Team Jackson

Ring that Bell!

2012-03-01T17:51:00.005-07:00

I finally uploaded the pictures from Jackson's big bell ringing day. It has been over a month, and watching the pictures rotate through as they uploaded to the computer, I found myself getting teary eyed. I worried that I had waited to long to blog about it. I worried that the emotions that I felt that day would have disappeared, or diminished, but they haven't. I still felt a wave of emotions flow over me as I experienced that day again through pictures.

We knew this day was coming. In fact, the first time I ever walked into the ICS unit, I saw the bell hanging on the wall, and it brought tears to my eyes then. It was a sad bell, and when I saw it, the thought of childhood cancer was still just a thought- not yet a reality. I saw a small bald boy playing in the area, and I cried for him, and his family. We had no idea what lay ahead of us. That first time I saw the bell was way back in June 2011.

As Jackson progressed along in his treatment, the bell stood in the ICS unit. We would walk past it several times a day, not really noticing it anymore. Often times we would hear people cheering while we sat in our room, and I would go out to investigate. Every single time I watched another child ring that bell, tears came to my eyes. Every. Single. Time.

I would see others ring the bell, and I would think about how lucky they were to be done with treatment. I would think about how relieved they must feel, and how happy they must be. I read another Cancer Mom's comment on Facebook that said that she was so excited to ring the bell- because that meant that her son could stop getting the nasty chemo that was making him so sick. She talked about how her son would get a tiny bit better between rounds of chemo, but then they would go back in the hospital again, and he would just get kicked in the butt again. She said that this time she was glad that he could get better, and not have to get sick again. I would read her comments, and feel so excited for when Jackson got to ring that bell, and be done with cancer!

I had no idea that I wouldn't feel the sense of relief that I expected to feel when he rang that bell. I thought we'd be "done" with cancer. I thought that all of our worries would be gone, and that life would magically go back to the 'normal' that it once was. Boy oh boy was I wrong!

When Jackson rang that bell, I had such different emotions than I thought I would. I felt relief- yes, but more than relief, I felt panic. Here they were, these doctors, who study and study different illnesses. These doctors have told us for the last 7 months how hard Jackson's type of tumor is to beat. I clearly remember the day that Dr. Afifiy told us that we do everything in our power to beat the cancer, but then we have to turn the rest over to a Higher Power. Finishing Jackson's treatments made me panic because now we've done all we can do to beat the cancer, and we're putting our faith in a Higher Power. What if it didn't work? What if we're stopping treatment at this point, and it didn't work? We have to wait a little over 3 months until Jackson gets his MRI scans to see how the tumor responded to all of that chemo and radiation, but over that 3+ months, we are doing nothing. What if the tumor grows while we aren't watching it?

I had a rush of emotions that day that Jackson rang the bell, I felt joy and triumph and pride. Incredible pride for our boy. Our boy that conquered some of the worst drugs on this planet. Our boy who faced incredible trials with strength and optimism. Our boy who is by far, stronger than either of his parents. Our boy who still amazes me with his strength.

I cried silent tears as he rang that bell. He was so excited to ring that bell, and had been looking forward to it all week- I am sure he was looking forward to it a lot longer than that week. Earlier that day, Jackson told me that he couldn't wait to ring the bell. I told him not to be shy when he rang the bell, and he assured me that he was really going to ring it good. He said "I'm gonna ring it good, because I only get to ring that bell once!"

And he did. He rang that bell good and long, and loud!

Jackson had lots of support that day. We had lots of family join us that day, they were all there to share tears together, and rejoice in Jackson's accomplishment. Not only was Jackson surrounded by family, but he was surrounded by lots of our favorite nurses, techs and even other chemo patients. I have never heard a group cheer so loud for another Chemo Bell Ringer- and I'm not just saying that. Jackson won the hearts of everyone in that ICS unit.

I made Jackson wear his Beads of Courage as he rang the bell. He wasn't so sure at first if he want to wear them, but he agreed, and I'm so glad he did. He earned every single one of those beads by enduring something awful, painful, or difficult. I am amazed at how many he has- over 7 strands of beads.

When he was done ringing the bell, he was anxious to get the beads off and then it was time for hugs. Lucky me, I got the first one!

Even with all of the emotions of an uncertain future, Wednesday, January 25, 2012 was one of the best days of Jackson's cancer treatments.

It was a day our family has look forward to for a long time, and we made it! Jackson made it!

The plaque on the bell reads:

RING THIS BELL

THREE TIMES REAL WELL

IT'S TOLL TO CLEARLY SAY

MY TREATMENTS DONE

THIS COURSE IS RUN

NOW I AM ON MY WAY

Moving Forward

2012-02-28T07:33:00.002-07:00

Jackson is moving forward and making progress which is exciting and wonderful!

The biggest thing that I am so happy to report is that we are all home under the same roof. We have been home for almost a month now, and I can't believe how fast time flies! Jackson did have to have an overnight stay at the hospital last week because he got a bag of platelets that were contaminated and had bacteria in them. So, as a precaution, the doctors wanted to watch him overnight just to make sure he'd be fine. He got several doses of IV antibiotics, but they sent him home the next day. Other than that little bump in the road, Jackson seems to be doing amazing.

At our last clinic visit I talked to the nutritionist about Jackson. I talk to her every week and I genuinely enjoy the time I get to spend with her. Last week she started Jackson on an appetite stimulant. We were hoping that he would start to eat, and then we could get him off of the TPN (IV Nutrition) that he has been on since the beginning of November. TPN is a good thing if your body is unable to eat, but Jackson should be able to eat, and eating is essentially better for your body. The good news is that the appetite stimulant is working! He is now eating, which is such a relief. He has eaten more this week than he has in the last 4 months combined. One day he ate an entire peanut butter and jelly sandwich, and yesterday he ate almost an entire can of chili. I think part of his eating can be credited to the appetite stimulant, and part of his motivation to eat comes from avoiding another NG tube. They told me that if he doesn't eat this week that they will put an NG tube back in- which was such an ordeal for Jackson and for me. I am glad he is eating now, what a relief!

Other exciting news is that Jackson's Wish from Make-A-Wish is getting closer to being granted. Right now we are scheduled for the big reveal in the middle of March. I'll post more info when it gets closer, because you are all invited to join us!

Remember us?

2012-02-13T22:01:00.002-07:00

I feel like we've been on the cancer road for so long. Seriously, it is pretty normal now, and I'm afraid to say that we've adjusted to our 'new life'.

Things are a new normal now. We go to weekly clinic visits to check Jackson's blood levels. Usually Jackson gets a platelet transfusion each week, and we are at the hospital for only about 3 hours once a week. Brian has returned back to his job full time, which is such a blessing. Brian came home from work a few weeks ago and had a funny story to share with me. He said that a guy asked him for help, and Brian mentioned that he had an altered work schedule. The guy asked why, and Brian replied that Jackson was in the hospital. The guy replied "You're still dealing with that?"

Yup, we are still dealing with that.

Remember us? The people that had a kid with cancer? Yup, we're still the people with the kid that has cancer. I feel like we've been on this cancer road for so long that people have forgotten that we are on a different road than the rest of the world.

Things have changed for us, and for our family. I know that I will never be the same. I have changed in so many ways, some happy and some sad. I've experienced things that I never wanted to or expected to experience. Brian and I have had to make hard decisions regarding Jackson's health, and it has been a very rough year.

I want to share a story here about something that Brian and I had a good laugh about. Some of you may not think it's funny, but take it for what it's worth.

I am pretty sure we will never eat at a buffet again. Jackson is currently on a low microbial diet. Basically he can not eat anything that may contain bacteria that could cause him to get sick. So, no restaurants, no fast food, no fountain drinks, no fresh fruits and vegetables, etc. Because of this we haven't eaten out for quite some time- he has been on this diet since his first bone marrow transplant, and will remain on the diet until at least the end of April. Brian and I went out for Brian's birthday dinner in January, and we chose to eat at one of Brian's favorite place Tucanos. Brian refers to Tucanos as "Meat Fest" because they bring big slabs of meat around to each table and slice you off a nice hunk of meat. It's all you can eat, and included in your meal is all you can eat access to an amazing salad bar. As we were at the restaurant, I told Brian that being a Bone Marrow Mama, I didn't know if I could eat there. We had an entire conversation over dinner about how we are so much more aware of germs now. I had Brian laughing when I explained that: "Those waiters, walk through a ginormous crowd carrying our food. Then the come to our table and slice it and we eat it. Not only that, but the salad bar!" I exclaimed. "Every one touches the same serving spoon, then they go back to their tables, and don't even sanitize their hands before they start eating!". Brian and I laughed about contaminated food, and how we shouldn't be eating there at all. Now, I am not saying that Tucanos is in any way a dirty, or nasty restaurant, but I laugh at our heightened awareness of germs. Seriously- if you have a normal immune system, having your meat carried through a crowd of people shouldn't be that big of a deal. But being a crazy Bone Marrow Mama, I freaked at what might have gotten on our food before it got to us.

So, to answer your question. Yes, we are still here. We are still on the "cancer path" and although we are through some of the more rough spots, we still have a LONG way to go. Jackson doesn't get any more official scans (MRI or CAT scan) until April. At that time we will see how his tumor responded to treatment. To be honest, I thought that when Jackson finished chemo that we'd be done with the world of childhood cancer. But here we are, he's done with chemo and we are still a long way from finished.

When Jackson finished his last round of Bone Marrow Transplant, I thought I'd feel relieved. "We are done!" But I didn't feel that relief. Instead I feel fear, and hope, and lots of faith. I am afraid that the chemo didn't work, and that they just stop treatment but don't run scans for months. I am afraid that the tumor will grow while the doctors are not watching it. I am afraid that he will relapse- or that the chemo didn't work at all. But at the same time, I am relieved that we are done with this part. I am grateful that he survived the harsh protocol, and that he is surviving and thriving. I am grateful that he is getting healthier every day, and that he has not had many of the harsh, horrible side effects that could have been. And above all, I have hope. I have hope that my boy will live a long, healthy, cancer free life.

Remember us? We're still here- on this road of childhood cancer. But we've found the beauty that this road of cancer can hold, and we're grateful that even through trials, we can survive and thrive.

Inpatient

2012-02-06T20:49:00.003-07:00

What do most kids do when they are inpatient in the hospital? I'm afraid most kids lay in bed for days on end, they get bed sores from living a sedentary lifestyle. They watch TV, countless movies, and play video games. Some kids get so sick that they do nothing but sleep all day, and try to let their little bodies heal. Some kids ride bikes in the hall. Some kids have syringe water fights with their nurses. Some kids drive remote control cars with fart machines taped to them. Some kids make crafts.

We've been on both sides of the fence. Jackson has been that kid that laid in bed, so sick that he slept all day. Jackson has lost leg muscles and lung function because he didn't stay active enough. But thankfully more often than not, Jackson has also been the kid causing nurses to laugh. He has started many, many syringe water fights. He plays bowling, and basketball, he jumps on the bed, and plays hide-n-go seek in his tiny hospital room, and he drives remote control cars.

In fact, last week when Jackson was inpatient he drove his remote control truck over the nurses. Yep, they laid on the floor and allowed my son to drive right over the top of them. He LOVED it! And I thought I'd share it with you.

Not everything about being at the hospital is horrible. Honestly we have come to LOVE the staff on the ICS unit. The staff has been so good to not only Jackson, but our entire family. The ICS unit has become home for us. Honestly, some of the coolest people we know are nurses!!

And, if we have to be stuck inpatient somewhere- there is nowhere else we'd rather be!

Hope

2012-01-19T12:21:00.003-07:00

I stood in the ICS Unit yesterday at the HUC desk. I was chatting with one of my favorite techs- Laura while Jackson was supposed to be taking a nap.

As Laura and I chatted we heard a bunch of happy greetings as some people entered the unit. There was a mom, a grandpa, and an amazing 3 year old little boy.

I don't know the boy's name, but someone whispered to me that that little boy once had AT/RT. I was in shock, and in awe of this little warrior. Ever since our diagnosis, we have never met or seen another person who had the same diagnosis as Jackson.

I wanted to approach that amazing mom and I wanted to ask her a million questions, but I could not even form a complete sentence. I just stood there, and watched this little boy. He is a survivor of the same cancer that is threatening my son's life. That tiny boy conquered the same dragon that Jackson is fighting right now. That tiny boy is my hero. And as I watched this hero running up and down the halls, I stood there and let the tears flow.

That little boy is an inspiration to me. He was hope. He was walking proof that there can be good from all of the bad we have experienced.

That little boy was hope.

I overheard the mom talk about his scans being "perfect". She mentioned that he will need hearing aids, glasses and growth hormones soon, but that he hasn't been on any medications for the last year and a half. She mentioned that he is just now learning to walk and talk.

That tiny little 3 year old boy, with a crooked smile was hope. He was proof and light. I felt honored by the fact that there was a survivor in my presence.

I wish I could have had the courage to talk to the mom. I wish I didn't cry just by watching this small boy. But there was something powerful that hit me when I saw another child that had the same diagnosis as Jackson- and that that child was thriving, and alive.

I know that we are not alone in the world of childhood cancer. I have met dozens of other families affected by childhood cancer, but I never knew how alone I felt because Jackson's cancer is so rare. There has been no one to talk to about protocols, or treatments. I have not been able to hear stories of triumph.

That little boy was hope. He was the connection I have been missing. He was proof that this fight can be won.

Day +4

2012-01-17T09:03:00.005-07:00

Today is day +4 of Jacksons' third bone marrow transplant. Day +4 usually means his old bone marrow is completely dead, and the new bone marrow hasn't begun to grow yet. Day +4 means that he has no immune system. Day +4 also means that we've been in the hospital for 7 days now.

I have been meaning to blog, but to be honest, there hasn't been much time. I always thought that I would have plenty of time at the hospital, because what else is there to do at the hospital? But we are busy at the hospital. For the first 4 days Jackson had to shower 3 times a day to wash off the chemo drug that was seeping through his skin. We spent our time showering, and doing bandage/central line care- and of course playing. But the last 3 days at the hospital, we have simply been too busy playing.

Jackson feels great so far. He literally jumps on the bed for quite a while each day- which makes the nurses nervous, and is completely entertaining for me. We have been building roller coasters, racing remote control cars, playing games, having school lessons, and even making a paper mache' mountain. We have been very busy.

And amidst the busy, Jackson has been enduring lots of things that no kid should have to endure. He has gotten two extremely potent chemo drugs, that we are hoping will be the last chemo drugs that will ever have to enter his tiny body. He got his third bone marrow transplant. Third. And for those of you who don't know, let me tell you... three bone marrow transplants it A LOT. A bone marrow transplant is exhausting to your body, and to have three in a row is destructive to every system in your body.

From this point we wait. We wait for his body to begin to grow white blood cells again. We wait for his Neutrophil count to come back up. We wait and hope that he doesn't get sick.

I have so many emotions connected to this last round of chemo. Yes, it is our last round, and yes, according to Jackson's protocol, we should be 'finished' with treatment at this time. But we are still far from the end. Jackson still has a 100 day waiting period for his body to recover from this bone marrow transplant. And at that point the doctors will order another MRI to see how much (if any) the tumor has shrunk. They will closely watch Jackson for the next several years to make sure the tumor doesn't grow or change at all. And after a certain amount of time, if the tumor doesn't change in shape, size or color, they will declare Jackson in Remission. But that is a long way away, and there are still so many steps left to travel down this road.

I never thought we'd make it to this point, and it feels sort of surreal to have actually survived this far. Now, we just have to endure to the end.

Seven Hours

2012-01-06T17:59:00.001-07:00

We spent seven hours today at the hospital. Jackson had a scheduled appointment for another kidney function test (called a GFR), and he also had blood and platelet transfusions.

Here is a picture of the GFR test and machine. Basically they inject some radioactive stuff into Jackson's IV and then take x-ray type pictures of his body as the stuff circulates through his body and into his kidneys. Then they draw blood one hour and three hours after the injection to see how well his kidneys are processing.

The test itself is easy, but the IV placement is not fun (not fun is an extreme understatement- I have to physically restrain him as they place the line and he screams bloody murder).

There were so many numbers at the hospital today. Getting platelets took almost two hours and then getting blood took almost three hours. We watched two movies at the hospital today. Jackson ate one Otter Pop and three gummy alligators. I spent five dollars in a Cafe Rio knock off hospital cafeteria salad. Jackson had his blood drawn five different times by three different people. We walked across the Rainbow Bridge to the University of Utah Hospital and back again six different times. Jackson weighed 20.5 kilos and was 110 cm tall. Jackson's platelets were 21, his ANC was 700 and his hemoglobin was 8.0. While getting blood, Jackson spiked a fever of 38.0, but it went back down so we didn't end up getting admitted (thank goodness)! Numbers, numbers and more numbers!

