We Are There!!!

Yesterday, I received a package from a very darling person (who wishes to remain nameless). Inside, was a decorated mask for each of us and supplies so we could embellish the ones we have here as well. My girls were actually excited to put them on and wear them around. (I will upload a picture of them wearing them later today when they get home so check back later to see it). I never did have a chance to get the supplies myself. It seems like if I made it out, it was for the bare essentials like milk or bread and I never thought about it until I got home. Thanks for hooking us up.

Ian had an appointment this morning and he caught a little cold on Monday so I pretty much knew that his immunity would be too low for him to start maintenance. The doctor and nurses seemed to agree that we would probably be delayed another week. They drew his blood and we waited for nearly two hours before we heard anything. His Doc peeked her head in all excited and said "We are there. We're good. He's at an 850."

He got an LP today- the first one he's had in a while. He starts on steroids again for the next 5 days, so it won't be anything like the first round where he was unrecognizable because he got so huge and he goes on an oral chemo as well. He has the green light to play with friends (as long as they aren't sick) and we don't have to be quarantined anymore. That's right, we can actually leave the house! The sad thing is, we are so tired from being at his appointment at the crack of dawn that we aren't doing anything fun today until we can get a nap in first. I am so glad he can still enjoy some nice weather though! We are going to be busy these next few days and try to get a month of being cooped up out of our system. (That also means we don't have to wear a mask right now, so we only got to enjoy the cute ones for a day. Should his counts bottom out again though, we are pulling those out).

Things are going to slow down now. We don't have to go in again for 2 weeks, and that will just be labs. They said it is possible his immune system levels may drop again, especially at first while they play around and adjust his chemo levels, so we still have to be careful but we don't have to walk on eggshells anymore.

My Little Faker

So, everyday, Ian runs around, jumps on my bed, chases his sisters, you name it. Anything a typical little boy would do. About a month ago, he started complaining that his legs were hurting (which they probably were at the time because leg cramps can be a side effect from the vincristine). Feeling bad for the little guy, I decided to rub his calves for him. Well, I guess I did too good of a job, because every night since then at bedtime, and bedtime only, he has complained that his legs hurt. I was really feeling bad that he was going through such an ordeal until about a week ago when he started saying my arms hurt too. Now his back hurts as well. Uh huh. He's no dummy that's for sure. I wish I could have a massage every night before I went to bed. (I am going to feel really bad by the way if there is any truth to his pain, but it seems a little suspicious, don't you think)?

The Physical Therapist's Assesment

Yesterday Ian had a follow-up with physical therapy. They wanted to check out his arm and his leg since they had been paralyzed and then weak after his stroke. Ian was completely nervous and not the most cooperative at first. He kept hiding behind me and peeking around every so often. Eventually, we lured him out with a ball. He would chuck it at the P.T. and then run and hide. Once he realized it was going to be a pain free, poke free, visit, he warmed up. The physical therapist checked him over and told us that it was one of the rare instances where he could happily say that he looks fine and there is no lasting effects from the stroke. He absolutely couldn't believe it after reading his file. He said we were incredibly "LUCKY". I completely disagree. We were/are incredibly BLESSED.

Ian's hair completely thinned out after this round of chemo, but instead of falling all the way out, it stopped. The hair that was left was completely frizzy, course, and fried. So, Mike shaved it off last night. There was less than a handful when all was said and done. I was so worried Ian would be upset because it was so traumatic for him the first time around. Mike told him that he was going to get rid of the dead hair so that new, pretty hair can grow in. Ian was fine with that and proudly told me "I am going to have pretty hair come back." I think he has also noticed that a lof of the other "friends" from the hemoc floor are bald too, so he doesn't feel so different. I must say, if he has to be bald, he is lucky he has a good shaped head for it.

Back in STRICT Quarantine

I guess I should really stop giving away the theme of the email in the title if I expect people to read on. Otherwise, they will know everything in about 3-4 words. Anyway, we went in today bright and early. I honestly didn't think Ian would be ready for maintenance today but I expected his counts to go up since he hasn't had chemo for a few weeks. Unfortunately, he dropped back into the 200 range. Dr. Max said that it happens all the time. He could be fighting off a bug he picked up or something which would have caused it to drop again. So we are delayed a few more weeks. It could be worse though so I really am grateful that overall he is doing amazingly well.

Last time we were in, the nurse who saw us (not our usual one) told us we had to be at 1000 to go into maintenance. His nurse practioner today though said that it only has to be at 750. So that is great news. All the quicker we can get there. We will just chill out this week and see what his next appointment brings. Maybe we will be pleasantly surprised.

