Report of the Day

Ian had an appointment today. They pretty much checked to see where his blood levels are and to give him a dose of chemo. His immunity is gone so we are completely in quarantine. The computer was actually really slow this morning and I didn't know where he was when I left but I thankfully had him in a mask on the way to the car. However, I took him to the Deanna Rose farmstead in the afternoon without a mask thinking he'd probably be safe since we were outside. We were there a few minutes when I spoke with the nurse and she told me he was neotropenic (basically no immunity) which means he can't even go to a park. She heard all the noise in the background and asked where we were so I told her. I could tell that it was not smart of me to be there by her reaction so we instantly left. I hope Ian didn't pick up any germs because of his clueless mom.

I noticed his hair has started looking thinner and when I brushed my hand across the top of his head, he was shedding. Dang. I totally thought we were going to somehow beat the bald since we've gone so long without the chemo effecting him. Oh well. There are worse things by far. Hopefully it will start growing in before it gets too cold. Mike has said that if he gets upset by it, he will let Ian personally shave off his hair so they can be bald together.

I thought this was hilarious. Ian and I went through the bank drive through yesterday while the girls were in piano lessons to make a deposit. They gave him, not one, but 2 lollipops. I thought he would eat both for sure; but I was wrong. He finished one, and paitiently held the other for an hour waiting for the girls to be done. He told me, "I am going to give this lollipop to Lauryn when she is done with piano. She is going to be so happy." I started to think, "Oh how sweet." I no sooner finished that train of thought when he added with a huge grin , "And Emma will be so sad." He totally didn't care about making Lauryn happy as much as ticking off Emma. Such a little stinker. I have to say though, she kind of brought it on herself. They have been pushing each others buttons these past few days. Ah, siblings.

We Are Home!

We came home from the hospital yesterday evening, but I was too tired to write anything. I tell you, I don't know how they expect anyone to get well when they wake you up all night long. It seemed like I would just barely fall asleep and then the nurse made me wake up Ian and have him give a urine sample. This continued on every 2 hours all night long. I do not do well being woken up so it is simply amazing that I didn't rip the nurses head off or do anything to embarrass myself. Ian handled the whole thing much better than I did and was completely full of energy and in a great mood the next day.

About an hour before we were supposed to be discharged, Ian's urine came up with the slightest trace of blood. One of the concerns with the chemo is that it can eat away at the lining in the bladder (I think this one was called cyto... something. There are so many, this is the 5th different type that he has had). So, we had to wait while it was sent to the lab for a full analysis. Luckily, everything was fine but it was a little disconcerting for a moment to think we were going to have to extend our stay.

We have also added another chemo (ARC)regimen that he gets as a shot; so now we are up to 3 shots a day. Fortunately for him, he only gets this particular shot for 4 days before he gets a little break from it. He is such a trooper about his shots. It makes things so much easier. It would be hard to have to fight him everytime and I am so grateful he is being cooperative.

If all goes well, this should be his last overnight hospital stay and we are getting closer each day to starting the maintenance phase!

Back in the Hospital

Ian got admitted today but don't worry, it is actually a good thing. We knew there was a possibility of him being hospitalized today; it's a standard hospital stay that everyone has to do. We just didn't know if his counts would be high enough or not, but thankfully they were. I am glad we can do this now and continue to move forward instead of having to put it off and wait. Now we can start the maintenance phase that much sooner!!!

He has been in such a good mood. Last time, he cried almost the whole entire time that he just wanted to go home. Luckily, Lego Batman came out today. I brought it to him while he was still in the hemoc clinic and he was so excited to play it, he could barely wait to get up to his room (lets not lie here, I was pretty excited myself; and by the way it is the hardest out of all the Lego games). I don't know how or when I turned into such a nerd.

Anyway, he is getting a few new kinds of chemo. One of them is very taxing on the bladder and kidneys so they are keeping him hooked up on an IV and monitoring his fluid intake/outake very closely. From what I understand, he can also have an allergic reaction to it as well so I had to bring along the good old Epipen. Hopefully we will not need it.

We are in a really big room as far as hospital rooms go. We are actually in the bone marrow transplant wing of the Hemoc floor. It is completely secure and you have to go through 3 sets of doors to get in that won't open until the other one shuts. In between the doors, you have to wash your hands before exiting the final set of doors that lead to his room. We are only in this section of the hospital because the other beds were full so hopefully, this will be our final visit to the marrow transplant floor.