Seven hours at the hospital was exhausting. Jackson was so excited to be able to come home.

One more number for you: Jackson slept for 40 minutes on our drive home.

2012-01-05T23:55:00.001-07:00

He is so wise. Wise far beyond his years. The other day we were leaving the hospital after getting the bad news about his hearing. I had been explaining what our future may hold and Jackson got very quiet in the car.I asked him what he was thinking about and he responded and said: "I don't want to share them." I was confused. I asked him what he didn't want to share and he proceeded to tell me: "I have lots of thoughts Mama, some of them I will share and some I want to keep to myself." I was stunned and baffled by his response. I am brought to tears thinking about his profound statement. He is wise far beyond his six years. Maybe one day he will share his thoughts with me, but for now I am grateful that he will share his wisdom.

Bad and Good

2012-01-04T10:02:00.005-07:00

Isn't it strange how sometimes in our lives when bad things happen- good things follow closely behind. Cancer- surely a bad thing but along with cancer came an amazing variety of blessings.

Blogging today is sort of surreal. Things have happened and somehow life has continued to move forward. Christmas at home was simple and quiet, but we felt lucky to be able to be at home. Being away from our extended family felt strange and so different, but next year should be 'normal' again- whatever 'normal' is. New Year's Eve was also spent at home. We sat around our table and played Candyland and Don't Break the Ice. We watched movies, and then at midnight watched Dick Clark (when did he get so freaky?) and the ball drop in NYC. Then we stood on the porch and watched the fireworks in our neighborhood. It was a calm way to bring in the new year and I loved being surrounded by my little family.

Bad and good. Unfortunately with chemotherapy bad and good walk hand in hand. We have had several doctors appointments the last few days, and unfortunately we have heard more 'bad' news than good. Bad news is upsetting, but I am trying to see the good that goes along with the bad. We went to the Audiology appointment to check on Jackson's hearing. Up until this point he has had no changes in his hearing due to the chemo, but this last round his hearing was significantly changed. The audiologist told me "Jackson has significant high-frequency hearing loss". I knew that this was always a possibility, but I didn't think it would actually become a reality. I struggled to fight back tears in the doctors office as she explained to me the extent of his permanent hearing loss. I did my best to be strong- and when Jackson asked me if I was going to cry I took a deep breath and we started looking at the hearing aids together. He was my strength- he is the one that made me feel okay with the loss of his hearing. He told me he doesn't care if he has to wear hearing aids- and then he joked that we can get hearing aids together because I have bad hearing too. He is such an incredible source of strength to me.

I explained to Jackson that he doesn't need hearing aids yet, but after the next round of chemo, he may have more hearing damage and he may need hearing aids at that time. I told him about one of his 'cancer buddies' Skyler and how Skyler has hearing aids- Jackson thought that was so cool that another kid his age has hearing aids. He loved looking at pictures on Skyler's blog of Skyler's hearing aids. He also thought it was cool that Grandma has hearing aids too. With the bad news of hearing loss, I find myself grasping and looking for good news and surprisingly I find good in strange places. The good comes with Jackson, he is an incredible source of strength, motivation and inspiration. The good comes from people we barely know- people that have walked this path of cancer before us- people like Skyler who make scary things feel manageable.

We got more bad news this week, this time it was about Jackson's kidney function. The chemo has reduced Jackson's kidney function by 50%. When I heard about the kidney function problems, I was shocked. Once again- I knew this was a possibility, but the part when it became a reality was overwhelming. My chest got tight, and I go into panic mode. This chemo is wonderful and horrible at the same time. It destroys otherwise healthy parts of my son, which is bad- but it also kills his tumor which is good. Good and Bad- together again. Good news is that Jackson can function normally on 50% of normal kidney function. Good news is that the kidney damage may not be permanent. Bad news is that if his kidney function does not get better in the next few days that they have to give Jackson a lower dose of Carboplatin (the kidney damaging, hearing loss causing, tumor killing chemo) and Jackson's chance of remission is decreased. Remission is always our goal. Good news is that we get 4 extra days at home hoping for his kidneys to heal a bit. Bad news is that if you space out his treatments too far his chance of remission decreases.

Good and Bad. Bad and Good. Up and down- it is like being on a roller coaster; happy at one point, but afraid of what is to come. Afraid of the unknown.

We are just trying to enjoy the good when it comes with the bad. We are grateful that the good helps cushion the blow of the bad. And hoping that there is more good in our future.

Make-A-Wish Announcement

2011-12-27T09:26:00.006-07:00

Amazing things happened for our family this last week. Jackson engrafted on Tuesday morning, his counts stayed up on Wednesday so we got to come home from the hospital on Wednesday afternoon. Thursday night was one of the most exciting nights for Jackson- a big Make-A-Wish announcement was made for him.

Our amazing wish granters Trenna and Kami had planned an evening at the Olympic Oval. We arrived and Jackson was able to go for a ride on the Zamboni- when we played the Wishing Quest game way back this summer, Jackson said that if he could be anything, he'd be a Zamboni driver. Well, his wish granters remembered what he said, and made another wish come true.

They held out a giant banner telling Jackson that his wish was granted when he was driving around the hockey rink. There were so many people there to support Jackson, and it was overwhelming and awesome at the same time.

After Jackson's Zamboni ride, he was given some gifts, and then was able to skate on the ice in all of the official hockey team gear.

By the time the evening was over, Jackson was exhausted, and I was wired up. It was a very stressful evening for me, because I am a planner and I had no idea what the plan was. Apparently there was an itinerary somewhere, but I never saw it. And if you ask Brian, I get pretty demanding when I am stressed out.

Overall, it was an amazing night. I can't wait for the next part of his wish! This was such a morale booster for Jackson. He had just gotten out of the hospital the day before and he loved having a surprise to look forward to.

Santa's Workshop

2011-12-20T08:17:00.000-07:00

The nurses call Jackson's room "Santa's Workshop". I love it. And, it gets more festive by the day. I took a few pictures of things around Jackson's hospital room that make me happy, and I wanted to share them with you.

Jackson's tray table has a secret compartment, and Jackson stores his treasures in there. He reorganizes this several times a day. It makes me happy.

Jackson looks forward to opening his chocolate advent calendar every day. His Grandma June gave it to him, and on most days, that one piece of chocolate is all he eats the entire day. He LOVES it, so it makes me happy.

Jackson has a tiny upside down Christmas tree in his room. We have some decorations on it that my mom brought up for Jackson, but my favorite part is that it is decorated with his Beads of Courage.

Jackson has enjoyed crafts, and he loves making these snowflakes to decorate his room.

Some of Jackson's best buddies made him this beautiful string of paper snowflakes to hang in his room. They make the mirror very festive!

And of course, he has a stocking hanging up.

He made this popsicle stick Christmas tree, and made me write "life flight" on it. It figures that my boy would decorate a Christmas tree with some sort of transportation vehicle. That boy has always loved cars, trains, planes, and anything that has an engine.

The popsicle stick reindeer... notice it has two different colored eyes. The perfectionist in me cringes, but the mom in me tells the perfectionist to shut up- that it is perfect, because Jackson made it.

Window clings placed carefully by a sweet six year old.

Snow flake mobile.

3D Paper snowflake- thanks for YouTube for teaching me this one!

Magnetic advent calendar.

Syringe Christmas lights made by Brian. Each syringe had to be drilled out to fit over the lights. This gets lots of comments from the nurses, and is totally appropriate to be hanging in a hospital room.

Christmas wind socks hanging from the HEPA filter.

Of course, the BMT Birthday sign hung by some more snowflakes.

And what could be more festive than a bright red bag of blood? We love blood transfusions!

And best news ever- Jackson engrafted today! Home on Christmas!

Jingle Jingle Jingle

2011-12-17T10:21:00.002-07:00

Jackson had a very special visitor on Thursday night. He hasn't stopped talking about it since.

And he keeps singing this song from Rudolph the Red Nose Reindeer. He doesn't get all of the words right, but I love the way he sings it.

Updating....

2011-12-15T13:48:00.003-07:00

Being at the hospital this round has been harder for me than for Jackson. At first I was very depressed, especially since they stuck us in the same room, so it really felt like we never even left. It has been hard for me to have my family apart... we are usually a do-everything-together type of family, so being apart is difficult to say the least.

Jackson has been doing really well so far. He has to do special mouth wash 4 times a day, and he hates it, but he complies. He is currently on 4 different antibiotics as a preventative measure. He survived the 3-a-day showers that he had to do for the first 4 days of our hospital stay, and thankfully his skin didn't dry out as badly as it did on the last round, and he doesn't have scabs around his central line site.

Jackson's ANC hit zero on day +4 (today is day +6) so this is when things start to get a little scary. The ANC number refers to Jacksons ability to fight infection... zero means just that; he has zero ability to fight infections right now. Because of his ANC being at zero, we are being extremely cautious about hand sanitizing and keeping germs out of his little room.

Even with his ANC being zero, we are still allowing some very special visitors come and see Jackson. Yesterday Jackson was surprised by two of the Utah Highway Patrol who came for a visit. They brought him a little bear and a squishy cop car. He was so excited to see them.

I also have heard that he will be getting a special visit from Santa this week- Jackson is so excited, but also a little bit nervous.

Jackson and I have stayed busy at the hospital crafting. The nurses call Jackson's room "Santa's Workshop" because we're always making some sort of Christmas decoration to hang on the walls. We've made mittens, candy canes, Christmas trees, ornaments, paper chains, snowflakes, reindeer and even a sleigh. We've been very busy doing lots of Christmas type crafts. Yesterday while we were crafting, I was impressed that this time with Jackson is such a special gift. Not many 6 year olds will sit down and do craft project after craft project with their mom. I feel so blessed to be able to spend this time with him. And believe it or not, this time we've been in the hospital has made me feel the Christmas spirit more than if we had been at home. I think this time at the hospital has forced us to slow down and to prioritize what is really important.

Oh yes, one more thing...

We're right on track, and the doctors think Jackson will be home on Christmas! What a wonderful present!

2nd Bone Marrow Transplant

2011-12-12T09:17:00.001-07:00

Well, here we are again. Round two. And honestly I have lots to say, but feel somewhat reluctant to share.

So far, other than extreme nausea, Jackson is feeling pretty good. His morale is starting to waiver, and he isn't the only one. Being in the hospital at Christmas time is difficult, but we are doing our best to stay positive and grateful. After all, we really have been so blessed.

I read an article in the Ensign yesterday and a few of the words were very significant to me, so I am going to share them here.

The Choice to be Grateful
-Henry B. Eyring

"So to be happy and avoid misery, we must have a grateful heart. We have seen in our lives the connection between gratitude and happiness. All of us would like to feel gratitude, yet it is not easy to be consistently grateful in all things in the trials of life...Our sorrows can make it hard to see our blessings and to appreciate the blessings God has in store for us in the future.

We must ask in prayer that God, by the power of the Holy Ghost, will help us see our blessings clearly even in the midst of our trials. He can help us by the power of the spirit to recognize and be grateful for the blessings we take for granted. "

Ball Pump

2011-12-05T09:22:00.004-07:00

When Jackson came home from the hospital they sent him home on an antibiotic for his infection. The antibiotic he is on is called Vancomycin and it has to be hooked up to his central line and go through his tubes over a 90 minute time period.

We have a home health care company that provides us all of Jackson's IV medicines, central line care supplies as well as NG tube supplies and formula. When we came home, they sent us these 'ball pumps' to administer Jackson's vancomycin.

I think they are really cool, and I like the way they work- so I thought I would show you all.
Basically the pump is about the size of a tennis ball, and the ball is sort of like a balloon that is filled with the antibiotic. Then the ball is hooked up to a tube and the tube can be attached to Jackson's central line. The tube that is attached to the ball has a clamp on it. The clamp starts and stops the pumping of fluid. What happens is as the balloon deflates, it pushes the antibiotic through the tube and into Jackson. There is a flow regulator that only allows the medicine to go through the tube at a certain rate, which administers the drug over a 90 minute period.
It is all very techy and cool.
I was teasing Jackson that I thought it looked like a Christmas ornament...

Blessings and Gratitude

2011-12-04T13:07:00.003-07:00

There is something about this year that makes everyone reflect. We reflect on the blessings in our lives, and we recognize the things in our lives that are good. At first, I was worried that this time of the year would make me feel bitter. After all, I have so much that I could be bitter and angry about. Things this year are so different than years past.

I was worried that this year for Thanksgiving that we would feel alone and singled out. I was worried that we wouldn't be missed at the family dinner. I was worried that it wouldn't feel like Thanksgiving, and I was worried that I would find nothing to be thankful for. All of my worries were for naught. We had an amazing Thanksgiving. We were missed at the family dinner, and a beautiful blog post on my sister's blog was dedicated to our family. We were together at home- our little family- together. I got to cook a feast for 4. We read the newspaper and searched the ads. The kids danced and laughed as they played together. We watched ELF and A Christmas Vacation just like we always do... but this year was different.

Different because it was less chaotic, less busy, and less hurried. Brian got to work on the car. Jackson went outside and rode his bike and Hailey had a nap. I baked, and cooked, and enjoyed making a meal that I was proud of. It was different than any Thanksgiving that we have ever had. But I also was thankful this year for different things than I have ever been thankful for.

There are a few things I want to share here for which I am grateful. I feel more grateful for the gift of life. I have never realized how short and fragile life is. I am grateful for my family, especially my children. I am grateful for the amazing way that Jackson has tolerated his cancer treatments, and I pray that he will be cancer free soon- and that the long term side effects from the chemo and radiation will be minimal. I am thankful for doctors, nurses, techs and medical advances that give us hope.

Other things that I am grateful for are things that I never knew anything about until 2011. Platelets, hematocrit, stem cells, Bone Marrow Transplants, chemo drugs, neutrophils, white blood cells, doctors, nurses, techs, nurse practitioners, immune systems, radiation, rescue medications, antibiotics, feeding tubes, central lines, TPN, child life specialists, hospital buddy dolls, chemotherapy drugs, MRI's, CT Scans, radiation therapy, a warm shower at the hospital, and having a washer and dryer available to use at 2 in the morning when you sick child throws up all over everything.

Cancer makes you thankful- as twisted as that sounds. Cancer makes you more aware of the little things, and it gives you perspective. Perspective on life and what really matters.

Cancer- as horrible as it is, has helped me be more thankful for the things that are important. And as we enter this Christmas Season, our family is more focused on being together, and less worried about gifts, and the commercial aspect of Christmas. We feel more gratitude for the gift of our Savior, for His Atonement, and His loving sacrifice.

We have hope. Hope for a better year in 2012. Hope for a cure. Hope for a cancer-free son. Hope for health and wellness. Hope that we can continue to be grateful, and avoid being bitter and angry. Hope is a strong thing, it is sometimes the only thing that keeps you moving forward. We have hope for a brighter future, but most importantly- WE HAVE HOPE.

NG Tube

2011-12-01T17:17:00.001-07:00

Today Jackson got an NG tube placed. We are hoping to use the NG tube to be able to give him formula instead of the TPN he has been on for the last month or so.

Formula feelings are better for Jackson's liver and his gut (as the nutritionist says). Also, with the NG tube we will have to access his central line less, which hopefully will prevent future infections.

The infection that caused Jackson's fever is in his blood stream so he is septic right now. We are waiting for the antibiotics to kill the infection and then we can go home. Hopefully the NG tube will reduce the possibility of future infections. Because of the Bone Marrow Transplant Jackson basically has zero immune system and even though we have been super careful this is just another precaution that we can take.

Another reason we switched to the NG tube is that the formula is about 1/10 the cost of the TPN.

Placing the NG tube was torture for Jackson. He hates it and is very sensitive about it. About the only thing that has made the tube okay is that his Cancer Fighting Friend Annabelle has an NG tube too.

After he calmed down from the tube placement he was ready to play again. He rode bikes all around the ICS floor and even raced his nurse Jared. Only 20 minutes earlier he was mad at Jared for putting the feeding tube in, but he moves on pretty fast.

Overall not our favorite afternoon, but Jackson taught us this afternoon not to hold a grudge. And he reaffirmed my knowledge that he is one strong boy.

Now we wait for the infection to go away and hope the NG tube is worth all the drama.

Funny kid

2011-11-30T12:38:00.001-07:00

We finally got settled into our room at the hospital and everything seems to be better. They found out what type of infection Jackson has so now they are treating it and hopefully he can come home on Friday.

Yesterday Jackson and I were hanging out making a paper chain when Jackson and I had this conversation.

Jackson: Mom, I hope when I am a Dad that my kids don't get cancer.

