Entry 26

I have a few days to catch up on! Let me start with yesterday. Ian and I went to the Deanna Rose Farmstead. It's this really cute place that has lots of farm animals and activities to do. We saw a bald eagle, bobcats, bunnies, horses, buffalo, etc. There is a section there where you can feed baby goats with bottles and it is crazy! As soon as they see you with a bottle, they come running. The bigger ones always butt in and push the smaller ones out of the way. Ian was getting mad a them because they kept jumping up on me and he was saying, "guys, don't jump on my mom!" He did really well with walking around and playing.

Today was the last Vincristine chemo treatment for another month or so. Ian is getting pretty used to the routine. He was alot less sulky on the drive up. He knows exactly which nurses weigh and take his blood pressure so he is friendly with them. When he is done, he goes right to the prize box and helps himself. Unfortunately he also knows the nurse that has to poke him so he pretty much starts crying the second he sees her. It was kind of funny because when he was all done, the nurse had to take the needle and tube out of his chest so we could go. Ian was more than willing to hold up his shirt at that time so we could leave. Because of the blood thinner he is on, she had to hold pressure on his chest for a minute tohelp it stop bleeding. Ian knew that this was taking longer than normal and was put out about it. He looks right at her and with his meanest, most annoyed voice, said, "DOCTOOOOR!" I had to laugh. His tone was like, "what are you doing? This is not the drill, leave me alone." Mike got a kick out of it too. I don't know, maybe you had to be there, it's hard to describe.

Ian crashed on the way home. I have to admit, I was worried I was going to fall asleep on the drive as well. I was singing to the radio, chewing gum, anything to keep alert. These appointments are so early because he can't eat or drink so they try to do them first thing.

We have a darling friend who organized a summer olympics games for some of the kids in the neighborhood and from church. It was so cute and fun. I didn't know if Ian would feel well enough to go, but the girls got Ian excited about it and he wanted to see his friends. There was a big inflatable water slide that Ian was having fun on. It was kind of sad though because he only could climb up a few times and then his feet started to hurt (side effect from the vincristine) and he didn't have the strength to do it anymore (side effect from the steroid-this steroid isn't the one body builders use, it actually shrinks muscles). He became really frustrated and started crying. Those moments are hard on me. It's hard to explain to him that it is only temporary and he will get his strength back. He knows it is something he should be able to do with no problem and when he can't, he gets upset. We'll keep working on it. He is now off the steroid and he is now starting an oral chemo so those side effects should start going away soon.

Entry 25

Ian has been asking to go bowling for a long time, so we went yesterday. I am so disappointed, I completely forgot to take the camera or I'd have pictures! He was excited and happy to be there so he was great about wearing his mask the whole time. I didn't know how he would do because he has had some difficulty walking without being on his tiptoes or limping. He did great! In fact, I am embarrassed to say that I beat him by only 1 point. It was a long game for it took a full minute for his ball to roll down the alley, it went so slow; but he hit a good amount of pins every time. Towards the end, he would watch and start jumping up and down as he saw the pins begin to fall. He could barely clear the air as he jumped, it is nothing compared to what he used to be able to do, but I was so happy he had energy to try it nonetheless. As the weight continues to come off and the vincristine side effects wear off (it is effecting the nerves in his hands and feet), he will be back to where he was if not even better.

Our neighborhood pool opened as well so we went to check that out for a little bit. The water was freezing so we didn't really swim, but Ian enjoyed walking around up to his knees in it. Anything we can do to help him feel normal is so important. He was happy to be there regardless.

Entry 24

I keep looking at Ian and thinking, "He looks flushed." I feel his cheeks and he is fine, no hint of sweat. Then I realize, it's because he actually has color now since he isn't so anemic. It's been so long since I've seen him with color, I keep forgetting.

He is definitely back personality wise. The emotional side caused from the steroids is pretty much gone. It is so fun to see him be wild and a rascal again. All the weight he put on is beginning to leave, although most of you still probably wouldn't recognize him.