The photos are from his hospital stay today. In the first one he is getting ready to go for a ride on his IV stand and as you can tell from his smile, he's pretty excited about it. The second shot, we are getting a break from our room and he is playing a game of pinball.

Benefit Concert on Friday

I know that I am several days past due writing up on this, and I am sorry, but for all of you who have been in major suspense, your wait is over.



The benefit concert on Friday was a huge success. Many of you have asked me how it came to be, so I will backtrack a little. Phaedra, who is my very talented harp teacher was the link between us. A former harp student of hers, comes from an extremely musical family and when they heard about Ian, they wanted to help. Lynne and her son planned and organized the whole event. When we arrived, they gave us some VIP passes. I have to say, I have never been a VIP to anything before so I was feeling pretty cool. We were able to go to a room in the back and have all the sandwiches, chips, cookies, and drinks we wanted. I know my kids had their fair share. Ian was wearing a mask since we were indoors with a big group of people and it was completely orange from doritos by the end of the night.



The concert had 6 bands playing. All of them were from the Christian rock genre and they each played for 30 minutes each. The were anywhere from a single guy with a guitar/keyboard to a group of singers with a back up band. It was uplifting and entertaining to watch. Unfortunately, I had to leave early with Ian to get him home and give him his meds so I didn't get to see the last acts, but the whole thing was videotaped and from what I understand, it will be posted to myspace so you can see it for yourself. I will get the link on here ASAP. I will also see if any of my pictures turned out and try to post them on here tomorrow so check for them (I am far to tired tonight to do it).



Ian was the star of the show. They had photographers and videographers that were following him around just like the papparazzi. I don't think he understood why there was so much attention being given in his direction. There was a big screen behind the bands that would rotate different pictures of Ian. He kept noticing pictures of himself on the wall and thought it was really cool.



I was so touched at all the effort and time that went into planning this concert for us. I was also touched at all the friends and even complete strangers that came to this concert to show their love and support for Ian and our family. So many of the people that were there came up to us and let us know that they are praying for us and thinking of us. I am amazed at the outpouring of love and support that is given to a little 3 year old boy whom they have never met. There are so many wonderful people out there. I left the evening completely humbled and uplifted. I am truly grateful that this whole experience with Ian is teaching me how to serve others better and things that I can do in the future for those who may be dealing with some hardships.



I also know that there was some concerns on the part of those of you who could not make it that I may not feel supported if you weren't there. This is absolutely not the case. I know there are so many things you have done already and are doing behind the scences, so please do not feel bad in any way for not coming. I know we are loved, I know you are praying for us, and I know you would do anything asked of you. That means more than you will ever know.



A special thanks again to the Valle family for making this all possible. You are wonderful!

Eight Legged Friend

I don't know what it is but my family loves bugs. They most certainly did not get this trait from me. We have had a HUGE spider spinning webs on our porch for the past 2 months, yet I got specific instructions from Mike that I was not allowed to kill it unless it came into the house. Ian has taken to watching the spider and gets excited as he sees a fly or knat get trapped in the web. I hear the question, "Are spiders nice or mean?" at least 10 times a day from Ian. My reply is "They are nice" as any other answer will not suffice. He will keep asking me until he hears that they are nice. Then he always follows it with, "They help us by eating the bugs."

The past two days have been raining a ton thanks to some of the tropical storm clouds blowing this way. Ian was devastated to look out the window and see that his little spider friend was gone. With tears in his eyes he asked me where it was. I am not a spider expert by any means so I hoped I would be right when I said, "Don't worry. He is just hiding from the rain. He'll be back". Ian kept checking the window for hours and no sign of the spider. I could see that he was getting frustrated with me for telling him something that was wrong. The more time that past without a sign of the spider, the more worried he got. I started to think the rain had washed the spider away and we would never see it again. Thankfully, before the sun set, it showed up again, spinning a new web. (I cannot believe I just said I was thankful a spider showed up. What is wrong with me?) Ian yelled to me, "Mom, the spider is back. It helps us eat the bugs."

I love how he gets such joy from simple things like spiders. I wish I were so easy to pacify. I don't know what we are going to do in winter time. Anyone know where I can get a real looking fake spider?