Me: Oh Buddy, I really hope thy don't get cancer either.

Jackson: Wanna know why?

Me: Yeah, why?

Jackson: Because I don't wanna sleep in THAT chair.

Oh man. That boy cracks me up!

Emergency Admit

2011-11-29T10:06:00.001-07:00

Jackson woke this morning with a fever of 104.1 and throwing up So we made a speedy trip to the hospital. He has already had two different antibiotics and also two bolus's of fluid to get his blood pressure up.

A fever for Jackson means a stay in the hospital for probably three days.

Platelets still are low (13) so we have to push off his next round of chemo until he recovers from this fever and until his platelets recover in their own.

Once his fever comes down he will get another platelet transfusion today.

This emergency trip to the hospital is stressful. I hope we don't have to do this again.

Chemo and platelets

2011-11-25T09:59:00.001-07:00

Jackson is getting a platelet transfusion this morning. Platelets are the last thing to recover after chemo. To be honest, it is kind of nice that his platelets are low because that means he gets to stay home a little longer. However, the longer he stays home the more likely that he will be in the hospital on Christmas.

On another note: We found out today that there is a shortage of Thiotepa (one of Jackson's chemo drugs). The doctors said that they can't find any but that they are working on it. If they can't find the chemo drug our next round will be pushed off until they can find his chemo.

TPN

2011-11-22T16:29:00.004-07:00

Jackson has been on TPN before at the hospital. TPN as I mentioned before is basically all of Jacksons' nutrition pumped through tubes into his central line. Because Jackson hasn't been eating, they sent us home on the TPN.

We have never had to do TPN at home, and it is definitley a learning process.

Last night the Home Health Nurse came to our house and taught us how to prime the pumps and get Jackson hooked up to his TPN. The TPN runs continuously for 12 hours from 8PM to 8AM and comes in two seperate bags- one for Lipids, and one for Electrolytes. And because Jackson doesn't have an IV pole here at home, he gets to sport a very stylish backpack that contains the pumps and the bags of fluid.

Lipids are a fatty substance that is white and it is sensitive to lights.

Electrolytes look like water, but then you add the vitamins that come in two tiny little vials, and the clear electrolytes change color to a pale yellow.

Even though the pumps run the fluids into Jackson for 12 hours there is still a little bit of fluid left over in the morning. The nurse suggested that we either throw the left over TPN in the garbage, or we could use it as plant food because of it's high nutritional value. So, this morning I dumped the left overs into my one and only plant- we'll see if it really does help.

I am just glad that even though he isn't eating, he can get some nutrition from another source.

Here are all the supplies:

And the Lipids:

Getting the vitamins ready to add to the electrolytes:

Adding the vitamins:

Shaking the bag to mix it together:

Adding new tubing to the pump:

Priming the TPN pump:

Putting the tubing into the bag:
Making everything fit into the backpack:

Hooking Jackson up- cleaning the caps:

Flushing the lines with saline first:

Now hooking up the TPN tubes:

Pushing the "Start" button: Jackson took this picture, and was so proud of it!

Wearing the backpack. It weighs almost as much as he does.

White Blood Cells Are AMAZING!

2011-11-20T18:18:00.001-07:00

Jackson's counts started to come up on Thursday and it seemed like immediately he started to feel better. By Friday he was no longer on any type of pain meds and his ANC was up from 200 to 500 and it was declared that he was officially Engrafted.

Saturday he woke up with an ANC of 800 and once he got out of bed, he didn't sit down all day. I love seeing him feel better. Watching him play is so nice I love that he feels better

Today his ANC is 1200 and we are scheduled to go home in the morning. He is SO ready to go home, and he misses Hailey so bad. However before we can go, he will probably need a platelet transfusion.

Going home Jackson will have to be on TPN (food through his central line) because he still doesn't eat anything. He will have to be "hooked up" from 8PM to 8AM which really isn't that bad because he will be asleep the entire time. He can still eat if he chooses to, but I don't expect he will eat much of anything and with him being on TPN we wont worry too much about him if he chooses not to eat.

Food. That is a new thing we get to worry about at home. Jackson is on a low microbial diet, so there are lots of food restrictions and things we have to do differently. For instance: Jackson can not eat any fast food, fountain beverages, soft serve ice-cream, berries, deli meat from the deli, food that has been out for more than an hour, etc. I have to be very contentious of things when I cook so that I don't spread germs or possible food borne illnesses. The Bone Marrow Team gave me a list about 6 pages long of things that Jackson can and cannot eat, it is very detailed and the restrictions will last until about April.

The food thing is a bit crazy, for example; Jackson must have his own jar of peanut butter and all of his own condiments. If I make him a peanut butter sandwich and if I didn't get enough peanut butter the first time, must get a new knife to add more peanut butter to the sandwich so that the possibility of germs being spread is lessened. If he wants cereal, he must have the entire box to himself and I must package it into individual size servings as soon as it is opened and I must wear gloves.

And although the food thing is crazy, I do not feel overwhelmed by it. I believe it will become second nature for us over the next 6 months or so. The one thing that will be hard is that Jackson already misses Cafe Rio and their Creamy Tomatillio Dressing, rice and black beans.

One big thing that was stressful is the list of things that had to be cleaned before Jackson could come home. Because his immune system is so fragile we had to "Spring Clean" our house before he can come home. The Bone Marrow Team gave me a booklet of things we had to have cleaned, and that list was long and detailed. Thank goodness we have such a wonderful Ward Family and incredible neighbors that helped me all day yesterday to get things ready. I have NO DOUBT that I could not have accomplished it all by myself.

We get one week at home. One week to recover and get rejuvenated before we go back for round two. One week will go by so fast we already have plans to put up our Christmas tree and to enjoy Thanksgiving at home. I am sure we will fill the time with lots more fun stuff.

We can't go anywhere for Thanksgiving because of the germs, so this will be the first time I have ever cooked an entire Thanksgiving feast all by myself. Wish me luck!

Yahoo!!!

2011-11-17T08:46:00.002-07:00

This was the picture Brian sent me this morning. What a relief.

Tubes and Pumps

2011-11-16T10:58:00.001-07:00

Things are somehow moving forward. And the days are passing even if they are slow and filled with pain.

Jackson's counts are at zero, which is expected but not fun.

When his counts are at zero he has no immune system and he can get sick super easy. This round has been tough. Jackson has been in incredible amounts of pain due to c-diff that he tested positive for and also the mucusitis that is caused by the chemo. Basically he has mouth sores in the lining of his stomach which is very painful.

Jackson is hooked up to six different pumps on his IV pole. And throughout the day and night he often has all six pumps going. He is currently on five different medicines to fight off infections. Three are antibiotics, one is an anti viral and one is an anti fungal. The doctors started Jackson on a steady flow of Morphine to help ease his pain The doctors have also started Jackson on TPN which is IV nutrition- because he hasn't been eating anything.

The other day Jackson wanted to eat a donut but he is on a low microbial diet and they didn't have a donut that met the special low microbial diet requirements so Jackson settled for a muffin. Jackson took a big bite of the muffin and started to cry. I asked him what was wrong and he said that he wants to eat but that nothing tastes good. Chemo sure messes up Jackson's taste buds, and with Jackson's sore stomach from the mouth sores he hasn't eaten more than a gummy worm in three days.

When Jacksons counts are at zero it seems like things just keep getting worse and worse. At the beginning of this round when Jackson had to take several showers a day his skin really dried out and he got a big sore around his central line. Since Jackson has no white blood cells, his body has no ability to heal itself he still has a big sore under his bandage. Monday was bandage change day and it was with out a doubt the most painful bandage change we have ever endured. When we took off the bandage it ripped off some of Jacksons scab and then we had to put alcohol on the scab and on his super dry skin.

I don't want to lie, this round has been more emotionall taxing for me. Far more emotional than I expected. Brian and Hailey were sick for the first 4 days so they couldn't come to the hospital. Finally Hailey got better and she could come see Jackson but two days later they declared the start of "RSV Season" and now Hailey can't come up to visit due to restrictions. I feel like our family really has been torn apart during this round. I leave the hospital every time in tears. I hate talking about cancer related stuff, sometimes it overwhelms me. I hate how cancer has torn apart our family and how it is making my normally healthy boy feel sick and lay in bed all day. I hate that Jackson screams out in pain consistently all day long. I hate seeing him nauseous and miserable.

I know things will get better and that we are taking the steps to cure Jackson's cancer, but this isn't an easy road we are on. Right now I am praying for white blood cells because not only does that mean we get to go home, but more importantly to me, that means Jackson will start to feel better.

Shake'n'Bake

2011-11-12T20:06:00.003-07:00

Turns out that Jackson's fever, shaky feeling and cold was all related to one of the 4 antibiotic drugs that he is on right now. He is on the drugs mostly as a precautionary, because he has ZERO immune system. The one drug that he got is known to cause what our nurse called "Shake'n'Bake" in about 3% of the kids, and apparently Jackson was part of that 3%.

Shake'n'Bake refers to the shaking and shuddering that Jackson was doing yesterday, and the "Bake" part refers to the fever.

Thank goodness they have other drugs, and they took him off of this one. I just wish I would have known before hand, because he was a very unhappy boy yesterday.

So it begins

2011-11-11T14:55:00.001-07:00

Today is Day +4. His counts are at zero, he is nauseated, cold and shaky. He also tested positive for C-Diff this morning. Hopefully things don't get worse.

Passing Time

2011-11-08T20:08:00.001-07:00

Jackson spent several hours playing basketball today at the hospital.

I have to brag a little; I have the most creative husband ever!

1st Bone Marrow Birthday

2011-11-07T14:36:00.005-07:00

Yesterday was Jackson's very first Bone Marrow Birthday. I have to mention that it is his first, because he will have three Bone Marrow Birthdays.
So far, things are going very well. We got admitted in the hospital on Friday, and Jackson got the two separate chemo drugs both on Friday and on Saturday. Jackson started out loving the showers, but by the third one, he was tired of the shower, and super upset that he had to have his central line site cleaned over and over again- basically 4 bandage changes a day, and they are extremely painful for Jackson. Thank goodness he's done with the showers for this round!Jackson waited very patiently for Daddy to arrive at the hospital. He watched out the window non-stop for about 20 minutes waiting for our car to drive through the security gate.

Yesterday was exciting and interesting and even a bit anti-climatic. The entire nursing staff and some of our favorite housekeeping staff all came into Jackson's room at the same time and sang "Happy BMT Birthday" to Jackson to the tune of "Happy Birthday". They sang loud, and cheered lots. It was all very exciting.
Once everyone left the man who was wearing the white lab coat brought in with him the big Bio-Hazard canister. He did lots of prep work to thaw out Jackson's stored stem cells.

Once the cells were thawed, he handed the bag over to our nurse, who hung them from the IV pole, and they slowly made their way down the tube into Jackson. It only took about 10 minutes for all of the cells to get to Jackson.

Now we wait for them to start growing (the doctors call that "engraftment"). Before his new cells grow, however, the old cells have to die completely.

Here's a very simple explanation of Jackson's Bone Marrow Transplant (BMT). Jackson's current bone marrow is cancer free, so in theory, he doesn't technically NEED a BMT. However, the research shows that AT/RT is a very stubborn tumor, and doesn't respond to more gentle chemo drugs. So, they hit the tumor with super harsh chemo, to kill every quick growing type of cell (the tumor as well as hair, and other things). Because the chemo is so harsh, it also kills quick growing cells like stem cells. Once stem cells grow up, they turn into bone marrow, and because the chemo will kill all quick growing cells, Jackson's bone marrow is now non-existent. To help Jackson have bone marrow again, they did what they call Stem Cell Rescue or a BMT for Jackson. They gave him new bone marrow or stem cells, and now we wait for the stem cells to turn into marrow. When that happens, his counts will come up (engraftment) and we get to come home.

Because Jackson's tumor is so stubborn, we will do this three times, and hope that the process has destroyed the cancer that is in Jackson's head- and that he can again be cancer free.

On an interesting side note: When they freeze the stem cells, they have to add a preservative called DMSO. DMSO helps the stem cells not die during the freezing and thawing process. But because the stem cells have DMSO in them, they had to pre-medicate Jackson before they could give him the transfusion. They gave him hydro-cortisone, Benadryl, Manitol and Tylenol. All of those help prevent some of the side effects of DMSO, but something they can not prevent is the smell that comes with DMSO. The smell is NASTY. It smells like creamed corn. The entire hospital room smells like it, and Jackson smells like it (especially his breath). The smell will probably hang around for 2 or 3 days and let me tell ya- I don't want to eat corn any time soon. Blech.

Back Again

2011-11-05T08:39:00.001-06:00

We got admitted back into the hospital yesterday morning to start Jackson's first of three Autologous Bone Marrow Transplants.

When we got here we went through the standard height and weight measurements. Then they repeated his EKG because they somehow lost the previous results.

We hung out all day watching television which was wonderful for Jackson. We don't watch much TV at home, so he feels like it is a treat.

He got his chemo in the afternoon and now we are doing our best to prevent some side effects. The chemo he got (Carboplatin and Thiotepa) cause mouth sores which can cause more serious infection later on, so to prevent that we do 'mouth care' four times a day. He has to brush his teeth and then swish and spit two different mouth washes. Surprisingly the mouth care has caused the biggest fits so far- it is just one more thing that is out of his control.

Thiotepa is the chemo drug that I have been most worried about. It is known to cause AML (another type of cancer- leukemia) down the road. But more than worrying about that, I have been freaked out about the more immediate side effects. Thiotepa exits the body through the skin, and if there is anything tight or constrictive on the body it causes burns. To help prevent burns Jackson has to shower 3-4 times a day for the first 4 days of our hospital stay. And they change his bedding that often too.

Jackson is SO exited to get to shower. Because nothing adhesive can be on his body he can't wear a bandage over his central line and they make us wash EVERYWHERE with soap really well. So, he gets to have a 'normal' shower. He is in heaven. He hasn't had a regular shower since June.

He wears a twill tape necklace to hold his tubes in place so that they dont get pulled out and we are figuring a way to keep the end caps dry while he showers.

This morning his shower has already lasted almost half an hour, and as I type he is still in the shower. I can't get him to get out. Last night he said "the shower is the best part of bone marrow". He also told me "I never felt so good with my line unpackaged".

So far, so good. Today is his second and last day of chemo, then tomorrow he gets a "rest day". And Monday he will get his new bone marrow. After that, we wait for the new stem cells to grow. From here we hope for the best and try to prevent complications.

Here is a little reminder that tomorrow is the day our ward is fasting for Jackson. Thank you in advance for your prayers.

Fasting

2011-11-03T10:30:00.001-06:00

Our ward is having a fast on Sunday, November 6th for Jackson.

We would like to invite anyone who is willing or able to join with us.

Getting Ready

2011-10-31T19:16:00.003-06:00

We've been very busy driving to doctors appointments the last few days. I can't believe how many tests they make these little cancer kids go through before they can go in for more chemo.

Jackson is scheduled to start another round of chemo very soon- and go in for his bone marrow transplant. To get ready, Jackson has to go through lots and lots of tests to make sure his little body and mind can handle what's coming up.

This week he has 8 doctor appointments in 5 days. Most of the appointments are tests and scans. He's already had an MRI of his brain and spine. An EKG and Echocardiogram of his heart- some chemo drugs can affect the heart functions. A GFR which is a kidney function test- some of the chemo is extremely harsh on his kidneys, and they want to make sure everything there is holding up okay. An Audiogram test to see if the radiation has already had an effect on his hearing (the audiologist said that he will probably see hearing loss over the next 3-5 years due to the radiation treatments that he had). And last but not least, a Lumbar Puncture or spinal tap to see if the cancer cells have spread to his central nervous system.

So far, we don't really have results from most of the tests. I have faith that all of our prayers that the bad side effects would be minimal will have helped.

Still more tests to come. Jackson has to go through a mental evaluation before he can go in for the next round of chemo. The chemo drugs that they give before bone marrow transplant are super harsh, and it sounds like it's going to be a very tough few months that lie ahead. The mental evaluation test from what I understand will last about 4 hours, and they spread it out between two days.

I have been handling things pretty well lately. Our last two months at home have been heaven on earth... literally. Our home has been so happy, and almost back to our old 'normal'. However, with the approaching hospital stay, and all of the hell that our son has to soon endure, I have been starting to have some anxiety and depression.

Just a few days ago, Jackson came to me crying. He said "I miss being cancer free". Of course I cried with him. I tried to assure him that soon enough he'll be cancer free again. I hate cancer. I still don't understand why this happened to Jackson, but I know we're somehow surviving, and one day, hopefully soon, he'll be cancer free again.

