Wednesday, June 18, 2008
The darkness clears and from the fog emerges a happy almost 10 year old boy named Aidan!! I am so overwhelmed and elated to report that since we have been home for a mere 2 1/2 weeks, Aidan has had a phenomenal recovery. This boy's body is growing strong he has more than quadrupled his counts in about14 days. As you can see from this pic, his first stop as soon as mom and Dr. gave the green flag was our favorite beach with his very best friends, the Corey and Bryson duo. Hair and eybrows are back as well as appetite and his frisky little attitude! He attended the class party for the last day of school and got to say goodbye to his friends and wonderful teacher Mr. Beyer for the summer.
As far as Dr. visits go he has graduated to blood work and check ups every two weeks. In the next month or so he will have another bone marrow biopsy but Dr. Ruki will put it off as long as his blood work continues to improve. We are going to work hard this summer so he can successfully transition to fourth grade with minimal aches and pains. Wish me luck!!!!
Sunday, June 8, 2008
Afraid to get too comfortable like its a dream or something. Is it possible that the first chapter of the cancer is over? Its like reading a book that hasn't been written. Its like living with an invisible spirit, unpredictable and scary. I am trying really hard to live "in the moment" so I think after a few weeks of this it will get better. No more putting off what I can do today because we truly do not know what tomorrow will bring. Its all about the bone marrow. I have been advised by the medical profession to basically live in a limbo state right now. Don't get excited about his health but don't let it stop you from living. Ha! I am sarcastically laughing at this prescription. A perfect way to go absolutely insane! I have read all the reports of relapse and it is not fun. Its worse than going thru it the first time and at this point it feels like it would break us. Mentally we are all crippled right now. Recovery will come and we must be patient.
Aidan's feeling ok this week. He's not good and not bad. He's very weak and tenuous about attempting anything strenuous. Going up and down the stairs is hard-he has alot of muscle atrophy from hospitalization. He gets winded and has to hold on to the railings. He stays in his bed and plays games most of the day but is eating really good. He lost about 7 pounds last month so we are working on fattening him up. He has hair growing by the day and has been fever free since they removed the line last week. He is scared shitless of the needle for his weekly blood draws so we are going to use the numbing cream to help get him through the prick. It has been quite an ordeal to get blood out of him without the line and there is nothing I can say to make him feel better about it. He just says " you don't have to do it..." and he's right. His nausea is gone but he still associates those certain foods with it so he has really curbed his menu. Hard to figure out what to feed him so we just go with the flow.
His dad brought him to meet his baby brother. He was elated. Said he held him most of the time and talked baby talk to him. Big smile on his face when he came home. Was completely in LOVE with Christian. (the baby)
Hope week two is as uneventful as week one!
Sunday, May 25, 2008
Tuesday was a new day....he felt great, even requested sushi....their favorite :-) But....that night by 10:00 he spiked yet another fever. Did I mention this was called Aidan's Journey? Maybe we should call this Aidans Adventure!! Aimee took him back to the hospital in Anaheim but Dr Ruki was still out of town so Aidan got to take yet another ride in the ambulance to Sunset. Oh yeah.. this took place at the most convenient time of 4 am. When Aimee refers to "hospital time" she ain't kiddin'.
On Tuesday morning Aimee's very sweet Granmda Lucille peacefully passed away at Mission Hospital. As Susan said, she was 91 years young and had her daughters nearby. She was very loved and will be greatly missed. Aimee says now she can be with the Lord and plead Aidan's case up there. God Bless sweet, sweet Lucille!!
Today is Sunday & Aidan still has a fever and is still experiencing quite a bit of nausea. He had a migraine yesterday & was rightfully very cranky. After eating some food though, he perked up and his migraine subsided. The antibiotics have to run for at least 7 days...so no word as to when he can come home. Not to mention, they still can't figure out why he has a fever. Nothing growing which is good....but a mystery none the less.
Please continue to pray for Aidan and for Aimee. Aidan is such a brave soul. I had the most wonderful time taking care of him while Aimee was sick. He is very good company....great conversationalist. (And wow, what a deep thinker!) He has the ability to have you in tears one minute and then laughing histerically the next. Aimee is just a true champion...her strength and abilities are absolutely amazing to me. What a great example she continues to be and the greatest friend anyone could ask for. Tito is also such a great support, he is the rock that keeps this family grounded. Thanks for taking such good care of everyone!!
