Day 9

Ian is still being a trooper despite everything. He wants to be happy and normal and he does the best he can without sitting around feeling sorry for himself. He went outside and rode his bike for about 5 minutes until he got too tired. Then we actually finished the Lego Star Wars game we have been working on the past few months. His appetite has starting picking up from the steroids (as they said it would). Ian is starting to look different, even to me. His new haircut is part of it, but his cheeks and tummy are starting to puff out as well. He feels like he's gained 10 pounds since yesterday. He likes to be carried alot because he is sore and when it gets close to bedtime, he is too tired to walk up the stairs so I am going to get some buff arms. I noticed he seemed really tired today, more than yesterday, so I don't know if it is going to continue this way, or if he didn't sleep well last night. I guess time will tell.

Days 7 and 8

Not a lot happened yesterday (Sunday), but we decided to do a preemptive strike and cut, well pretty much shave off Ian's hair. It is supposed to start falling out in clumps in a few days, and we figured it would be less upsetting and look less odd if we helped it out. Since he is a boy, we didn't think it would be a big deal. Boy we were wrong! Ian was upset when he saw his hair and started crying; but once the girls started telling him how cute he was, he got over it. It is definately hardest on Corie; but it will grow back and really, it is a trivial thing. It could be a lot worse.

Ian's new hair dew.

Today Ian we had to take Ian back to the hospital for some protein shots. It is a normal part of the treatment. It is a relatively fast procedure, the longest part is they need to wait an hour to make sure that there isn't an allergic reaction. They have a really big toy room where the kids can play while they wait for results. They had an electric Thomas the Train set that Ian was going crazy over. It made the hour fly. They have volunteers that come in and offer ice cream sundaes, cookies, chips, drinks, etc. He was so busy playing, that he didn't want anything to do with those.

Ian has been so cooperative (I am so scared I am going to jinx it by saying that). He takes his horrible tasting medicines (and there are a lot) without complaint, he wears his face mask in and out of the hospital even though he doesn't like it, and he does what we tell him he needs to do in order to get well despite being scared. All doctors should have patients like him.

Day 6

Saturday, April 26th

Now that things are a little less crazy, I had Mike show me how to post here. We are home now! Ian was so happy to come home. He was kissing his blanket and everything he could think of when I told him we got to leave the hospital. He had to wear a mask on the way out which he didn't want to do, but once I told him he could take it off in the car, he was a trooper about it. Lauryn walked in from school super excited to see him as we had no idea when she left for school that morning that he would be here when she got home.

This morning, the side effects from the chemo are already starting to kick in a little. It interferes with nerves so his walk has already begun to change. It's not permanent though. Thankfully they warned us about it and I saw several other kids on his floor in the hospital walking the same way, so it helped to prepare me some (as much as you can be prepared for it anyway).

It's kind of strange to be home with Ian. It's home, but the circumstances are different now so it feels different. I don't know if that makes sense or not. I can't really explain it. We have some adjustments to make while still trying to keep as normal of a schedule as we can. The girls are being great about it and it is worth anything we have to do in order to help heal Ian.

Ian is definately feeling better since his blood transfusion. He has gradually gotten so calm over the past few months, that I thought that turning 3 must have mellowed him out. Now, looking back, I can see that it was just because he was sick and didn't have any energy. He is back to his wild self, unable to sit still, and boucing off the walls. He gets tired fast, but it is fun to see a glimpse of his personality coming back out that I had forgotten all about. It was such a reminder to me of "I forgot this is how you are! You're back!"

I have several of you wondering how I am doing, since I've stayed pretty quiet up until now. I originally didn't know how to post this so I put it in the comments section a few days ago. It was true then, and it's just as true now, so I thought I'd move it here for anyone who hasn't seen it.

This whole experience has been surreal. I still have a hard time saying "Ian has Leukemia." These are things that don't happen to you, it's always the other guy you know? But what isn't surreal is the outpouring of love and support we have received from all of you. I have been amazed and humbled at all that you have done for us. Your calls, visits, and messages left here, as well as the many acts of service and prayers done on our behalf have strengthened Mike and I more than you'll ever know. We are in for a long journey. There are still going to be many scary, difficult moments ahea. This process of curing Ian would be so much more difficult without all of you. I can never tell you how grateful we are. We have the best family and friends that anyone could ask for.

