Super Hero Cooper

We haven't posted updates in a while because things have been a big crazy. Cooper lost his hair this week, which was difficult for him, and us, but he held onto it for a long time, much longer than expected. Cooper was slated to start the last really difficult push on Friday. Unfortunately, he didn't meet counts at his appointment. This is completely to be EXPECTED. The docs actually said they would be surprised if he wasn't delayed. However, it bummed us out because this next 10 days is the part we have been dreading and we just want to get it DONE. Cooper had to have an ANC of 750 to start and he was somewhere around 450 on Friday. They are hoping that things will have recovered by Wednesday when we go in again. Keeping in mind that the entire purpose of delayed intensification is to bottom everything out, we are not concerned about his levels at all. Cooper is doing well, although he was super bummed because he wanted to show everyone who was boss at clinic and meet coun

This week Cooper lost his hair. As I scraped it up by the handfuls off of his pillow, I couldn’t help but think that this is not what parenthood was supposed to be like. This isn’t what we signed up for. There is so much about this that makes me bitter. While I do think that bitterness just embodies my current state, it is my daily prayer that I will not remain bitter from this situation but will be compassionate and changed forever by what this situation has taught me. For the first time Cooper’s spirit has been broken. It is heart wrenching to see and know that there is nothing you can do to fix it, and it indeed will get worse. While I have tried very hard to not say “why me?” it isn’t fair and it is horrible to see all that he has lost.  There are so many reasons as to why this is hard and often faith, perspective and brutal honesty is your best weapon to get you through. When you navigate a journey like this everyone is so positive. Do we need to be positive? Absolutely

Cooper finished the first half of intensification. Friday we went in to check blood levels. We thought for sure he was going to need a blood transfusion but he did not. His ANC has dropped significantly which is to be expected. Other things have actually fluctuated up and down from week to week, so they do not believe he has hit bottom yet. We are also done with his high dose steroids this cycle which is wonderful. His ANC was below the threshold for him to meet counts for day 29 in this cycle (Friday) and since they don't think he has hit bottom yet, they expect his second half round of chemo will be delayed. Unfortunately, this is not what we wanted to hear. There is no risk to him being delayed and it is actually extremely common. However, the drug he is about to get is the most difficult chemo drug and will wipe out everything. It has been the splinter in everyone's mind since the beginning, since it is the hardest and he will be getting it everyday for 10 days with a 2 d

After a very rocky start to intensification, we were very pleased with the outcome of Friday. To say we were scared to re-challenge this drug would be an understatement. Cooper was scared too and mentioned that he was afraid to go back to the hospital because he didn't want to stop breathing. That's some heavy stuff to work through with everything else he had going on. Cooper with his amazing Child Life Specialist walking him through everything. She helps a great deal with things that cause Cooper to feel afraid or anxious. He definitely wasn't thrilled about Friday after all of the action on Wednesday. He told her that he "wasn't very happy to be at the hospital today and that he brought his "stank face" with him."  Cooper with his gourmet meal of broiled salmon and rice...good grief! Chemo significantly changes your taste buds and now all our 5 year old will eat is brie, salmon, rice, and crab cakes!  Movie time! One can only pl

Well, so far this phase (1 week in) has been quite eventful. We don't like eventful. We like boring. We are hanging in there but this week has been rough, which certainly is concerning with 49 days to go. Day 1 of treatment Coop got a new drug which is designed to knock his counts down. He was pretty laid out for a few days but did bounce back quite well. He is exhausted though and has adopted a new 6:30 bedtime these days.  Cooper's buddy definitely knows when things aren't right and camps out by his side pretty much 24/7. Cooper did have a little time to work on that amazing Hogwarts lego for a bit once he started feeling a little better.  Poor buddy is starting to look pale and get red circles around his eyes, which is pretty standard but does make him look sicker.  Yesterday was bad. There's no other way of putting it. Cooper had a really long day ahead at the hospital which turned south after his second treatment. We started our day at 6am beca