Trial run

Today I am working. It is not officially back to school time for me until next week, but I am on a committee that is meeting for a few days this week. It is a good test for both me and Logan. I dropped him off at the home day care with Alexis, and he was pretty happy. He was a little clingy, but no crying on either of our parts. Usually when I work, I put my phone on silent. I think those days are in the past. I think it will be good for him to be around friends and get back into a normal routine. But it is still hard to let go. I think this summer together has been good for both of us (maybe mostly for me). Kind of like when he was in the hospital that first week and I was so relieved that he wanted me to sleep in the bed with him. OK, wish me luck!

More energetic

Logan is starting to eat a little more, and therefore have more energy. He even ate three whole chicken nuggets and some chips for lunch today along with drinking his milk. This was after actually eating some cereal and milk for breakfast. Doing much better on that front which is leading to more energy. We have continued to venture out in public since his numbers look good. And while he enjoys it, I end up carrying him around the whole time which is a little exhausting for me. But it is a little hard to say no when he stands right in front of me, gives me that charming smile and asks "You carry me, please?"

Thanks to Amber for bringing dinner on Friday. Thanks to Carol for taking Alexis for some fun a couple of days this week, and also for just sitting and talking. Thanks to Pam for bringing us some Love Hope Strength bracelets for those days that we need a little extra support. Here is a link to Love Hope Strength if you want to know more about this great organization, and a link to Pam's fundraising site through the Leukemia and Lymphoma Society's Team in Training with some information about her own story of cancer impacting her family.

Chemo day

Logan had his third consecutive lumbar puncture (spinal tap) to put chemo in his spinal fluid today. This is three weeks in a row, but now he does not have another of these for about 6 weeks. Since he did not have any headaches last week, they gave him IV fluids and had him stay flat for an hour again today. They did blood work too today, and things are still looking good. His ANC is lower, but still in a good range at 1600. That number has been all over the place zigzagging way up and down over the past month, but apparently that is normal. We then went to get his hair cut since it was getting a little shaggy around the back and sides. I did notice that it made some of the thinner spots a little more prominent, but not bad.

We also officially met a new friend at the clinic today: Delaney. Stacey, your comment did not show up on any of the blog posts (it can be temperamental if you do not have a gmail account, and even if you do), so I do not have your email.  I truly hope you don't feel like I was trying to get away from you today, I just felt guilty keeping you from Delaney and the doctor this morning. I would love to talk to another mom who is going through the same thing.

Here is a video of Logan last night attacking the bubbles with his wand, and a picture of Logan and his new haircut:

Admitting it

OK, I am going to admit it and face reality: Logan's hair is thinning. We have started to notice more hairs on his clothes, and on the back of his little Lightning McQueen chair. I also ran my hand through it and came up with a few today. I was just hoping that his hair was laying flatter because it was a little longer and he wasn't as sweaty at night, but I think the reality is that there is not as much hair. Don't get me wrong, he still has a lot of hair right now, but who knows how much he will lose. It could just stay thinner, or it could all come out. Time will tell.

On another note, it is amazing the difference in his eating habits from a month ago. I can actually count the number of bites he puts in his mouth each day. And it is funny that today is a big appetite day for him.  So far he has had 4 small bites of a Pop Tart, a WHOLE chicken nugget, several french fries, a few bites of popcorn, a couple of chocolate chips, and a half of a fish stick. And we haven't even had dinner! What is the big deal you ask? This much food that he has eaten just today is equal to about as much as he had the previous three days combined. So, yes, I am happy and excited that he has had this much today (even if he does not eat anything else). He actually has asked for food several times. And he did a great job going to see a movie today.

Some good, some bad

There is not a lot new for us to report. That is good, because sometimes "no news is good news." Logan is just hanging tough. He is tired much of the time, and wears out quickly. This is not helped by the fact that he eats practically nothing, and does not drink much either. We are still having random puking episodes, but the good thing about him not eating is that there is not much to throw up. Not so messy, I guess. Taking the Zantac did not seem to help, and actually induced the vomiting once. So, we just plug along. Thankfully he did not have the headaches like the week before, so some of the precautions seemed to help. Logan has one more spinal tap/lumbar puncture for chemo this Friday, and then just the same oral chemo for 2 more weeks in this "Consolidation" phase. Then we wait to see if his blood work is good enough to pass him on to the next phase.