We had our first outing with him yesterday since this all began a month ago (it's hard to believe that it's only been a month, it feels so much longer). The girls and I had a piano/harp recital so he and Mike came to cheer us on. (You see him here in the picture holding my trophy for me). Then we got some dinner at our favorite thai place where we happened to run into some friends who coincidentally were there as well. We are hoping to take him swimming or bowling tommorow while his counts are still high. He is getting his last dose (for a while) of the vincristine chemo on Thursday and that always drops his levels so we are taking advantage of him feeling well while we can.

Entry 24

I am almost hesitant to write this, for the last time I posted the wonderful results we had, the next day I found myself in the ER. At Ian's appointment today his hemoglobin was up to a 10! That is the highest it has been for a long time-it's more than doubled in the past month. No wonder why he had so much energy yesterday! It is still considered in the anemic range I believe, but the top part of the anemic range. His immunity counts are up as well, so he can go to the park, pool, whatever, as long is it is outdoors, or he can be inside with others without his mask if we know everyone is healthy.

I just got the results from Ian's Dr. from his bone marrow test this morning. She said that his test came back with no traceable leukemia cells. It is really good news! This does not mean we get to stop treatment, he'll still be treated for the next year, but it does mean we can go to a less intense therapy. I don't know all the details yet; I will know at our next appointment. I do know we have to continue getting LP's (lumbar punctures-where they inject chemo into his spine for the next month) and he will start on some more drugs he'll take orally instead of intravenously. They had suspected he would be able to follow this treatment path due to the outcome of his last bone marrow test; today simply proved it.

I also found out that there is an alternative treatment they can give Ian instead of the asparaginase (protein) shots. Ian was supposed to have another set of those shots in a few months but the stroke he had was from it and it was the last thing we wanted to do again. I was worried that the treatment would be ineffective without it and we wouldn't have a choice but to do it and pump him up on blood thinners. Fortunately though, there is another way. It has a 10% less cure success rate and it is a long procedure, but it doesn't pose the risk to Ian that the shots do.

Ian is really being a trooper about the shots Mike and I have to give him. (I think it is harder on us.) I can't believe what he goes through and how well he handles it.

Entry 23

I don't know how many of you get bored with my ramblings on; if there is anything you would like to know that I haven't addressed or anything, let me know and I'll answer it.

Today, Ian is in the best mood I have seen him in for a long time. He is more energetic and is also walking alot better. I think he was more concerned about that than I realized because with the biggest smile he is capable of he keeps looking at me and saying, "Mom, look at me, I can walk!!!" I must have heard it over 6 times already today.

Lauryn and Emma had piano lessons today so Ian and I waited in the car. I unbuckled his seatbelt and began reading a book. He was climbing over each row of seats nearly the whole time; you would never know that yesterday he couldn't even walk. For those of you who knew Ian before he became sick, he could NEVER hold still for 2 seconds. I saw a glimpse of that return and I will never complain about his activeness again. It was a good day for him, and for all of us. Days like these, help to get us through the harder times.

Entry 22

Ok, so it's been a crazy day, hence the 2 posts. We just can't seem to stay away from the hospital. Ian was unable to walk and it was mainly due to his left leg. He couldn't even really stand putting any weight on it. The fear there was that he might have a clot in his leg. He also has a cough that keeps getting worse and they wanted to make sure that it wasn't bronchitis or pnemonia. I am happy to say after spending nearly the whole day at the hospital and getting several x-rays and ultrasounds, everything came back negative.

I thought this was sweet so I'll share it. Last night, Ian was extremely tired and unable to walk so we put him to bed. Lauryn said something that hurt Emma's feelings and Emma, being extremely tired and prone to drama anyway, began crying hysterically. We tried for several minutes to calm her down and to try to get the girls to resolve their issue. The next thing we know, we hear this little voice saying,"What happened?" Ian was so worried about her, that he had literally crawled to her room to see if she was ok. We picked him up and after he gave them hugs, they were instantally better. They were touched that he would go through all that effort even when he wasn't feeling well to come in and check on them. Sweet little guy.

