Hospital Blues

Just got home to get stuff together. Aidan's fever is gone-Praise God-but he is on a very strong antibiotic called Vancomyocin(sp?). He will need to be in the hospital for "a while" according to the doctor. I am not sure how long "a while" is. It's a vicious circle-the antibiotics are staving off the infection so they can't just pull him off of them because he is better for fear of the infection returning due to his low blood counts. Also this antibiotic has alot of side effects so they have to check his blood before and after giving it to him. He has to get a blood transfusion today for his low Hemoglobin levels as well. Sounds like they will evaluate him at the end of this week-Friday maybe-and let me know from there.

On a brighter note, my friend Audrey's parents came last night and we had a wonderful visit. They are very knowledgeable in the Scriptures department and entertained Aidan for the better part of an hour with the story of Joseph. Aidan loved it. Afterwards, they laid hands on Aidan and prayed to God for the miracle of healing to be bestowed upon him. It was beautiful and uplifting and we both needed it. Aidan told me afterwards that while they were praying he felt as though the room was spinning and he was being lifted and floating. It is a sign that the Lord was truly present because it is exactly how i felt the day I was baptized at 33 years old and I know I never shared that feeling with Aidan. Afterwards, mommy got some buddy time with Audrey eating sushi and catching up. Thank you Audrey, Gloria and Ruben, we love you.

Dad's coming Friday for about a week and Aidan is very excited. It gives him something to look very forward to-especially since Luis is a terrible shopaholic and does alot of RETAIL THERAPY (like Nana) when he's out here. So we'll let ya'll know how this week turns out and I will log on in a couple of days now that I know there are so many out there actually reading my babble!!

Love Aimee

In the Hospital

Just wanted to update that we had to bring Aidan to the hospital yesterday. He started having a headache in the morning, chills in the afternoon and by 5pm he had a temp of 100.4. Its at this temperature that I have been instructed to take him in. I called the hospital on the way so they could preadmit him. He had a room waiting when we got there and about an hour later his temp went up to 101. So glad I didn't wait. After looking at his blood tests, the Dr. says he has some sort of infection-very typical for Leukemia patients and started him on antibiotics. As of right now we will be in for the duration, no telling how long we'll be at the hospital. I am home right now getting some stuff and am about to get back on the road. I will give an update as soon as I can.

love you all-aimee

Just Another Day in Paradise!

As you can see we are trying to keep our sense of humor alive at all times. The nurses at the clinic, our new home away from home, get a big kick out of us and our funny life stories. One of their favorites is how Grandma Robustelli used call Aunt Brenda's dog "Tyota" and then get really mad when he wouldn't come to her but the dog's real name was Dakota and he wouldn't give her the time of day! This silly pic of Aidan was taken last summer but it really depicts how we are all feeling these days. Its kind of like being in Alice in Wonderland or something like that. We are all on some strange trip through another world. Some days Aidan is ok with what is happening cause he's blocking it out really good and other days life just sucks and we just eat doughnuts and watch movies. We've almost seen every movie ever made-or at least that's one of our goals. The other is of course to have California's second Legoland park right here in our townhouse.

This week we went to the clinic twice. Monday was a full day with a platelet transfusion. Aidan is needing more Benadryl lately for the side effects. I'm not sure if that's good or bad, its just what is happening. He tends to have shortness of breath and stomach pain once the Benadryl wears off so he needs quite a bit of it. It is pushed thru his line so it works really fast and in a few minutes he's sound asleep! Thursday was just a blood check and we were out of there in a mere 3 hours and 45 minutes. That's probably a record for us. Sadly, Dr. Ruki's clinic is always full of kids with some sort of leukemia/lymphoma. We have met some pretty amazing families. We all sit and patiently wait our turn. Aidan is completely taken with the little ones who are 2 and 3. He is so entertained just talking to them and seeing that even though they are so much smaller than him they are going thru the exact same thing and I think it makes him braver than he already is-if that is possible. The other day at breakfast he was quite prolific,"Mom-well I really feel like my body is fighting this Leukemia really good and I think its gonna beat it." If he only knew how much money adults would pay in therapy to have that attitude! Go Aidan!!!

Our tentative calendar is Bone Marrow Aspiration on Monday, Jan 26 and possible hospital entry for round 3 chemo the following Monday. Of course this is based on the wonderful count that once again must be at 1000 to begin treatment so we'll see.

Thank you everyone for the continuous gifts and cards. We are so grateful for every thought and extra minute you have taken in your day to think of Aidan.

Sprung Free!!!

So sorry I haven't updated lately but getting wireless access in Aidan's room has been quite a challenge. The good news is that we are HOME again-Hallelujah! Aidan took this treatment a little harder, experiencing a terrible, itchy rash all over his abdomen and chest as well as fever and a little anxiety episode related to so much Benadryl for the rash but overall is still doing good. Apparently, they kept him longer in the hospital the first time because there are so many serious side effects that can happen and they won't take any chances until blood counts are up. This time they finished his last injection-AraC pushed like a shot thru his IV and they discharged us. We are so happy to be back home again so mom can brush her teeth and get dressed in private!!!! Oh yeah and so Aidan can be more comfortable-of course...He has started the terrible stomach pain and bathrooming every 30 minutes or so but at least we don't have to drag an IV pole with us just to get on the toilet!!! I was really worried about that because our room was so small but the the bathroom was in a very awkward part of the room around a wall corner-it was a challenge just to go every couple of hours never mind every 20 minutes-so we are thankful.

