoted to my sweetheart no matter what. I also understand how incredibly blessed I am to be a mother and entrusted with these little precious angels. I have truly savored every second my little Eden Joy is awake and I didn't always do that before with the boys. I just feel so blessed. I don't know what's around the corner, but I know at least part of it will be really great.
Friday, June 24, 2011
June 2011
Has it really been a month since our last post? That goes to show how busy our lives have been. We had some cousins in town at the end of May, celebrated our Grandma's birthday, and Jackson's stellar year in kindergarten. Then we were off to Boise for a week, then my sister and her girls joined us on the trip back and stayed for a few days helping us with our bi-monthly Seattle trip. When we went to Boise, being the absent minded mama I've been lately, I forgot Mitchell's oils. When we first started on the nasty cancer fight in November, my brother who is a doctor of physical therapy and very much into natural medicine, felt inspired to send us some essential oils. Without researching, frankincense and myrrh came to his mind, and then when he did start reading up on them, studies have shown that frankincense in particular is able to move through the blood-brain barrier and has been successful in prolonging longevity in brain tumor patients. So, mostly because I thought, "Why not?" and because I love my brother and respect his passion for natural medicine, I began using these oils on Mitchell's reflex points on his feet and along his spine and neck. Now back to Boise. Perhaps it was a combination of fatigue from playing hard and the lack of oils--I don't know--but Mitchell digressed each day we were there and by Friday was much weaker. He woke up screaming that his leg was hurting and was not nearly as peppy as he has been.
We began the oils Saturday when we returned (8 days of no oils) and Mitchell has steadily improved this week. Monday, however, he was still a little lackluster and his blood platelet levels were just below the cut off point to allow chemo so we returned home. Yesterday we had his blood drawn again and they were back up in the safe zone, so off to Seattle we go again on Monday. I know conventional medicine frowns upon assumptions like mine, and perhaps it was a strange coincidence, but from my observations the oils work!
The up and downs of this process are very difficult. There have also been several challenges in my "circle of influence" lately that have all culminated in a feeling of standing at the foot of the tallest mountain. It all seems so overwhelming and utterly exhausting. Yes, I am very tired in case you're wondering why I look it. I don't know how anyone could get through something like this without the gospel and a testimony. It means everything to me and although the mountain seems impossible, I know that with the Lord I can do it. Also, lucky me, I'm married to a very patient and loving man who always reminds me to look at the bright side.
This last week we went to our cousins the Trees' house to swim and Aunt Sharon brought out her baby sheep. She keeps it in a diaper and has even sewn it a skirt. It was totally adorable and the kids fell in love. Tuesday, May 24, 2011
MRI Results May '11
Good news! Tumor is stable with no new lesions and the degree of enhancement on the post contrast images has marginally decreased. (In layman's terms, his tumor's sponginess has decreased, which means his medicines are working.) We're very grateful and know that our combined faith is contributing! Thank you everyone.
Sunday, May 15, 2011
Spring Update
We've had some great memories the past several weeks. Easter, birthdays, fishing... We are enjoying the sunshine (and enjoy listening to the rain). I cannot believe how quickly the days are going by.
Mitchell is becoming more affected by the chemo. This last round of temodar ended with two puke bucket cleanouts, which really is nothing compared with so many other children. His other chemo--irinotecan--is progressively causing more nausea as well. He is amazing (once again) in how bravely he handles everything. All he says is, "Mom, my tummy hurts. I'm going to 'pook'," and then he does and it's all over; no whining, crying, or complaining. He is such an example to me and I hope I can be like him someday/everyday.
