Alopecia comes all at once

Here is Levi two weeks ago on one of his donut runs to Ridley's. Notice the full head of hair being blown in the wind. Well, it hasn't exactly been a full head of hair of late, it has been thinning with some small patches missing and a receding hairline, but nothing too noticeable. We presumed we wouldn't have to bother with grooming under the impression his hair would just fall out, but after six months he was looking a bit scruffy. This is Levi after his first haircut in months. The doctor said if it hasn't fallen out by now it probably wouldn't. 

Here is Levi less than a week later. Bald as cue ball with the exception of a few stubborn tufts of hair in the front. His alopecia seemed to come all at once. 

We did a little snipping and shaving to make his baldness a little more uniform. Levi was in good enough spirits and even obliged to help.

He is now ready to join the ranks of Charles Xavier and Jean-Luc Picard!

This is Levi's hat that he picked out for himself. Of all the hats online he wanted a plain blue one.  It's the first of his hat collection and hopefully he can start acquiring many more.

Three months later

The last 3 months have been good ones for Levi and his recovery. He has tolerably finished the following rounds to treatment: induction, consolidation and interim maintenance I.

He has seemed pretty normal and has been able to participate in most of the activities he normally does. For example he rode his bike all the way to the park and back today. Most of the weight he gained from the first month is gone. Here's a picture of him and Tolkien back in December with their new church clothes. He does ok and although he still can't go to nursery he does like to go sit with his home health nurse during sacrament meeting. They've formed a special bond, on one of her more recent visits he insisted on making her an egg sandwich.

Levi has seemed to find ways to entertain himself indoors with all of this snow.

 And outside too!

 This was 1 of 5 ER visits Levi has had in the last few months. It's pretty routine...we arrive, they take all his vitals, they call primary childrens and they tell them to give him some antibiotics. Although routine it still takes 4 hours. The Heber hospital is getting better, it's not fair to compare it to primary's.

 All the while Tolkien has been developing a sense of personality. He enjoys tackling Levi, hitting Levi on the head and Levi responds in turn. They've already developed such a loving brotherly relationship. The other day Levi gave Tolkien a hug and said, "I love you Tolkien!" Today he rammed him with his head. 

This is Tolkien getting over his fear of walking outside. He enjoyed following his brother around the snow covered park.

Last week Levi started a new phase of treatment called delayed intensification. We hear it is one of the roughest phases. It lasts 2 months so we'll see how well Levi tolerates it. The nurses did assure us his hair would fall out during this phase of treatment. He has to take dexamethazone again. We'll need to up our food storage to appease his raging appetite. 

This is Levi getting a echocardiogram. All is well besides the small hole in his heart. The doctors weren't too concerned and said it will close up when he gets older.

Day 2 of delayed intensification.

 Seemed to be doing fine so he went to the park.

Two hours later...couldn't keep anything down for the rest of the day. Note to world; if you ever take dexamethazone be sure to also take zantac. 

Treatment

Before steroids                       After 25 days of steroids

As you can see Levi has gone through quite the transformation during his first month of treatment. The first month of treatment for leukemia patients is called Induction. The treatment for this first month is aimed to try and eradicate the leukemia from the body. For the type of Leukemia Levi has his treatment has mostly been taking steroids and receiving chemotherapy. 

Twice a day Levi has takes a steroid called Dexamethasone as well as Zantac to make sure the steroids don't create ulcers in his body. Twice a week he takes Septra which is an antibiotic used to keep him from getting pneumonia. As you can tell from the pictures above the biggest side affect of the steroids is weight gain. The doctors warned us that Levi would be eating a lot and that his cheeks and stomach were going to get bigger. We definitely took everything they said seriously but it has been crazy to see it happen to Levi in such a short period of time. Part of the weight gain is due to Levi retaining water but another big part is that he eats constantly. I am constantly feeding him. In the morning he lays in his bed and I hear him calling to me "Food please, food, food!"Breakfast usually lasts from about 7:30-10. One morning he ate the following for breakfast; grilled cheese, 2-4 sausages, cereal, milk, and crackers. Once breakfast is over he usually just snacks on crackers/popcorn/pretzels. Then for lunch he usually has similar foods that he had for breakfast. The only veggie he will eat is green beans an on an extra hungry day of his he can go through a whole can. By dinner time I am just trying to feed him whatever we have left in the house. Each week he has been stuck on different types of foods. The first few weeks it was pancakes, peanut butter sandwiches and hot dogs. The past couple weeks it has been mac & cheese, green beans, popcorn, chicken nuggets and grilled cheese. This coming Tuesday is Levi's last day taking the steroids. I am so excited for that! Trying to feed Levi this past month has been more exhausting than I anticipated. 

 
Another side affect of the steroid is a weakened immune system. Because of this we have tried to keep Levi away from individuals who are sick. We have also tried to keep him away from really busy places. However, due to his increased appetite, and for my own sanity, I have taken Levi to the grocery store a few times. The steroids also make more moody than normal. As long as he isn't hungry Levi has been pretty happy. The doctors also said that he probably wouldn't walk during this month because the steroids could make his bones hurt but Levi seems to be doing well enough because he has been moving more than I anticipated. He mostly does just sit on the couch and eat but if he wants something he will get off the couch and walk around.

Every Wednesday Levi receives his chemotherapy treatment at Primary Children's. At Primary Children's Levi has blood samples taken from the port that was placed in him when we stayed in the hospital. The blood samples are used to see how his body is reacting to the Leukemia and treatment. They also look at his blood counts to see how high his immunity is. So far Levi's blood levels have been good (good for a cancer patient) and we haven't had to go extreme with quarantining him. He also receives his chemo which is called Vincristine through his port. Luckily the Vincristine doesn't make Levi nauseous or super sick. 