Day 5

Yeeeehaw!!! Ian gets to come home today. For all those who are mailing anything for Ian can now do so to our home.

Apparently, the hospital needed to free up space for kids with higher risk conditions than our little boy. Ian was at the top of their list for kids who are healthy. A few things we have to watch out for:

• Fevers - Ian can get fevers easily and the first sign of a fever means a 180 back to the hospital ER.
• Germs - Visitors can come by but you've gotta be germ and sick free. Ian's immune system is really poor right now.
• Public places - There are lots of germs around people in public places. We have to keep Ian away from the public for a month or two until his initial round of treatment is done.
• Healthy food - Ian is off the IV which means the guy has got to suck it up and eat more fruits and veggies. That also means that Dad has to be a better example too.

Other than that Ian can enjoy the healing process in the comfort of his own home. Mom and Dad will be able to get more sleep as well. Also, Dad gets to go back to work and the kids can get back into their routines as well.

The dynamic duo - Ironman and Anemiaboy!

Day 4

Last night Ian received his first dose of chemotherapy and a load of other drugs. Whatever they're pumping him full of is making him act all loopy and goofy. We'll take that over moody and bossy.

Here are some of the common and fun side effects he will most certainly have:

• Constipation
• Pain in jaw, face, legs or back
• Trouble walking, climbing stairs, muscle weakness
• Tingling and pain in hands, fingers, and toes
• Blurred or double vision, drooping eyelids
• Hair loss
• Trouble with fine motor skills (writing, buttoning, etc.)
• Hyperphagia (Feeling of starvation...will eat like a mamoth)
• Weight gain in face and belly
• Nausea, vomiting, anorexia
• Insomnia
• Personality changes, mood swings, anxiety, and depression
• Decreased reflexes
• And more...

Sounds like it's going to be a fun next 27 days.

The doctors have looked at the initial blood results since his first injection last night. They couldn't be happier with the results. The drug (vincristine) is destroying the cancer cells exactly as is expected. We're still on schedule to get out of here this weekend.

Interesting note, vincristine is made from Vinca rsea Linn (periwinkle). The color periwinkle happens to be Corie's favorite color. This is now her new favorite drug seeing how it's going to save her little boy.

We have continued to receive gifts, balloons, and flowers from friends and family. We appreciate all of the thoughts, prayers, and acts of kindness.

Ian's sisters were able to finally come and visit him last night with new toys from friends and family.
What an addict. Can't take his hands off that controller for a second to eat.

Again, thank you all for your thoughts. I'm already hearing rumors of collaboration going on to help raise money for leukemia charities. The response from everyone has been incredible. Sign me up!

Day 3

It's 8:30AM. I just got back from walking Ian down to radiology where he's having an implanted port (port-a-cath) surgically placed into his chest which has a catheter which run into a large vein and down to his upper port of his heart. This will allow for his IV in his arm to be removed which will be much easier on him. It's also the port which will be used from this point on to administer his chemo treatments, IVs, and withdraw blood. Ian was scared. He said he wanted the doctors to go away. They gave him some medicine to calm him down and then they took him from me. Listening to him scream in fear is by far the worst part of this. He wants mom or dad by his side. They quickly put him under and he won't remember a thing. Now I'm just sitting in the room alone waiting for this to be finished.

This is the port-a-cath. The smaller silver one is what was placed inside Ian.

One of the doctors came by. They need more marrow from him. I had to sign, yet another, consent form for them to perform a second bone marrow aspiration for DNA testing.

Ian will also receive a spinal tap in which they will check his spinal fluid and perform the first chemo treatment to his spinal fluid. I can't believe this is happening.

http://en.wikipedia.org/wiki/Bone_marrow_aspiration
http://www.webmd.com/a-to-z-guides/bone-marrow-aspiration-and-biopsy
http://en.wikipedia.org/wiki/Spinal_tap

Ian playing with one of his many presents from friends and family after receiving his spinal tap and implanted port. Both hands are now free to play Lego Star Wars II. He's an addict!

It's 4:20. The Pediatric Hematologist/Oncologist just came in with a group of nurses and social worker to discuss the findings throughout the day. The good news is that they could not find any obvious leukemia cells in his spinal fluid. The better news is that we will probably be out of here on Sunday or Monday. His chemo treatments will start this evening. Sounds like the next 28 days will involve a lot of drugs and tests.

