Interesting new favorites

Well, as I have said before, Logan is obsessed with food. But I am noticing it goes far beyond just wanting to eat and asking for food. Since he has not had as  much energy, he has been watching more TV/movies and playing more on the iPad (which he only did occasionally before). He usually only wanted to watch his favorite movies which included Cars, Cars 2, and Toy Story 1, 2, and 3. What is his new favorite movie? Ratatouille. When playing on the iPad his old favorite games were a Cars 2 memory matching game and a Cars driving game. His new favorite games? Fruit ninja and a puzzle game. Does he do the puzzles of toys, cars, airplanes, or animals? No, he goes straight to the food puzzles. As you can see, all of these changes have one thing in common: they are about or include food.

I have had to put up over half of his clothes because they do not fit his body right now. I just put them in the closet, because I know they will soon fit again. But I do not want him to pick out a favorite shirt, just to be told that it is now too small. He already melts down easily, I don't want to add to it.

Of course, my interests and activities have changed as well. I usually enjoy reading fiction, but now am reading articles and books about leukemia and dealing with childhood cancer. I have taken to attacking dirt and germs in my house as public enemy #1. Which, I guess right now they are. I am constantly disinfecting all the doorknobs, light switches, stair railings, refrigerator handles, cabinet doors, drawers, and any other surface that we touch often. Not to say that before my house was a germ infested science project waiting to happen, but I would not say that I was guest-ready at all times.

This week we have an appointment on Tuesday afternoon at the doctor for a blood check, and then have the bone marrow biopsy and lumbar puncture on Friday. Thanks go out this week to Carol for providing us a cooler bag for the front porch; Gail, Erika, Julie, Pam and Peg M for providing food for this last week and early this next week; Peg G for having a box of goodies delivered; Julie and Erika for toys for the kids; Peg M for bringing me Starbucks and entertaining the kids; and Tammie for bringing some groceries. Thank you all for your support and love.

This is a picture of Logan playing with his hair, which is his comfort item. He just sits and twists the front of his hair, which is probably why it is always sticking up. Not sure what he will do if he loses it all.

First outing

Since Logan's blood counts are looking so good, we decided he would be OK if we took him to his friend's birthday party. We knew it would be a small party with just a few kids, and we had our hand sanitizer at the ready. So off we went. At first, Logan was pretty grumpy, and he did not want anyone talking to him, looking at him, or breathing in his general direction. But after eating some food, he was in a better mood. And, though he wanted some of the presents for himself, he started interacting more and playing with the other kids. We reminded him that his birthday is in August, and then he was content after getting a great goody bag which included a water gun. He then proceeded to squirt every body, no one was immune to his assault. We washed our hands often, and he had fun. Logan did get tired, and asked to go home so we went home for quiet time. I think he will rest well tonight.

Packing it on

Logan is on day 22 of chemotherapy. We went in for another injection in his port today, and it went well. He still does not like putting on the mask during the time that they clean and insert the needle, but does much better. He went in today and was more cooperative, and he even gave the nurses a high five each. He is getting pretty puffy from the steroids. Some of it is weight from all the food he is eating, but much of it is fluid retention. In fact he gained 2 pounds just since our visit yesterday. Overall during the 22 days he has gained 6.6 pounds. That is a lot for a little guy to pack onto a 3 foot frame. He just seems uncomfortable, and his breathing is even labored. It goes back to that analogy of a pregnant woman. His belly is getting big and it is shoving everything up and crowding his diaphragm. He gets tired quickly, especially when walking up the hill in our backyard. But he is a trooper and is hanging in there. Just 7 more days of steroids left, and I hope his clothes will fit for long enough to lose some of the fluid he is retaining.

Good lab check

We went into the doctor's office for a quick blood check before chemo tomorrow. Logan's numbers are looking really good and there are more normal values. His white blood cells are in the normal range. His platelets are still in the normal range, but now right in the middle of the range vs just barely normal. His hemoglobin which is what takes oxygen to the body is still low at 9.8 (the range is 11.5-14.5), but is not dropping which is good. And his ANC, which is a measurement of many cells in his immune system and tells us the level of risk of getting sick, is doubled from last week at 1364 and 1400 is considered in the average range (according to the lab sheet). So, all that is just a fancy way to say that his body is producing the healthy cells right now and they are getting back to normal. It is another indication that his body is responding to treatment.

We have 8 days of the steroids left, and I do notice that Logan is less grumpy overall. He really only gets upset when he is hungry and wants more food. He seems to have one big spurt of hunger each day in which he cannot seem to get filled up. Some days it is the morning and he wants to eat several times before 9am. And then other days like yesterday, it was in the afternoon and he had lunch, snacks, some more lunch, and still wanted more. I am starting to find some times when I can bargain with him and put him off a short time, but he never forgets.