Entry 21

Well, we are home now and Ian is so happy to be here. It was funny because when I was getting him dressed he was kissing his jeans and being wild.

He is extremely sore right now. I don't know if it is from the stroke and his muscles tensing up, from all the shots in his legs, or for other reasons, but he is having a hard time walking right now. He kind of tiptoes around with us holding our hands out in front of him. It's kind of like teaching him to walk for the first time all over again. I am guessing that will go away soon.

Mike and I are giving him shots now and he is being so brave about them. He just sits there and takes them like the tough little guy he is. The girls were complaining because I was making them take some cough medicine (they've been coughing alot at night). I pointed out how tough Ian was being about all his horrible tasting medicine and his shots so I think they will be troopers from now on.

Ian had his last dose of the steroid last night (for awhile anyway) so he should start looking like himself in the next month or two. He was pretty good with his emotions being in check, there were a few episodes every now and then, but even his emotions should get back to normal (I can't even complain. I heard horror stories about how their personalities could change and he was still super sweet despite it all).

Many thanks to all of you for your many messages, prayers, and all your support. It makes this experience easier knowing we aren't alone.

Entry 20

Hooray, we get to leave the hospital today! Ian had a second MRI this morning and his blood clot has gotten smaller.

I am excited but nervous to go home now. I don't know if I can sleep at night for fear that he might seize or something in the middle of the night and I wouldn't know it. I guess I'll be camping out on his floor.

Entry 19

We are still at the hospital and unfortunately we will not be going home today as they originally thought. They need to do another MRI before we can go and that will be done tommorow. The Doctors also need to continue monitoring his levels to make sure they are within an acceptable range.

Mike and I are feeling frustrated at the moment because the neurology and the hematology teams cannot agree on how they want to treat him. They both have completely different strategies for him and we don't know who to believe.

I was trained on giving shots today and gave Ian his shot this morning. It is apparant that it is a 2 person job, so Mike will definitely have to be around to help me with it. I was worried Ian would be really mad at me, but he seemed ok.

Entry 18

Well, we have quite a few changes in the last 24 hours. Things have done a complete 180 right now. It may come as a surprise to many of you that I am typing this from the hospital.

Yesterday, Ian woke up and ate breakfast like always. I made a quick phone call and went upstairs to find him. He was laying on the ground and I could tell something was wrong. He usually gets sick the day after chemo so thinking he was going to throw up, I carried him to the bathroom. He couldn't sit up, he just kept falling over. I carried him to the couch to give him some anti-nausea medicine to see if that would help. Seeing that something wasn't right, I called the nurses on the hemoc floor. As I was on hold to speak with the Dr, Ian began to have seizures. I was told to call 911 and get him to the ER.

I have never had to place a 911 call or ride in an ambulance before, and quite frankly, I was ok with that record. It was cute, but sad, as Ian was somewhat coming out of one of the many seizures he had, he heard the ambulance sirens coming to the house and not realizing they were for him, he said "Uh oh" like he always does when he hears them.

The fear with Ian seizing was that he was having a reaction to the asparaginase. The asparaginase is the protein shots they gave him a few weeks ago that are a part of the typical ALL drug regimen. Less than 1% of the kids that get it will have a stroke so it's rare, but a possibility.

When they got the seizures under control, Ians left arm was temporarily paralyzed. Mike and I watched as they pinched his arm without any reaction at all. About an hour later, he moved his arm to pull the covers up. I never knew that I could be so happy over a simple act like that.

After having an MRI they did determine that Ian's seizures were caused by a blot clot on the right side of his brain. It was a venous clot (dural venous thrombosis) as opposed to an arterial clot so the damage is not nearly as severe as it could have been. He is acting like himself as far as we can tell. The only exception is that his left arm is weak from it. They have confidence that they can get it back to where it used to be or close to it with some physical therapy.