He has a strange obsession with death lately. I'm not sure if it's coincidence, or if he's understanding/hearing more than we think he is. He constantly is saying, "I/We don't want to die. We want to be together forever," and "Jesus saves us/takes care of us/was recognized (his word for resurrected)." He has also reminded us & Jackson (as if we need reminding) to pray that he will get all better and not be sick anymore. He wants SO badly to run and play normally again--I can see it in his eyes. And then, at the same time, some days it's too hard to try. I, personally, want VERY badly to see him regain the ability to move easily without pain and struggle. The other day we were at the park and he had many friends there who he desperately wanted to keep up with. I helped him get to where they were, and he played for a short while with them and then the other kids were off onto something else and I saw Mitchell, standing alone. I asked him why he didn't at least try to leave that spot and he said his legs hurt. The other children are really so kind to him. They want to play with him, but they are after all just children with limited attention and focus. Mitchell never complains and contents himself with talking with me or playing with Eden. Whenever anyone comes to the door he bolts from wherever he is and runs to talk with them. Today we were celebrating our little cousin's birthday and the three cousins (including Jackson) were outside playing while Mitchell, sitting next to me, was looking out the window watching them. Moments like that I can feel my heart tearing for him. But again, he never says a word about it. Right now I am getting teary-eyed. I love this little boy so, so, so very much and I'd do anything to see him whole again.
Not to add to the downer note of this post, but my mother-in-law shared with me something that happened yesterday. She was doing a puzzle with Jackson and Mitchell and after a while Mitchell got down from the table to go do something else while Jackson continued. Outside sirens sounded and Jackson jerked up with a panicked look on his face and started frantically asking, "Where's Mitchell? Where's Mitchell? Are they coming to get him?"
I hope I'm not too depressing today. We still feel a lot of peace, faith, and hope. That doesn't mean that emotions aren't raw and difficult sometimes. As a mother it is my sacred responsibility to care for these little ones the best that I can because our Father in Heaven entrusted them in my care. For me it is SO hard that I cannot do anything for my little boy but continue to have faith and enjoy the moments. Occasionally I get knots in my stomach and feel like I'm going to throw up because fear begins to overwhelm me, but in those moments the comfort and peace from Heavenly Father also combats the fear and I am able to rise above the darkness. I am so grateful for how the Lord has carried me/us through this challenge.
Despite my depressing ramblings, I do want to inform you all that Mitchell is doing great. Someone commented to me today how he thought Mitchell was one of the happiest kids he's ever met and I would agree. He is truly a very special little boy and I feel so privileged that I get to be in his presence each day. He's walking well enough. It's hard to remember sometimes how far he has come.
The big news is we have his next MRI this Friday morning. Please send your prayers his way. The next couple MRIs should be revealing. As always we appreciate your love, prayers, and support!
His first fish!
These two brothers love each other very much. Mitchell's laying on Jackson's back while Jackson plays gameboy.
The dyeing of the Easter eggs.
Beautiful Easter morning...baskets.
Our Easter family at Grandma's and Grandpa's.
Mitchell is becoming more affected by the chemo. This last round of temodar ended with two puke bucket cleanouts, which really is nothing compared with so many other children. His other chemo--irinotecan--is progressively causing more nausea as well. He is amazing (once again) in how bravely he handles everything. All he says is, "Mom, my tummy hurts. I'm going to 'pook'," and then he does and it's all over; no whining, crying, or complaining. He is such an example to me and I hope I can be like him someday/everyday.
He has a strange obsession with death lately. I'm not sure if it's coincidence, or if he's understanding/hearing more than we think he is. He constantly is saying, "I/We don't want to die. We want to be together forever," and "Jesus saves us/takes care of us/was recognized (his word for resurrected)." He has also reminded us & Jackson (as if we need reminding) to pray that he will get all better and not be sick anymore. He wants SO badly to run and play normally again--I can see it in his eyes. And then, at the same time, some days it's too hard to try. I, personally, want VERY badly to see him regain the ability to move easily without pain and struggle. The other day we were at the park and he had many friends there who he desperately wanted to keep up with. I helped him get to where they were, and he played for a short while with them and then the other kids were off onto something else and I saw Mitchell, standing alone. I asked him why he didn't at least try to leave that spot and he said his legs hurt. The other children are really so kind to him. They want to play with him, but they are after all just children with limited attention and focus. Mitchell never complains and contents himself with talking with me or playing with Eden. Whenever anyone comes to the door he bolts from wherever he is and runs to talk with them. Today we were celebrating our little cousin's birthday and the three cousins (including Jackson) were outside playing while Mitchell, sitting next to me, was looking out the window watching them. Moments like that I can feel my heart tearing for him. But again, he never says a word about it. Right now I am getting teary-eyed. I love this little boy so, so, so very much and I'd do anything to see him whole again.
