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.

A normal lab value!

We had a nice short trip to the doctor's office today for a lab test and quick exam. Logan's blood work looks good, and his platelets are actually in the "normal" range. This is a first since his diagnosis, so is something to celebrate. Other numbers are improving, but still are lower than normal.

Logan has been doing pretty good. I was going to say his eating has slowed slightly, but this morning has proven that wrong. He ate breakfast (some pretzels and a bowl of cereal), and then when Alexis ate he wanted whatever she was having too. Then he ate two cheese sticks at the doctor's office. Then I was able to put him off for about an hour, and he just had a snack of pretzels (and is also finishing Alexis' and my snack of popcorn). He promptly put the bowl of popcorn in his lap, and had a meltdown when we just wanted it where Alexis could reach too. Don't dare try and take food that he wants!

Next office visit is on Thursday morning for labs only.

No fever so far

We are holding strong with no fever, so that is definitely good news. Logan is such a trooper. Begging for food aside, he is really hanging in there. He definitely gets tired and grumpy, and his lifestyle has changed significantly. Instead of endlessly running around in the yard, he prefers to swing (as long as we will push him) or stand still and squirt everyone else with his new water gun. He gets tired going up the stairs, and will huff and puff a little. I think this is due to his low blood levels and the extra weight. It is a good thing he has some shirts that were baggy on him and many pairs of elastic waist shorts. I am doing laundry more often because he only wants to wear his Cars, Buzz Lightyear, and Superman shirts (he was picky before about choosing his clothes, but now is even worse).

We have doctor's appointments for labs on Monday and Thursday of this week, and then Chemo on Friday. This week is the same routine as last week, hopefully without the blood transfusion. Then the next week is the last week of this first treatment month (Induction). On July 5th we go in for a bone marrow test and hope that MRD (Minimal Residual Disease) test is good. They tell us that they hope that all Leukemia cells will be gone from the marrow at that point. Though we will still be looking at a 3+ year course of treatment that has been shown to prevent relapse.

Here is a picture of Logan from yesterday. He did not want to take a nap, and decided to watch a movie for "quiet time."

Thanks to many

I am overwhelmed and humbled by the outpouring of support we have received. Not only has our family supported us like we knew they would. But also friends, neighbors, friends of our family, coworkers of family members, our coworkers, former coworkers, and even friends of friends. It is amazing, and we cannot say thank you enough. But I am going to try.

As I said before, my dad's coworkers sent toys and a gift card. My mom's friends and my Aunt Vickie sent toys and a card. John and Terry sent a cute crab and book. Leigh and Peg brought Starbucks (you ladies know my weakness). We received many toys in the hospital from the staff through many organizations. we received a "Bag of Fun" from the Gabby Krause Foundation that included games, a book, many toys and a portable DVD player in a really nice backpack that can be one of our "hospital/doctor office bags." Pam made sure Logan had a prayer flag up at Vail Rocks. My friend and coworker Gail brought me a couple of books about learning and dealing with childhood cancer, and she is also organizing meals to be brought in for us a couple times a week to ease stress. Thanks Carol and Sarah for providing food to us this week (yummy!). We received a gift card to Toys R Us from Margie, Sally, and their Mom that was more than generous enough to purchase something for both kids. Cathy brought a handmade blanket, sticker book, and monkeys for both kids. Katie and Deb sent interesting articles. Karyn and her family kept Alexis all day having fun when I had Logan at the hospital for a blood transfusion. Amy took Alexis bowling for a fun afternoon out of the house. Wojo (sorry I have a hard time calling you by your first name) took Alexis to the pool with her family and kept her for a day of fun.

But even above the gifts is the outpouring of support. Our neighbors have purchased jugs of hand sanitizer so that the kids can play clean and safe for Logan. Friends are reconsidering planned visits if they even suspect that they are not well, and we really appreciate all the caution to keep our little man healthy. The hugs, thoughts, prayers, hopes, wishes, calls, texts, emails, comments on this blog, likes and comments and messages on Facebook, and cards. Everything and all this love means the world to us. It is working. Logan is responding well to treatment, and we are stronger because of all of you. THANK YOU, THANK YOU, THANK YOU.