On steroids again

Ian started on steroids again (his last dose hopefully) and woke up totally EMO today. It is crazy that these tiny little pills can completely turn your little boy into someone almost unrecognizable. They not only change him physically (see pictures from a few older posts back to see what I mean), but they make his emotions go crazy. One second he is laughing, the next he is crying, the next he acts depressed. Oh well, he only has to stay on them a week this round so that is nothing compared to what we've done in the past.

I am not exactly sure what the next appointment will bring because the nurse and doctor never came and spoke with us yesterday but I am pretty sure that next time if his counts are high, he gets hospitalized so they can do the last of the hard stuff before we get to enter into maintenance.

FINALLY, our 3 year old is potty trained. He was so close before being diagnosed with Leukemia and then once in the hospital and after, he completely regressed. It was fustrating knowing he could do it, he just plain refused. I tried not to push him too hard because I figured it was the only thing he could control in his life. He had to succumb to taking the most horrible tasting medicines everyday, to getting shots twice a day, going to the doctor to have blood drawn every week while hooked up to IV's getting all kinds of medicines, etc. He was just finally ready though and pretty much did it on his own. Yeah Ian!

I was in a totally dorky mood today and I typed up this poem. I am no Robert Frost, so feel free to stop reading now. I'm probably going to be really embarrassed tommorow when I reread it and see how lame it is.


ODE TO STEROIDS

Ian is starving from the steroids he on
So he comes in and wakes me at the crack of dawn.

I am utterly slow getting out of bed,
so he pulls off my covers while tapping my head.

Half asleep I begin to pour him a drink
Then I try to make food as quick as a wink.

Waffles, corn dogs, soup, chips, meat,
Are a few of the things that he wants to eat.

Out of the blue he laughs for no reason,
then he begins to cry for a season.

He ravagely eats all the food that's in sight,
and then he gratefully gives me a kiss goodnight.

The bags under my eyes, my tiredness they tell,
but I'm grateful he's here so it's worth getting him well.

Ian's Appointment Yesterday

It was funny, when we checked in yesterday, the nurses could see that Ian was not feeling well so they told me, "We are going to put you in the comfy room. It has two recliners and a wii Ian can play so that you can be comfortable." I was feeling pretty cool like we were getting some kind of special treatment until I saw the sign "Isolation Room" on the door. I love how tactful they were about it! I guess that they felt Ian actually was sick yesterday from a virus, not from the chemo. They said the chemo usually only makes them sick the day they get it or the next day, not 6 days later. Good to know. I was worried that the chemo was finally kicking in and that is what we had to deal with the next little while.

Anyway, Ian's counts were high and he was able to get all the meds that he needed. He is feeling GREAT today and is really playful and energetic. He was also supposed to start losing his hair today, but no sign of it (ok, now I just jinxed him). Maybe we'll be lucky again this round.

Poor little guy

Today was the sickest I have seen Ian so far. We got home from doing errands when he told me his tummy hurt. I promptly gave him Zofran but unfortunately it was too late. He threw up about 10-15 minutes later. He went from bed, to couch, to floor, to chair, then switched from his blanket, to Lauryn's blanket, then Emma's. He just couldn't get comfortable. I felt so bad for him. I guess one good thing about being sick is you get access to all the good meds so I was able to give him some oxycodone and some more anti-nausea meds a little later and he was able to relax and go to sleep.

It's totally my fault. He's been fine so I haven't been giving him Zofran because I didn't think he needed it. I guess I need to stay on top of it. Sorry Ian.

Benefit Concert for Ian

I thought I'd let all of you know about a music concert that will be held for Ian. A very talented musical family we met through my harp teacher has a band that plays Christian rock music. They have been busy organizing and preparing to hold a benefit concert for Ian. It will be on September 19th in Blue Springs MO.

If you are interested in learning more about it here is the URL:

http://www.myspace.com/iamlovedtheconcert

If you scroll down to the bottom of the page, they also have a place where you can sign up for email updates and more information on this upcoming event.

I am so touched at all of the effort and time they have spent on this for us who are practically strangers to them. One of the many upsides to our current situation is I am learning in ways that I never would have learned how I can be of service to others and it has made me more aware of others in similar situations. I am truly learning how serve by being served. Thanks to all of you for everything you've done and continue to do for our family.