Not to add to the downer note of this post, but my mother-in-law shared with me something that happened yesterday. She was doing a puzzle with Jackson and Mitchell and after a while Mitchell got down from the table to go do something else while Jackson continued. Outside sirens sounded and Jackson jerked up with a panicked look on his face and started frantically asking, "Where's Mitchell? Where's Mitchell? Are they coming to get him?"
I hope I'm not too depressing today. We still feel a lot of peace, faith, and hope. That doesn't mean that emotions aren't raw and difficult sometimes. As a mother it is my sacred responsibility to care for these little ones the best that I can because our Father in Heaven entrusted them in my care. For me it is SO hard that I cannot do anything for my little boy but continue to have faith and enjoy the moments. Occasionally I get knots in my stomach and feel like I'm going to throw up because fear begins to overwhelm me, but in those moments the comfort and peace from Heavenly Father also combats the fear and I am able to rise above the darkness. I am so grateful for how the Lord has carried me/us through this challenge.
Despite my depressing ramblings, I do want to inform you all that Mitchell is doing great. Someone commented to me today how he thought Mitchell was one of the happiest kids he's ever met and I would agree. He is truly a very special little boy and I feel so privileged that I get to be in his presence each day. He's walking well enough. It's hard to remember sometimes how far he has come.
The big news is we have his next MRI this Friday morning. Please send your prayers his way. The next couple MRIs should be revealing. As always we appreciate your love, prayers, and support!
His first fish!
These two brothers love each other very much. Mitchell's laying on Jackson's back while Jackson plays gameboy.
The dyeing of the Easter eggs.
Beautiful Easter morning...baskets.
Our Easter family at Grandma's and Grandpa's. Friday, April 29, 2011
Make-A-Wish
Yeah, this is way late. I know I'm full of excuses, but life has been a little hectic lately. Plus, our desktop broke, so it is tricky finding computer time on Chad's laptop when he isn't using it for work.
Mitchell's Make-A-Wish trip was so amazing; beyond our expectations. We are so busy and as the trip approached I wished it would have been later to allow us to better plan and prepare. Only time will tell if our choice was right to go then or not. All we know now is that Mitchell feels well and is moving around pretty great too.
My parents came to help us get ready the weekend before and it was really appreciated. I had a baby shower I co-hosted the night they arrived, then Mitchell's sendoff party for our trip was Friday night, so it was fun to have them there. Soccer game, yardwork, and baptism Saturday. Sunday I had a load of meetings. Monday was our bi-monthly Seattle trip. Needless to say, we worked my poor parents a lot. I felt so bad, but I sure am grateful they helped so much.
Tuesday morning Mitchell woke up and said he needed to "pook." I took him to the toilet and he started crying saying, "I'm poo poo." Poor little guy. He never threw up, but it was clear he felt miserable. He had a terrible phlegm-y cough as well. I asked Chad to give him a blessing and with added prayers he seemed to be feeling a little better by that night. He still had a nasty cough but was in much better spirits when we woke him up at 4:30am for our flight. I was surprised how well all the kids did on the flight! They were absolutely perfect despite the lack of sleep and they didn't sleep on the flight (except for a short nap Eden took).
Give Kids the World is an AMAZING resort designed specifically for Make-A-Wish kids and their families. Everything is designed around a storybook type theme. They have the gingerbread house that serves buffet dinners, an ice cream parlor open 14 hours/day, and much much more we didn't get to because we were so busy. They have activities each night as well that we missed. My only complaint/regret is we didn't have more time. They supplied us with a rental car, tickets to the parks, and a two-bedroom villa to stay in.
Thursday we headed straight to Magic Kingdom (the park most like Disneyland). We were also supplied with a pass that took us to the front of lines, so we were able to get to almost all the rides. We thought it was busy, but would later find out it wasn't. It was warm, of course, and after going down splash mountain, Mitchell said, "Ooh. That cooled me off." We got to meet a lot of the characters. Disney gave us a card that keeps track of any pictures their photographers take and we get them all on CD for free. That is one of the greatest treasures for me--I just need to get it ordered. We stayed until 11 o'clock watching the electric light parade and fireworks.