Thanks to Brenda for providing food for us last week, and Gail to bringing by Starbucks and just staying to chat awhile. And also thanks to Kim for bringing us dinner for tonight.

Changes

Logan is on day 46 of chemotherapy. It has been 7 weeks since we learned of his diagnosis. It has gone quick on one hand and seems like forever since this has been our reality on the other hand.

I feel like he is a different kid at times and he even looks different. Part of that could be that he just looks tired and mellow much of the time. He is just not the same kid, and I know that is to be expected. It just makes me sad. He is not as joyful and carefree. Before, he laughed a lot and loved to be tickled. He does not want us to tickle him now. I know that sounds trivial, but the giggle that came out when he was being tickled could improve your mood on any day. Logan is more timid and whiny right now. I know he does not feel great, and he has been through a lot in the last 7 weeks. I also know that we have been waiting on him and pampering him which is hard not to do. But he has gotten used to it, and now does not want to do anything for himself or do anything he does not choose/think of. His eyes always look sleepy, and he just does not have that energetic light in them. He occasionally just falls asleep on the couch. He still has a few extra pounds from all the food he ate during the first month when he was on the steroids, but at least he is back into the clothes that he temporarily outgrew. His lack of appetite seems so drastic when compared to last month, and at this rate he will lose those extra 4 pounds pretty quickly. Logan's hair seems to be laying different. This could be because he needs a haircut, or it could be getting thinner. I really can't tell if it is thinning, but I still don't see hair in the drain or on his pillow so that is encouraging.

Logan is doing a great job and taking it all in stride. Except for the medicine which is still a struggle, but we get through. He is extra sweet and affectionate at times, and super grumpy at other times. He finds ways to play without expending too much energy like swinging or driving his car. It is just so different than the never stop kid that we were accustomed to, and that is hard for us. The new normal is taking a bit of getting used to. And just as we get the hang of it, I will be going back to work in a little over 2 weeks. I have been so grateful for the timing of all this, and that I could spend the summer with him and coping with the first couple of months. But, school starts soon, and I will be working and Alexis will start 1st grade.

Let's try this

Logan had another lumbar puncture (spinal tap) today to put chemo into his spinal fluid. Since he had trouble with a headache and ensuing vomiting last week, they had us take a few more precautions. They gave him some fluids through his port after the procedure and also had him lay flat for about an hour instead of just 30 minutes. He tolerated this pretty well, and just stayed flat eating some cereal and drinking milk. I think it also helped that they gave him some extra sedatives before the procedure because he was a little squirmy last week. This week, he still did not like being held on his side in the fetal position (we heard him tell them "NO" loudly), but he tolerated it better and it helped him stay flat longer. The cereal that he ate this morning after the chemo was the most he has eaten in 2 days. He really has not been eating, and I think his stomach has been upset (he threw up again this morning). But, the doctors are having us give him some Zantac for a few days again to see if that helps. Hopefully all of these extra steps will help him feel better. One thing he loves right now is driving his battery-operated Francesco around the neighborhood.

Random puking incidents

Well, we had another random incident of being sick last night. Logan was doing fine, but then he complained of his stomach hurting. I asked if he needed to go to the bathroom, was gassy, or needed to throw up. He answered "no" to all of this. At that time, Logan just wanted a hug, so of course I gave him one. He promptly threw up all over both of us. So, after cleaning up and both of us taking showers, he was right as rain again. No further issues. No real explanation either. I don't know if it is just the new chemo that he takes each day, and he has a constant upset stomach. Hopefully this will pass soon. Most of the time, while I know he has Leukemia, I can usually shove it to the back of my mind. There is nothing like this to put it right back in your face: Logan has cancer, and it stinks. Poor guy, he is hanging in there and thankfully he recovers quickly. He has such a great spirit, and is so happy despite everything else.