2 more weeks to go

Logan had chemo today. We took him in, and they talked a little more about the blood work from yesterday. They said that his "counts" are now coming up as we knew, but they are actually coming up sooner than they would have expected. This is a good sign that they are recovering quicker, and he is responding well to treatment. Our main concern right now is that yesterday and today he had a little of a fever. Nothing too high, but between 99 and 100, and once it was a little over 100. We have to monitor this, and hopefully it will stay down. If he goes over 101 even once then it means going straight to the hospital. So, please think, pray, wish, hope, whatever you prefer, but please send some positive energy our way to keep him well and at home. We appreciate it.

We still have two more weeks of these steroids. The end of this month cannot come soon enough. This poor child just wants to eat, and I am not letting him have whatever he wants. Distraction and putting him off only works for a short time. I feel mean, because he is just hungry. I know in my brain that I cannot give him anything and everything. But my heart hurts when I have to tell him no, and he says "I'm still hungry." And then he cries.  Worst. Mother. Ever. He doesn't say that, it is just how I feel.

While still grumpy, he is loosening up a little at the doctors office. He even smiled at a couple of the ladies today. And he didn't completely melt down when we took his shirt off so they could access his port (aka "Bob" they don't call it that, we just gave it a name) This is major progress.

Keep on keeping on

Not much to report today, which is a good thing. We went to the doctor for labs, which all looked good. His  ANC which is a reflection of the white blood cell count is still low which puts him at risk for getting sick or an infection, but it is improving. The nurse was telling me that it is still low so we need to keep up all the precautions. Then she told me the number was 700, and I was so excited. This is double what it was earlier this week, and almost 7 times higher than what it was at one point. His platelet count is holding strong even though it is below normal as is the hemoglobin count. So, those mean that he does not currently need blood products, and that is good.

All that aside, I feel like the worst mother on the planet. He is so hungry all the time and craving salty foods from taking the steroids. I am doing my best to pace him and add in some healthier foods, but he is not liking it. Logan would eat constantly if I let him, but then he just looks miserable. He does not take being told no very well, but I can usually bargain with him or distract him. The best distraction is to go outside and swing on the fort. We also even drove up to Eric's work today just to take him his watch that he forgot. (Really we were just looking for a reason to get out of the house without exposing Logan to unnecessary germs.) So we took a drive, and Logan even took a little catnap. Tomorrow is chemo, but it is a fairly quick injection so should not take too long at the doctor's office.

The joys of steroids

One of Logan's chemo treatments is Dexamethasone which is a steroid. Some of the side effects are increased appetite, insomnia, water retention, and changes in mood/behavior. He had been sleeping 12+ hours/night, but now he is waking up about 6:30 (or even earlier today). I do not think this is because of insomnia. I think he is waking up hungry. He immediately asks for "lunch" which has become every meal, snack, etc. Not sure why, he usually knows breakfast, lunch, dinner and snacks. But now, he wants to eat constantly. He seems insatiable, and we have to make sure they are small meals because he will get overfull and then throw up. I can try and distract him, but this does not last long as I think he is truly hungry. Between the appetite and the water retention, he has rounded out considerably. His face is round, and he has quite the Buddha belly (see picture below). Honestly he seems like a pregnant lady. His bellybutton is flattening out and he seems to have cravings. He keeps asking for food we don't even have in the house (and don't usually have), and I cannot get him to eat much healthy food like fruit which is one of his usual favorites. Logan's mood has also changed. As I have said before, he is usually very happy and charming with lots of giggles. Right now he is pretty cranky and has no tolerance for frustration. We do get occasional giggles when he is swinging outside or helping out, and those are precious.