Friday we braved Universal. In Orlando it's two parks instead of one like it is in California. We focused on the Islands of Adventure side since it had Dr. Seuss, Harry Potter, and Marvel Superheroes. It was much more crowded and that made it less fun navigating and more difficult to get on rides. Universal isn't as accommodating or courteous to Make-A-Wish families. Hogsmeade and Hogwarts were OUTSTANDING--I wish we had a day by ourselves just to tour the shops, etc. We bought wands at Dervish and Banges for the boys and Chad and I rode the roller coasters twice, which I admit made me a bit nauseous. Then we took Jackson on the main Harry Potter ride, which was by far the best ride I've even been on (although I had to close my eyes by the end because I was so sick). I should have read up on it because it was scary and although he didn't say too much, I know it freaked Jacks out a bit. In the Jurassic Park area we stopped for lunch and Chad bought the boys a giant turkey leg, which he told them was a dinosaur toe and they loved that. In the Marvel Comics area Mitchell got to meet Wolverine--his favorite superhero. We were rushing to get over to meet Dora, so he didn't have time for the others. I know it's a bit odd for a 4-year-old boy to love Dora so much, but he does, so our primary mission this day was to meet her. He did and was very happy. Diego joined us too. Only later did he ask where Boots was and silly me forgot to ask if Boots could come to our meeting. He still talks about how sad he is that Boots wasn't there--bummer.
Saturday we went to Animal Kingdom. Here we rode in an African Safari and saw real life giraffes, hippos, rhinos, and even lions. It was very cool. The best part of the day was "The Festival of the Lion King" which was a wonderful production with singing, dancing, acrobats and even a fire batonist. Mitchell got to be part of the dance. I got a little teary when they sang "Circle of Life." It made me like "Lion King" a lot more. We rushed over to Hollywood Studios so Mitchell could meet some of the characters he loves including Buzz & Woody, the Incredibles, and many more. The boys were able to squeeze into the Jedi training class. It was so cute. Jackson was really into it and Mitchell tagged along for the ride. He was so darling fighting Darth Vader.
Sunday we decided to rest since we had packed in so much each day. Chad's family have a very kind friend who used to live in Yakima and invited us to attend church with them. We arrived and realized it was their Stake Conference. We had packed very lightly so Chad only had a polo and khakis, and I was wearing a light skirt, etc. Kind of embarrassing. We saw on the program that they chose "I Am a Child of God" for the opening hymn. Mitchell sang with all of his gusto and afterwards the Stake President stood up and said something to the effect of, "We have a special little boy named Mitchell in our midst who we are very happy to have with us. He is staying at Give Kids the World and we're glad he felt well enough to come. He's fighting a very serious cancer and this is his favorite song. We want him to know our prayers are with him and his family." It was very touching. After the service we thought we should introduce ourselves and the stake presidency had all read this blog and obviously cared about our little Mitchell. The stake president said, "I wished we had more time because I wanted to call you up to speak." Yikes! It meant so much to us that they did that for our little boy that they don't even know. Again this whole experience has taught us to have so much more compassion and charity for everyone, even those we don't know. We hung around GKTW the rest of the day. They have a castle where they hang up stars for each child who has ever stayed there. Mitchell filled out his star. When I asked what he wanted to put on there he said, "I love Jesus. Mitchell." So that's what I wrote. When he put the star into the star fairy's box they tell him to make a wish, and his wish was for "All the people to be happy." He's such an amazing boy. That night we joined in the Candyland party and they had a slow motion race. We kept trying to get Mitchell to do it, but he didn't want to. After everyone had crossed the line, including a teenage boy pushed in his wheelchair, Mitchell decided to join. The announcer said, "Oh look! We have one more!" and everyone began cheering for him. When he crossed they all huddled around him and celebrated his victory (albeit a little unfairly won) and started a dance party. It was so sweet and I was very proud of him.
Monday we decided to go to Magic Kingdom again because we love it so much. We chose April for this trip because we thought the spring breaks would be over with. Apparently on the east coast the week before and after Easter are breaks for the schools. So Monday was CRAZY! We seriously could not walk through the crowds and even with our pass we had a very hard time getting on rides. It was pretty miserable. We ate at the restaurant we liked from the Thursday before and the manager pulled us out of the line to put us in a reserved area and then gave us free food! She said, "I've been in your shoes and know exactly what you're going through." Her generosity touched us. We got our mickey mouse hats and headed for Epcot. We had very little time. We rode a couple rides then picked a spot for the fireworks, which were great.