Holding steady

Logan is doing well and has had no more fevers since Sunday evening. We are thankful for that, but are also noticing changes in him since he stopped the steroids and medications from the last round and began this newest round. He had a lumbar puncture (spinal tap) last Friday with chemo being inserted into his spinal fluid. This is the same chemo med that he received two times in the first month. He also started a new oral chemo on Friday night called Mercaptopurine (aka 6MP). This pill is much larger than the steroids and therefore a little more difficult to crush and dissolve into some water and cherry syrup, but we are managing and he is taking it. He is definitely more tired overall, and his appetite is almost nonexistent. He eats a little and is drinking milk. With the new medication, he cannot eat either 2 hours before taking it or 1 hour after taking it. We thought this would be difficult since he has been drinking milk like crazy and had started eating a snack at bedtime. So far, it has not been an issue since he has not been eating dinner (maybe a few bites) and we are getting by with just juice at bedtime with the medication. Logan is losing weight, but not rapidly so I think it is mostly just coming off the steroids. He still has not lost his hair, and I cannot tell that it is coming out. I do not notice it on his pillow or in the drain after a bath and it still looks thick. I have also  noticed that he has strange breath. It's almost acidic smelling, but difficult to describe. I guess "chemical" is a good word to describe it, and maybe that is why he doesn't want to eat much. It is possible that everything he eats tastes like that. Logan does still like to play outside, and here he is dancing last night (can you guess that he loves his new Iron Man shirt and his PNF shoes):

Bowling video, and update

OK, apparently the 14 second video was too big to just upload from my phone. So, I loaded it a different way, and you can go to this link to see Logan bowling. It is pretty cute. He was just having so much fun.

Update: Logan is doing better since his rough evening on Saturday. He has been playing with his new toys (a few Superman toys that he got from the family, his Avengers umbrella that Alexis picked out, and an Iron Man from Peggy). His appetite is pretty much nonexistent over the past 36 hours or so. He even turned down donuts for breakfast yesterday, which is a pretty big deal for him. We now think that his vomiting episode on Saturday was a combination of the spinal tap making him more sensitive to changes in air pressure. He complained of a headache and became sick about the same time that a front moved through our area and it started raining. Eric and I both are sensitive to fronts moving through, and usually end up with nasty headaches too. As I said, he has been doing well since then. He is tired, and even took a nap yesterday afternoon. He had a little fever last night, but not 101 so we haven't had to call the doctor yet about it. We are just keeping close tabs on him. Hopefully it is just a fluke, and he is not coming down with something. Thankfully it was back to normal when he woke up this morning, but is currently over 99.  Any positive thoughts, prayers, hopes, wishes, etc are appreciated to keep him well and out of the hospital.

Bowling party recap

So, I didn't post this on Friday night because I was too exhausted from the party. Then I didn't post it last night because we were having a rough night. So, now I am posting. Because Logan has been doing so well, we let him go to his sister, Alexis', bowling birthday party. I was a little worried that he would be too tired after the chemo and spinal tap on Friday morning, but he did well. He had an amazing time, and loved bowling with the other kids. He almost stole the show he was having so much fun. It was a great night, and lifted all our spirits. Not to mention that everyone could go to the party instead of him having to stay home. I tried uploading the video, but am currently having issues. I will try again tomorrow.

Rough evening

We had a good day including a drive up to the mountains today. Logan was having fun, though became a bit tired. After we were home, he was a little grumpy but OK. Then he was complaining of his head hurting, then started throwing up. Poor thing, he just didn't feel good. We were able to get some medicine into him, and then he fell asleep. Hopefully he will wake up soon because he has his weekend medicine to take and his new oral Chemo that he takes each night.

Ready for round two

We went to the doctor today for lab tests to see if he can start the second month of chemo. Logan's blood counts were much lower, but he still "passed." That means that we can start the "Consolidation" phase of chemo tomorrow as scheduled. I guess this is a cycle we will go through each month: finish chemo, have blood tests, and those tests determine whether or not we keep going or he has to take a short break before the next phase starts. It is pretty common that the chemo drugs will cause his blood counts to drop, so this is something they keep track of pretty close. It also tells us how susceptible to infection or getting sick he is at any given time, and how many precautions we need to take. So for now we are chugging along, and he is even able to go to Alexis' birthday party tomorrow. Thanks to Leigh P, Pam C, and Peggy for bringing food and gifts this week. Here is a short video of him the other day dancing. It is hard to hear, but there is music in the background while he was eating.