For those of you who are wondering what a port is it refers to the picture below. Basically, it allows the doctors to draw blood and and give levi his chemo without having to do an IV. 

The port is all under the skin and the doctors so when it is not accessed Levi can get it wet and do anything he wants really. He will have this port in his body for about three years. Below is a picture of Levi while his port is being accessed.

On Wednesday Levi will be done with the first phase of his treatment. They are going to take a sample of his bone marrow to see how much Leukemia is left in his body. Depending on the results Levi will stay standard-risk or be moved to a higher-risk. The doctor however, seems pretty confident that he should stay standard risk. 

The next phase is called consolidation. This phase lasts about 1-2 months depending on how Levi responds. I don't know much about this yet but Levi should  be receiving more chemotherapy and should shed the extra pounds he just gained. After consolidation the next phase is remission. This will last about 2-3 years.

Treatment will be about 3 years for Levi. The first 6-8 months Levi will be receiving treatments weekly. After that it slows down a little.

Levi has been such a champion during all of this. I am not sure he knows exactly what is wrong with him but he knows that we are going to the doctors each week to get medicine so he can get better. 

Life at Home

When we came home from the hospital I may have gone a little overboard but I wanted to make sure we had an adequate amount of personal hygiene/illness prevention articles. Whatever we can do to help Levi stay healthy is worth trying. When we left his blood counts weren't too bad so he has had fun playing outside and riding his bike. We've been avoiding public places and Levi's been a good sport about wearing a mask if we ever go out beyond the limits of the front or backyard.

Jessica and I take turns staying at home with Levi during church. The doctor said we could consider taking him to sacrament meeting but to make sure to arrive late and leave early to avoid interacting with potentially sick people. This morning his temperature was above 99; nothing alarming but we thought we'd keep him home again. Levi is a good sport and enjoys playing with some of his new toys or watching a movie. Today was Monsters Inc which he somehow convinced us to watch twice. We're learning how to still set limits but also parent a child with cancer who is very easily pitied. 

Even though Levi doesn't get out as much these days he still likes to have visitors. Here he is with his two cousins eating curry and rice. Levi was mostly fond of the rice and the company. That's ok...more curry for us. We are grateful for those who have brought us food and spent some time with the semi-quarantined toddler. 

Although hesitant at first, Levi eventually got the hang of trick or treating. His mask went perfectly with his doctor costume but was mistaken as a leukemia patient more than once (it was probably the fact he was being pushed around in the stroller in one of his more listless dispositions). He didn't even hold out his candy bag but rather said, "Trick treat. Put in bag." After getting the concept he kept asking to go to more houses and we managed to go up and down an entire street. Upon returning home Levi was anxious to partake of his newly acquired spoils but ended up taking a bite of each kind of candy and spitting it out. The next day he gave us his stash. It was a good Halloween.

Of course having cancer isn't an enjoyable experience but it does have its upsides. Due to the steroids Levi is taking he's experiencing an astounding increase in appetite. The steroids also cause him to retain water resulting in chubbier cheeks and a protruding belly. He could have passed as Spanky for Halloween had he only had a brimless hat and mid calf length shorts. Of late his favorite foods are peanut butter sandwiches, chips, pretzels, cheese, pancakes shaped like Mickey, crackers, rice, popcorn, green beans and cereal milk but not the cereal. Also he always wants to take his medicine with orange juice. Every morning when Jessica has gone to get him out of bed the first thing he says is what he specifically wants for breakfast. He's pretty ornery until he gets some food in him at which point he exaggerates all politeness. "Yes, mommy!" Thank you mommy!"   All of this added weight will be lost just as quickly as his treatment progresses but Levi seems to be enjoying eating to his heart's content (which is conveniently just what the doctor ordered). 

"Levi, can you say leukemia?"

After six weeks of back and forth to the doctors office, five visits to be exact, we received a more conclusive diagnosis. First it was asthma, then pneumonia, then it was constipation followed by a possible toxic synovitis. The final verdict...leukemia. How does one react to such news? Instead of feeling shocked or angry we felt relieved. Relieved we finally found out what was wrong and relieved we could start treatment. We found out about his condition on Monday and fortunately enough Levi was able to start treatment on Tuesday. Here he is just before going into the OR to get his central line PORT. Good thing the hospital gave him a ninja turtle for safe keeping and his aunt Allison was there to walk him back to surgery.

The operation was successful and Michelangelo was replaced with Woody. Good thing he had a tangible friend to model how to wear an oxygen mask (Tom, Levi's imaginary dragon friend wasn't a big help with this but works wonders in getting him to take his medications). 

Although tired, the first thing Levi asked for after getting settled was for some food. His first meal consisted of chicken nuggets, pizza, and a cookie.

Watching one of many, many episodes of Mickey Mouse Clubhouse. "Mommy, Mickey Mouse Clubhouse? Watch?"

Levi's first venture out of his hospital room. Good thing he got stuffed versions of Cairo and Maya to show him how to wear a mask.

Primary Children's is great...it's Baymax!

Levi has had a lot of family visitors and even a few furry therapists. He let Winston and Sammy sit on is bed with him and was able to procure Winston's calling card.

Not even cancer can slow this boy down! To his delight there was an identical bike to his own on the hospital floor. I never thought I would have to wheel an IV tower along side him while learning how to ride a bike. 

Levi is doing great and responding well to treatment. We were happy to learn that the type of cancer Levi has, Acute Lymphoblastic Leukemia, has a high cure rate in children and that he has a high chance of leading a normal, healthy life. Treatment is going to be a rough road but he is a tough, resilient little boy who is still going to be doing things he enjoys all the while saying, "Watch this...!"