Some good news, finally

Well, I just heard from our doctor about some pending results. He had informed us yesterday that they were running some more sophisticated tests on the cytogenetics of the leukemia cells to see if the initial results of an "amplification of chromosome 21" were valid. After the more complicated tests and many eyes looking at them, it turns out Logan does NOT have this less favorable marker. This means better prognosis, less intense chemo, and less worry. YEAH!

Also, they took blood last week on day 8 of his chemo to check for MRD. This stands for Minimal Residual Disease, and it tests how well the chemo is working on the cells. The doctor reported good results at 0.001, and this is also good for overall prognosis. The goal of this first month of treatment is to completely rid Logan of the disease. Then he has many other phases of treatment before he enters the Maintenance phase. His overall treatment will be just over 3 years.

So, everyone, please keep up all of the positive thoughts, prayers, well wishes, and anything else you are doing to send healing our way. We appreciate it, and I think it is working.

How it all began

Many people have asked us how we found out Logan has Leukemia. What made us go into the doctor? Well, Logan is a very happy charming little boy. Don't get me wrong, he is still a two year old and can pout like a champion, but overall he is very happy. So, when he started being pretty cranky for a few days, and then we noticed that he had a fever we thought something was up. Was he teething? Nope, can't find any new teeth or swollen gums. Is he getting sick? Nope, fever comes and goes, no runny nose, cough or other symptoms. Well, he does seem to have less of an appetite. So, after about 2.5-3 weeks of these random symptoms, we just became tired of him being cranky and us not knowing what was going on. Then we called our pediatrician, and they had us come in the same day. I described what had been going on, and she decided to run some blood tests and take a urine sample just to see what was going on. She mentioned checking for Mono among other things. Never in a million years would I have expected the phone call later that evening telling me that the blood tests were abnormal and she thought we should go to the Children's hospital that night. When I asked what the abnormal results could mean, she mentioned that it could be Leukemia but that they would be able to do the tests and figure it out at Children's. Off we went, they confirmed it, and we were admitted that night.

So, this is how this all began two weeks ago tonight. Now Logan is on day 12 of chemo. Almost halfway done with the first month which is referred to as Induction. He has had three infusions of platelets, and after today he has had two blood transfusions. He is grumpy, but is hanging in there. He is a strong little boy, and we love him so much. Here is a picture of him waiting to go home after the blood transfusion today during which he was so patient even though it took almost 5 hours.

Happy Father's Day

Happy Father's Day to Logan and Alexis' dad, Eric. I love you so much and you are such a strong husband and father. You are keeping me grounded in this fight, even though I know you are coping with it too. Also Happy Father's day to Merle, Glenn, Rosen, and Harlan our kids' grandfathers and great-grandfathers. We are fortunate to have a great supportive family who are willing to help at a moments notice.

Logan is doing well. He played outside a lot yesterday, even with some friends and seemed to have more energy. Though, he is a bit grumpy from the steroids, chemo, and from just being tired. I am encouraged seeing him like this. And it makes for a nice weekend.

We also wanted to extend a thank you to my mom's friends and the men at my dad's shop for sending us gifts for the kids and a gift card. We really appreciate it, and the kids were so excited to open the boxes yesterday.

New concepts

This whole being honest about how I am doing is a new concept for me, and so is accepting help. Usually, no matter what, if some one asks how I am doing then I always answer in the positive. And I always decline help or offerings. Not sure why, even if someone offers me a drink in their home or to do something for me, I never accept. I don't want to put people out, or I feel like they do not really want to help. I know this is not true. The majority of the time, people do not offer to do something if they are not willing to do it, even happy to do it. I am usually the one offering, and I always want to help others.