Until then, we'll do what the doctors tell us to do. We'll take the steps, and walk in faith.

Making a Wish

2011-10-30T12:44:00.013-06:00

Jackson is an official Wish Kid, and let me tell you, the Make-A-Wish foundation is an amazing thing.

We were welcomed to the Wishing Center like royalty.

We all got a wishing token to make a wish in the wishing pond in the back. Jackson told me that his wish was "to be cancer free." That was my wish too.

Then we went upstairs and saw all of the stars from past Wish Kids. Once Jackson's wish has been granted, he too will have a unique star that will hang for him forever. Seeing these stars was surreal. It was beautiful and exciting, but also a sad realization that so many kids have had to go through so many tough experiences to have earned the title of "Wish Kid".

After a meeting, Jackson decided on his wish, and he took his special key and went to unlock to door into the Wishing Tower.

Jackson declared his official wish and two back up wishes and they placed his wishes into a golden canister that would deliver his wish to the Wizard.

Once we got into the room we all got to read our special wishes for Jackson. It was a very humbling experience, many tears were shed during that point.

After we were done with our turn, it was Jackson's turn to make his wish. He followed the lights on the floor with the canister in his hands and found the top of the Wizards hat behind the water fountain. He placed the canister in the cone that turned out to be the top of the Wizards hat and continued to follow the lights on the floor. The lights led him to the bottom of the Wizards hat, and once he placed the top of the hat on the bottom of the hat, the room changed colors, and music started to play. It was magical.

We finished off the night with a ton of pictures, and root beer floats (Jackson's favorite!). Then on the way home Jackson fell asleep in the car.

Apparently for Jackson, making a wish was a exhausting.

I just realized that in this entire post I never mentioned what Jackson's wish was! His wishes were:

A Go Kart with a race track in our back yard.
A fancy playhouse with a big slide.
A game room.

Now we wait to see if the doctor approves his wish, and if the Wizard can grant his wish. The entire process takes a little while, and they want to wait until Jackson is healthy enough to enjoy his wish, so at this point, we think his wish may be granted sometime in the Spring. At that time, Jackson gets to have his "star raising party", where he will add his star to those already hanging in the entry way of the Wishing Place.

Last Day of Radiation

2011-10-18T17:25:00.004-06:00

Today was the last day of radiation therapy for Jackson. 28 treatments complete. I can't believe how fast it seemed to go by.

Today marks the half way point in Jackson's treatment protocol. Three steps down and three to go.

Chemo- Round 1
Chemo- Round 2
Radiation

--------Here we are!----------------

Autologous Bone Marrow Transplant- Round 1
Autologous Bone Marrow Transplant- Round 2
Autologous Bone Marrow Transplant- Round 3
then...Hopefully Cancer Free!

At the cancer centers they have bells hanging on the wall. When treatment is complete, the patient gets to ring the bell. Every time I have seen someone ring the bell at Primary Children's I cry. Every. Single. Time. That bell is the sound of victory to me.

Jackson got to ring the bell today at radiation. And of course, I cried.

I couldn't contain my tears. It wasn't that ugly type of cry that I have done so often, but more of a slow leaking tear sort of cry. You know, the kind where you have to keep sniffling, and tears come quickly like a drippy faucet? Yep, that kind of cry.

I had so many emotions today as Jackson rang that bell. I was proud of Jackson, proud that he did it, and proud that he could do it with out sedation. I was proud that not one time did he ever complain. I had happy emotions, and sad emotions. I am sure going to miss those people at radiation. They really were amazing. They were kind to my kids- and anytime someone loves my kids, I can't help but love that person. They made radiation fun for Jackson, and they would race with him around the office. They brought prizes for Jackson, and cheered for him all along the way. We really felt like radiation was home, and now we are leaving some of our friends- and that made me sad today.

Some of my tears came from joy, and some from fear. We are half way through Jackson's protocol, and I keep wondering how it's going. Will he really be "cancer free" at the end of this road? I also have fear of the unknown... we still don't know what lies ahead of us in the next several months. We don't know how he will react to the new chemo drugs- there are still many hurdles to conquer.

As we walked out to the car today, I was still crying. I gave Brian a hug, and he too was teary eyed. He whispered to me that "we're making it through this". I can't believe how hard this has all been. Cancer is something I never wanted to deal with, especially for one of my children, but we are making it through, and I am learning so much about patience and the Lord's timing.

Conversation with Jack

2011-10-13T16:34:00.004-06:00

Yesterday while we were driving to radiation Jackson asked me this question out of the blue:

"Mom, do you know what's great about having cancer?"

Wow. Hearing that question hit me pretty hard. What in the world could he possibly think was "great" about having cancer?"

His reply surprised me.

"We never would have met all of these amazing people if I never had cancer."

He teaches me something new every day- and he's right.

Bandage Changes

2011-10-09T20:38:00.001-06:00

I know I haven't been that great at posting lots on the blog. I don't really have much to post about. Things are going really good. Jackson's hair is growing back, but he does have some bald patches here and there due to the radiation. I learned just on Friday that where the radiation goes into his head the hair doesn't grow. Once he's all done with radiation it should grow back just fine in all of those spots (unless the new chemo makes all of it fall out again- which I'm planning on).

I thought I'd share some random cancer tidbit with you... just in case you're starving for an update. Or if you're curious.

Jackson has a Double Lumen Broviac central line in his chest. Basically it is a permanent IV that goes from his chest right to his heart. The line although somewhat bothersome the line makes chemo and blood draws much easier.

The central line can't get wet, so when we shower Jackson we have to be very careful. We also have to flush the line with a saline solution as well as Heparin (an anti-coagulant) every night. Also once a week we have to do a bandage change and a cap change. These things are all basic maintenance to ensure that Jackson can keep the same central line through out his entire treatment protocol (9-12 months). The central line was placed in a surgery, and will have to be taken out in another surgery, and we really don't want to have to replace the line, so we do our best to keep it clean.

I thought I'd take a few pictures of the bandage change process and document it here, just in case any of you are curious.

Here are all of the supplies that we use just to do a weekly bandage and cap change.

This part is the worst... well, if you ask Jackson the entire thing is the worst. Here we are taking off the sticky bandage. Jackson cries pretty hard the entire time, but he is still so brave. He has to wear a mask to help keep everything as sterile as possible.

Another picture mid-bandage change process.

Here is a picture of Jackson's central line going right into his chest with out a bandage. His skin looks amazing, as well as where the tubes go in- luckily his skin doesn't get to affected by all of the tape/bandages/cleaners and other stuff we have to put on him.

Cleaning the site is a rigorous process. We start with 3 separate alcohol soaked cotton swabs, and clean the site very well. Even though Jackson's skin looks great, this usually causes lots of pain and tears.

After the cotton swabs, we use this cool thing that has what they call "chlora-prep" in it. I'm not really sure what exactly is in it, but I know it kills more germs. We scrub with this vigorously for 30 seconds. This usually causes more tears because of the stinging, and the scrubbing.

After the chlora-prep we put some stuff called Cavilion on his skin. The Cavilion makes the bandage stick better- this is the only part that doesn't sting or cause tears.

After the Cavilion we put a sticky tape like bandage over the site. I would have taken a picture, but Brian and I usually have to use team work to get the tube positioned correctly and the tape stretched tight enough for a good fit. Brian places the bandage, and I situate the lines so that they are in a good position.

After the bandage change, we start on the cap change process. We have to change the blue part of the line, and this is usually my job.

It consists of using about 4 gauze pads as well as about 8 alcohol wipes. I like doing it, it makes me feel like a real nurse... sort of.

Here is Jackson with his new bandage and new caps.

We do this once a week, and the entire process takes about half an hour. It is a very stressful half an hour, and we are all glad when it's over.

I try to forget

2011-10-04T20:05:00.004-06:00

I try to forget that Jackson has cancer.

Forgetting doesn't happen, but I try to pretend that he doesn't have cancer. Sometimes it's easier than other times- especially right now during the "radiation" stage of his protocol. We are living at home, Jackson goes to kindergarten, and has play dates. He rides his bike, he jumps and laughs and is a kid. We are doing normal things, and I feel so grateful.

Life is good right now. Jackson's blood counts are up and he feels good. Other than the tumor and the cancer, he is "healthy". Radiation has had no ill side effects that we have noticed yet. He doesn't have burns, or headaches, or loss of appetite, or fatigue like we thought he would. He is doing amazing. And Dr. Thomson said at this point the tumor should be 33-50% smaller.

Saturday we went for a ride in the car to see the fall leaves. We were trying to decide between two different drives to take and Jackson voted for the one where we could go for a walk AND see the leaves. So we drove Guardsman Pass up Big Cottonwood Canyon and walked around Silver Lake.

Jackson loved exploring, and hiking. He has so much energy and climbed every rock we came upon. He stepped into his role as big brother with ease and was quick to protect and guide Hailey along the path and away from danger.

I try to forget that Jackson has cancer, but it is constantly on my mind. I look at pictures of him when he was little, and I start to cry...I think of our lives now in terms of "before cancer" and now "after cancer". I look at his tiny face when he was younger, and I am overwhelmed with a desire to go back to simpler times. Times when he was innocent, happy, healthy, and cancer free.

I keep telling myself that one day he will be cancer free again.

Magical Key

2011-09-29T08:32:00.002-06:00

Jackson got a package in the mail yesterday from Make-A-Wish. The mailman dropped if off while Jackson was at school, and I was so excited that I opened it before Jackson got home, then repackaged it and let him open it when he got home. Man... it's hard to admit that I couldn't wait. I was SO excited- but after the fact, I'm a bit embarrassed now.

Jackson was so excited to check out the shiny silver key. He loved the little box it came in, and promptly took it up to his bedroom and put it in his special treasure box.

The box had a fancy letter with it. When I read the letter it made me cry. I am starting to think that I cry way too much.

This is what the letter said:

It is our deepest honor to invite you and your family to visit A Wishing Place for the special occasion of making your wish.

Please bring this key with you when you come, for it alone will open the Wishing Room at the top of the Wishing Tower.

We eagerly await your presence.

From this point, our wish granters will come to our home and play a Wishing Quest game with Jackson to help him decide what his wish will be, then after that we get to go to the Wishing Center and Jackson will get to make his wish.

Jackson is so excited to get to make a wish. And we are excited for him to have something to look forward to over the next few months.

Young Women and Adversity

2011-09-24T22:51:00.002-06:00

Tomorrow I get to go to Young Women's and talk to the girls. The YW president is giving me 10 minutes... I think I'll just sit in front of them and cry for 10 minutes...hmm, yeah, that will be great.

I am supposed to talk about overcoming adversity and trials. I'm so nervous. I don't know really what I exactly want to share. Because really, this is Jackson's journey, and his trial, but somehow it is also my trial.

Wish me luck... I'm gonna need it.

Milestones

2011-09-22T14:45:00.002-06:00

Jackson hit two milestones yesterday.

The first is that his hair is starting to grow back. He is very excited about it, and I love feeling his little fuzzy head. We know it will probably fall out again during the next few rounds of chemo, but we'll love the fuzz now.

The second milestone is that Jackson has 2 loose teeth! These are his first wiggly teeth ever, and he is very excited that the Tooth Fairy might be coming soon.

On an unrelated sidenote: I talked to our Make-A-Wish wish granter yesterday. The ball is starting to roll, and Jackson will get to make his wish soon!

The people at radiation

2011-09-19T17:50:00.000-06:00

I have been meeting some of the people at the hospital during Jacksons radiation treatments. We have been for 10 days and every day we see the same faces. The first day I kept to myself, but on the second day my curiosity got the best of me and I had to get to know some of the people.

So far I have met 3 different cancer fighters. Ray- a kind, retired pediatrician who is fighting Prostate Cancer. The puzzle lady- I can't remember her name- she is fighting Breast Cancer for the second time. And then there is Chris and his wife Amy.

Chris is what I would stereo type as the typical "Harley Davidson biker". He is gruff looking, strong looking, and to me he is even a bit intimidating. He is maybe in his 40's, tall, and wears a bandana on his head. He is very macho.

Friday after Jackson and Chris went back for radiation Amy came to introduce herself to me. She handed me a very cool bandana and said that Chris wanted to give it to Jackson. I guess they had overheard me talking to some of the other people in the waiting room about Jackson and how Jackson has a brain tumor.

Over the next few minutes Amy and I talked then Chris came out of the radiation room and I got to talk to him again. We chatted for a few minutes and I learned that Chris also has a brain tumor. Chris said that Jackson is his hero. He said that he has been wallowing in his own self pity but then he saw Jackson. He said that if Jackson can be happy and energetic that he could be happy. He said that watching Jackson has given him hope and courage. He said "watching him makes me think 'I can do this'".

As he told me about how Jackson has helped him I was touched. Then as we drove home I told Jackson how he had helped Chris. I told him that they are "brain tumor buddies" and that Chris thinks Jackson is a hero. As I told Jackson these things I was overwhelmed with emotion. Driving down the road with tears running down my cheeks.

Sadly cancer has become our new 'normal'. Doctor appointments, and radiation appointments are routine. This weekend has brought new tears back to my eyes. I have been reminded how strong my little boy is. He is a giant hero squished into a little body.

What a blessing to have a hero so close to me. He is definitely someone I strive to be more like.

Strong

2011-09-19T17:30:00.001-06:00

We have a social worker that works with our family at the hospital. Today she told me "you can be strong and still cry."

I hope that is true.

Septra

2011-09-16T09:38:00.001-06:00

Things with radiation are going so great, and because they are so great, I often forget to blog. Since things are so non-eventful (the way I prefer it) I thought I'd blog a random cancer fact.

Jackson is currently taking only one medication. One- can you believe it? Most cancer kids have a list a mile long of prescriptions that they have to take, and Jackson only has one! The medicine that Jackson takes, he only takes it on Monday and Tuesdays twice each day. The medicine is called "Septra". The Septra helps Jackson's body to combat pnemonia- cancer kids are more susceptible to a certain type of pnemonia while they are in active treatment, so he has to take this medicine to help prevent more illness.

One of the nurses told me that even though he only has to take it on 2 days of the week, that it is still VERY important, and that we SHOULD NOT forget to give it to him. I like to think I am pretty responsible, and that I wouldn't forget to give him the Septra- it is very important. But just in case we have alarms on our phones that beep EXTREMELY loudly every Monday and Tuesday at 8:00 AM and 8:00 PM alerting us that Jackson has to take his Septra.

The alarm has been very helpful.

So... now you know a random cancer kid fact.

Oh yeah- Jackson HATES the taste of Septra. He is very vocal about how nasty it tastes. And it's pink.

A Million Thanks

2011-09-14T20:34:00.008-06:00

Saturday was amazing. More than we ever expected, and beyond what we could have imagined. Our amazing friends put on a fundraiser for Jackson and held it on Saturday. They called this event "For Jack's Sake". I knew that they had been working hard for a long time on it, but I never could have imagined that it would have turned out so incredible.

This event was overwhelming for us, and extremely humbling. We felt so much love and compassion being surrounded by the people in our community. I never could have guessed how many people would show up to support Jackson. I don't think Jackson still understands how lucky he is to have so many people cheering for him.

Thank you. I feel like those words come out of my mouth a lot, but still they can never can be enough. Thank you. Those words seem so inadequate to express the overwhelming gratitude that we as a family feel for all of your love and support. Thank you. I don't know lots of you that came on Saturday to support our boy and I don't have different words to express how grateful we are. Thank you for coming. Thank you for taking time out of your busy schedules to come spend an evening with us. Thank you for loving our family. Thank you for caring about our son. Thank you for your support, and your hugs, and your kindness and your generosity and your prayers.

Thank you. From the bottom of our hearts.

September 11, 2011

2011-09-13T13:03:00.000-06:00

So grateful for freedom.

For Jack's Sake

2011-09-09T21:43:00.004-06:00

(click to enlarge)

I know this post is past due. We have incredible friends who are putting on this even, and I know it

will be amazing. I would love to see all of you there tomorrow, there is an AMAZING raffle, and silent auction.

First Day of Radiation

2011-09-07T07:39:00.003-06:00

Yesterday was Jackson's first day of radiation. If you ask him how it went, he says "I rocked it". He really did rock it. He went right in, climbed up on the big table and got situated on the bed with the pillow and his mask. I squished his little arm, and said I'd wait for him outside, he said "okay, bye mom!" and that was it.

I waited in the waiting room for about 10 minutes, and then I heard cheering. I knew that he was finished and soon enough he was literally running down the hall, racing out to see me again.

He loves the way his mask turned out, and he loves that he already knows the people at the radiation clinic.

