Thursday, September 30, 2010

Day #8

No chemo again today - just several other medicines, resting, and watching for fevers, etc. He spent some time in the playroom today and seems to be moving around better.

I went into work today to check in and talk about the plan going forward. I'll probably be changing my role at work a bit to make it easier for me to take care of Joey through this long process. I'm very blessed that my boss is so understanding and willing to work with me. If I had an inflexible job, this would be much harder. I'm going to start working again next week, although my location may be flexible.

Joey Skyped with his daycare class again. He got to watch circle time and see his monkey in his chair. We tried to stay busy this afternoon with books, coloring, DS, and toys, but he is really getting sick of being here.

Chad and Candice stayed with Joey tonight so Jon and I could go out with Katherine. She has gotten very little attention from us this past week and we thought she really needed it. We talked about Joey a little bit. She asked us who made Joey sick - God or the devil. These are things that are difficult for anyone to understand and are very hard to explain to a child.

His labs were stable today - not much different from today except he platelets are still dropping. He may need a platelet transfusion tomorrow. He'll be getting some chemo injected into his leg in the morning. As long as he doesn't have a reaction and everything else looks good, we should be going home in the late afternoon. Joey has already let us know that he'll be sleeping with us at home. I think it's going to be hard for him to be away from us after this.

Playing but grumpy

Watching a movie with Uncle Chad

Watching circle time at Tree House

Wednesday, September 29, 2010

Day #7

Today was mostly a maintain day. He's still on several medicines and a fluid drip, but no chemo.

He took his first shower since being admitted (rather than a bath). He loves taking showers and I'm thankful that his central line doesn't keep him from being able to have them.

He was a little grumpier and more shy today. He didn't want to talk much to many of his visitors. His labs looked "good" today. Good is relative at this point, but they were good compared to what is expected. They are showing that the chemo is already doing it's job, which is very comforting. He also didn't get sick again today - such a blessing and relief. He didn't eat much, but he played and acted a lot like himself.

We got Skype set up and he was able to see his class. It was so cute to see their little faces all crowded around the computer. He didn't talk to them much because he was being really shy, but he did show them his central line. They had his monkey and made sure that he participated in everything they did.

We finally got him to go play in the playroom. Once he got there, he had a lot of fun. It's good to get him out of his room for a little while. He has started getting used to having his "tree" follow him around everywhere.

His grandma came to stay with him tonight so that Jon and I could have some time with our Bible study group in a separate room. It was good to get out and spend some time with them even though we were only a few rooms down. He was so tired that he fell asleep before 8:00.

In the playroom

Playing Jenga with Grandma


Computer games

On Skype with his class at Tree House

Tuesday, September 28, 2010

Day #6

I'm posting twice today since I didn't post anything last night.

Our day started with a visit from Dr. Rosen (the oncologist) with the results from the bone marrow aspiration. They confirmed that he has ALL type B. They also confirmed that there are no cancer cells in his spinal fluid. Both of these are good things. ALL is the most common and the easiest to cure of the types of leukemia. There are other details that I'm sure the doctor knows but we don't. I told him that I don't want information from him on the prognosis. I'm more concerned with understanding the treatment plan and assuming that it will lead to a cure. Starting today, his is in a 28-day induction treatment period. The chemo will be fairly intense, with the goal to have 99% of the cancer cells gone after the 28 days. He will then continue through the rest of the treatment - the total plan is 2 1/2 years. We'll need to put off some things that we had scheduled for October like his birthday party and visits to Grandma's new lake house. We'll just postpone them until later.

His back was really sore today and he had about 45 minutes when he said his tummy hurt. We tried to go down to the playroom, but he wanted to go back to the room before we got down the hall. He spent most of the day in his bed and hosted visitors. His friend, Kyle, from church came to see him and played for a while. He also watched a couple of movies.

In late afternoon, he started the induction therapy. They gave him a steroid pill (which he'll get 2 every day for the 28 days), and a chemo drip through his central line. There are signs on his hospital door that warn about the hazardous chemicals. They have to double-bag his dirty linens and anyone who may come into contact with his bodily fluids has to wear special chemo-proof gloves. It's really strange to think that everyone has to be protected from the stuff that is being injected into my child. He is still on a fluid drip and has potty about every 30 minutes.

