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.

Day +4

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

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.

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.