Care For Christian.com

Yesterday Christian had a routine clinic appointment at UCLA. Coincidentally he had started feeling a little sick two days before. Turns out he may have Sinusitis again. Now is more prone to getting sinus infections which he is not happy about.

Christian has been having ankle pain for months now and he recently started complaining of pain in his hip. The Dr. said that he’s at a point after transplant where the pain should be diminishing, not increasing. He said an M.R.I. would help determine if he has Avascular Necrosis. We are waiting for insurance authorization so the M.R.I. can be A.S.A.P.

If the M.R.I. comes back negative he would only require physical therapy.

If it comes back positive he would require surgery.

I had no idea how serious this disease is until I researched it last night. It left me in tears because he’s had several of the treatments that are causing factors of Avascular Necrosis.

Once again we ask for your prayers, so that this dibilitating disease does not attack our son. 

 The following info is from the MayoClinic.com website:

Avascular necrosis is the death of bone tissue due to a lack of blood supply. Also called osteonecrosis, avascular necrosis can lead to tiny breaks in the bone and the bone’s eventual collapse.

The blood flow to a section of bone can be interrupted if the bone is fractured or the joint becomes dislocated. Avascular necrosis is also associated with long-term use of high-dose steroid medications and excessive alcohol intake.

The most common joint affected by avascular necrosis is the hip. Avascular necrosis worsens with time, so managing it is a lifelong process.

 Avascular necrosis occurs when blood flow to a bone is interrupted or reduced, which may be caused by:

Corticosteroids. People who take high doses of corticosteroids, such as prednisone, for long periods of time — for instance, people with chronic illnesses such as rheumatoid arthritis and lupus — are more likely to experience avascular necrosis.

Procedures can increase risk
Several types of medical procedures can weaken bones, making it easier for you to develop avascular necrosis. Examples include:

• Cancer treatments such as chemotherapy or radiation
• Dialysis, a process to clean the blood after kidney failure
• Kidney and other organ transplants

Avascular necrosis that goes untreated will continue causing deterioration of the bone. Eventually the bone may become weakened enough that it collapses, causing pain and disability. Letting your avascular necrosis go untreated could lead to severe pain and loss of movement within two to five years.

Last Thursday Christian came home from school feeling very tired and with chills, but had no fever. He seemed to be fine on Friday and Saturday. Today I gave him Motrin for a headache he had this morning. We went to mass as usual and when we got home he had breakfast and slept for most of the day.

When he woke up, he took a shower thinking it would make him feel better. While in the shower Christian began to cry saying his head, arms and legs hurt plus he felt nauseous. I helped him out of the shower, dressed him and gave him Zofran for the nausea. Since he did have a 101.8 temp, I called UCLA and was instructed to go to the E.R. at Long Beach Memorial because they are closer to our home.

When we arrived at Long Beach Memorial we were seen really quickly. The E.R. Dr. maintained good communication with Dr. Morimoto from UCLA. Since the Hem/Onc dept at Miller Children’s was full, we were transported via ambulance to UCLA. When we arrived Christian got a warm greeting from some of his past nurses and care partners. Now that we’re settled Christian is watching “Throwdown with Bobby Flay” on Food Network and he is very good spirits.

I will update as we get some results back from the cultures.

Today Christian came home so eager to view his grades online. When he logged on, he proudly showed us the following grades.

Art: 81.3% B

Math: 95.0% A

Science: 100.0% A

English: 90.0% A

I know it’s only been three weeks, but this is so important, because I had been told that there was a very good chance Christian would now have some learning disabilities, from all the chemo, meds & radiation. It is wonderful to see him so motivated and eager to do well in school. I pray he continues on this path to academic success.

Now that Christian has been recovering so beautifully, I’ve had more time to think about what it has taken our family to get to this point. Recently I began to wonder more about what a mental and emotional toll Christian’s illness had taken on our other children, & how they’ve coped with it all. The boys are part of the “Super Sibs” program and have gone on outings with other siblings going through similar circumstances. This program has sent the boys certificates of appreciation, books of how to deal with having a sibling with cancer, T-shirts, trophies and metals, all reminding them that they too are special and very important.  

This is a poem our 14 year old son Ismael wrote for his English class today. This is so moving, because he is very reserved and does not show his emotions easily. I feel this is very therapeutic for him and we were VERY proud of the grade he earned for pouring his heart out on paper.

(please click on the links below to view)

ismaels-poem.jpg, ismaels-grade.jpg, Poem for English Class

Christian was just at his monthly clinic appointment at UCLA and the lab results are so good he no longer needs to take the last of the meds he’s been on for 2 years. He is so happy. As you all know, Christian has taken an INSANE amount of medication and this is a BIG mile stone for him. He was eager to go to school after his appointment this morning, and as he walked to his class my Mom told him how glad she was to be “escorting” him to school. He said he loved how the cool air feels on his skin. He said it feels so good when the wind blows on him. It’s always the little things that mean the MOST.  Just wanted you all to share in this joyous moment.   :o)

Two years ago on this date we got the devastating news about Christian’s health. It just amazes me how quickly time has gone by.  We lived all of 2008 wondering if Christian would be able to beat this cancer or survive the intense treatment. We felt uncertain if we would ever get to the place we are today.