His Aunt Juli brought him a special package. It's from There's a Monkey in my Chair ( ). It's an organization started by a mom whose daughter had brain cancer. The concept is that the monkey goes to school on the days the sick child can't. Katherine will be taking Joey's monkey to Tree House tomorrow.

He had some friends and his sister visit tonight. He was very sick of being in his room, so we went to the floor lobby. Whenever he leaves his room, he now has to wear a mask. Since he can't walk well yet and has to pull around his IV, we put him in a wagon to pull him to the lobby. He was still able to have fun and eat a chocolate shake from his grandpa.

I noticed a little boy walking around the floor who obviously has cancer so I introduced myself to his mom. He just turned 5 in July and was diagnosed with ALL last Feb. He also has the same doctor. I think we'll be getting to know him and his family well. He is the boy of the year for the Wichita chapter Leukemia Society this year. He is here this week because he was having headaches and his platelets are really low - getting more blood transfusions. It was a picture for me of what our next year may be like. His mom is very upbeat. I may try to spend some time talking to her tomorrow.

We may be going home on Friday afternoon. I'm ready to be home, but I'm also nervous. While at the hospital, I know he's safe. I'm not sure what it's going to be like to live with this at home. The doctor said he may be able to go back to preschool next week, but I'm not sure he knows that Joey is usually there full time. I'm not sure how I feel about it. It's going to be hard to keep his life as normal as possible while I'm also very protective of him.

We are feeling pretty good most of the time, which can only be a result of the multitude of prayers for us. I've never experienced anything close to this before - being part of something so painful and scary but also something so sweet as seeing the body of Christ come together to lift up one little boy.

Playing checkers with Amber

His monkey

Playing with Kyle

Day #5

The day started early with Joey being taken upstairs for his procedures. They sedated him until he feel asleep (which took about 10 seconds) and performed the bone marrow aspiration and spinal tap. They also injected chemo directly into his spinal fluid. They had a difficult time getting the bone marrow out because the cells were so tightly packed and had to go to a bigger needle but they eventually got it. He slept for about 2 hours. When he woke up he said he felt good and played "Angry Birds" on Pastor Richards phone. We got back to our normal room around noon and just hung out the rest of the day.

His back was pretty sore, so he couldn't walk around, but he felt ok as long as he was sitting. He's on IV fluids so he has to potty a lot and had to get in and out of bed for that, but he was determined to get out by himself rather than have us help him. Luckily, he didn't get sick at all. He watched some movies, played his DSi, and had some visitors throughout the day. My awesome friend, Celest, convinced me to leave the hospital for the first time and go to Starbucks.

He is starting to get a little grumpier, but is still doing really good. When we were getting him settled down for the night, he got upset at us for not turning the TV channel to what he wanted and he started to have his first fit since we've been here. It quickly turned from a 4-yr-old fit to a real cry. He laid his head on Jon's lap and just cried for about 10 minutes. We've never seen him cry like that before. It sounded like pent-up frustration coming out. Once he was done, everything was fine. He just needed to get some emotion out of him. It was hard to watch, but I also knew it was a good thing for him to be able to do.

Joey got ahold of the camera...

Sunday, September 26, 2010

Day #4

Again, there was little action today regarding tests and treatments. They gave him one drug that will keep the cells from forming into tumors and also keep his uric acid down once the chemo starts, but there were no side effects. He's getting IV fluids right now that will keep going while he sleeps to get him nice and hydrated for the morning. I'm guessing we'll be up several times tonight for potty breaks.

He felt great again today and spent all day playing. He had several visitors and played in the playroom with his cousins and some friends. He also got some great toys and movies (he watched 4 Veggie Tales movies tonight).

He asked a lot of questions today - some of the same questions over and over. The first words he said when he woke up this morning was "Do I get to home today? Tomorrow?" He asked several times "Why do I have to have surgery again?" We explain it to him, but it's just not something he understands. When he thinks of being sick, he things of something that he does (like coughing). He doesn't understand being sick when you feel just fine. It's actually a blessing that he doesn't understand. If he understood it, he would be scared.

