Today, like yesterday, has been a good day. JP was able to get a decent amount of sleep and even though he had a hard time waking up this morning, he has been in good spirits and has even been teasing the doctors and nurses.
Yesterday we thought it would be a good idea to give him a bath. He loves baths at home and he was excited to take one. That was, until the nurses taped this awful shield over his IV and then taped it to his skin. The kid was not happy. I think this was the single worst thing we, as parents, did to him. We felt awful. He cried the entire time and I'm still not sure if he's forgiven us.
We had a chance to talk more with the doctors today and fired off question after question. We feel very fortunate to have good doctors that we already feel comfortable around and feel like we can ask anything. It's already been an interesting journey and we feel blessed to have the caretakers we do. We found out a lot more information on this leukemia, including just how rare it is. In Utah, only about 35 kids a year are diagnosed with ALL and maybe 3,500 in the entire United States. There are parent groups and other support groups we will be getting in contact with because we really do not know anyone else that knows how we're feeling. We understand that even though our doctors see a 90-95% cure rate, there is still that 5-10% chance we will lose this battle. It's been an unbelievable few days full of ups and downs, lots of emotions ranging everywhere from denial to feeling unbelievably blessed.
We expect to go home sometime tomorrow. JP will have another round of chemotherapy in the morning and after they watch to make sure he doesn't have a bad reaction they should let us go. We are scared to go out into the world (read: our house) with our boy that has no ability to fight infection, but we can't wait to let him be back in his own bed without all the monitors. Just to give an idea of how sick he was/is, here are some of the stats.
Blast percentage - the percentage of leukemia cells in his body. When we were admitted, 73% of his blood cells were leukemia cells. Today, they only account for 31% of his blood cells.
ANC level - the ability to fight infection. A normal level is 5.0. When we were admitted, he was at a 0.6. Today, he is a 0.1. This is because chemotherapy kills basically everything, leaving him susceptible to getting very sick very fast.
Platelets level - your blood clotting ability. A normal level is 150,000. When we were admitted, he was at 9,000. Today he is at 63,000. They consider anything above 50,000 save for surgery. If he drops below 50,000 again he will need another platelet transfusion.
Hemoglobin level - the oxygen carrying cells. Normal is 12ish. When we were admitted, he was 3.3. Today he is 12. They do blood transfusions anytime below a 10, which is why he's had 4 blood transfusions.
I thought I would include some happy pictures instead of all the sad ones. He really has been feeling better the last couple days and we are so happy to see our 2 year old throwing tantrums because his iPad dies instead of screaming in pain. It's the small things.
Showing off his new toys
Counting the cars that pass by...
Loving on baby sis...
We are feeling so overwhelmed by all the support and love we've received. Countless people have already fasted and prayed for us and our ward is doing a fast next week for us. We can't believe how many people care about our sweet boy. We are very blessed and can't think too much about it because we choke up every time. So thank you.
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