I’m at a lost fo words right now….

We praise God for restoring Christian’s health and we thank you the countless family and friends who have stuck by us and supported us in one way or another.

Christian looks amazing in my opinion!

He just asked me if anyone still checks his site. I told him on the post of his return school there were 11 comments. He smiled and said ”WOW” I thought people had forgot about my site”.

After 2 strenuous and painful years, Christian Kirby has returned to school starting his 1st day of Junior High today. He has been looking forward to this day for months now. Christian & I got a tour of the campus yesterday, meeting with the magnet coordinator, 6th grade counselor, and two out four of his teachers. It was wonderful seeing the joy it brought him to walk around his “new” school. The staff was so friendly, supportive and really made him feel welcome. The good thing was he saw a few friends and they too were very pleased to see him.

Throughout the day yesterday, Christian kept telling me “I’m gonna miss you Mom”.  I didn’t want him to know, but I’d shed a few tears when I would think about him returning to school. I mean we were together day & night for two years and with the circumstances we were living in, it just added to my ”motherly OVER protectiveness”. LOL  

This morning he was so excited he woke up at 1:15am got dressed and THEN went to look at the clock. When he saw the time and that everyone was still asleep, he went back to bed. When 6:00am came around he got up right away and told us what had happened earlier. We all smiled and told him were proud of him for waking up all by himself and so early.

We had been instructed to be at the bus stop by 6:55am. We arrived at 6:45am just to make sure there was no rush. We waited til 7:05am and when the bus didn’t arrive, I call the transportation dept. After waiting 25 minutes for someone to answer my call, I was told he was not in the system to be bused to and from school. I know this added to Christian’s anxiety, because he kept asking me to drive around the school where the bus was to pick him up to make sure it didn’t stop at a different part of the school. I told him not to worry, I was going to drive him to school. As we walked to the main entrance of the campus I could see him start to walk behind me and he said he wished he could see some friends, cause he felt nervous. We walked to the office so I could get him added to the bus route roster.

Once that was taken care of his 3rd period teacher met us in the hall to escort him to class. He gave me a nervous little wave and couldn’t resist giving me a hug. As I watched him walk away, I prayed that he has a smooth transition and that no one bothers him.

Now, we are eagerly waiting for him to come home so we can hear all about his first day. 

HAPPY NEW YEAR EVERYONE!

We had a very good holiday considering the fact that Christian got sick on Christmas Day. He had  a fever that went from 101-102 for 2 days. I took him to see his pediatrician and learned he had an infection in both ears. He’s been on an antibiotic for 10 days now. Since the fluid did not drain & he’s having even more trouble hearing he will have tubes put in his ears this Friday 1/8/10 at Miller Children’s Hospital.

This is a minor surgery considering all our trooper has endured, but we ask that you keep him in your prayers. 

Thank you,

Ish & Les

Hem/Onc Holiday Party 2009 UCLAHoliday Party 2009 UCLA 

A year ago today Christian under went his bone marrow transplant. Last Christmas, our family life was in total disarray.  Ismael and I  just went through the “motion” of Christmas for the sake of Ismaelito, Noah and Isabella. We were lucky enough to have a web cam to keep us in visual contact with Christian and my Mom during the holiday season. Our tradition is to open gifts on the eve of Christmas day, but last year Christian was so tired from the radiation and transplant, he couldn’t wait til midnight. After opening gifts around 6pm, my husband took the kids to his Grandmother’s for the annual get together and I stayed home and watched Christian through the webcam. Once he said goodbye to his brothers and sister he went right to sleep. I sat on the couch in my livivng room and watched him sleep, feeling sad about not having him home and not being able to be with him.

 Today, all five of my babies were cuddled up the couch watching Home Alone while I put the finally decorating touches on our Christmas tree. That moment warmed my heart and brought me so much happiness. I have to say that I’m so proud of us for making the best of such a heart breaking situation. I feel the sacrifices that we made as a whole paid off.

Christian looks amazing, he’ll be returning to school in January and our family life is once again moving forward after being at a stand still for a year and a half.

Ismael and I thank you for all of the moral and emotional support you have given us through it all.

We wish you a wonderful Christmas and a joyous New Year.

Christian’s surgery went well. Thank you for all you well wishes and prayers. The Dr. told me he had no puss, but alot of inflammation and what looked like polyps. Christian came out of the anesthesia in much pain and VERY CRANKY as expected. He will have bloody discharge from his nose and mouth for the next day or so. There was talk of discharging him today, but the Dr.’s feel  it’s best observe him for at least 24 hours.