I am trying to be honest about how we are doing: this is a struggle. I am sad, scared, worried, in denial, and just downright mad at everything. These feelings come and go. I will feel like I am doing better, when in fact I am just distracted. Then reality sets in. This happened at the hospital a few days into our initial stay after the diagnosis. I was doing better, and no longer sick to my stomach. I had been busy keeping Logan happy and occupied while attached to all of the tubes and undergoing procedures, surgeries, etc. Then when Eric got to the hospital after work, I went down to get us some dinner and stepped outside the hospital. It seemed to hit me all at once. I do not know if it was the fact that it was the first time I stepped outside of the hospital walls into "reality" and it was all still true. Or maybe it was because I was alone and no longer distracted. Then I have been busy cleaning and organizing since we have been home. Probably because that is one of the things I can actually control right now. And if you know me, I like to be in control and for everything to be planned and predictable. I do think I am settling in, and accepting things. We can't make it go away, that is not something I can control. I can just try and keep him happy, and try to make Alexis' summer as fun as possible (which will be a challenge at this point).

I will do my best to accept help. I know I will need the support and offers of assistance, and I appreciate them. It is just hard for me, so be patient. We are doing well right now, and trying to settle into a routine. We want life at home to be as "normal" as possible. Of course I realized this morning that I haven't even purchased Fathers Day cards, not to mention put them in the mail. Well, they will get there eventually. Everyone knows that we love them.

Chemo and a talk with the doctor

Logan did well with his lumbar puncture and chemo today. He was not a happy camper that he could not eat or drink anything before though. We definitely had a cranky little man on our hands until they gave him the happy drugs. He breezed through the procedure like a champ and then proceeded to drink his milk and eat 3 little bags of goldfish crackers.

Then we met with the doctor since they finally have the results of the cytogenetics tests on the leukemia cells. When they did his first bone marrow biopsy, they sent it off for genetic testing to find out more detail regarding the leukemia cells. The results of this could impact treatment in a couple of ways. If the results show "more favorable" genetic markers then he might need less chemo. If the results show "less favorable" markers then it could impact treatment the other way and also impact prognosis. Well, Logan's results came back with what was called an Amplification of chromosome 21. Of course, this is a less favorable marker. In the words of the doctor: it is a more difficult leukemia to treat. Though he still seemed optimistic. He told us that they typical cure rate for standard risk Leukemia is somewhere around 91% with the standard treatment. With this amplification of chromosome 21, it lowers to 72% with the standard treatment, but when they give more intense chemotherapy they can get it back up into the typical cure rate range.

Needless to say, we were not excited about this news. It has been a hard couple of days. Logan is so tired and we can just tell he does not feel well. He threw up yesterday when I gave him his medicine, and when he cries it just breaks my heart. He has started telling me that the medicine is not making him feel better, so I guess he does not get the whole concept of delayed gratification. Though he is getting much better about taking the medicine today, so that part is getting easier.

Thanks to everyone for the outpouring of support, we appreciate all the thoughts, prayers, cards, gifts and offers of assistance.

A quick pick me up

Getting platelets before his lumbar puncture/ spinal tap tomorrow. He was playing up the pouty face, but then smiled for me. His platelet count is low, just like all of his labs. Thankfully this is a short visit to the hospital instead of a stay. I don't think he believes me that we are going home.

Preventing illness and trying to laugh

Well, this first month is pretty intense with Logan's chemo, and his blood counts are very low. We are trying even more to wash our hands and keep surfaces clean. We are also trying to have everyone we come into contact with wash or sanitize their hands. Eric installed industrial hand sanitizer dispensers next to every door to make it easier. We even made a handy sign that I laminated and placed on the front door, and I am going to try and insert a picture of that here. Hope that worked. I was trying to make the sign in the hospital, but could not think straight so it just said "Please wash your hands, thank you." Well that evolved into something that is serious, but when I saw it made me laugh out loud. The people around me thought I was crazy, but at least it was just family.

This also is complicated by the fact that both our children have birthdays this summer, and we usually have parties at our house. I think we are going to limit the guests, and again ask that everyone wash their hands (multiple times). We are also going to include a line on the invitation that asks people not to come if they are sick or have any signs of illness. Is that rude? I guess it doesn't matter if it is rude or not, I would do just about anything to keep him well. Depending on how he is doing by then we may even not really have him participate much in his sister's party. If he is having an especially hard time, I will just move the party to a park or some other place. This way our daughter, Alexis, will still have her party and her special day. I worry a lot about her being left behind or not having enough attention. I cannot take away her birthday party. She is already giving up much of the activities we had planned including a vacation and many trips to the pool. I know he can swim with his port, but I just don't want to expose him to crowds and germs unnecessarily.