Tuesday we packed up and regretfully left Give Kids the World. On our way to the airport we stopped at Gatorland. The boys thought that was cool.
It was a fast and furious trip, which of course we will never forget. I wish we could have paid to stay a few more days so we could go to everything we wanted to see. It was magical.
Make-A-Wish functions through volunteers that help make the wishes come true. Our friend Terri did a lot of leg work getting things organized for us and then threw Mitchell a sendoff party in Yakima with our family. It was a lot of fun.
Terri and her daughter Tiffany did a great job.
Our special boy who deserves the world!
Shooting balls with cousin Logan.
Surveying the cockpit before takeoff.
He's the sweetest boy ever, and yet his first interaction with Mickey Mouse was a fake punch. ??? He was just joking, but a little embarrassing.
Pinnocchio, "I'll never be a real boy!"
It's a Small World--Mitchell's and Eden's favorite.
Dancing after the fireworks with our new friends. He was really cruising around.
Poor guys were tuckered out. Luckily they had Grandma to hold them on the way back.
The boys love Cat in the Hat because after all he knows "A lot about that."
Hogwarts Train
I had to include a picture of my cute little girl.
Jackson was not too excited about Wolverine grabbing his shirt.
Hogwarts castle
Dora and Diego
We scored the jackpot finding Curious George and Scooby Doo at the same time! Then these woodpeckers joined in too...
Carousel at GKTW
Mitchell LOVES Donald Duck, so that was another must. He hugged all the characters.
Fireman
Joining in the dance at the Lion King Festival.
Jedi Training
A Jedi protects the Pattowans from the dark side
And then Mitchell fights Darth Vader himself!
Sunday sneaking Grandma's chips at the pool.
Surf's Up!
His star: "I love Jesus. Mitchell Hatfield"
This was the Pillow Tree. It gives a pillow to each child.
In front of the gingerbread house with Mayor Clayton and the gang.
Winning the race
The Candyland Party
Eden loved sleeping in a room with her brothers. They all stayed up giggling late into the night.
I almost forgot to mention the boys' favorite part of the trip was getting dressed as pirates. They got their faces painted and adorned in pirate gear they scared people all day! This was the face Jackson chose.
Mitchell chose Captain Hook. By the end of the day after a trip down splash mountain he looked like a coal miner.
On stage with Cap'n Jack Sparrow.
Another trip on "It's A Small World"
On the flight home--sleepy time for everyone...
Except Mitchell, who didn't sleep at all until the last hour or so. It was a lovely time bonding!
***In my rush to type this up the other night, I failed to say "THANK YOU" to my amazing in-laws who made this trip fun instead of potentially miserable. Without them we could not have done as much and done it so well. I know we tired them out with our 12+ hour days, and perhaps they'll never accept an invitation from us again, but we sure are grateful they sacrificed to come with us. We love them very much and appreciate all they do for our family!!!***
Mitchell's Make-A-Wish trip was so amazing; beyond our expectations. We are so busy and as the trip approached I wished it would have been later to allow us to better plan and prepare. Only time will tell if our choice was right to go then or not. All we know now is that Mitchell feels well and is moving around pretty great too.
My parents came to help us get ready the weekend before and it was really appreciated. I had a baby shower I co-hosted the night they arrived, then Mitchell's sendoff party for our trip was Friday night, so it was fun to have them there. Soccer game, yardwork, and baptism Saturday. Sunday I had a load of meetings. Monday was our bi-monthly Seattle trip. Needless to say, we worked my poor parents a lot. I felt so bad, but I sure am grateful they helped so much.
Tuesday morning Mitchell woke up and said he needed to "pook." I took him to the toilet and he started crying saying, "I'm poo poo." Poor little guy. He never threw up, but it was clear he felt miserable. He had a terrible phlegm-y cough as well. I asked Chad to give him a blessing and with added prayers he seemed to be feeling a little better by that night. He still had a nasty cough but was in much better spirits when we woke him up at 4:30am for our flight. I was surprised how well all the kids did on the flight! They were absolutely perfect despite the lack of sleep and they didn't sleep on the flight (except for a short nap Eden took).