Thursday, April 24, 2008
Catch up time, I know. Well we've had a very exciting week. Mom was lucky enough to get VERY sick. Last Friday night at the hospital I started to feel a bit stuffy. By Saturday morning, I was sick. Major disaster. I can't even describe the feeling of having to leave Aidan in the hospital and go be sick away from him. Bridgett and the kids were there and my mom was down the street at Grandma Adele's finishing up her being sick. Tito drove me over there and I collapsed on the couch and can honestly say I have NEVER been this sick in my life. Today is Thursday and I am finally feeling better. Bridgett and Dana have both helped care for Aidan all week as I was quarantined to my room. Thank you Bridgett for taking a week off from being you so you could be me-wanna trade? Probably not! Thank you Dana for filling in the gaps between Tito and Bridgett and Janell for the 2 delicious meals-major props for cooking!
So now he will start his final four bags of chemo and his shot. and done. Of course Aidan has a mile long list of what he's going to do with his life but catching up to his peers for 3rd grade will be what we are going to work on most. Back to Aikido and swimming are his choice of sports and major trips around the world-I believe Paris and London-were included on the list. Too funny!
Tomorrow I will go to the hospital to be with Aidan. Evan I will be sure to mention the boat to Aidan-I am SURE he will want to join you as soon as he can! Thank you for the invitation-please have your mom contact me at firstname.lastname@example.org so we can exchange numbers. Denise, Gillian and Logan, thank you for always leaving messages for Aidan-I read them to him and it makes him smile. He always talks about Aikido with you guys and would love to see you when he can. Please use my email as well. In fact if there's anyone who would like to contact me personally-use that email address.
Sunday, April 13, 2008
There's a crow who lives in the tree next to our house. Dana Crow. He comes and goes but I see him daily. He feels somewhat like a pet because his dwelling is part of ours. Some days he hops around on the ground in search of food, his black shiny feathers reflecting morning sun. Crow Business. Other days he has some unknown particle in his sharp beak and he hides it in his tree, saving it for future use. Crow Bank. I read once that crows were extremely territorial and smart. He seems to be both. When we came home Saturday, there was a tiny mutilated baby bird head on the stairs leading to our front door. Crow Dominance. Trash days are his favorite. He and his buddies travel the cans, pillaging the stuffed and overflowing ones for anything they can find. Crow entertainment. By the time the truck comes to purge the smelly cans of their waste, the crow party has littered the streets, pieces of plastic trash bags, paper cups, empty egg cartons and the such. Crow tracks. I remember when Aidan was in Kindergarten, the children were required to bring their lunches not in paper sacks but hard lunch boxes because the crows were notorious for silently pecking through to the glorious treasures of peanut butter and jelly and Doritos not in their original foil but lovingly packed by a five year old mother's loving hands in a baggie to save money and unnecessary calories. Crow Snack. Last year I waited for Aidan after school in my car near some trees in the parking lot. The crows conversed loudly each and every day. Their different calls and cahoots meant something important to crows, the language I do not know.They usually sounded bossy. Crow talk. When I die, I wand to come back as a Crow. Crow reincarnation.Yes I have WAYY to much time on my hands!
Thursday, April 10, 2008
So, we got the news today that Aidan will have his 5th and final treatment next week. As long his counts stay up and he's strong enough, Dr. Ruki will admit him next Tuesday for his final treatment. YEAHH :) Trying not to get ahead of ourselves because it will just make this month crawl by. This last treatment will be his strongest yet but he's so ready to be done-he'll do anything at this point.
Clinic went good today-probably our fastest yet. Aidan rewarded himself with Dairy Queen. We just got back from a nice walk around the Dana Point Harbor. We ate pizza at his favorite pizza place-Beach Cities Pizza and read all the funny names on the boats. So far our repeat favorite is "Dog House"!! Tomorrow he has an opthamologist appointment to check eyes for any damage the chemo may have done. After we are going to walk outside at Downtown Disney for a little change and get some toned down fun in before the hospital stint. I am even going to let him have some control over the TV remote this weekend-I am feeling generous. He also got his contact letter from Make-A-Wish the other day and was excited to really start thinking about his one true wish. The will soon come out and visit us and spend time with Aidan, helping him pick his perfect wish so they can start working on making it come true. He is so excited! It really gives these special kids something to look forward to. What an incredible program. Dana Point is also going to host Relay For Life and we are going to have a Luminaria candle burning for Aidan. It will be one of the many candles that light the path as the race goes on through the night to represent the never ending battle to cure cancer. It is a great way to get involved and comes to many communities. We are going to try and make an appearance but don't know if he'll be in the hospital.