While we were there I took a moment to explain to Jackson that everyone in that building has something in common. Either they know someone who has cancer, or they themselves have cancer. Jackson was excited to know he's not alone. We got lots of curious looks when we were there though, it is very rare for a child to be able to get radiation at that hospital, because most kids cannot lie still enough for the treatment. So for people to see a kid- at that facility- is out of the normal.

We left the hospital and I was so full of pride. I am proud to be Jackson's mom, what a privilege and a blessing.

Metro Steel

2011-09-06T07:37:00.004-06:00

A while back we went to a store down in the industrial part of town. While I was in the store, Brian and the kids drove around and went exploring. While out they ran across a really neat recycling company that recycles steel among other metal things. I vaguely remember mentioning to Brian that I thought it would be a very cool place to take pictures of our kids.

Fast forward several months. I had still been thinking about that awesome recycle place, and I remember seeing these giant metal balls. After Relief Society one day our lesson was on adversity, and the refiners fire. I immediately remembered the steel yard again, and I wanted to take Jackson's pictures on the pile of steel balls. He is enduring a great deal of adversity, and I knew the steel balls would have a symbolic significance to me- and hopefully to Jackson one day too.

Yeah, right. I knew that there is no way any company would let my little 5 year old out into their dangerous yard- especially to take pictures. But I wanted to ask anyway.

So, one day on the way home from the hospital we stopped at the recycling place. I didn't even know the name of the company, or that they had an official office. I just walked into the garage, and started saying "hello". Pretty soon a guy named Howard came out and asked if he could help me. I told him that I wanted to take pictures in their yard, and he said "we don't do that". I figured as much. I then pulled the whole "my kid has cancer" card, and his attitude immediately changed. He sent me to the main office, to talk to Lee- the Safety Supervisor/ HR Director.

Lee was incredible. He was understanding and compassionate, and he said that they would LOVE to have Jackson come for a visit, and they would give him a tour. Never in a million years would I expect the type of treatment that we got.

Two days after I asked we showed up a little later than our scheduled time, but they didn't care. The girl at the front desk greeted Jackson with a smile. She said "I've heard all about you!" She took us back and Lee met Jackson with a bright red manager's hard hat- customized with his name and everything. Then Lee took us back to Dan's office. Dan is the VP of Operations. Dan was genuine and kind, and happy to meet Jackson. They had a big pouch of treasures for Jackson and he gave Jackson a toy of one of the machines that Jackson was going to get to see later that day.

We all put on our hard hats, and we followed Dan and Lee out into the production yard. Over the next 2 hours we went on the most amazing tour. We met some amazing people, all of whom were fabulous with Jackson. They treated him like a king. Jackson got to ride in two different machines- one even had a claw on it like in the Toy Story 3 movie. We went to another location where they had lots and lots of the big steel balls (I found out later that they are called grinding balls). And Jackson got to have a ride on a train car puller as well as work another big machine that lifted the balls up with a huge magnet.

My good friend Mindy came with us to take some pictures of Jackson. I haven't seen any official pictures yet, but I got to peek at Mindy's camera on our way home and the tiny images brought tears to my eyes.

Dan and Lee were so kind. I find myself being overwhelmed with gratitude. It would have been so easy for them to turn us away. It would have been so easy to tell us 'no', but they didn't. They went way above and beyond for Jackson. They gave him VIP access to everything. They made him feel special. I mentioned to Brian when we were driving home that it felt like a Make-A-Wish sort of event.

The pictures of Jackson with his Beads of Courage, his central line, and his bald head will be pictures that I will cherish forever. They will be something that we can look back upon one day, and remember the trials, the difficulties, the stress and the strain that we all endured. They will remind me that through trials we can become stronger.

Adversity is the refiner’s fire that bends iron but tempers steel. It is in the fire of struggle and stress that greatness is forged. A measure of your greatness as men and women will be your response to adversity, the courage you have as you wrestle with problems that can strengthen your nerves and sharpen your skill.

~Alexander B. Morrison. “The Challenge: Basing Your Career on Principles.” Life in the Law, 2004, 99.

Buying some stock.

2011-08-30T18:47:00.000-06:00

Jackson's taste buds have changed a lot through out chemo. After round 1 he only wanted chips and salsa, but after round 2 he only wants Velveeta Shells & Cheese. Breakfast, lunch and dinner, he will eat it.

He loves it, and he calls it "cheeseandshells" and he makes it into one word, all smooshed together, and I don't think he even separates his teeth when he says it. We are going through LOTS of Velveeta shells & cheese. Enough that I am thinking of buying some stock in Kraft so that we can get a return on our investment.

Kindergarten or Bust

2011-08-29T20:53:00.003-06:00

Today was a BIG day for Jackson. Today he went to the first day of kindergarten. He was so excited, and said that he would help any of the kids that were sad and he would help them find a friend.

I didn't cry. I thought I would. I was extremely proud of my bald headed little guy. He lined up with the other kids, waved goodbye and went right into the class. He was confident, and not at all afraid that he looks different because he doesn't have hair.

If everything goes as well as we hope, he will get to go to about 60% of this school year.

I get to go to his class tomorrow and talk to the kids about Jackson and how he has cancer. I am not really sure what I will say, but I'll get to talk about the monkey that will sit in Jackson's chair when he's not there. It's a wonderful program that we learned about at the hospital through the child life specialist. You can read more about it here. Jackson LOVES his monkey- it came in the mail today (perfect timing). Jackson decided to name his monkey "Charlie".

Radiation Mask

2011-08-26T21:39:00.005-06:00

Today we went to meet the radiation therapist. He is a pediatric- neurologist- oncologist- radiation therapist. Basically he specializes in irradiation of brain tumors in children. He is a very smart man.

After the appointment I am a little less freaked out about radiation, but also more freaked out- if that is even possible. I feel more comfortable with the machine and the process. I feel confident that this step in Jackson's process will be very effective in shrinking the tumor. The part that I am more freaked out about is the long term effects that the irradiation will have on Jackson. Because his tumor is right next to his pituitary gland there is a great chance that he will have problems with his growth hormones- but we won't know about those problems for years to come. His hearing may also be effected greatly from all of the radiation. Among those side effects, there are also possibilities of learning delays and challenges for Jackson's cognitive thought processes.

During our appointment we met with the doctor, then we went through what they call "simulation". They took us back to a CT scanner and planned to make a mask for Jackson that he will wear during all of his radiation treatments. He is scheduled to go through 30 separate treatments during the next 6 weeks. While he gets the radiation he has to lay perfectly still, with out moving even a millimeter while they point the powerful x-ray machine at his head. To insure that he can hold his head perfectly still, Jackson will wear a mask that is custom made for him. The mask is then bolted to the table.

The process of making the mask was fascinating to me. Jackson was so very nervous about the entire thing, and after lots of tears the amazing staff decided that they should make a mask of Brian so that Jackson would know better what to expect, and so that it wouldn't be so scary.

Brian laid on the table, and Jackson helped Tarali get the mask ready. The mask was a flat sheet of plastic that is heated up in a pan of hot water. The hot water makes the mask pliable, and then the mask was stretched over Brian's face.

Brian didn't mind the whole thing, but poor Jackson just cried through the whole process. He said at one point "this is the worst day of my life" and "I am done. I want out of here." He also said that he couldn't breathe. The entire process took about 5 minutes, and to be honest, it was pretty sad to see my boy strapped to a table, miserable and I couldn't be of any help or comfort to him.

After it was all over, things were happy again though, because Jackson and Brian were now "mask buddies".

Jackson is pretty excited to go back, but only because one of the doctors (Dr. Watson whom we've never met) is quite the artist, and he paints the masks for the kids who have to undergo radiation. Jackson said that he wants his mask to look like Finn McMissile from Pixar's Cars 2 movie. I am pretty excited to see what Dr. Watson comes up with.

After the drama of making the mask we got to go and see a room very similar to the one that Jackson will go into while he gets his radiation done. The people the hospital were amazing with Jackson. They let him play with all of the buttons, and move all of the equipment around. He got to go on a ride on the machine, and all of the exploration makes me think that he will do great during his radiation treatments.

If he can't hold still for the radiation, they will have to sedate Jackson every single day. I really hope he can handle it, I don't want to have to put him through that every day. Also, if they have to sedate him everyday our appointment time will change from 15 minutes everyday to around 1 hour everyday.

Jackson has a "dry run" scheduled for next week, and if he can do the "dry run" with out sedation then they will proceed, but if he can't hold 100% still, then we will have to change hospitals, and appointment times. Radiation treatments are scheduled to start on Tuesday, September 6th.

Home Sweet Home

2011-08-23T09:37:00.002-06:00

We were able to come home this time surprisingly fast! After the apheresis on Thursday was so successful our hopes got up pretty fast that we might get to come home on Friday. There were only 2 things that we thought would keep us from coming home. The first one was an MRI that wasn't scheduled yet, and the other one was the fact that Jackson was still on TPN (supplemental feeding).

The MRI got scheduled for Friday afternoon between 12 and 1 but we actually ended up down in imaging around 2:00. The doctor also said that he thought that Jackson's appetite should improve now that his counts came back up, and he said that we could go home with out the TPN.

The MRI went good. I am always amazed that Jackson can lay so still for so long inside that MRI machine. This MRI lasted an hour and a half, and Jackson did so great. He had to hurry out of the machine at the end to go to the bathroom, but other than that he did great.

We don't have the official results of the MRI yet, but we got a very brief report from another oncologist who said that the tumor looks minimally smaller, and that the most important part is that the tumor is "stable". To be honest, I was hoping that the tumor was gone- or almost gone so the fact that it is only minimally smaller is a bit discouraging to me. I am trying to remain positive though, and I am grateful that the tumor isn't growing at this time.

We came home Friday and Jackson hasn't stopped having fun since. He has so much more energy this time than he had after round 1. He has been playing with friends, and his toys that he has forgotten about. He loves playing with his little sister, and he makes her giggle all of the time. He has even been eating very well. Most things don't taste the way that they should, but he is managing to eat enough that I'm not too worried about him.

We went to Sacrament meeting on Sunday. We wanted to be on time so that we could get a bench at the very front so that the germs would hopefully be minimal. My heart just swelled with pride walking into the chapel holding Jackson's hand. I wanted to shout to the congregation how proud I was of my little cancer fighter. But at the same time I wanted to protect him.

Being home has been incredible. I can't believe we get to enjoy almost 7 weeks here together. During the time we get to be home Jackson will start kindergarten- they are actually going to let him go as long as he feels good enough and his counts are up! Jackson will also start his radiation treatments. Radiation makes me a bit nervous because I don't know what to expect. I have heard stories of what the side effects could be, but everyone responds differently so we'll just have to wait and see how Jackson does.

We have an appointment tomorrow with the oncologist who will help us decide if the treatment path we are on is still best for Jackson. Tomorrow we also get to go to the eye doctor to make sure Jackson's vision is as good as it can be. Friday we meet with the radiation doctor for a consultation for our treatments that start next week.

I am sure I'll blog less while we are at home, but I'm trying still for 2 times a week. Thank you all for caring about Jackson. It means so much to us to have your support.

Apheresis Success!

2011-08-19T00:13:00.003-06:00

The apheresis went amazingly well today. The goal was to collect 15 million cells over a period of 5 days. If Jackson collected more than that they could stop before the 5 day mark.

Every day the nurse would draw blood and the lab would run a CD34 test to predict when Jacksons blood counts would come up. I was skeptical that they would be able to tell before hand, and honestly I was worried that we would miss our window. Turns out those Bone Marrow doctors really do know what they are talking about.

This morning they took Jackson down to the Procedures Lab to place a catheter in his left leg. Instead of riding in his bed to the surgery like most kid, the nurse and the tech pushed an empty bed through the halls and Jackson followed behind driving his remote control car.

Today between 12:15 and 6:30pm Jackson was hooked up to an apheresis machine. During this time the machine cycled through his blood six times. The machine separated his red blood cells from his platelets and his white blood cells. The white blood cells were collected in a bag and after the collection was done we waited patiently for the lab to count how many cells they were able to harvest.

Jackson blew his goal of 15 million out of the water!! They collected 33.8 MILLION cells today. More than double of what they were hoping for. They actually wanted 15 million cells per kilo- so a total of 270 million. The total they actually got was 608,400 million. That's a lot of cells in one tiny little bag.

My prayers were answered. Your prayers were answered.

The catheter came out tonight which was a bit traumatic. This has been a long, emotional day. But it has a happy ending.

As long as Jackson starts eating again we should get to go home tomorrow. Our family will be back together again soon.

The next thing I am starting to worry about is the upcoming MRI Jackson has. Through that scan we will see how well his cancer is responding to the chemo drugs.
One step at a time. We can make it through this- one step at a time.

Apheresis

2011-08-18T14:53:00.001-06:00

Apheresis (stem cell rescue) is in process. I am learning SO much!!

I have some better pictures that I will post later.

Our apheresis supervisor (Amber) thinks we may be able to get all of the white blood cells we need today over the 5 1/2 hour treatment. We should know tonight around 8:00 how many cells they were able to rescue. Our ideal number is 15 million.

So far, so good.

Movin on up

2011-08-17T22:49:00.002-06:00

Jackson's white blood count (WBC) went up today! Yesterday he was at .2 and today he was at .7. That means that his ANC isn't far behind.

Tomorrow morning the doctors are taking Jackson down for surgery to place a new apheresis catheter in his leg. The catheter will only be in for a little while (up to 5 days) while they collect Jackson's stem cells. Basically it will be like when you donate platelets- they hook you up to a machine and suck the blood out of you. Then they spin the blood, and keep the part that they want and put the rest of the blood back into your body. This process is called "apheresis". They will be doing this to Jackson to try and harvest 15 million white blood cells from Jackson to freeze and use later during his Bone Marrow Transplant.

His catheter will be similar to this, but since he is so young/small they are putting his catheter in his leg and using his femoral artery.

Jackson will be going through 3 rounds of Bone Marrow Transplant (BMT) after his 6 weeks of radiation therapy. During the BMT he will get chemotherapy that will kill off all of his bone marrow, then because it will be all gone, they will give him new marrow back. There are two types of BMT- one that uses a third party donor, and one that uses your own cells. Jackson will be getting the one that uses his own cells. This will help his own blood counts come up faster and he will also avoid the rejection that often happens with traditional BMT. Because he is getting his own marrow back, they have to do the apheresis now to harvest his stem cells.

I know- it's confusing. I don't know if what I typed makes any sense at all, but I'd be happy to explain it to any of you if you corner me and ask me about it.

Tonight I'm asking any/all of you to pray for Jackson to do well during the line placement- he'll be awake for the entire thing and I think he may panic a bit. I am also asking you to include a prayer for his little body to produce LOTS of white blood cells so that he doesn't have to have the apheresis catheter in for more than one day.

As soon as they get 15 million white blood cells we get to come HOME! Hooray! I can't wait to have my entire family back under one roof again.

ANC= 0

2011-08-16T22:04:00.005-06:00

Jackson's counts are still at zero. We don't know why they are taking so long to come back up, but we are trying to wait as patiently as possible. I won't lie, it has been a bit rough at times. Sunday in particular was my least favorite day. Sunday Jackson was down right mean. I know that his morale has been down the last several days- he has been stuck in his same room for 12 days now. They won't let him leave his room while his counts are at zero. So, unfortunately he was mean on Sunday, but his attitude has rebounded, and he is back to his happy self most of the time now.

Looking back on this someday, I am sure I will read some entries and cry. I already go back and read about some days and cry. I also want to look back one day and see some of the good. Today we had a good day overall. And although Jackson's counts are down, we got to get out of the room for a little while.

We went this morning down to the Audiology office to get Jackson's hearing tested. He did so great during the test and it was nice to go for a walk. The bad news about his hearing test is that the chemotherapy is starting to damage Jackson's hearing. So far the damage is very minimal, but his ability to hear the upper range of notes has changed, and chances are that the damage is permanent. One day Jackson may need hearing aids- but there are worse things in life.

Today Jackson had Elliot and Joe visit again. Elliot is Jackson's favorite therapy dog, and Jackson just loves snuggling with Elliot on the bed. Joe is Elliot's owner, and we really like Joe too. Joe seems to genuinely care about Jackson, which makes me LOVE Joe. I have a soft spot in my heart for anyone who loves my kids.

This afternoon Jackson smiled and laughed more than I have heard in a long time. Erika was our nurse today, and she was so much fun. We did puzzles, and had a little dance party. Then Jackson decided that we should squirt Erika with a syringe full of water. So, we filled up the syringe, and pushed the nurse call button. As soon as she waked in, Jackson ambushed her. It was so funny! Jackson LOVED it! After he got Erika, Jackson decided that it was so much fun that he wanted to squirt more people, so we went out to recruit some nurses, techs and even doctors to squirt.