He is now receiving some blood thinners, as well as something that is supposed to help dissolve the clot by bringing his fibrinogen levels back up.

The past 24 hours have been such an emotional rollercoaster. For Mike and I, hearing that Ian had a stroke was even harder than hearing his initial ALL diagnosis. We really have to work hard to keep our emotions in check in front of him because he gets extra upset if he sees us cry or be emotional.

Please continue to keep him in your prayers (I know you probably are) but pray specifically that his brain clot will go away, that there will not be any more clotting, that he can make a full recovery in his left arm, that he will not have any hemmoraging from the anit-coagulation medicine he is on and that they Doctors will know the course of treatment that he needs to heal him.

Day 17

Ian had another round of chemo today and despite a few shed tears in anticipation over the port access, he did great! Last week, his hemoglobin was low and we were told that he would have to have another blood transfusion if it didn't pick up this week. We were so happy when we heard that not only had his hemoglobin levels come up, but so had his platelets and white blood cells! His bone marrow is starting to work again! He also got the green light to play with friends as long as they are healthy. We still need to put him in a mask if he goes in public because we have no way of knowing who is out there and what they have, but the fact that he isn't quarantined anymore is great news.

Our lives can begin to have a little more normalcy (is that a word?). By the time the pools open, he should be ok to swim although he may not have as much energy to swim as much as last summer right now.

Day 16

I think Ian knows that it is getting close to chemo day because all day long he kept saying, "The doctors can't hurt me. I am all better. They need to go away." I am hoping that eventually going there will just become routine and matter of fact for him. For now, we still have a few adjustments to make.

Aside from that, he was in a good mood today. Tired, but happy. I am so amazed at how kids don't sit around feeling sorry for themselves no matter what happens and they just try to do their normal routines the best they can no matter what the circumstances.

Tomorrow we will also find out if his ANC (immunity) count will be up so we can start setting up playdates and taking him fun places again. He has been asking to go bowling and ice skating. I don't know what put those ideas into his head. He has never ice skated and he bowled once a long time ago, but he has asked on several occasions. Funny how kids minds work.

Day 15

Ian was extremely tired today. Since I can't take him to the gym right now, I put him in our jogger stroller and we went for a jog this morning. Seeing that there were no kids at the playground on the way back, I asked him if he wanted to go down the slides or swing. He wasn't interested in it at all which is not like him. It is hard to see a kid who was once so incredibly active and bouncing off the walls to barely being able to walk up the stairs.

The side effects from the medicines are kicking in even more. He is the most swollen I've seen; it looks so uncomfortable. For the moment, his coordination is gone, he cannot even walk without waddling. Some of the toys that he once mastered, he can no longer manipulate. The doctors had told us some of the side effects from the chemo and the steroid are jaw pain, interference with the nerves in the feet and hands, and personality changes. Ian barely said 10 words to me today. I don't know if it was the tiredness, the fact that his cheeks are so swollen it's hard to talk, that he was in pain, or just the mood he was in.

There are less than two weeks left until he can go off the steroid, so hopefully, some resemblance of my little boy will begin to take effect again soon.

Day 14

Today was round 3 of chemo. It went as well as that kind of a thing can go. Ian has gotten really good at telling the nurses to "go away" so luckily they don't get too offended by it. We are trying to tell him that they are making him better and he should tell them "Thank you" instead, but I don't know if he is buying it.



It is fun for him to go and see the other kids there. It is the only chance he has for interaction with other kids right now and I think he feels comfortable because he realizes that they all look the same and are going through the same things.



The steroid has kicked in full force. For those of you who know Ian, he is doesn't look like himself at all right now. It's amazing how much his look has changed in 2 weeks. Luckily, he is still pretty much himself though personality wise. I've heard that the steroid can really alter their personalities so I am glad that there is something familiar about him.

