In my flurry of posting about Joel’s new skills, I realized I left out perhaps the most significant one. Joel can now climb out of the pack n play he sleeps in at night. (He sleeps in a pack n play so he can’t hurt himself as much when he hits his head on it.) Anyway, if we ever have his pack n play pushed up against anything at all, a dresser, or a toy box, he will totally climb out of it. The other day he not only climbed out of bed but he also opened the closed door of his room and came downstairs. Yikes! (Also, Yea!!!)
This past week I’ve noticed that Joel has started recognizing locations. For instance we pulled up to a building where Ryan participates in co-working, so it is like a shared office space. As we pulled up to this fairly non-descript building Joel began shouting “Dah, Dah Dah!” (dada)
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Yesterday we were running late for church and decided to pick up sausage biscuits on the way, so we pulled into a McDonald’s parking lot, the line for the drive-thru had several cars already in it, so we decided to leave and try the next McDonald’s on the way to church. As we pulled away from the McDonald’s Joel shouted and cried, completely dismayed. (Yes I am a little embarrassed that my son recognizes a McDonalds.)
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Today, we pulled up to the hospice building where Joel has music therapy and he cheered and clapped. Pretty adorable.
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Speaking of music therapy, Joel had a wonderful day there. He participated more than I’ve ever seen before. He did motions for several songs and he “marched” to the song “We are the dinosaurs marching, marching!” I could tell he was marching because he’d take off walking at the beginning of each verse, and he would lift his right leg up high in a marching motion. He never could quite get that left leg to join in the fun.
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I was pretty proud of my big boy. He walks farther, faster and smoother every day.
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Also, we suspect his hair is starting to fall out again. We dread the decision we know is coming, one day (probably about three weeks later than we should) we will decide his hair looks too patchy and have to shave it off. We will cry, I’m sure, because we always do, and because no matter how many times he loses his hair and it grows back in it still heart-wrenching to shave your sons patchy head.
Joel has had a wonderful week. He has so much energy and as Ryan said, “It feels like he’s finally getting a chance to be a little boy.” When I went to pick Joel up from Sunday school this week he did not insist that I pick him up, instead he walked out the door on his own and then walked all over the church, looking for his dad. When he finally spotted him he shouted, “Da Daaaa!” and threw up his arms and almost ran…i(t was definitely the fastest walk we’ve ever seen,) to his dad. The excitement Joel can muster is amazing. Daddy scooped him right up of course.
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Later that same day we went to chuck e. cheese for Elijah’s birthday party. Joel walked all over the giant arcade at the restaurant, and when all the kids followed Chuck E. to do a dance for free tickets. Joel followed to…then, without even looking over his shoulder to see where we were, he pushed through the crowd of kids to the front row to dance and wave and squeal at Chuck E. when the other kids clapped he clapped, when the other kids shimmied he shimmied, when the other kids patted their legs, he stopped and looked around waiting for the clapping to start again, but two out of three’s not bad.
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Also, Joel has suddenly become quite picky about how he likes his fist bumps, twice today I’ve watched him make people re-do fist bumps until they get it right, the other person has to hold their fist stationary for him to hit their hand, then they must “blow it up,” or else he is not very happy, and he’ll make a gesture to show them what he wants them to do.
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We went to children’s hospital today to get Joel approved for his second cycle on the trial, his counts were great. However, we’ve had a cough, fever, and a little cough-induced vomiting running through our house. Joel resisted the longest but began coughing last night. Sure enough he had a slight fever this afternoon. Since we had just seen his counts today they let us go to the local hospital instead of back to Children’s hospital. Joel was so charming, everyone loved him there. For an obnoxious fever hospital visit it was pretty fabulous because Joel was so funny and cute! Joel starts chemo again on Monday. You can pray for him that he kicks his sickness quick, although it certainly isn’t slowing him down any.
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…and yes…of course there is some shaky washed-out video of Joel dancing with Chuck E!
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It has been a long week. Joel began his new trial this week. We went to children’s hospital every day, so by the afternoons I was exhausted. Joel is tolerating the new drugs really well so far. His energy is great, in fact it seems like he had more energy this week than before. He had no nausea or even a drop in appetite.
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We will go back to the children’s hospital this Friday and next Friday to check his counts, and then we’ll go back on the drugs for a week, but when that happens we’ll only have to go to the hospital Wednesday, Thursday and Friday instead of every day.
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As difficult as it is to have Joel back on active treatment, it was nice to have the doctors and nurses just adoring him. They think he is so funny, and they adore Elijah quite a bit too, and there is probably no feeling on earth quite like watching other people love and enjoy your children. I also really enjoyed having one day this week where it was just me and Joel in the infusion room. (We hadn’t done that for a couple years, and it was just kind of sweet to have that extended time with just him to play and cuddle.
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We have not noticed any seizures in a few days. I can not tell you how nice it is to have seizure free days. If you’ve been praying specifically for Joel’s seizures, please continue. We would love to continue to have a seizure free Joel!
We have found out that Joel’s tumor is the same size as it was three weeks ago in the previous MRI. There has been no change, no growth, no new tumors. Of course MRIs aren’t normally done this early because it takes a little longer to see changes most of the time, but we had to do this MRI to fulfill the entry requirements for the new drug trial Joel will start on Monday.
Looks like since this MRI was such a formality they are just going to call us with the results. We’re kind of disappointed. I don’t think anyone expects there to be much change in the MRI just a few weeks after his last one, but Ryan and I both feel like this MRI could end up being interesting. I guess we’ll have to wait to find out. Also, Joel’s counts are back up now. Had they been up yesterday we would have started the study without delay and not had this MRI. (This is probably a lot of the reason Ryan and I think this particular MRI might end up being important somehow.)
Joel was scheduled to begin the new drug trial today. (However, when we went to do some pre-trial labs last week we discovered Joel’s counts were very low, around 240.) The counts had to be at 1000 to start the study today. They always start the study on Mondays, so we went at 7:30 am and found out that his counts were 750, still too low to start the study.
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Actually when I found out Joel’s counts were low last week Ryan was in San Francisco for the Game Developer’s Conference, and of course if Joel ever gets a fever when his counts are low it is an automatic hospital stay until his counts come back up again. So, we were both really glad that Joel never got a fever while Ryan was away. (Especially since his counts have taken so long to come back up.)
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So, now Joel will begin the study next week on Monday, but that means he needs a new MRI, because to begin the study they have to have an MRI that is less than four weeks old. So, now, Joel will be getting an MRI tomorrow. No time to get nervous, since we just found out about it. We’ll let you know what we find out tomorrow.
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