After Erika got soaked, Jackson squirted Sara. Check out her wet scrub top.

Sara wanted to help Jackson get Dr. Fluchel, but she had to go help another patient, so she called in Lindsey to help in the ambush.

Then Lindsey teamed up with Jackson and they got Dr. Fluchel (one of Jackson's Oncologists).

Through out the afternoon Jackson squirted: Kathleen, Breck, Nancy, Sara, Erika, Dr. Fluchel, Dr. Jack, and Laura. I loved seeing his smile, and hearing his naughty little giggle. Everyone was so nice and reacted so great. The staff at PCMC is really incredible.

Soaking Sara:

Soaking Dr. Jack:

One of the nurses said once that the Oncology unit is a depressing place to be. I would argue that I disagree. I am sure that there are days that are hard, but there are days like today that make the hard days more bearable.

** I REALLY think his counts will be up tomorrow. Keep your fingers crossed!**

Zero. Zilch. Nada. Nothing.

2011-08-13T23:35:00.005-06:00

Yep. Jackson is still at zero for his ANC. Nine days, it's far longer than anyone guessed. Because his counts still aren't coming up, the bone marrow transplant team has moved Jackson to the "hard to immobilize protocol".

This new protocol basically involves giving Jackson a new type of drug that should help his body grow white blood cells faster. He will get two doses of one drug two times a day through his IV. He will also get another drug at night via a shot (Jackson HATES pokes!).

Today he got two shots in his legs. Did I mention that he hates the pokes? He earns a yellow bead for each intramuscular injection so that makes it seem almost worth it. The medicine that he gets for the blood cell growth will cause incredible bone pain, and I'm sure it will be a long night. The nurses said that the bone pain is a lot like growing pains that kids sometimes feel when they go through growth spurts- only worse.

So, you want more of a Jackson update other than just his ANC? Here's a little break down.

Jackson has been stuck in his room for 9 days, but one of the doctors said that after visiting hours are over, and when the halls are quiet that Jackson can go out of his room and ride the bike (as long as he wears a mask). Jackson LOVES this, and has enjoyed getting out of the room even for a few moments.
Jackson has a little friend that has been in the ICS unit also this week. Annabelle is 4 and she is fighting Ewings Sarcoma- I think. She is doing amazing in her treatments, and has seen lots of progress already. We LOVE seeing Annabelle and her mom Sally in the halls. Everytime we talk about Annabelle, Jackson just lights up. Annabelle has also been riding the bike lots this week, and every time she rides past our room Jackson gets excited to see her. She even brought Jackson a picture today and a balloon yesterday. I love that we have friends up there.
We move Jackson's furniture in his room almost every day. We race remote control cars, and build jumps for them to go off.
Yesterday we made a hopscotch on the floor out of medical tape. Jackson loves it, and I like that it gets him out of bed. Jackson also likes that the nurses, techs and even some of the doctors take a moment to do the hopscotch. It is very popular.

Jackson and I made some t-shirts the last few days using the freezer stencil tutorial by iammommahearmeroar.blogspot.com. All of the nurses LOVE that too.
Jackson has had a couple of therapy dogs come and visit. I am surprised at how excited he gets when they come in our room. His favorite dog is Elliot. You can find Elliot on Facebook- his name is "Elliot TherapyDog".

Hopefully that's enough of an update for now. I'm working on an upcoming post of some of my favorite things in the ICS unit. There are some very wonderful things there!

Still at Zero

2011-08-11T11:36:00.002-06:00

Seriously? How long is this kid gonna stay at zero? Today is the 7th day at zero. Some kids stay at zero for 20+ days, but Jackson gets a shot of Neupogen every day that is supposed to help his counts come up faster. Poor kid HATES that shot- he screams uncontrollably every time. I am getting so anxious for his counts to come up because then we can get his stem cells collected, and then we'll be on our way home.

Man oh man. Pray for Jackson to grow some white blood cells!

Dreamin'

2011-08-10T23:26:00.001-06:00

This is the bed that Brian and I take turns sleeping in every other night. It is a chair that pulls out, and it isn't that bad as long as you have at least 3 pillows.

Layhe Service

2011-08-07T22:23:00.003-06:00

Jackson got moved to the Layhe service today because he keeps having fevers. They did blood cultures, but nothing has grown yet, so they don't know why he is having the fevers. But they are treating him with 2 different antibiotics to help with any infections he may have.

I went to the hospital tonight and brought dinner -I actually got to cook it after church! How nice it was to be able to cook!

When I got the the hospital I was shocked to see all of the furniture in Jackson's room moved around. Brian had the bed pushed up against the wall and his rocking chair was in the bathroom. They had to move the furniture to make room for the remote control car jumps.

I know this isn't a great picture, because it's from my phone, but you get the idea.

Even though Jackson's counts are at zero, and he is having fevers he was in really high spirits today. He loves racing the cars with his Daddy and it seemed that they had a pretty calm day. Most of his stomach pain is gone now which is a relief for all of us. He seemed to have more energy today but still took a long nap after he got his platelet transfusion.

Later this week the doctors expect his counts to start coming back up. At that time we will get started on the Stem Cell Rescue which will be used later on in Jackson's treatment during his Bone Marrow Transplant rounds of chemo (he'll go through these 3 times). I will explain more about Stem Cell Rescue and Jackson's Bone Marrow Transplant in a future post.

Usually when the ANC goes up, fevers go away, mouth sores go away, and the body has the ability to heal and fight infections. Now it's just a waiting game.

At the bottom

2011-08-06T10:24:00.001-06:00

Jacksons counts hit zero yesterday (his ANC). This is expected but we don't like it. Zero means his little body has no ability to fight infection. That means we want to limit visitors now to help protect Jackson as much as possible.

Yesterday his counts hit zero and he has already spiked a fever and is already on antibiotics.

He is starting to have stomach pain and mouth sores again and has pretty much refused to eat anything the last 3 or 4 days. Because he isn't eating they put him on the TPN (all his nutrition goes in through his central line now). When he does eat he has been throwing it up and feels very nauseous.

We are still on the regular chemo service and hope to stay there. When kids start having complications they upgrade them to the "Layhe" service- which means that the doctors check on him several times a day.

Today is day number 12. We are right in the middle of round 2. This is where it gets tough for me. I start missing 'normal' about now. I start worrying more about Jackson getting infections and having complications. Jackson starts feeling worse and because of that he starts getting demanding and irritable.

The feeling of missing 'normal' has been increased the last couple of days. I was supposed to finish registering Jackson for kindergarten but he won't be going to kindergarten. I never thought I would be the mom that cries on the first day of kindergarten. I have been excited for him to have that experience and to make new friends. But now I am pretty sure I will be crying on the first day of school- but only because my boy doesn't have that opportunity yet. Stupid cancer.

WONDERFUL NEWS!

2011-08-04T21:18:00.003-06:00

We have been waiting for over 7 weeks for the some of Jackson's test results. AT/RT is a highly malignant cancer which can be genetically linked. That means that every one of our kids could carry the gene, and could be at a higher risk of getting the same cancer that Jackson is fighting.

The blood test had to be sent to Philadelphia and because it is genetic testing, it takes a LONG time.

7 weeks later and we got the news today that Jackson does not have the genetic marker. That means that it is NOT GENETIC! YAHOO! I cried when the Doctor told me the news today. It was such a relief to know that I can stop looking at my 22 month daughter and wondering if she is growing a tumor insider her little brain. What a blessing. This is a HUGE relief for Brian and I.

I can breathe a little easier tonight.

I wonder how much genetic testing costs? I guess we'll find out and maybe I'll post it here, just in case anyone else is wondering. I'm sure it will be another 7 weeks until we get the bill.

Last day of freedom

2011-08-02T23:54:00.003-06:00

Today was probably Jackson's last day of freedom for a while. His ANC (or neutrophil count) is on it's way down and once it drops below 500 they don't let him out of his room anymore.

We took advantage of the freedom today and Jackson rode the bike around the hospital. Man he can ride fast!

We also ran into Jacksons little friend Jessica on our bike ride. She is one of my heroes for sure. She has been through so much in her short 5 years. We met Jessica and her mom during our first stay at the hospital and seeing them again tonight was a wonderful surprise. Jessica has been battling kidney cancer for a while she has been on a tough road but she is almost done with her treatments. I already love her mom, Chandra- what an amazing woman.

**On a side note-
Today is also mine and Brian's wedding anniversary. I fall more in love with him everyday. Thanks to Becky and Jill for taking care of our babies so that we could go out to dinner tonight- you guys are the best!!

Hungry Boy

2011-08-01T21:42:00.004-06:00

The difference from this hospital stay compared to the last hospital stay has been night and day. Last time Jackson was sick, and tired and weak. He ate very seldom and when he did eat, he would eat a few bites then throw it all up. This time around has been almost the exact opposite. Jackson has been eating non-stop and he is eating strange combinations of things. One morning for breakfast he had a cheese quesadilla and a Butterfinger milkshake. He ordered chicken nuggets and mashed potatoes with gravy with another main course of chicken stir-fry. He has had a big dill pickle with a side of chips and salsa. He loves the Butterfinger milkshakes. And for days pretty much the only thing he would eat was chips and salsa- now it makes sense to us. The chemo drugs destroy your taste buds so nothing tastes good but the salsa had such a strong flavor that he could actually taste it so that's why he loved it so much.

The hospital has room service and Jackson can order pretty much anything that his little heart desires. One morning I took a picture of his breakfast. I thought it was funny to see a tray full of food for one little guy. If you look closely you can see Frosted Flakes, a cupcake, pancakes with bacon, and a Butterfinger milkshake. He ate almost everything except for the bacon and the milkshake.

Last night he had a taco for dinner. When it came up from the kitchen, he smelled it and immediately started dry heaving. So, I moved it away from him. I asked him if I could eat it since I didn't get dinner, and he said "sure". I took one bite and said that it was good. He asked if he could try it. he tasted it and LOVED it. He ate the whole thing and asked me to order up 2 more. That wasn't the first time that he's gagged at something then ate a ton of it a few minutes later. He also gags at the smell of corn dogs, but then eats them right up.

His chemo appetite is something that takes some getting used to for sure. I wonder what will happen when we come home and go back to my regular rule of "take it or leave it".

Because he is eating he has had more energy, and another piece of good news that goes along with eating is that he is no longer loosing weight. He actually has gained a little bit this round and is back to his original pre-treatment weight.

** On a side note- overall this round has been wonderful but today was eventful because it was the first time this round that he has thrown up. The chemo drug that he got last night (CisPlatin) is supposedly famous to cause nausea- and boy oh boy the nausea has been bad all day today even with the use of multiple anti-nausea drugs. Hopefully by this time tomorrow night the nausea will have passed.

Even with the nausea and the vomiting, Jackson has been in very good spirits and has been to the playroom and ate dinner outside tonight. I love it when he feels good, it makes me think "we can do this!".

New Nickname

2011-07-29T00:10:00.001-06:00

Brian came up with a new nickname for Jackson today. He calls Jackson "chemo-sabe". In The Lone Ranger it was used and meant 'faithful friend'. But in The Lone Ranger they spelled it kemosabe.

Chemo-sabe. Ha! Get it? Chemo? Ha!! I laugh at Brian's cleverness. Even after all this time he can still make me laugh.

Jackson loves the new nickname. He likes being his Daddy's faithful friend and sidekick.

Pollyanna

2011-07-27T22:04:00.007-06:00

Today was a good day as far as Jackson and how he was feeling. He isn't confined to his room, so we took a walk this morning down to the security department to get a name tag made up for him. He is so proud of his name tag, it says:

Jackson

Cancer Fighter!

Jackson still had lots of energy, and because of the anti-nausea medications that he is on continually he has been feeling pretty good still.

Today was emotionally exhausting for me, but not necessarily from hospital stuff. Today was the funeral of my Opa (my Dad's father) and I wanted to go, but I needed Brian to be by my side. Our wonderful friend came up to the hospital and sat with Jackson while we went to the graveside services. It may not have been a big deal to her, but knowing that my son is being watched over by someone who loves him made it a little easier to leave him. He doesn't ever want to be alone, and for him to be okay with both Brian and I leaving was a HUGE deal. I never worried about Jackson while I was gone. I knew that Jill would take great care of him- how did I get so lucky to have such a great friend?

When we got back from the funeral we had Jackson get up and out of his bed and go out to the play area. We are trying really hard to keep him up and moving this round of chemo so that his muscles don't get so weak. We played a flying monkey game with Brian's dad, and then on the way back to the room we learned that Jackson can just stand on the IV pole and go for a ride.

I feel like every time I blog I get all mushy and talk about how lucky we are. Sometimes I wonder if I am too "Pollyanna" about everything. I know if I look at our situation I can either drown myself in self pity and anger or I can look at the big picture and know that I do not understand everything. I will never understand everything, but I can choose to look for the good in every situation. I learned this perspective from my parents and I hope to be able to teach it to my children. When you look for the good, you will surely find it.

Even though our situation is not ideal- our son is going through chemotherapy for a highly malignant brain tumor and my Grandfather's funeral was today- I can still look for the good. I can still find lots of good to celebrate. Today we celebrate that Opa lived a full life and that he is in heaven with his sweetheart. Today we celebrate that Jackson was feeling good. Today we celebrate that so far the chemotherapy side effects have been minimal. Today we celebrate in family and friends. Today we celebrate life and the time we get to share together.

See... I told ya, I get all mushy and "Pollyanna-ish".

Meh. Take it or leave it. But honestly it was good day although emotionally exhausting.

Round 2 Begins

2011-07-26T23:10:00.005-06:00

Today we started round 2 of Jacksons chemotherapy. He has already gotten one drug and another is being administered as I type (it takes 4 hours to get all of it into his system). Tonight will be a long night of waking every two hours to make Jack go pee. The big chemo that he is getting tonight is called Methotrexate- it is the Big Nasty Drug. Because we have had it before we know that it causes Jackson horrible mouth sores, and lots of vomiting. He also got another drug tonight that we know causes bone pain and stomach issues.

Here the nurses are checking to make sure they are giving Jackson the right chemo.

Even knowing what we are facing I am still filled with hope.

Today was such a great day. We went to the zoo and then we were so lucky to be invited to go to the U of U hospital and have a tour of the AirMed helicopter. We felt so spoiled and got first class treatment by Jared (the air-medic).

Today at the hospital was also probably my favorite day so far. Jackson and I laughed and played a memory game (at first I thought I would let him win, but pretty soon I found I had to really struggle to keep up- that kid has an AMAZING memory!!). We made a lady bug out of beads and boondoggle. I really enjoyed just being with him today. I enjoyed seeing him have energy and walk to the bathroom with out wobbling. I have enjoyed watching him light up as he told the nurses about seeing the AirMed helicopter. I know it isn't going to be long until he doesn't feel good again, so I am glad we got to enjoy today together.

I rode up in the elevator tonight with 3 other parents. I know that they are parents because of the type of name tags they wore. I was happy. I was smiling as I entered the elevator, excited to come play more games with my son. I took only a moment to watch the others as we rode together up to the 4th floor. I could see the woman in the pink dress, she was very well put together but I could see the stress she carried in her shoulders. I could see the worry she was feeling in the way she clenched her teeth. I couldn't help but notice the way she clutched her purse with white knuckles. Then I looked at the man next to her- I can only assume he is her husband. He was visibly exhausted. He stood there rubbing his eyes and rumpling his hair. Neither one of them made eye contact with anyone else in the elevator. I never heard them utter a word- but I didn't need to, just watching them I could tell that they are dealing with something big.

The other man in the elevator wore a wrinkled blue t-shirt. And he seemed to be in a big hurry. To be honest I didn't pay much attention to him because I couldn't stop looking at the woman. I could feel her pain. Perhaps as another mother I felt more compassion for her. But then again maybe I just felt more compassion because I could sense her anguish.

The elevator ride only lasted a matter of a few seconds but as I left the elevator I felt my mood change. I had tears in my eyes for those people. We are all in different situations but we are all at the children's hospital tonight cheering for our little ones. We all worry. We all love. We all feel alone at some point. We are all trusting strangers to take care of our babies.

Jackson is asleep now. He is on heavy medications to help control the nausea. He is my hero. He is doing things that amaze me. He is so strong and resilient.

There is a wonderful video that the American Childhood Cancer Association came out with called "Paul and the Dragon". It is a movie about a little boy that has cancer but imagines the cancer to be a big scary dragon. Jackson loves the movie and I think it has helped him understand better what is going on inside him with the chemo drugs, and the hair loss. Tonight I was drawing a picture of him fighting the cancer dragon on his board and he told me that his cancer dragon is already smaller- that he is already beating the cancer and that he is winning this fight. I believe him. I have to believe him. He is so strong. He is a fighter. He is my hero.