So, wish us luck with blood tests tomorrow, and then chemo through his port and in the spinal fluid is on Friday.

First clinic visit

Well, we survived the first clinic visit. Just one finger poke, and he was then able to pick out a toy. Not too traumatic since they had a train set for him to play with in the waiting area. His counts are low, but not lower than expected for this point in his treatment. We like the clinic and the doctor, and it is much closer than driving up to the main hospital. So, hopefully he will not need any blood products or and return visits to the hospital before his next bone marrow biopsy. We are keeping our thoughts positive and hoping for no fevers.

Logan is tired. He is sleeping between 12 and 13 hours at night now that we are home. He watches TV a lot and plays a little inside. As he normally loves to play outside, he still asks to do this. So, we go out to the backyard and he will play for a short time. Normally he climbs up the ladder or rock wall and then slides down or asks for help on the monkey bars. He has always liked to swing, but now will do this most of the time he is outside. Since it is getting hot, he often asks to come back in and watch TV. Now, he has always enjoyed watching TV and movies, but is has definitely increased. He did not nap at home before his diagnosis, and has not taken a nap either day we have been home though he is taking several "quiet time" breaks. My usually active little man, is now actually asking to go to bed at night. Keep us in your thoughts and our next big "event" is lab tests on Thursday hoping for "minimal residual disease" and then a lumbar puncture (spinal tap) and 2 different chemo treatments on Friday.

Worst day of our lives

June 3^rd was the worst day of my life. My son, Logan, has Leukemia and I am in shock. I don’t want to believe it. I want to change it. This sucks. Why? Why this happy, charming, beautiful boy? Why any child? It’s not that I think I am better than anyone else and therefore my child should not get cancer. No child should, but definitely not mine.

June 6th

Here I am almost exactly three days later, and I thought I was doing better. He had a good morning, and told me "my tired's all gone." But now it is night time, and am I sleeping next to him in the hospital bed? No, I had to get up because I was crying so hard I thought I would wake him. He is tired, he does not feel good, he has dark circles under his eyes. And then he said “Logan hurts.” He is still sore from getting the port inserted into his chest yesterday, so his neck and shoulder hurts. And he is also sore from the bone marrow biopsy and spinal tap, so he won’t bend over and pick anything up off of the floor.  And I think he just doesn’t feel good from the chemo that started today.

I fear that he will eventually hate me because I am always making him take medicine. He doesn’t understand, and I can’t bear to force him to take it from the nurses. He is just so scared when they come in and want to give him stuff. He doesn’t scream with me, but still doesn’t like it. It would be so much easier if I could just take the pain or not feel good for him. I would do it in a second, because it is breaking my heart.

I fear that going through this will change him more than just physically. For almost 3 years he has been such a happy little boy, and I do not want that to change. I know that he doesn’t feel good, but I just want to hear him laugh and see a big smile. He is still so sweet, and is constantly asking for hugs. He needs that comfort often, and I am so appreciative that he will ask when he needs it.

June 10, 2013

We came home last night. It was an emotional roller coaster. Are his counts ok? What will today’s blood work show? He was on a modified diet for about a day and a half to get some of the toxins out of his blood. The only thing that really impacted him was the fact that he was limited to only 4 ounces of milk for the entire day. And when we found out about that restriction, he had already drank about 12 ounces that morning. All he wanted to drink was milk, I think it was comforting. Well, we survived that, and his blood chemistry was fine even with bending on the milk restriction. So we are finally home. We were gone seven days and 6 nights. When we told him we were going home, I don’t think he believed us. He kept asking “my white house?” When we arrived at home, he blended right in playing with Alexis with the help of his new Cars balloon. Then we tried to get back into the normal bedtime routine, and he did not put up a fuss. I was so relieved, and I was exhausted too so we went to bed shortly after.