Cool new shoes

Yesterday was a great day. Not only did we find out that Logan is in remission, but he also had a personal delivery of some very cool new shoes. These shoes are courtesy of Peach's Neet Feet, were sponsored by Brenda Layton, and are custom painted by a very talented artist, Ron Rodasti, at Illumination Tattoo based on Logan's interests. As you can see his have Superman and Lightning McQueen. I really love how he incorporated the orange Leukemia awareness ribbon with the flames and number 95. Logan is in love with these shoes, and didn't take them off most of the day yesterday, and already had me put them on him today just sitting on the couch. We are so grateful for this, and it definitely brightened his day. Also, the hope bracelet that Logan was wearing yesterday and I am now wearing came in the package.

Good News: Remission!

We went in to the doctor today to find out the results of Logan's bone marrow test. We found out the MRD is 0 which means there is NO EVIDENCE OF LEUKEMIA in his system. YEAH! He is officially in remission. That does not mean we are completely out of the woods, and he still has a long three years of treatment ahead. But it is still wonderful news. They gave us this information, a handshake, and then moved on to telling us how the next 7 months will go. My head is still spinning from all the information, it was a bit intimidating. I think we will just take it a day, a week, and a month at a time just like we have been doing since we found out the diagnosis. This is all standard protocol for treating his ALL and preventing relapse. Thanks to everyone for all the prayers and well wishes and everything you sent our way for good results today. We appreciate it and it is all clearly working. Here is a picture of Logan taken today wearing his Hope bracelet (which he decided I should wear at the end of the day, so it is now on my wrist):

Withdrawals

So, Logan's last dose of steroids was on Thursday evening. Over the weekend he had a few withdrawal symptoms including being shaky, having a headache, and a lessening of his appetite. He can still be grumpy, but is overall in a much better mood. His puffiness is going down, and his belly is getting smaller. It is hard to tell in the picture below, but it is much better and he is not so uncomfortable. Everyone kept saying that he looked adorable with the extra weight, and I guess that is true. But he was just so uncomfortable, and just didn't look like our kid so it was hard for us.  Logan's next doctor appointment is tomorrow afternoon, and we will find out the results of his bone marrow test and what his next phase of treatment will entail. His new favorite thing is Iron Man, thanks in part to Spiderman cartoons and a new Marvel series on one of the Disney channels and also a new shirt. This picture is from Saturday:

And this is from today:

Thanks to Emily and Wade, Candice and Seth, and Jen and Rich for providing food to our family last week. Thanks to Eric's cousin Faith and her family for sending an activity box for the kids. Also thanks to Eric's aunt Wylene for sending a package with activities. We also appreciate all the support and love for our parents and extended family and friends. You are all doing so much to help us.

First month down

Logan has survived his first month of treatment for Leukemia, also known as induction. The steroids caused him to gain almost 10 pounds (Which is about 30% of his previous body weight), have upset stomach, water retention, he is sweaty, has a rash, his legs are weaker, he labors to breathe, he has cravings and never feels full, no matter how miserable he feels, and he is grumpy. That is just the short list. It has been hard, but he has been a trooper. He remains so sweet much of the time.

Here are some before treatment pictures of Logan:

And here are some after the first month of treatment pictures:

After the test

Logan did pretty good today. He had a little melt down when I told him he had to wait until after the doctor before he could eat. He actually was fine with that as long as he could have cereal first. He just didn't quite get it, and then when we walked past the kitchen it was traumatic. Once we were strapped into the car, he was OK waiting. He did pretty well getting checked into the clinic, just a bit grumpy with the ladies. He only asked for food a couple of times which was good for him during that time. They took him back a little early and he came out of the procedure in about 35 minutes. And then he only took about 10 minutes to wake up. Logan did not really like having to stay laying down, but he had to stay flat for 30 minutes after the lumbar puncture (spinal tap). As long as we let him drink some milk and eat some chips (his special request) then he stayed put nicely. After we were finished with the doctors and he was checked out, we treated him to lunch, and he was a pretty happy camper. Now we are just waiting until Tuesday afternoon for the results of the test and planning the next phase of treatment. Here is a before the procedure and after the procedure picture.

Happy 4th

Since Logan is doing so well, we decided to go to the 4th of July parade. He enjoyed the parade, but really just wanted to much on snacks the whole time. He did well, and then we came back home for a rest. After that he played outside with friends some. They played in the water table and with the water guns. He was pretty cranky, and not too social. I think he is just uncomfortable in his own skin with all the extra weight. He even told us today "my tummy is squishing me." But at least we are finished now with the steroids, yeah!