Follow the Yellow Brick Road

2011-07-22T09:51:00.002-06:00

Home. There's no place like home. What a true statement.

I was thinking about Dorothy and the Wizard of Oz last night as I was falling asleep. Here she was in a new, and scary place and she has to fight to find her way back home. She follows the yellow brick road which is hard at times, but along the way she meets new friends and they make her trip bearable. I feel so much like Dorothy. We're on a new path and at times it is scary, but already along our way we have been meeting new friends that have encouraged us. The Emerald City that we are trying to get to is the "Cancer Free" stage. Remission. Maintenance.

Right now the yellow brick road seems very long, and still it is a bit scary.

We've been home now going on 4 days. It is amazing how much peace and joy we find in our home.

Tuesday night when we came home Jackson immediately wanted to play with his Lightning McQueen race track. Brian set it up downstairs, then came to talk to me while I cooked dinner. While we were upstairs, we could hear Jackson yelling at Hailey "No Hai- DON'T TOUCH THAT!" I looked at Brian when I heard the yelling downstairs and I said that it was like music to my ears- he promptly agreed. Then we laughed, because what kind of parents are we that we enjoy hearing our kids fighting?!

Our time at home so far has been pretty low key. We stay at home most of the time, but every night we have gone for a walk around the neighborhood, and we've been on some bike rides (Jackson and Hailey in the bike trailer). Yesterday we went and saw Cars 2 again and Jackson was in heaven.

Energy and health wise it has been different than I expected. Jackson gets tired very easy. The first day home he got home from the bike ride in the trailer and he was exhausted- he took a nap most of the remainder of the day. He even fell asleep on our evening wagon ride. Eating has been a struggle for Jackson too. Nothing sounds good, but usually when something does sound good it doesn't taste good. Very often when he does eat he ends up throwing up everything. He is getting so skinny and I worry about that more than I share.

Each day he seems to have a little bit more energy. This morning he actually rode his bike to our neighbors house next door and then back. He may have over done it a little bit, but it sure did my heart good to see him on his bike.

Here we are, on the yellow brick road. We are finding fields of poppies, and also scary forests. Together we'll walk hand in hand and we'll see where this road takes us. But for now, we are enjoying our break from the road and relishing in being home.

Good days are here again!

2011-07-18T22:02:00.003-06:00

The last few days have been wonderful! Jackson has been fever free, his ANC is coming up (the important blood count number) and he is starting to feel better.

He has been laughing and smiling today, and it feels like my little guy has recovered mostly from the chemo- and the other nasty infections that the chemo caused.

Jackson has felt well enough the last few days that we have been busy doing crafts and he has even been out of bed a few times. He still can't leave his room due to the C-Diff infection that he is fighting, but the fact that he is willing to get out of bed makes me so happy.

Today we had a little buddy move into the room next to us. I had met Skyler's mom before, and I told Jackson that there was a little boy his same age moving in next to us. Jackson wanted to get out of bed and wave to Skyler through the window. Jackson stood by the window for a few minutes watching for Skyler but we then realized that we took too long to get out of bed, and that Skyler was already in his room. I guess we'll have to wait another day to meet Skyler.

Even though we didn't get to wave at Skyler, I thought this picture was so cute. It reminds me how tiny he really is- yet he was so happy that he was tall enough to see out the window.

Jackson's pain is under better control now. In fact if Jackson can start eating, and get his pain under control we may be able to come home later this week (I hope I didn't just jinx us).

Hooray for good days and happy children!

One Month Ago

2011-07-17T20:29:00.003-06:00

Exactly one month ago we sat in the Neuro-surgery exam room and we got Jackson's diagnosis. One month ago Brian and I held each other in that tiny exam room and we cried together. One month ago our family took our first step down this path of cancer.

Tonight as I sit in the hospital room I have many emotions. Tonight as I sit here, I am less overwhelmed with some things, yet more overwhelmed with others.

Over the last month so much has changed, but surprisingly so much is still the same. Our life has changed, but those in our lives that make it worth living are still here supporting us.

I have more knowledge about certain chemotherapy drugs now, because I have seen them in action. I have more medical knowledge about cancer treatments, drugs, and procedures. I know more about blood than I ever did before. I can almost read the results of a CBC now with out help; and I know the important numbers without help. I have met many nurses and doctors, and I have come to love some of them and I am still learning to love others.

Our lives are different now than they have ever been. Our living arrangements are a bit confusing now- where exactly do we live? Most of the time I don't know what day it is; I am surprised how quickly time flies at the hospital.

Home is something that I used to take for granted. Home. I can not wait until my entire family can sleep under the same roof again. I long for the days when we will once again get to eat dinner at 6:30 around the kitchen table. I am looking forward to being able to perform mundane tasks for my family once again- laundry, dishes, cooking, cleaning. I am excited to kiss both of my children good night and tuck them both into their beds and be under the same roof. Being together is something that I hope to never take for granted again.

Over the last month our lives have changed. Obviously. But the part that amazes me the most about the last month is the amount of love we feel from every direction. People coming to visit Jackson at the hospital. People reaching out and giving gifts to brighten Jackson's day. Meals brought in several nights a week. Kind emails and text messages often make me cry. Our yard has never looked so good- and we haven't lifted a finger. Talks of fund raising dinners and 5K's and Luau's. People ordering shirts, hats and bracelets all saying "Go Team Jackson". All of it amazes us. We are grateful for all of it, and yet there are no words gracious enough to express our heartfelt thanks.

I have learned over the last month that I am stronger than I thought I was. Over the last month the pride I have for my son has grown so much that it is now immeasurable. Over the last month the love and admiration that I have for my husband, Brian has increased beyond my imagination. And over the last month I have seen my daughter adapt from a very structured life to a very chaotic life, and yet she is still flourishing beautifully.

Over the last month my testimony of charity has grown so big that it is bursting at the seams. I have heard my entire life about charity being the "pure love of Christ". I never understood charity until now.

The last month has changed me, and although it has been insanely difficult, I believe that this change has been for the good. I am stronger because of the trials that we are going through. I am so grateful that I have a firm foundation to stand on.

It all seems so long ago, yet it is all so fresh in my mind. One month has passed and we are still spinning, but somehow we are making it. And somehow we are managing to find joy in our journey.

Middle of the night e-mails

2011-07-16T11:01:00.002-06:00

Every other night Brian and I switch shifts at the hospital. One night we spend at the hospital and the next night we get a good nights rest at home with Hailey. This has been working very well- although it has been hard to be apart. During the night things at the hospital are still pretty eventful, and rather than sending texts or calling we send emails to each other... that way the one of us at home can still sleep well, but get the quickest update as soon as we wake up.

The other night when I was at the hospital this is the email I sent to Brian. I sent it at 4:38AM. I think it's kind of funny now, what chaos in the middle of the night!

Man I am getting one one funky sleep schedule. Woke up at 3:40 all by myself then jack woke up at almost 4:00 on the dot. He has to pee.

Hurry mama.

Stand him up and just getting gloves on when he says no, now he has to poo and BAD.

Keep putting gloves on, grab the nose tube syringes and plug that up.

Jack is whining and saying that he can't hold it that he is going to have an accident.

Panic sets in Huge now. Push the nurse call button.

Get the tubes untangled from the nurse call button. Undo his toe pulse ox monitor which is hard because it is dark and I am wearing gloves.

Pick him up and realize I forgot to unplug the IV pole. It is plugged in into two different plugs but didn't notice the low one so I just start pulling the tower into the bathroom.

He is screaming that i am hurting his leg which is probably true because of all of the injection sites from the Neupogen.

Fight the whole way to the bathroom against the cord that is still plugged into the wall.

Finally get his unders pulled down which is difficult because he is all sweaty and I am wearing gloves.

Make it just in time without an accident. Oh no, then he needs the puke bucket.

Hurry as fast as I can into the other room to grab the puke bucket and have to get back and hold the tube in his nose while he throws up so that he doesn't puke it up.

He is sweaty and his hair has fallen out everywhere so now he is covered in sticky sweat and hair. I too am sweaty and covered in his hair.

All the while the pulse ox thing is beeping because I forgot to turn it off and the nurse button is ringing. And Jackson is whining.

Get all of the bathroom business taken care of and almost back into bed and the nurse finally comes in to help. She had been stuck in another room helping another patient.

Get him all settled back in.

More hot packs for his belly.

Suction tubes all hooked back up.

PCA pump pushed to help with the pain.

Toe monitor back on.

Blankets and Toodles all fixed and settled in.

Vital signs taken.

Now almost 44 minutes has passed and he is finally ready to go back to bed.

All of that and I am thankful that I didn't have to unhook the oxygen funnel from his shirt. One more thing to unhook could have made this bathroom break turn into a far longer pit stop involving a full change of sheets and clothes.

A Good Day

2011-07-13T22:41:00.004-06:00

Today was a good day. Jackson wasn't as grumpy and demanding as he has been the last few days. He wasn't in as much pain as he has been in, and he had more energy.

He and I were able to hang out together, play hospital BINGO again, do some crafts, watch some television and just talk. I am convinced I have the sweetest boy on earth.

When Brian and Hailey got up to the hospital today Jackson got out of bed and onto the floor to give Hailey a big hug. What a sweet moment. It was so nice to see him be able to move around a bit under his own will and power.

Even though this is a tough road we are still finding joy in our journey- the picture above is proof of our joy. I have recently been meeting several moms of other kids that have cancer. One of those moms gave me a new perspective on our journey. It is a perspective that I appreciate and now hold dear. It is so accurate as to how I feel.

At first you are pushed off of a cliff, from your normal life, free falling and everything is insane. You are scared, unsure, panicked. Then you land and spend a good amount of time trying to get back up the cliff to continue on the path you were once on, the "normal" path. Eventually you realize you won't ever get back up there, no matter how badly you want to, so you start walking down this other path of cancer, and try and look for the beauty here too. It's not the same, but it's the only path available to walk.

Visitors

2011-07-12T14:58:00.001-06:00

We appreciate that so many of you want to come and see Jackson at the hospital. Unfortunately we need to limit visitors right now because of his low counts and the infections that he is dealing with.

Please contact us before you visit.

Again, we appreciate that you want to see Jackson, but we are doing our best to keep him healthy. Thanks for understanding.

Wagon Rides

2011-07-12T11:41:00.002-06:00

Jackson has been stuck in his hospital room for days. The only time he gets to leave is when he has to go get more tests or scans.

Yesterday he got to go for two different wagon rides. One in the morning and one in the afternoon. He got to have a chest x-ray in the morning due to his lowered oxygen levels, and he went for an ultrasound yesterday afternoon to see if they can find the cause of his stomach pains.

We ride in the elevator down stairs, get the tests done, and head right back upstairs. Usually Jackson whines and whimpers in pain the entire time.

We found part of the reason for his stomach pain and for some of the fevers. Jackson is struggling with several infections. One in his blood, and one called C-Diff which is causing the stomach pain. Luckily the Pancreatitis is getting better. We thought we were half way done with our first hospital stay, but turns out we'll be at the hospital until things resolve themselves- perhaps another 2 weeks.

Blood Transfusion

2011-07-10T23:10:00.004-06:00

Today Jackson got his first blood transfusion and the nurse warned me that it might freak me out to see a bag of blood hanging from the IV pole. Surprisingly I did fine. The blood seemed to give Jackson more energy and he was very talkative when his friends Lucy and Hailey came to visit.

Today was a good day in comparison to the past several days. Jackson is still in a considerable amount of pain, but his energy level has increased like I mentioned above. The nose/suction tube seems to help a HUGE amount with stomach pain, but Jackson's biggest complaint is that he is thirsty. He can't eat or drink anything, and although the IV keeps him hydrated, he is still craving something to drink.

Jackson's hair is falling out at a rapid pace now. I would say he is 75% bald at this point. The back of his head is bald from where his head rubs against his pillow, and the top is bald where he can touch, but the sides of his head still has lots of hair. The hair loss has been far more difficult for Brian and I than we thought it would be. Jackson also is pretty sensitive about it, and will not allow us to buzz his hair, he just wants to let it fall out however it wants to.

Staying at the hospital like this has been more emotionally taxing than I thought it would be- for our entire family. None of us are "great" anymore, we are simply surviving day after day.

Today

2011-07-08T23:32:00.004-06:00

Today was exhausting. I question what I should share. Should I sugar coat things and say that my boy is amazing and that he is taking everything in stride? Because he is amazing and he is taking this into his stride. Or do I put down how hard this is, and make it sound miserable? Because it is hard, and at some points it has been very miserable- so miserable that Jackson screams out in pain and we can't do much to help him.

Jackson's hair is starting to fall out. Only about a dozen strands today, but it is imminent.
Jackson is NPO- which means he can not eat or drink anything until further notice. He is receiving all of his nutrition now through his IV- the Dr's call it TPN- we call it steak and potatoes, or even sushi. No matter what you call it, it comes in two bags, one is a yellow liquid like Gatorade, and the other is white and light sensitive and comes in a brown bag.
Jackson had a tube put down his nose into his stomach today to help suck out some of the nasty stuff that is making him vomit. The tube will be in for a while, and it's unpleasant, but it is helping.
Jackson spiked two different fevers today, and has been on 3 different antibiotics, which we hope will help fight the infections.
Jackson has a morphine pump that keeps him comfortable, but somehow the pain still manages to find it's way into my boy.
Jackson has Pancreatitis which was caused by the Chemo. Pancreatitis is extremely painful.

No matter what I say, or how I put it, I question the approach that I took.

Just know that this is the hardest thing we have ever gone through and that is changing who we are.

Platelets and Bingo

2011-07-07T10:46:00.003-06:00

Yesterday we had more "good" time than we have in the last several days. We were finally able to get some of his pain under control, and for a few hours he perked up a little bit. In the morning we joined in the hospital wide game of BINGO. And later in the day some of Jackson's best buds came to visit him.

The hospital has a television channel that they broadcast a live BINGO game every Wednesday morning. The volunteers bring BINGO cards around to each child's room and Jackson gets to play from the comfort of his bed. They play two different games, the first is just plain BINGO, and the second is "Blackout". The volunteers announce every child's name who is playing, and every time they say Jackson's name he thinks he is famous.

During BINGO, they actually call out EVERY single option, so every child is a winner. If your child has a letter request, or a joke, or gets a BINGO, you can call in and they share the joke, or the success of the BINGO on air. After the game is over, but before lunch the volunteers bring prizes around for the kids that played. Yesterday Jackson won a car... a car that looks almost identical to the car he won last week. We really enjoy the BINGO hour, but by about half way through yesterday Jackson was exhausted, and I ended up playing by myself.

Yesterday was a first for Jackson. In fact, almost everyday brings a new first for us. But yesterday Jackson got his first platelet transfusion. Platelets are part of your blood that allows for clotting to happen. Jackson's platelets were very low, and they didn't like how low they had gotten, so he got his first transfusion.

The platelets are yellow like cloudy honey and it took about an hour to get the 8oz bag into my little boy. It was really weird for me to know that some stranger donated these platelets- perhaps to make a little extra money, and they helped to save my son's life. I am pretty sure I'm going to become a better blood donor.

Yesterday marked our half way mark... half way through our first round of Chemo.

Beads of Courage

2011-07-04T20:56:00.005-06:00

The hospital has a program set up for seriously ill children called "Beads of Courage". The program helps children create their own record of their treatment. For each step of Jackson's treatment he earns a bead. Each bead symbolizes something that Jackson has had to endure, and each bead is something that makes me so proud of my boy.

Jackson has already earned an entire necklace worth of beads. It hangs proudly on his IV pole. He shows it to his visitors, and although they don't understand all of the steps he has been through, they can sense the significance of these beads.

Jackson earns beads for each Chemo drug he gets, each dressing change on his broviac line, each day he is in the hospital. He earns them for each test and scan, each visit to the clinic, each IV, each surgery. He has earned them for a spinal tap, MRI, CT Scan, morphine infusion, a stay in the PICU, and even for surgeries. He will continue to earn beads through out his treatment.

You can go to the Beads of Courage website and learn more about this amazing program. This program is amazing, and often when I think about it tears come to my eyes.

Tomorrow he will earn more beads, and they will hang on his IV pole as a sign of strength and courage. If you ever see Jackson, make sure to ask him about his beads- each time someone does he lights up- even on the tough days.

Joy

2011-07-03T12:39:00.002-06:00

Today I went to church and once again the lesson in Relief Society was specifically for me. I guess the Lord knows exactly what I need to hear.