Nana Susan is coming next Friday from South Carolina and we are so excited to see her. We miss both the padres but we have to wait till June to get our Papa fix. Oh well one grandparent is better than none and we can't wait(I especially can't wait!)
Have a great weekend and I will resume blogging next week.
Tuesday, April 8, 2008
I am so sorry I haven't blogged in a few weeks. Not only did we have Blog technical difficulty(google changed some things) but Aidan was admitted to the hospital, oh I don't know around the same day I blogged he was doing great!Ha ha thats what I get for being so optimistic...I shall go back two weeks to catch you up.
Exactly one week after Aidan's March chemo he woke up feverish. I had gone into his room early am to draw his blood for the lab(I have to do it when testing falls on a Sat) and he was pink. Pink tones for Aidan means trouble since he really doesn't have enough red blood cells to be flushed-sure enough 102.5 on the thermometer-dangerous for him. By the time we got to Kaiser emergency he was 103.5 and his blood pressure was dropping. The Dr. was waiting for us and had to stabilize him before moving him upstairs. Very scary. After a full round of blood cultures they found a bacteria called Klebsiella pnemoniae. It is a gram negative bacteria associated with the lower GI tract. They started him on 4 different antibiotics and about 4 days later he was better. They took him off all the antibiotics and within 24 hours he had a fever again. They started him on a different round of antibiotics, four more to be exact. His cultures all came out to be negative this time around so that was good. The bad news is that he developed a case of what I call "Chemo related" colitis. One of the side effects of Chemo is that it attacks all rapidly dividing cells because cancer falls into this category of cells. Well, your GI tract, from the inside of your mouth all the way thru till it all comes out is made up of these cells-as well as your hair which is why it falls out. His bowels were raw on the inside and it started causing him unbearable pain as soon as he had to have a BM. So they started him on morphine. The morphine helped the pain subside but since Aidan's blood cells weren't regenerating yet(due to the chemo) he didn't have any white blood cells to heal this inflammation and it seemed like this was never gonna end. It is an absolutely VISCIOUS cycle and watching him go through this was completely unnerving. The solution to this problem was to start giving him "the shot". GCSF is a white blood cell booster which is called in as "clean up crew". It is a booster he hasn't needed up until this point but thank god it exists because it worked within a few days. I won't go into the trauma of giving Aidan this shot-let's just say he had the nurse in tears, but it does work.
Needless to say he was in the hospital for 2 weeks and they discharged him by the skin of his teeth and lots of begging from mom to let him go home. We are here at home this week-spent the whole day yesterday in the clinic so he could get a platelet transfusion-and are scheduled to go back next Monday for his LAST TREATMENT. I am anticipating this to be his hardest time yet. His body is completely worn down and he is existing on minimum blood counts so he really really really needs everyone's prayers. Lets storm the heavens to get him through this with minimal illness. He will be getting a very heavy dose of Ara-C and some sort of protein-enzyme killer to prevent cancer cells from making new proteins but also affects your liver-AHHH I can't even go into it-way over my aching little head. But I do know that all of your prayers WORK. He has been so protected and been spared so much of what he could have gone through-what most kids normally do go through and I know it is because of you and the love that has been put out there for him in his time of need. Thank you thank you thank you.
We are going to have a restful week at home. I am going to fatten him up as much as he will let me so he has some reserves for the weeks to come and now that I have command of the blog once more I will do my best to stay on top of reporting.
PS-Aidan's new brother, Baby Christian is reportedly doing well. He is a big little baby and is keeping his mommy, Betty, very busy. Daddy Lucho is doing good and looking for job in California.
PSS Daddy Tito is also doing good and needs to get his props for being the best step-dad and future husband ANYONE could ask for. If it wasn't for him I would be lost. He takes such good care of us its unreal and more than anyone could ask for. Thank you Tito for everything-I know I don't say it enough.
I hope everyone is doing well and this will all be over before we know it. Aidan is so amazing and has handled all of this with the grace and dignity of a King. I am so proud of him.