One of the things chemo does is kill off a lot of good blood cells which will reduce his immune system. I hope you all can understand that visitors should be kept to a minimum. Absolutely no sick kids or adults can even come to this floor in the hospital. We would like to thank you for your willingness to visit but also thank you for your understanding that we want to keep Ian as far away from outside sicknesses as possible.

From the tests performed on his bone marrow, the oncologist feels there is at least two pounds of leukemia cells in his body. WHOA! Apparently, this is average for a patient like Ian. Within the first couple of weeks most of that should be killed off. He will have a lot of side affects but are necessary for his getting better. After we are allowed to take him home we will have to return to the hospital 3 times a week (minimum) to have more drug treatments and bone marrow samples taken. Good thing I work close by so I can come here for those short appointments. It also helps that I have the coolest boss in the world who will work with me on this.

I'm adding a poll with some common facts we're learning about leukemia. Check back often and take it. You might learn something.

The drugs Ian is on is making him super moody. "Mom tell the doctors to go away!"

Day 2

I woke up, showered, washed some dishes, threw in some laundry, and cleaned the bunny cages (which had about 2 inches of water in them from the night storm). I then headed out to the hospital. I returned a call from Chris (Crabtree) who called me the night before to see what was up. Obviously, my siblings are equality concerned and I'm sure they all have a lot of questions. Perhaps this blog will help.

The first thing I noticed about Ian this morning was that his color is coming back. The overnight blood transfusion was well received and he was already behaving much more normal. He was happy to see me because he knew that inside my red bag I had the XBOX 360 which meant he could play Lego Star Wars II. He and his mom have spent the past month conquering and learning the ins and outs of that game.

The worst part of the day was when Ian had to have his bone marrow aspiration. I had researched this procedure and I was in no way comfortable with it. I know it's a necessary evil with no other options but I still can't stand the thought of that procedure. The nurses sedated Ian to the point where he fell asleep and Corie and I left the room. The procedure lasted no more than 10 minutes and he was back in our arms. I know it was worse on us than it was on him...seeing how he was given drugs to forget the last 30 minutes of his life and we will always remember that he had this done.

A miracle happened, Corie's mom (Sattley) and cousin arrived. We now have some direct family help and our kids can go home.

The poking and prodding today has been minimal compared to yesterday. Ian is still scared of anyone wearing scrubs but understands that they are here to help. He knows he is sick and needs to get better. The hard part is not being able to understand why the nurses and doctors are doing the things they do.

We are definitely in for a long journey.

It's 10:00PM. Corie Just called and is absolutely overwhelmed with the love and kindness of all of our friends out here in Overland Park, KS. She told me that the house is completely 100% immaculate and clean. Bathrooms, bedrooms, carpets, kitchen, etc. all picked up, put away, cleaned, and polished. Our home teacher came by to drop off his portable GPS system for Mom (Sattley) and to tell us he'll cut our lawn. Other ward members came by with a dozens of presents and cards from our friends. All of this on top of the current service they are all providing for the Ortiz family. This is absolutely unbelievable. All of you who are praying, serving, and providing for our family are saints. We love you and thank you from the bottom of our hearts.

She has also received numerous calls on her cell and calls to the house phone. Over 17 messages were left from friends and family.

It's 10:15. Ian looks fantastic. He's receiving another transfusion and is sleeping like a rock. I haven't seen his skin tone this pink in a while. Aside from his drenching sweats, he looks as if nothing is wrong with him.

I know everything will end up alright. Ian will get better. At this point, only good things can come from this. We will meet new people, Ian will make new friends, we will become involved in a community that we never before knew existed, our family will grow closer together, we will come closer to our God...the glass is half full.

Here's my little stud.

The only thing Ian wanted to do today was play Lego Star Wars II on the Xbox.

Mommy and Ian finished 95% of Lego Star Wars last month. They'll have plenty of time this week to finish the remaining 5%.

Nanna (Sattley) flew overnight to be here to help with Lauryn and Emma.

Ian is starting to feel better after the blood transfusions.

Ian was able to pick out this green Matchbox car after being so brave and putting up with the bone marrow extraction.

Ian says he's going to get better.

Ian thought the two pidgeons outside our window were funny because they were 'kissing.'