I tried to share a comment, and I should have known better. I was blubbering, and crying that ugly type of cry- you know the one where you can't breathe and you are gasping for air.

I don't even know what I said, or if what I said made any sense, or if anyone could even understand what I was trying to say.

I was tempted to share my testimony in Sacrament Meeting today, but I knew that there was no way I would be able to hold it together. I guess I can share it here. This seems to be a good place for me to write and express my feelings. It's a great place to be able to share my thoughts and no one has to see the tears and the snot running down my face.

This road has been so emotional for me spiritually. Every day it seems like holds multiple ups and downs for me. My cycle starts when I begin to get angry at God. Why my boy? Why me? Why my family? Why? Then I start to pray. I tell God how I am mad at Him. I tell Him that I don't understand, and that this is difficult. I tell Him that I can't do it alone. And almost immediately after I say that I can't do it alone, I get comfort. I have an overwhelming feeling that we are not alone on this road. He knows what we are going through, because He is right here with us.

During Relief Society today I tried to share my thoughts and because I am so emotional, I couldn't hold it together. I wanted to tell the ladies in the room with me that dishes and housework are not important. I wanted to tell them that joy can be found in everyday things, like bike rides and running through the sprinklers and puzzles and reading books. I wanted them to stop complaining about the messes and the things they have to do- because those things can bring joy if they allow them to.

This last week I was trying to blog on our family blog. The title of the blog was "One Life to Live". I have about a million pictures to add, and I want to document the million things we've done over the last few weeks. Time hasn't allowed me to blog as often as I would like. Time hasn't allowed for me to do many things, but I am finding time for the things that are important. My son, my daughter, my husband. Family; family is what matters most. The physical possessions are not important. We only get this one life to live, and because of the situation we are in, I have changed, and now I can see that I want to spend my life doing something that matters, and spending time with those things that matter most.

And even though this road is hard, we are still finding joy. We are finding joy in kindness, and compassion. Joy can be found in family, and friends. Joy is abundant if you allow it to enter your life.

Days at the hospital

2011-07-01T11:18:00.001-06:00

The days here go slow and somehow the nights are even slower than the days. Technically today we are on Day B.

Jackson is on high intensity chemo and nausea, vomiting, bone pain, skin aches like a sunburn, and mouth sores are all things Jack is dealing with right now.

Only 2 days ago he was a different kid, riding a bike through the halls of this hospital.

Today we will cheer if he eats anything. Yesterday he only ate a few bites of a sandwich but threw it up hours later. He can't even keep water down.

We knew this would be tough but never this tough.

Random thoughts

2011-06-29T05:49:00.001-06:00

Here I sit in the hospital. I have to wake Jackson up every two hours to go pee. It sounds simpler than it is- he is a very deep sleeper.

As I lay awake I have lots if random thoughts going through my head. I think about cancer, and our family, and our amazing support system. But I also think about silly things like punctuation and how I don't even know the definition of a verb.

I think about laundry and dishes. I think about Relief Society and my sister. I think about my fears and my hopes and plans for the future; not just the distant future but also the future that will happen on a few hours, days, and weeks. I think about how we used to take our good health for granted; we used to take so much for granted.

I have so many random thoughts going through my mind. If only I could sleep- but what's the point, the nurse is coming back in our room in 16 minutes for more meds and to make Jack pee again.

Last night was easy compared to the first night. Brian was here for the first night, and it sounds like it was complete torture for both Brian and Jackson.

Cancer sucks. Chemotherapy sucks. Bio Hazard urine and vomit definitely suck.

Cancer

2011-06-27T19:37:00.004-06:00

Leaving for the hospital this morning was difficult. We know we are making the right choice to fight this cancer- but even knowing that it's the right thing, we still question our decision. Today we admitted our 5 year old to the hospital for chemotherapy. Today we took a visibly healthy child to the hospital so that the doctors can pump his little body full of poison. Poison that we are hoping will kill the cancer that is growing inside of his little body.

Cancer. Every time I hear that word it is like a slap in the face. A slap in the face that takes my breath away every time. I am learning how to cope. Perhaps being slapped so many times helps you get used to it, yet again, maybe I'll never get used to it.

Today was technically day 0 of chemotherapy. We had no idea what to expect- we still don't know what to expect. We sat in the hospital room for 8 hours today while Jackson was given IV fluids. His urine has to have a certain pH balance before they can start the chemo drugs. Eight hours of waiting to get started.

We spent some time together at the hospital as a family- thanks to my mom for bringing little sis up. It is surreal to think that hospital visits will become our new normal.

Jackson is starting chemo with two different drugs today. One is yellow- called methotrexate- it's side effects are so many I can't remember them, but Kidney damage, hair loss, nausea, mouth sores and dizziness are all some of them. Because of the possibility of kidney damage Jackson will have to go to the bathroom to pee every two hours so that the drug doesn't sit in his bladder or kidneys too long. Being on this drug makes Jackson "bio hazardous".

Driving home tonight I kept wondering if this could somehow be a horrible dream that I will wake up from. I keep wondering if this is real, but I know that it absolutely is real. This pain and heartache is real. The effect it is already having on our family is real, and the impact is devastating at times.

Tomorrow is officially day 1 of chemotherapy.

Moving Forward

2011-06-22T22:16:00.004-06:00

Most of you who know us have probably already heard Jackson's diagnosis. But for those of you who don't know, Jackson has cancer. It's a very rare form of cancer found mainly in infants and toddlers. The fact that Jackson is 5 and has this cancer is pretty uncommon.

I could go on and on about the things we have learned about his specific type of tumor/cancer, but instead, I'm going to move forward- just like the title of this blog.

It's insane the speed at which things are moving. It hasn't even been a week since his diagnosis, and we've already been on a roller coaster of sorts.

Monday he had an echo cardiogram to check to make sure his heart is strong. Tuesday was a blessedly normal day. Today he had an ultrasound on his kidneys to see if the cancer has spread there (this type of cancer usually attacks the brain and the kidneys first). Today he also went in for surgery to place his double lumen broviac line or a Central Line that will be used to administer his Chemotherapy drugs.

Tomorrow we'll be at the hospital again for a hearing test, and a GFR test to check the function of his kidneys. 6 doctor appointments and 1 surgery in three days.

It has been a lot, and we've only just begun. The wonderful news is that Jackson is surprisingly doing great. I am genuinely amazed at his positive attitude, and his sassy attitude. I had to ask myself tonight if he really had surgery again today because he was sassing me. He seems to understand more than any 5 year old should. He listens and absorbs information. He asks intelligent questions, and has valid concerns. He is resilient and seems to be taking all of this into his stride. I hope to be as courageous as he has been.

More good news is that there are no visible signs of tumors on his kidneys! We have been so lucky that we caught this cancer so early. What started as an "eye issue" in January- double vision, and his eye starting to turn in- was actually a blessing. Without his eye turning in, we still wouldn't know that he had a tumor. He is so incredibly healthy, and you'd never know that he is walking around with cancer.

From here on out it's going to be busy busy busy. Lots of doctors visits. Lots of long hospital stays during the Chemotherapy. Lots of sleepless nights.

He should start Chemotherapy sometime next week. He will be in the hospital for about 3 weeks while he goes through each round of Chemotherapy. The plan is 5 rounds of Chemo, and 2 rounds of Radiation Therapy. The next 6-9 months of our lives are already planned out for us.

Our lives have been drastically changed in the last 6 days. It almost feels like our world stopped turning when the doctor said the words "Malignant Tumor". But I am still surprised that things are moving forward- moving forward at lightning speed.

So, like I said in our family blog. We don't feel strong, we don't know why this is happening to our sweet boy. We just know that we are here for him no matter what. We will help him through every step of this process, no matter how difficult. We will fight this fight, and God willing, we will win.

Going Dim

2011-06-14T22:10:00.002-06:00

The surgery for Jackson was a success. They got what they needed for the Pathology Report and Jackson is recovering better than any of us- or the doctors expected.

I don't plan on updating this blog for a while, but I'm not sure how long.

We are still not sure where this road is going to take us, we are waiting for results and to hear the doctors treatment plan. Somethings I am not ready and not willing to share, and when we do get results I am not sure I am ready to put them out here for the world to read.

We cannot tell you all how much your support means to us. Jackson is so lucky to have so many on his team, cheering for him. Thank you.

Mean Mom

2011-06-13T10:40:00.002-06:00

Jackson has been pouting most of the morning. He keeps jumping on the bed and running head first into a pile of blankets and pillows. I keep telling him to stop and to calm down, but then he pouts and tells me I am a mean mom.

He told me "Running is fun. Walking is boring." I have also heard him say "I am a little boy, and boys need to be crazy." I agree, he is a boy, and boys should be crazy- just not days after brain surgery.

Leaving the hospital we were given some restrictions and guidelines. No straws, no swimming, no diving (sky diving or pool diving), no sneezing and no picking his nose. All of these restrictions are in place for a month. Jackson has been great, and so far the hardest restriction to follow is the "no straws" one. Luckily he's not a nose picker.

It's a Monday. We're back at home and pretty much everything feels like normal. Changing sheets, making beds, eating breakfast, watching cartoons. How is it that everything can feel so normal already?

Home

2011-06-11T15:57:00.001-06:00

We are home now. I can't get This kid to sit down for more than two seconds. You would never know that only 2 days ago he had brain surgery.

He can't wait to ride bikes again. But we are going to make him wait until Monday or Tuesday.

He has so much energy. I just hope he is not over doing it.

Out for a walk

2011-06-11T10:34:00.001-06:00

This little guy is out for a walk.

He should be home today sometime after lunch.

Hooray Hooray Hooray

2011-06-11T08:03:00.002-06:00

He gets to come home anytime today!!! I just talked to Brian on the phone, and the doctor signed discharge papers so he gets to come home whenever he is ready!!

Jackson is more than welcome to hang out as long as he wants, but as soon as he is ready he can leave the hospital.

That being said, if you want to visit, please wait until tonight, because Jackson will be HOME!!

Brian said they took out the rhino rockets and it was not a pleasant experience. He said that Jackson is pretty upset. Jackson wouldn't even talk to me on the phone- which I totally understand.

I am so anxious to get back up to the hospital. I can't wait for Hailey to wake up so that we can go.

Visitors

2011-06-11T00:00:00.003-06:00

Jackson would love to have visitors tomorrow, but we want to make sure he is able to rest lots. We don't get ANY cell phone reception in the hospital. ZERO. ZILCH. NADA. However, the hospital does have WiFi, so feel free to comment here or email me or Facebook me and we can figure out a time for a good visit. It is a long drive, and I'd hate for Jack to be feeling to bad to have visitors come.

Also, like I said in the last post, There is a small possibility that Jackson may be coming home tomorrow so visitors may need to wait until we get home.

We are requesting that visits are short (10 minutes max), and have a limited number of guests.

I will blog tomorrow on times we feel like we can have visitors.

Thanks for your understanding and your support.

NTU Update

2011-06-10T23:56:00.000-06:00

So much has happened over the last 7 hours since I posted last. I didn't realize that so much time has gone by. Time in the hospital seems to go so slowly, then something happens and time flies so fast.

As I pushed "publish post" on the last post we were talking to our new nurse in the NTU (Neuro Trauma Unit). She required our attention, so I published and things got pretty busy from there. We got him all signed in and got more pain meds in him. He took a little nap and Brian and I got the tour of the NTU so that we know where things are like the the parent showers, bathrooms, ice and water machines, toys, books, movies and video games.

He was pretty groggy all day falling in and out of sleep. When he wasn't sleeping, he was in a zombie like state staring at the TV or just staring out into space. He would cry out in pain about every 2 hours when the morphine would wear off, and his biggest complaint was the sites of his IV's. We tried to get him to eat, but he didn't have any sort of an appetite. It was a struggle to even get him to have a drink of water at some points.

We finally talked him into ordering some chicken noodle soup and a strawberry smoothie. We really wanted him to eat solid foods so that he could get some Loritab which would last longer and help manage his pain better. We got the food and he ate 3 bites of chicken broth then refused to eat any more.

At about 4:15 I remember him asking me when Grandma and Grandpa were coming and bringing Hailey. He missed his little sister and was looking forward to her visit. My parents brought Hailey and showed up around 5:00. Hailey was so happy to see all of us. She was especially excited to see Jackson, but she had to wait patiently for him to wake up from a nap. When he woke up he was happy to see people visiting but was still pretty lethargic.

We were going to keep the visit short, but anytime we would say that they were leaving he would say "no, stay." Aunt Becky came to visit too and she and I took Hailey on a walk to explore a bit. We went to the 3rd floor where they have a kids zone or play room. Hailey colored Jackson a picture then we went back to the room to give it to Jackson.

Jackson laid in bed pretty much all day except when he had to go to the bathroom. Brian would help him walk, or he would carry Jack to the bathroom and Jackson would whimper on the way there and on the way back. Jackson also started having a fever of around 101 degrees which made him clammy and even more groggy.

Jill, Tayler and Ashton came to visit Jackson too. I honestly have no idea what time they came. Like I said time in hospitals goes either really fast, or really slow. They brought with them lots of treasures for Jackson. My Activity Day Girls did a service project for Jackson today at their activity (a complete surprise to me). They made him a card a blanket and a coloring book. They also made Hailey a blanket and a coloring book and made Brian and I some great Thank You notes. Jill also brought Jackson a super cute gift pack from Fire Station 107. I am constantly amazed at the thoughtfulness of people.

I think Tayler was kind of freaked out to see Jackson in the state he was in. Honestly he was doing better at that point than he had all day, but he was still mostly a zombie. He did get excited to show Tayler the button he gets to push to call the nurse. But just in case some of you come see Jackson in the next little while, be prepared because it may not be a pretty sight.

I walked our visitors out to their cars, and had to get Hailey's car seat from my mom's car. When I came back I was shocked at what I heard.

We had been begging Jackson all day to eat something, and all day he refused. When I got back from the car, I found a more alert Jackson. It sounds like as soon as I left Jackson told Brian that he was hungry and wanted some food. Brian tried to call for room service, but missed the window by 15 minutes. Jackson had eaten a cracker and half a pudding cup by the time I had gotten back from the car.

I am not sure what did the trick but somehow he turned a corner while I was outside at the car. He was more alert and his speech wasn't as slurred. He was watching America's Funniest Videos when I got back and was even laughing a little here and there. I don't know where this boy came from, but I sure am glad he's here. It is such a relief to know that he is doing better, and finally starting to feel like himself.

He ended up eating half a grilled ham and cheese sandwich and some honeydew melon. He drank some apple juice and tapped his little bandaged hand a bit with the music on the television. I am so glad he was able to turn this corner. I literally can breathe a little easier tonight.

I am home tonight with Hailey. We are trying to get some sleep, but plan on heading to the hospital tomorrow morning. Just as I got settled in here at home a bit, I got a phone call from my little Jackson. He sounded like he has a severe cold (due to the nasal packing) but he also sounded triumphant. He told me that he walked down the hall all the way to the movie room and back with out holding Daddy's hand. Hearing about his accomplishment brought me tears of joy.

The doctor and the nurses say that if Jackson can continue healing so well, he may be able to come home as soon as tomorrow. Brain surgery yesterday, Intensive Care Unit today and the possibility that he may be coming home tomorrow.

Tomorrow the plan will be to have his "rhino rockets" removed by the Neurosurgeon. Dr. Riva-Cambrin said that it can be pretty traumatic and that he has the parents step out of the room because it is so messy and nasty. I think I don't want to be there for that part. I think it will cause lots of hysterical crying. We will be there for Jackson though, we want to do anything and everything for him.

I am amazed at the love, support, and prayers that are being sent our way. Thank you all for being here for our family.

Today had a very happy ending to a rough rough beginning. We are praying for more happy endings.

Out of the PICU

2011-06-10T17:06:00.002-06:00

Hooray!! We are out of the PICU and into a room in the NTU or Neuroscience Trauma Unit. We are so happy that he is doing well enough now to leave the PICU. We are also excited that Jackson is in his own room.

Things are much quieter here and although it isn't the ICU we still feel very well watched out for. In fact I feel a little more watched out for here.

A little walk

2011-06-10T14:24:00.001-06:00

This morning the surgeon said he wants to have Jackson up and walking a bit more today. Jackson seemed like he wanted to get up and go on a walk. In fact at one point he asked if he could "get some fresh air". We got him out of bed and he walked to the nurses desk which is maybe 20 feet but then he was done. When he got back into bed he was exhausted.

Since then he has been sleeping off and on here and there.

We have also made a couple of trips to the bathroom.

He is still in a lot of pain but not as bad when he gets the morphine. The morphine makes him very sleepy. He is starting to fall asleep now and I think Brian and I are going to try to sneak downstairs for some lunch.