Day 13

Ok, for those of you who noticed the time, yes it truly is 4:30 a.m (although I am putting this in after I see that it posted as 2:30 A.M. which it is in CA, not here). Why am I up typing so early you may ask? Is it that I am so incredibly dedicated to this blog and in anticipation of a crazy day decided to be on the ball and write before the day gets away from me? No. It is called steroids. Steroids that cause little 3 year old boys to wake up famished at all hours of the night.

We were warned that this would happen and also told that as soon as he goes off the steroid, it should go away. As I type Ian is on his 2nd bowl of Thai food (mussaman curry to be exact). Before you assume that my kids are great eaters and super cultered and refined, rest assured, they aren't. They run for cover at the very thought of a vegetable or fruit hitting their plate despite attempts at almost every meal. Macaroni and Cheese and chicken nuggets are pretty much their staples. So I find it hilarious that they love Thai.

Yesterday was amazing. As I opened the mail in the evening, Ian had received 5 cards, all incredibly darling and handmade; the clencher was, neither Mike nor I knew any of the families that sent them. I am grateful by the support from all of our friends and then support from your friends and family whom we've never met. Many thanks to all of you for your many thoughtful acts, deeds, and prayers.

Day 12

Ian is having a good day today. He is laughing, being wild with Emma, and spending lots of time in the backyard.










Right now, he is painting pictures which is a big improvement for him; he's had no interest in doing anything these past few days.







He is also proud of his new hat! I must say, he does look really cute in it (but I'm not biased or anything).


I just realized we never told you, the answer to the question of how many cases of ALL Leukemia are diagnosed every year is 5700. Congrats to those of you who got it right (you know who you are).


One of our friends contacted us today to tell us about a half marathon she will be participating in. It helps to raise money for the Leukemia and Lymphoma Society. If you are a runner, a walker, or just hoping to volunteer in some way, check it out. There are events all over in the upcoming months. Their link is http://www.teamintraining.org/. I am definitely planning on participating in this.

Day 11

Ian was feeling good today. He pretty much slept the past 2 days away, so it was fun to see him awake and in good spirits. We spent some time in the backyard and he watched the bunnies run around. Ian conquered Lego Star Wars so Mike picked up a new Transformers game for him to master (Thank you Searchteam). He was tired by the time he sat down to play, but he had the biggest smile on his face.

Ian must have asked for his medicine at least 3 times today, and not because it's good. In fact, it is probably the nastiest tasting stuff out there. He kept saying, "The Dr's and the medicine will make me all better." He understands a lot more about what is going on then I realize sometimes. He wants to do what is needed in order to get well.

Day 10

Ian had a bright and early chemo treatment this morning. We had to be at the hospital by 6:45 am. The procedure they were doing today was chemo through the port in his chest, chemo into his spine (LP), and then another bone marrow test. Since he started the steroid he has had a major increase in appetite, so they try to get the A.L.L. kids in as early as they can since they have to be fasting until the procedure is done. Ian was so terrified. He pretty much knows that if he is in the car, he is on his way to the hospital so he was trembling by the time we got into the parking garage. To make a long story short, it was NOT fun. It was extremely exhausting for all of us both physically and mentally.

But.. here's the good news. We got the results back from Ian's tests. He is considered a "rapid early responder" and has responded amazingly fast to the treatment. When we left the hospital the first time, the leukemia counts (blast cells) inside his bone marrow were at 73%. They were hoping the results would come in today at 5%. Well, he was even lower than that at 1%. So he is considered to be in remission. He still has to get chemo, and we still have a journey ahead, but we don't have to go so early next week and he'll only have to get the chemo injection through his port (which is the easiest part of everything) and not the other stuff. It is such wonderful news!!! I am so thankful to all of your thoughts and prayers for I truly do not know if things would be going so quickly without them.

Now if those tornado sirens would stop going off so we could go to bed... it's been a long day.