First thing tomorrow morning, he goes up for sedation and will be in procedures and recovery much of the morning. They will perform a bone marrow biopsy (in his hip), a spinal tap, and put some chemo directly into his spine. The biopsy will give them more information about the cancer cells so the specific treatment can be determined. The spinal tap is to check if there are any cancer cells in his spinal fluid - when the go into the spinal fluid, they can travel into the brain. He has no symptoms that this has happened. The chemo into the spine is to prevent them from going there or kill them if they already have. They will give him some anti-nausa medicine and pain meds, but he may still feel sick and be sore in the hip. All kids react differently, so we'll just have to wait and see how well he tolerates it. One of my prayers through all of his treatment is that he not be miserably sick. Especially since he feels fine now, I just hate the thought of making him feel bad, even though I know it has to be done.

The support, love, prayers, help, etc that we've been shown already is just amazing. I'm not sure how to describe how grateful we are. It feel a little strange to be the recipient of it and know that we'll never be able to give back all we've been given. I'll probably say it over and over, but THANK YOU to everyone. We are trusting in God to get us through this and know He is making it happen by using the people around us.

The foam gets a little messy...

Katherine made him a poster for his room

Playing with his new fire truck (he got a couple of different trucks today)

Showing off his Hickman line

Saturday, September 25, 2010

Day #3

Since its the weekend, there wasn't much going on today with tests and treatments.

Joey always says that he wants to be a fireman (like his Uncle Chad). Chad and 2 other firefighters came to see Joey in full gear. He was a little overwhelmed when they first came in but he got better as it went on. They gave him is own truck 3 (their truck) t-shirt and he got to go outside to see the truck itself. (It was the first time he or I had been outside since Thursday morning.) He climbed in and they showed him some of their equipment. He even got to play with the heat-sensing camera. Katherine pulled the horn and the cars on Hillside started pulling over - pretty funny.

His blood tests were better because of the transfusions from the last 2 days, so he didn't have any more today. His white blood count was lower than yesterday but only slightly. He still has no fevers and feels pretty good most of the time. He slept about 2 hours in the afternoon and was a little grumpy when he got up.

Shawna brought me a binder and recommended that I get copies of the labs, etc to put in it so I can track everything as we go. I never would have thought to do that but it helps me feel like I can better understand what's going on with him. The binder will probably be packed full in a couple of years.

This is a bit gross, but too funny not to share. When Joey goes potty, he has to do it in a plastic container so they can track the amount of urine against the amount of fluid he drinks. He needs someone to help him so he doesn't make a mess. Jon was helping him, but didn't quite get the container on right and instead pushed "everything" up. Joey immediatly started going and it shot straight up into Jon's face. Joey loved it.

Thank you, everyone, who has been helping us out though this. Many of you have brought snacks, toys, meals, or anything else we need, and we really appreciate it.

Joey with Uncle Chad

Playing with the heat camera and testing the temperature in his mouth.

Playing each other in Mario Cart

Friday, September 24, 2010

Day #2

Playing with the surgeon's glasses

He loved bath time as usual but had a hard time keeping his IV dry.

Hangin out

Playing with Jackson - notice the line of blood as he was getting his transfusion. He thought it was pretty cool to show everyone.

Katherine really wanted to be with him.
Today went as good as could be expected. Joey woke up feeling great. We took him for a walk around the floor just to let him get out of bed, and he ended up running around. He took a bath and was as wild as ever. He said "I feel a lot better. I think I can play outside longer now." The blood transfusion really perked him up. While I washed his hair, I started to explain that he won't have to worry about washing it for a while. He was pretty excited about that.
We met his oncologist today. He is highly recommended and I like him already. He is very concerned with treating all of Joey. This includes making sure he gets as normal life as possible. I'm not sure what this means yet, but it's encouraging.

His friend, Jackson, came to visit. Some awesome people from work took up a collection for him and bought him lots of stuff to play with and his own DSi. He loves it. Even though he was getting another blood transfusion, he got down on the floor and played with Jackson.

