Our sweet little Chan the Man has been diagnosed with Leukemia. He has the most common, treatable type of Leukemia - ALL (acute lymphoblastic leukemia) B cell. It is the most curable, and has the highest success rate at 95%. Here is what we know right now...
How we found out:
Chan started a high fever on Friday March 3rd. It was 103.9. He had fatigue, fever, shakes, rapid heart rate and rapid breathing. He wouldn't eat or drink anything. We went to the pediatrician and was diagnosed with strep. His tonsils were massive, with white sores. He was given an antibiotic to treat.
Chan wasn't showing any real signs of improvement throughout the weekend and into Monday (high fever, fatigue, shakes, rapid heart rate, and refusing to eat or drink. Monday I was on the phone with the pediatricians office trying to decide if we needed to go back in. A phone call from a friend, who was just calling to see how I was holding up with a sick kid, helped me to realize I needed to go back in, and being an 'overprotective mother' was ok :) I called the office right before closing Monday and scheduled an appointment for Tues morning.
We went in Tues morning and they retested for strep (positive) and did a blood draw to test for mono (negative). We received a new antibiotic figuring this strain of strep was resistant to the first antibiotic and that's why he wasn't improving. We received a phone call Tuesday evening from the on call Dr. telling us Chan's blood work came back and we should call his pediatrician first thing Wed morning. We were told Chan had low CBC and anemia. I googled those two symptoms and Leukemia was the first result. I decided that probably wasn't the smartest thing for me to have done because I was going to stress out over something that probably wasn't what it was...
I woke up at 8am Wed and made the phone call to the pediatricians office. They called me back 20 mins later, and our pediatrician was the one who called (usually its just the nurse). The Dr. said that there were more tests needed and that we needed to go to a Hematologist in Madison. I took down the info, and was told we needed to get there immediately they were expecting us. Then the Dr. said they will be testing for Leukemia. I don't remember what was said after that, but went into crisis mode calling my husband home from work, getting family to watch Chan's twin brother, Jay, and little sister Em.
When we arrived at the Children's hospital we were taken right in and talked to. They wanted to do a bone marrow biopsy, and spinal tap. Blood was drawn (very difficult as Chan hadn't eaten or drank much in about 5 days), and chest x-ray was given (to make sure sedation would be safe and no lung problems). Around 2:30pm the biopsy began. They made Chan comfortable and had a volunteer entertain him with an I-pad. Chan was awake during the quick procedure, though he was so out of it from drugs that he wasn't aware of pain or anything. Kindt and I were allowed to stay in the room while the procedure occurred. I had to leave after a minute because all of the people (6) and the beeping of Chan's vitals were overwhelming. Chan did really well with all of this. It helped that he was so tired and drugged that he probably has no recollection.
40 mins after the test, the Hematologist came in with tissues in her hand. I knew right then that the test came back positive. She talked with us for a time, then let us let the information sink in. We called grandparents and asked them to spread the news to the immediate family. We knew we would find out which type of Leukemia the following day (Thursday), so we could ease others fears with having more questions then answers before spreading the news to everyone.
Thurs (March 10) we found out that he has ALL B cell Leukemia. Which was a large sigh of relief. We are told its the best cancer to have if you have to have cancer.
Treatment:
Our initial hospital stay will be 5-7 days. We will likely be discharged Tues, or Wed of next week (March 15, or 16). This is the only planned hospital stay, the rest of the treatments (chemo) will be given as outpatient procedures. Now, we were told that we will be back in the hospital. He will likely develop a fever or illness that will put him in the hospital for treatment and watching over. This is going to happen at least once and most likely multiple times.
Chan had a blood transfusion Thurs early morning (12:30 am). He was also given fluids and antibiotics through his I.V. in his hand to help with the dehydration and strep. He finally perked up for the first time in almost a week.
Today, Friday, Chan will have surgery and a port will be put in his chest. It will stay in his chest for about 3 years through the duration of the treatment. It will not cause any pain, and Chan will have a bump under his skin where the appliance is placed. The port is used to put drugs into Chan without having to do an I.V every time. Chan will also receive his first Chemo treatment today.
Chan is in the initial stages of treatment which lasts 28 days. It is a pretty intense cycle and hopefully will pass with the least side effects and problems. After this 28 days, we will do another bone marrow biopsy, and the hope is that all cancer cells will be dead. Then we go into phase 2 which is making sure that the cancer cells don't form again. We don't know much about that phase yet, because its all dependent on phase 1. The first two phases will take 6-8 months and then we should be in maintenance phase which lasts an additional 2-3 yrs, which is less invasive just making sure Chan stays in remission.
How are we doing:
We are doing o.k. We are extremely optimistic. We obviously have our good moments and bad. I think we are nervous about the side effects, and how our sweet little boy is going to handle all of this. We feel torn between Chan who needs us so much and our other two children, but know that Jay and Em are being well taken care of.
What you can do:
Prayers, and support for us and our family. These next few months are going to be full of ups and downs for all of us. I know it is hard for those who are far and want to help. Knowing you are thinking of us is a lot of help, I am so sorry for the helpless feeling many of you will have. Please feel free to ask ANY questions. I am happy to answer them as best as I can. My husband and I have been labeled as information seekers with the staff on the pediatric intensive care unit so they are used to us asking tons of questions and have been really good with getting us the answers we seek. We don't know what help we will need, but anything will be appreciated. Offers of cleaning my house and making me dinner will always be well received, haha :) Any help with picking up and entertaining our other children will be much appreciated. We are going to have to make sure we help them still feel loved and special while brother is getting so much attention. Honestly though, thoughts and prayers.
Something you can do for Chan and for me is to go out of your way to make someone else feel better. Why I say this: Yesterday, I went home grabbed the things we would need for our hospital stay. On the way back to the hospital I stopped at fast food and got something to eat. Apparently I sounded excited about the Snickers Swirl ice cream flavor of the day, because the women at the drive through told me because I sounded so excited about the snickers that she gave me extra. Something as small as extra snickers put a smile on my face. This women had no idea that less then 24 hours earlier I had just found out one of my babies has cancer. Yet she went out of her way to make a stranger happy. Find a way to make a stranger smile, you have no idea what they are going through. This small, random act of kindness cheered up a mother who is going through something mothers should never have to go through. So, that's what I ask of you, go out of your way to make some stranger smile.
Questions we have gotten so far:
- What does this mean for Jay?
Right now, we don't know. Since we don't know if the boys are identical or fraternal we don't know the implications. So, they are going to do genetic testing to determine if they are identical or fraternal We are going to push to do this sooner rather then later. If the boys are identical then Jays chances of getting Leukemia are greater. If they are fraternal the chances are the same as any other child. If the are identical the onset could occur days, months or even years from now. This is a little scary and overwhelming but we are dealing with everything one day at a time, step by step. I am excited to know the answer to the question fraternal or identical finally!
Being Pregnant:
Yes, if you didn't know we are expecting baby #4 (yes, only one!) in the middle of August. Because of this I have to be very careful of toxins. Any of Chan's bodily fluids have to be handled with gloves so that any medication that may come out will not come in contact with my skin.
Other Thoughts:
Obviously, my thoughts are a little jumbled so I apologize for anything that is worded weird, spelled wrong etc - Deal with it ;) We are extremely thankful that Chan was so quickly diagnosed and that everything feel into place so quickly to determine the diagnosis and start treatment. We know we have been watched over and blessed and know that the Lord has been with us every step of this and that He will continue to be with us throughout this difficult and trying time.
I will try to update as we know things and answer any questions you have. Thanks for being there for us and being a part of our support team through this trial.