Bone marrow tests

So, the first time Logan had a bone marrow biopsy, it was June 4th, the day after he was diagnosed with Leukemia. His appointment was at 2:30 in the afternoon, and he was not allowed to eat anything for at least 6 hours. He was only allowed to drink clear liquids and then nothing for the 2 hours prior to the procedure. At the time, this did not really bother Logan much because he felt pretty bad and had no appetite. He asked for food or milk a couple of times, but was pacified with being told "in a little bit." When they took us in, they explained how the anesthesia, Propofol, would work and that it would work pretty quickly. What they did not mention, however, was that they would inject something into his IV that burned and made him scream like something was eating his arm from the inside out. They let me hold him, which was good, because he was clinging pretty hard to me while he was crying. That combined with the emotional roller coaster that I had been on for those two days made me break down and cry with him. Then as the medicine took effect, he took a deep breath and then went limp. Once I put him down on the bed, the escorted me out of the room telling me that it would be about 30 minutes, maybe a little longer. I promptly found the closest restroom, ducked in and had a hard cry for about 5 minutes. Then my phone rang, and I had to pull it together. After that, I took a walk, and went down to the cafeteria since I had not eaten all day or the night before. I ordered a chicken sandwich, took about 3 bites, and that was about all I could handle. I sat there for another ten minutes, and by then it had been about 30 minutes. They assured me that they would call my cell as soon as they were finished, but I wanted to be there when he came out to recovery. So, I went to the recovery room, and sat there. Every once in awhile, I would see one of the doctors come out. They would tell me that often the first biopsy/aspiration can take a longer time because all the leukemia cells are packed so tightly and are very thick in the marrow. They insert the needle and it apparently drips out looking a lot like blood.  They ended up puncturing both sides, and also doing the spinal tap with the initial dose of chemo into the spinal fluid. It ultimately took 2 hours for them to finish both procedures, and then another hour for him to wake up since he had been so tired.  By then, he was starving, and plowed through a bag of animal crackers and asked for some more food. He was very sore, and did not bend over for almost three days.

This time, we are assured that it should take much less time. It is scheduled early in the day Friday for 9:30, which was the earliest we could get. What has changed, however, is his appetite. We will wake him up at about 7:25 (hopefully he will not wake up earlier), change his clothes, and put him in the car to go. Then we check in at 8:30. We know that he will be asking for milk and food the entire time. He does not understand when I try and put him off for a little bit of time when his belly is full, and I know refusing food all together when he is hungry is not going to go smoothly. Poor little man. Wish us all strength and patience.

Looking good heading into Friday

Logan had a doctor's appointment today just for a quick check and blood work. His numbers continue to improve, and his ANC is now in the middle of the normal range. It is at 3600 ("normal" range is 1400-6600), which is a far cry from 100 at our lowest. This all means that his immune system is improving and he is at a lower risk of ending up back in the hospital in the immediate future. We still have to keep him from being exposed to unnecessary germs because if he has a fever then he must go into the hospital. But his numbers right now make him less susceptible.

He is still eating like crazy, and gaining weight rapidly. As of his appointment today, he has gained 8.5 pounds. He looks like a different kid, but is still very sweet (Unless I am trying to put him off from having more food).  Logan is encountering problems that he never had before. His feet fall asleep when he sits on his knees at the dinner table. We have started using a step stool for a booster, but the hard surface makes his backside hurt. Actually, sitting in general makes it hurt if he doesn't move around much to relieve the pressure. Poor kid.

As for me, I am just feeling "blah." Not that anything is going wrong with Logan and his treatment. I think it is just one of those "my kid has cancer, and that sucks" kind of days. This will pass, and get better.

Also, I forgot last week to thank Sarah for taking Alexis for a day of fun with Natalie and the whole family. Thanks to Carol and Hannah for watching Alexis today so she could play with the girls. Thank you Bryn for watching the kids yesterday when I had an appointment. Thanks to Emily for bringing me some soda yesterday, and a thank you in advance for bringing dinner this Friday. Thanks to Leigh L and her family for sending a box of gifts for the kids and a gift card for Eric and I. We appreciate everyone so much.