The Clot is....

I never heard anything from the hospital so I called on Friday after lunch time. My doctor and her nurse were off that day so I left a message for the nurse on call. She got back to me around 4:30 and said it looked like the clot was gone but she wasn't sure if I could take him off the Lovenox or not since it wasn't exactly 6 months yet. I seriously think I am probably one of the biggest pests EVER but the hospital didn't call today and I really wanted to know the results and the pharmacist needed to know if he needed to prescribe more medicine or not so I made some calls, again. Well, it turns out that the clot is GONE so they are going to take Ian off of Lovenox!!! No more shots twice a day for him. I don't think I am even going to recognize his legs in a week without bruises all over them. As weird as it sounds I was kind of nervous at first to stop giving him the shots; not because I love it so much, but I was just worried that his blood might clot again and he'd have another stroke. The nurse assured me that the PEG which caused the clotting has been out of his system for a long time so I feel better.

Ian has an appointment bright and early tomorrow morning. If his immunity counts are at 1000, he will start maintenance. I don't think they will be that high yet, but you never know. I am guessing he'll be in the 700's. Lets say 760. Any one else want to take a guess? I'll let you know who the winner is tomorrow.

Is the Clot Gone?

Ian had an MRI today to see if the blood clot he developed as a result of one of the medications was gone. I anxiously sat by the phone all day to hear the news, but no call. I guess I shouldn't be surprised; it took them a good day and a half last time to give us the results so hopefully I'll know something by lunch tomorrow. If the clot is gone then Ian can quit getting shots! Poor little guy has only had 2 shots a day, everyday for the past 6 months so I think we paid our dues.

I always get so nervous when he has to be sedated and put under. Everything went really well with the procedure though. I thought he would freak out because I walked with him to the door of the MRI room and then they took him from me and walked away. He had a look of panic on his face but they said he was fine. After the procedure, they told me not to let him walk on his own for 3 hours up stairs or going into the house or anything like that. We walked in the door and I figured he was safe so I put him down. I wish I had the video camera!!! He was hilarious! He was completely staggering and unable to walk in any resemblance of a straight line. I had him lay down on the couch and watch a movie and he was a lot more stable after that.

They took his blood and sent it to the lab in radiology so when we went up to the hemoc floor afterwards, they had all his info already. We got to turn around and walk out the door since his hemoglobin levels looked good and he didn't need a transfusion today. Also, his immunity counts have come up some. Last week he was 220 and today he was 600 (the range for a healthy person is between 5000-7000). We still can't be schleping him around town but we don't need to wear the masks 24/7 around him either unless we know for sure we are sick. Once Ian's ANC hits 1000 he gets to start maintenance so it shouldn't be much longer!!!

Long Day Today

Ian and I just got home from the hospital and I am beat! We were pretty much there all day. Ian's hemoglobin levels were low so he had to have a blood transfusion. I should have known it was coming; they had warned us that it probably would happen. I also thought he looked pretty pale on Monday but he has had so much energy that I didn't think much more about it. It takes about an hour for the blood to arrive once they order it and then it takes 3 hours to give it him plus the initial time we were there waiting on labs and stuff. It was a long day but we are home and luckily didn't have to stay overnight or anything.

His immunity is even lower than it was last week. It pretty much got cut in half from a 480 to a 220. Another week for the family wearing masks. They've been pretty good sports about it except for a certain 6 year old who shall remain nameless. The masks are a total pain but it is worth it if it keeps Ian from getting sick. Maybe it would be cooler if they had glitter or something on them. Maybe we can sit outside and personalize them. Thankfully, the weather has been perfect, so as long as they stay outside, they can keep their masks off which means they really don't have to wear it much. Hope the weather holds.

Planes, Trains, and Automobiles

Many of you have wondered, "What do you do when you are quarantined? Don't you go stir crazy?" Well, let me attempt to give some answers to those questions now. Since we can seriously only handle so much of the Lego Batman, Lego Indiana Jones, and Star Wars games, we had to find some other things to do. Ian, out of the blue, decided that we would build an airplane to fly. It would be an understatement to say that it would be a challenge for all involved and it is definitely not on a 3 year old level (even though I think Ian is the most brilliant 3 year old I know-did I just insult all of my friends?). Let me rephrase. He is the most brilliant 3-year old named Ian I know. Mike came up with a solution to please all. He picked up a simple model airplane kit; no engines, no remotes, no chance of crashing and destroying the hundreds of hours of work in 30 seconds. They have spent the past 3 days, gluing, assembling, and painting some kind of bomber airplane (I am such a girl- I have no idea the name of the plane- B-52???). Well, Mike mostly did anyway. Ian's help consisted of a constant stream of questions such as," What is that?" and most importantly, so it was repeated the most, "When will it be done?"

