Returning Back to Normal

Over the last year I've longed for our old 'normal', for a while we were uprooted and thrown into the cancer world. We spent days and days at the hospital. We spent hours in doctors offices, and we spent several nights inpatient. We ate more cafeteria food than anything home made, and we struggled to keep our family together. We spent 93 days inpatient in the ICS unit in 2011... 93 days is an awfully long time. We struggled during each and every one of those 93 days and we often struggled in the other 272 days that we were lucky enough to be home. But now, we are finding our place again.

Returning back to normal has been so natural in some aspects, and in other aspects it has been such a struggle. Jackson is doing incredibly well. He is getting stronger each day, and he is so happy to be 'done'. We still have visits to the hospital, but only twice a month at this point. We don't know if the chemo worked, but we are hopeful, and prayerful, and optimistic.

Jackson's body has been through a lot, and although his hair has finally grown back, his body is still recovering from the extremely harsh bone marrow transplants that it received. Jackson's platelets are still extremely low at around 20...normal levels are between 150 and 450, but they have decided to not transfuse him until he either has extreme nose bleeds that will not stop, or until he gets to 10 or below. So far his body is making a few platelets here and there, but he is not recovering they way they expected him to recover.

After a bone marrow transplant, the doctors have certain guidelines and rules that each patient must follow closely for the first +100 days. Today Jackson is on day +86... we are so close to that day +100. Around day +100, they will allow Jackson to return to a normal diet again... which he can't wait! Of all the things he is DYING to eat, he is the most excited for....get this... Cafe Rio. Yep, I guess he is my son after all... even though he looks more and more like his Daddy every day.

Day +100 is a big deal. I am so excited for April 22nd!

As far as returning to 'normal', to be honest, it has been wonderful. I love that my boy is out riding his bike again. I love that he is playing and running and laughing. I love that he is alive... what a blessing in that alone.

I have recently been in touch with a new family from Texas that has a little boy that was recently diagnosed with ATRT. My heart goes out to them and their little guy. Reading emails back and forth from them has been difficult for me, because I remember all too clearly the emotions that I felt at Jackson's diagnosis. If you have time, you can check out their blog, and I'm sure they would appreciate any prayers you could send their way.

Make-A-Wish.... Granted!

After 5 long months of waiting, Jackson got his wish granted from Make-A-Wish. He got his go kart! He was finally healthy enough and out of the hospital, so he was able to have his big Wish Granting Party.
This windy day brought more joy to Jackson than he has experienced in several long months (perhaps even the last year). Jackson counted down for weeks and weeks until the big day came. Each day as we would get closer to the big day he would cross a day off of the calendar, and we'd talk about his go kart.


I don't mean to brag, but seriously, I think this kid's got some driving talent!

I do feel a bit of anxiety watching my little guy out there on the race track but I figure if he can battle cancer like a champ, he deserves to have a little fun too... right?

Ring that Bell!

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

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?

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

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

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.