Give Kids the World is an AMAZING resort designed specifically for Make-A-Wish kids and their families. Everything is designed around a storybook type theme. They have the gingerbread house that serves buffet dinners, an ice cream parlor open 14 hours/day, and much much more we didn't get to because we were so busy. They have activities each night as well that we missed. My only complaint/regret is we didn't have more time. They supplied us with a rental car, tickets to the parks, and a two-bedroom villa to stay in.
Thursday we headed straight to Magic Kingdom (the park most like Disneyland). We were also supplied with a pass that took us to the front of lines, so we were able to get to almost all the rides. We thought it was busy, but would later find out it wasn't. It was warm, of course, and after going down splash mountain, Mitchell said, "Ooh. That cooled me off." We got to meet a lot of the characters. Disney gave us a card that keeps track of any pictures their photographers take and we get them all on CD for free. That is one of the greatest treasures for me--I just need to get it ordered. We stayed until 11 o'clock watching the electric light parade and fireworks.
Friday we braved Universal. In Orlando it's two parks instead of one like it is in California. We focused on the Islands of Adventure side since it had Dr. Seuss, Harry Potter, and Marvel Superheroes. It was much more crowded and that made it less fun navigating and more difficult to get on rides. Universal isn't as accommodating or courteous to Make-A-Wish families. Hogsmeade and Hogwarts were OUTSTANDING--I wish we had a day by ourselves just to tour the shops, etc. We bought wands at Dervish and Banges for the boys and Chad and I rode the roller coasters twice, which I admit made me a bit nauseous. Then we took Jackson on the main Harry Potter ride, which was by far the best ride I've even been on (although I had to close my eyes by the end because I was so sick). I should have read up on it because it was scary and although he didn't say too much, I know it freaked Jacks out a bit. In the Jurassic Park area we stopped for lunch and Chad bought the boys a giant turkey leg, which he told them was a dinosaur toe and they loved that. In the Marvel Comics area Mitchell got to meet Wolverine--his favorite superhero. We were rushing to get over to meet Dora, so he didn't have time for the others. I know it's a bit odd for a 4-year-old boy to love Dora so much, but he does, so our primary mission this day was to meet her. He did and was very happy. Diego joined us too. Only later did he ask where Boots was and silly me forgot to ask if Boots could come to our meeting. He still talks about how sad he is that Boots wasn't there--bummer.
Saturday we went to Animal Kingdom. Here we rode in an African Safari and saw real life giraffes, hippos, rhinos, and even lions. It was very cool. The best part of the day was "The Festival of the Lion King" which was a wonderful production with singing, dancing, acrobats and even a fire batonist. Mitchell got to be part of the dance. I got a little teary when they sang "Circle of Life." It made me like "Lion King" a lot more. We rushed over to Hollywood Studios so Mitchell could meet some of the characters he loves including Buzz & Woody, the Incredibles, and many more. The boys were able to squeeze into the Jedi training class. It was so cute. Jackson was really into it and Mitchell tagged along for the ride. He was so darling fighting Darth Vader.
Sunday we decided to rest since we had packed in so much each day. Chad's family have a very kind friend who used to live in Yakima and invited us to attend church with them. We arrived and realized it was their Stake Conference. We had packed very lightly so Chad only had a polo and khakis, and I was wearing a light skirt, etc. Kind of embarrassing. We saw on the program that they chose "I Am a Child of God" for the opening hymn. Mitchell sang with all of his gusto and afterwards the Stake President stood up and said something to the effect of, "We have a special little boy named Mitchell in our midst who we are very happy to have with us. He is staying at Give Kids the World and we're glad he felt well enough to come. He's fighting a very serious cancer and this is his favorite song. We want him to know our prayers are with him and his family." It was very touching. After the service we thought we should introduce ourselves and the stake presidency had all read this blog and obviously cared about our little Mitchell. The stake president said, "I wished we had more time because I wanted to call you up to speak." Yikes! It meant so much to us that they did that for our little boy that they don't even know. Again this whole experience has taught us to have so much more compassion and charity for everyone, even those we don't know. We hung around GKTW the rest of the day. They have a castle where they hang up stars for each child who has ever stayed there. Mitchell filled out his star. When I asked what he wanted to put on there he said, "I love Jesus. Mitchell." So that's what I wrote. When he put the star into the star fairy's box they tell him to make a wish, and his wish was for "All the people to be happy." He's such an amazing boy. That night we joined in the Candyland party and they had a slow motion race. We kept trying to get Mitchell to do it, but he didn't want to. After everyone had crossed the line, including a teenage boy pushed in his wheelchair, Mitchell decided to join. The announcer said, "Oh look! We have one more!" and everyone began cheering for him. When he crossed they all huddled around him and celebrated his victory (albeit a little unfairly won) and started a dance party. It was so sweet and I was very proud of him.