I am happy to say that we have a very excited little boy tonight. His airplane is done and he is so thrilled!!! We are going to hang it from his ceiling on some fishing line. Maybe eventually, he can get a whole collection going.

Now that I got the plane explanation out of the way, here is the explanation for the relevance for the trains and automobiles title. After being so sick of the XBox games that I was seriously hoping the Xbox would break, we pulled out his actual Legos in the attempt to build some of the cool train and car sets he has. I don't know what it is with these little annoying plastic things. First of all, you can never get them seperated! I had to eventually break them apart with my teeth (right now my dentist who reads this blog is either cringing, or is excited for the future crowns I'm going to need). Secondly, I never see them laying around anywhere and his box looked chock full of parts, yet we went through train, after train, after car, after car, unable to complete any of them because some crucial parts were missing. Finally, I ended up with a hack job of a mini truck that he could play with. None of the colors matched and I think some of the wheels were even different sizes. He didn't seem to mind one bit though.

His little friend the spider (see earlier posts if you have no idea what I am talking about) has been MIA (missing in action) this past week. At first, he was completely pacified thinking it had gone into the bushes but he is starting to get upset that it hasn't been around. Can you tell that we need a playdate with REAL people? A spider is his only little friend that he can look forward to seeing right now.

His next appointment is on Thursday. Hopefully, his counts will be back up, although, it sounds like that isn't the norm. This round of chemo should knock him out for at least a few weeks. Until then, we will continue to find ways to entertain ourselves.

Our Reality

Let me forewarn you before you start reading, that this is a very sad post. I debated on if I should even write about this or not because I have tried to keep the blog informative yet uplifting. As I thought about this, I decided that this will pretty much be Ian's journal of his whole experience and I need to write all my feelings and emotions as we go through this journey of making him well.

A little 4 year old girl who went to the clinic with Ian just passed away. She was diagnosed with a brain tumor 4 months ago. She was in the PICU because she had come down with pneumonia and she died from complications with that. I can't begin to tell you how saddened I am by this news. I can't even imagine what this family is going through. At the same time, another little 1 year old named McKensie is battling for her life. She desperately needs a bone marrow transplant surgery and has come down with a serious infection and is unable to go to surgery until she recovers. Time is ticking away and the longer she waits, the less of a chance she has that the bone marrow transplant will be successful. In addition to keeping Ian in your prayers, please remember these families and all of his other friends at Children's Mercy who are in a daily battle for their lives. I know how much prayers can strengthen and uplift us and our children. I know that I am not making it on my own strength and I am blessed to have so many of you praying for us regularly.

News like this hits far to close to home as you can imagine. This is the reality we live in right now. Of course I have had my moments where I wondered if Ian would pull through or not. His immune system is in a very weak state right now and has no protection from any kind of illness. We are keeping him quarantined, but with the sick season kicking in, who knows what the girls are dragging in from school. I actually went to the store today to purchase a mask for each member of our family. I figured, we could sacrifice and wear them anytime we are around him for the next couple weeks or so until he gets into the maintenance mode because I have seen to clearly what a simple cold can become.

However, to not become too downtrodden I have to remember the two blessings that Ian was given that promised he would be well. Truly our Father in Heaven knows what the outcome will be and I need to continue to remember to trust and have faith in his plan. I felt the spirit so strongly and I know it was there to comfort me and let me know that the words being spoken were true and from Him. I know that as much as I love my little guy, our Father in Heaven loves him even more than I can comprehend and he knows what is best.

Life is such a precious gift. I feel like this experience it truly helping me to become a better mother. I have so much more patience. I have been blessed with wonderful, loving kids and I truly appreciate being around my children. My priorities have changed. Where most of my time was spent cleaning and fretting about everything looking perfect, there is now messes. Meals are simpler as I spend far less time in the kitchen now. Less time is spent in the car as some of the girls activities have been cut down. Nothing is more important than spending my time with Ian and the girls. The day will come when I can focus more time on what I used to, but it is not today. Today is for them and I wouldn't have it any other way.