Here is a picture of us from yesterday. He has certainly filled out over the past 3 weeks.

Ups and Downs

As I have said before, we are feeling more optimistic. But this is still the scariest thing I have ever faced, and it is an emotional roller coaster. I tend to stay away from Google, because it can scare the living daylights out of me giving worst case scenarios. Lately there have been headlines about cutting edge treatments, but again these are used as last ditch efforts. I hope to never be in that place. I read an article about a girl relapsing, and then doing OK after more intensive chemo. It is good to know that there is a place to go if the first treatment does not work. But I am putting all of my eggs in the "this is going to work" basket. But when my mind was wandering today to that scary place of "what if it doesn't work?" Logan was right there in front of me ready to give me a hug. His little arms around me at that moment seemed to open the flood gates. I usually am able to keep it together and not cry in front of him, but could not stop this time. That has happened only one other time, and that was in the hospital the day after he was diagnosed and I called my mom to tell her. That time, I thought Logan was sleeping, but when he heard me crying, he started telling me "It's OK mommy, don't cry." Today it was the same. He just kept telling me "It's OK, don't cry Mommy." He even pulled back, put his hand on my cheek and gave me a kiss. My strong, brave little man gives me strength, and I am thankful for all that I can get.

But, I'm still hungry...

My poor little man is just so hungry. He eats, but then wants more. And of course he will not eat much that is healthy. Occasionally he will eat some watermelon, but not the usual volume of fruit that he ate before. Before these crazy steroids, he would eat fruit like it was the best thing on his plate then ask for more. Now he only craves junk food. He wants corn dogs (at least I got the chicken ones), soup (not so bad), pizza, pretzels, pop tarts, and cereal. I try really hard to spread these out and insert healthy items, but he is not going for it. Nine more days of steroids, and they say he will return to normal even losing the weight that he gained. His belly just looks so tight, and I may have sighted a stretch mark this morning. Not sure, it might have been a crease from his PJs, but it would not surprise me since he gained 2.5 pounds just last week. I know part of that is water retention too, since that is also a side effect. It is just so strange to see him like this, he looks and acts like a different kid. The medicine also seems to have turned off his ability to tell when he is full. No matter what he eats, or how much, he then says "I'm still hungry." He can turn completely pitiful. Logan has even taken to helping out more in the kitchen, I think to keep me on task and help things move more quickly.  Here is a picture of him watching the pizza cook yesterday.

How I am doing, update

Like I said in the New Concepts posting I am trying to be more honest about how we are really doing and handling all of this. It is a struggle. I still have a hard time saying that Logan has "cancer." For some reason, the word Leukemia is less difficult for me, but saying Cancer is harder. Even typing that and thinking it was difficult. I still don't want it to be true, and if I could opt out of this situation, then I definitely would. But that is not our reality.

With that being said, we really are doing better. I am not just saying that because it is my instinct to be positive. I am not a complainer, and I do try and stay positive or put a positive spin on things. That is harder in this situation. But currently, I am not lying or covering up when I tell people that we are doing OK. All things considered, we are doing well. I am trying not to feel guilty about this. It is strange because I feel weird for not constantly wanting to cry or having that crushing feeling in the pit of my stomach. Am I still devastated by this situation? Yes. But I think I am coping and dealing with it in my own way. Eric too. We have tried to gather as much information so that we are well informed and know what to do next. This is all the control we have right now.

I think the turning point for us was the day that we heard the good news about Logan not having the marker that can negatively impact prognosis and also that his body is responding to treatment. We shed some tears of relief, and then started to feel more optimistic. Not exactly like we can see the "light at the end of the tunnel," but more like "we can do this." It is a long course of treatment, but it is already working. Am I going to worry about all the things I cannot control? Yes. I will wonder if the treatment will continue to work, and he will go into remission and stay there. Even when this treatment is over, I am sure I am going to always wonder if it will come back. I will probably just be waiting for that to happen for awhile, but since that is not something under my control I will try and let go of that stress (for the most part).

I am still not my usual self. I am more organized in some areas, but less so in others. If it has anything to do with Logan's appointments or our daily schedule, then I am on top of it. If it pertains to keeping germs at bay, no problem. But when I make a grocery list and go to the store, I forget important things. I even forget some of the things we get almost every week. Five o'clock rolls around, and I haven't even thought about what's for dinner. Not that we eat at 5, but I usually have something in mind and am ready to start it. This is not me, and it makes me even more appreciative of people bringing food and Gail for organizing this.

So, we are doing better. We are still holding our breath and not making plans for anything beyond the next couple of weeks. We want the results of his bone marrow test on July 5th, so that we know the "roadmap" for his next phase of treatment.

Here is a video of our little Superman with his cape flying behind him on the swing.