We had some other visitors who helped us pass the first couple of hours of the afternoon. At about 3:00, they took him down for surgery to install a central line. His platelets are low, so they gave him more on his way down to ensure no bleeding issues. He was very brave when they took him into the OR without us. He gave me one scared look and then let go of my hand quietly. The surgery was a success. It took him a little while to wake up, but he slowly came back to being himself.

He had lots of visitors later in the evening after he woke up all of the way. They spoiled him with fun gifts. He said that his chest hurt a few times (the location of the central line), so he had a dose of morphine. He also go another blood transfusion.

Katherine wanted to stay with us so we decided to let her sleep here tonight. Her class made him a get well book that was very touching.

I continue to be amazed at the support we've received. Because of the wonderful people, Joey is actually enjoying himself most of the time.
I felt much more calm today, with only random bursts of panic. With all of the support, I almost start to forget why we're here and then I think, "Oh yeah, my son has cancer", which usually sets off the panic. I know that God is in control and that he loves Joey even more than we do. I know this is true, but I'm not sure that I completely understand it or remember it all of the time.

The Day Our Lives Changed

Here is the story: I noticed that Joey started looking pale about 3 weeks ago, but I wasn't sure if it was my imagination and only mentioned it to Jon. About a week after that, his daycare teachers said he looked pale and a little yellow. I started watching him very closely and examing his whole body, but didn't see anything else unusual. I decided to watch it for a week or so and then call the doctor.
Two days ago, I called the doctor who called in labs directives for a CBC and liver check. We didn't take him in yet because he had his regular allergy checkup scheduled - I thought maybe he was just not feeling well from allergies. Yesterday, his daycare called to say that he was really tired and we sleeping all day - this is when I really started to get worried. When I took him to see the allergy doctor this morning, she was concerned as soon as she looked at him. She recommended we do the labs right then and that I should wait there for the results. When they came back, they looked very bad and indicated luekemia, so they immediately admitted him to the hospital.

Jon and I were in complete shock. We immediately thought the worst. When that doctor asked if we needed anything, Jon said prayer. She got down on her knees in the room and prayed for us. Joey didn't know what was going on and starting asking questions like "why are you crying if I'm just sick?" and "how did I get sick?" and "how can I be sick if I'm not coughing?" Those are not easy questions to answer for a 4-yr-old.

Once in the hospital, they said they were 95% sure it was leukemia but started doing other tests. They needed to get an IV in, but his little veins kept collapsing. It took 6 pokes and lots of digging, but they finally got it. That was the hardest part of the day for Joey.

They gave him a blood transfusion and his color started coming back almost immediately.

They did a CT of his abdomin because they were a bit concered that he may have something there. So far, the preliminary results are that it was clear (a big relief).

The preliminary pathology results say that he has acute lymphoblastic leukemia, which is the most common and also most curable form. They will do a bone marrow biopsy on Monday to get more details so they can determine the best method of chemo to treat him with. He will get a central line put in tomorrow which willl stay in through the course of treatment. He may start chemo this weekend, or they may wait until after the biopsy and start it Monday or Tuesday. He'll then be started on a course for chemo for the next 18-24 months or as long as it takes to cure it.
There are many things that could be worse - it could have spread and created tumors, it could be the type that is harder to treat, he could feel really sick right now or could have gotten an infection (he has almost no immune system right now). They have assured us that this is curable. It's not an easy road to get there, but one I'll gladly go down for him.

I'm a little overwhelmed by all of the support we've already gotten. I don't know how I would have made it through the day without all of the people who came to support us. I was basketcase most of the time, but am much more calm tonight.
Reading all of the Facebook posts was calming (to know so many people are praying), but also very surreal that those posts are actually about us. This is not something that I ever expected to go though. Our lives have been changed forever, but hopefully it will be change for the good once this is over and Joey is healed.
He feels good, so please pray that he'll continue to feel good and won't get terribly sick from the chemo or have too much pain from the biopsy.
I'll continue to post updates as I can.
Thank you!