Monday we decided to go to Magic Kingdom again because we love it so much. We chose April for this trip because we thought the spring breaks would be over with. Apparently on the east coast the week before and after Easter are breaks for the schools. So Monday was CRAZY! We seriously could not walk through the crowds and even with our pass we had a very hard time getting on rides. It was pretty miserable. We ate at the restaurant we liked from the Thursday before and the manager pulled us out of the line to put us in a reserved area and then gave us free food! She said, "I've been in your shoes and know exactly what you're going through." Her generosity touched us. We got our mickey mouse hats and headed for Epcot. We had very little time. We rode a couple rides then picked a spot for the fireworks, which were great.
Tuesday we packed up and regretfully left Give Kids the World. On our way to the airport we stopped at Gatorland. The boys thought that was cool.
It was a fast and furious trip, which of course we will never forget. I wish we could have paid to stay a few more days so we could go to everything we wanted to see. It was magical.
Make-A-Wish functions through volunteers that help make the wishes come true. Our friend Terri did a lot of leg work getting things organized for us and then threw Mitchell a sendoff party in Yakima with our family. It was a lot of fun.
Terri and her daughter Tiffany did a great job.
Our special boy who deserves the world!
Shooting balls with cousin Logan.
Surveying the cockpit before takeoff.
He's the sweetest boy ever, and yet his first interaction with Mickey Mouse was a fake punch. ??? He was just joking, but a little embarrassing.
Pinnocchio, "I'll never be a real boy!"
It's a Small World--Mitchell's and Eden's favorite.
Dancing after the fireworks with our new friends. He was really cruising around.
Poor guys were tuckered out. Luckily they had Grandma to hold them on the way back.
The boys love Cat in the Hat because after all he knows "A lot about that."
Hogwarts Train
I had to include a picture of my cute little girl.
Jackson was not too excited about Wolverine grabbing his shirt.
Hogwarts castle
Dora and Diego
We scored the jackpot finding Curious George and Scooby Doo at the same time! Then these woodpeckers joined in too...
Carousel at GKTW
Mitchell LOVES Donald Duck, so that was another must. He hugged all the characters.
Fireman
Joining in the dance at the Lion King Festival.
Jedi Training
A Jedi protects the Pattowans from the dark side
And then Mitchell fights Darth Vader himself!
Sunday sneaking Grandma's chips at the pool.
Surf's Up!
His star: "I love Jesus. Mitchell Hatfield"
This was the Pillow Tree. It gives a pillow to each child. 
In front of the gingerbread house with Mayor Clayton and the gang.
Winning the race
The Candyland Party
Eden loved sleeping in a room with her brothers. They all stayed up giggling late into the night.
I almost forgot to mention the boys' favorite part of the trip was getting dressed as pirates. They got their faces painted and adorned in pirate gear they scared people all day! This was the face Jackson chose.
Mitchell chose Captain Hook. By the end of the day after a trip down splash mountain he looked like a coal miner.
On stage with Cap'n Jack Sparrow.
Another trip on "It's A Small World"
On the flight home--sleepy time for everyone...
Except Mitchell, who didn't sleep at all until the last hour or so. It was a lovely time bonding!***In my rush to type this up the other night, I failed to say "THANK YOU" to my amazing in-laws who made this trip fun instead of potentially miserable. Without them we could not have done as much and done it so well. I know we tired them out with our 12+ hour days, and perhaps they'll never accept an invitation from us again, but we sure are grateful they sacrificed to come with us. We love them very much and appreciate all they do for our family!!!***
(This is a VERY small portion of pictures I chose because they focused on Mitchell. Perhaps someday I will post more on our family blog!)
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