Before we left the hospital, I stopped in to see Dr. Rukki in the clinic so she could sign Aidan's release for for schooling at home. He will officially miss the rest of third grade. I am so sad about this because he happened to get the neatest teacher this year, Mr. Beyer and they are learning so many great things. I will do my best to help Aidan stay on top of things but I already know its gonna be WAR. We are so close and have such a great relationship except in this one small area of our lives, HOMEWORK. UUUGGHHH I am dreading it already. If anyone has any good ideas to keep the peace between us-let me know-I am very open to any and all suggestions. He will get a teacher 5 hours per week for tutoring and I am going to look into a private tutor also but this does not in any way replace the third grade experience.

ROUND TWO

Hi all,

We are back in the hospital. We checked in Monday, Jan 7 after waiting all day in the clinic for a hospital room. Apparently there was more illness over the weekend than one hospital could handle and to say it was a zoo would be an understatement. We finally got a room by 6:30 pm and settled in. They started Aidan's chemo around 10pm-kind of sucks because when it starts that late it automatically tacks on another day of staying here. Oh well.

Tuesday we changed rooms two times. I'm not sure why, something to do with other kids needing the certain monitors, so we are in room 401 and I'm sure we'll be stuck here because it's the smallest room on the floor and it has no monitors. The good news is that it has a great bathroom! What a trade...

Tuesday night after Aidan's full day of chemo he started feeling ill. He started with chills and then spiked a fever. He stayed at 101 for all of Tuesday night and Wednesday night went up to 102. YUCKKK. He really didn't move too much Wed. Totally out of it, nauseated and lethargic and freezing cold. We couldn't put the warmer blankets on him because we were trying to cool him down so he was basically miserable. Today, Thursday his fever broke around 10 am and he soon took up where he stopped last time he was here---back on the portable Nintendo game cube. Guess he is feeling better. Mom, nana and the lovely nurses are not allowed to ask him too many mothering, annoying questions like, "Are you hungry?" or "Do you need to go to the bathroom?" Poor guy, not only does he not feel good but he has all these women hovering. Even the Dr. is a woman!!!! Mom was kind of out of it this morning, good thing I stocked up on extra SLEEP while we were home cause there is no such thing as it around here lately. Because of the fever, the nurse took his temp every 30 min and then Aidan had to use the restroom in between. I catch twenty minutes at a time where I can-just like having a newborn all over again!!

Thank goodness for Nana Susan's daily visits. I actually took myself to the gym twice this week to work out all the back cramps from the so called pull out bed and get my circulation going. It's a great stress reliever and Nana gets some quality time with Aidan. It must be so fun watching him play video games for hours! Haha. Welcome to the world of a 9 year old. He also perked up when I suggested the idea of his buddies coming to visit for a little bit tonight, so they are on their way as I type. I'm sure some good friend time will get him through a couple more days.

Thank you to everyone who sent us cute cards and special gifts in cards. Aidan was thrilled with them all. You are all too generous.

Please keep praying for Aidan, the last round was so great and I know its due not only to Aidan's tenacity but also to the power of prayers. This time seems like its already wearing on his body and he has 5 more days to go of treatment. I know he can do it but its hard to watch him go through this. His spirits seem good but he does have terrible moments when he questions why? What would you tell him? I tell him that we are soldiers and we are fighting a war and we are going to WIN. The "D" word is not allowed. Not on my watch. This is only temporary(thank you Jamie) and we have to tough it out to get him better. He can do it...

Just Waiting

We went to the clinic yesterday and hung out for a while. We thought we would be checking in to the hospital but Aidan's overall neutriphil count is still too low to begin chemo. He needs to be at 1000 and was at 647. Dr. Ruki went ahead and did his second Bone Marrow Aspiration and Aidan did much better than the first time. It seemed to go much smoother in the clinic versus the hospital for some reason. Probably because the clinic nurses do it all the time and are very calm. Aidan listened to music thru his headphones vs. me singing to him(less stressful for mom) to keep him relaxed so the Ketamine could do it's magic. He is so funny when he comes off of the drugs. This time he kept asking for the Dr. to stay in the room with him cause he needed company. The nurse had never heard him talk so much so we had a good laugh at the funny things he was saying. Needless to say, we were happy to come home for a few more days even if its just prolonging the inevitable. I did unpack the car (the worst part of returning home!!!) and the food(Aidan hates the hospital food). I guess this is the roulette all chemo patients play, the blood numbers game. It is very confusing and frustrating to think that he is so way below the low numbers but looks and feels so good. He is a mighty warrior. Whenever I feel like I won't be able to do or handle any of this, I look at him with his easy going strength and bravery and I feel the Lord moving through him to hold me up.

Happy New Year!

Happy New Year Everyone Love Aidan!!

We went to the clinic yesterday expecting Aidan to have his second Bone Marrow Aspiration and Spinal tap with an intrathecal injection of Chemo. Lucky for us Dr. Ruki decided to wait until Wednesday the 2nd-do all that and admit Aidan all at once. We were very happy to have 2 more days at home!! Aidan played with all of his new toys and games-the ones not packed up for the hospital and mom cleaned out his room of all the old stuff and put away all the Christmas decorations. Now, what to do with that giant tree...hmmmm! We wanted to wish everyone a very Happy New Year and will post some new pictures in a few days.

All our Love,
Aimee and Aidan