Andy & Jessica

10 down 23 to go. Today’s proton radiation treatment went better than ever. Jude was scheduled for 10 a.m. and we got a surprise call at a little after 9 asking if we could come in at 9:30 a.m. Thankfully, we are only a 5 minute drive / 7 minute walk away. Jude got in by 9:45, which is easily his record. He requested the gas mask today to go to sleep. I think it must make him feel like he is flying since he was moving his arms like he was swimming through the air. After treatment, he didn’t get his daily anesthesia nap since someone else needed the recovery room (they only have 2 recovery rooms for children). So, we were kicked out of there by 11 a.m. after they woke Jude up and went back to Jill’s House. Then Andy brought the boys out biking while I retreated to my office for the rest of the day.  This evening Jude got the wagon from the playroom and went out front to wait for the volunteer to arrive with the Panera goodies.  We waited and waited and I raced Jude and Levi around in the wagon to kill the time.  Finally the bread arrived.  Jude loaded the wagon with Panera leftovers and it took another cart to carry all the stuff.  While trying to help sort the goodies, Levi immeditately dumped a box of frosted brownies on the floor — a nice way to claim them for himself, I suppose.  He then went to work eating one of the brownies off the floor.  Soon his face was covered in chocolate.  Jackie, the super sweet great grandmother who lives here full-time as a resident assistant, said to Levi something like, “Oh, look at you all covered with chocolate.  Why don’t you give me a big kiss on the lips.”  Levi is such a sweetheart, he gave her a big, chocolately kiss on her lips, much to her surprise.  After picking what we wanted of the free food, the boys and I went to the playroom and after awhile, Andy got Jude and took him to the observatory to take a look at the craters on the moon and Saturn.  Jude was pretty amazed that humans could build a telescope that could see so far.  I feel like I missed out so we’ll have to go back there.

For the 2nd time in a row, treatment was on time.  So, Jude got in around 10 a.m.  They even were able to do a painless blood draw through his port to check his anti-seizure medication level.  He’s acting wild, but I don’t know if that’s because of his medication or because he’s a 5 year old boy.  We’ll know in a couple days.  We have great reason to believe that the reason for the 3 hour delay on Tuesday was because some parent (and we know who) did not adhere to the fluid/food intake restrictions and the child then had an airway emergency.   Urgh.  Hopefully the parent learned the lesson since feeding that child caused all the rest of our kids not to get to eat breakfast until dinner time.

Jude suffered another port injury tonight while he and I were playing basketball in the playroom.  It was fairly awful.  The needle was again sticking half way in and half way out of his upper chest.  I was alone with the 3 boys in the playroom and Andy was miles away at the YMCA.  I had no choice but to pull that needle out myself.  I assessed the situation and then pulled the needle out, with my eyes closed.  (This from the woman who grew up wanting to be a doctor — guess I’ve become a bit of a wuss since then.)  Jude then insisted on peeling all the tape and bandaging off himself.  After the injury, we took it easy for awhile and read some books.  Jude first picked out a lullaby book.  He thought it was hilarious when I read, “Rock-a-bye baby, in a treetop.”  Who would put a baby in tree top, he laughed.  Then he got addicted to The Lion, the Witch and the Wardrobe and kept wanting us to read just one more chapter.  So, it was a late night.

Today has been a total disaster.  Jude was scheduled for treatment at 11 a.m.  As usual, treatment was not running on time and he didn’t get in until 2 p.m.  I guess there were some complications with a child who was scheduled 1-1/2 hours before Jude.  That pushed all the kids for the rest of the day way back.  Jude didn’t complain too much until about 1:30 p.m.  He was so thirsty.  He went into survival mode and was canvasing the whole waiting room looking for something to drink.  He finally realized that I had my backpack with and went to tear into it looking for something to drink.  He was fighting me to get something to drink.  I asked about the anticipated wait and even asked if they could just put him to sleep while he waited.  I think the workers there realized that Jude would start a riot if they didn’t take some action so they tried to bribe him with a toy from the toy shelf.  He said sadly, “All I want is something to drink.”  Finally he relented and got to pick out any toy he wanted from the toy shelf.  I had him pick out one for his 3 year old friend from Ukraine who was waiting with him.  After all, why should Jude get rewarded for throwing a fit when she was equally hungry and thirsty, but acting perfectly, and scheduled for 30-45 minutes after Jude?  Building a Lego Star Wars space ship kept Jude’s mind off of how hungry/thirsty he was.  So, it’s a 4 p.m. breakfast for Jude today.  Poor little guy.

Tonight we just hung out around the house.  We threw the apples from Jude’s Happy Meal to the deer that live in the woods nearby and come up to the house each evening to eat.  Yes, that’s right, Jude ate every last bite of the hamburger and french fries, but didn’t touch the apples.  After that, we waited for the Panera bread to arrive.  Jude was the first to see the volunteer show up with the stash of bread.  Jude was hyper with excitement and had his gloves on before anyone and went outside to help carry in part of the large load.  After finishing sorting the goodies and eating a couple cookies, Jude was playing iPad.  A youngish grandpa that he had befriended asked what that device was.  Jude laughed at him, thinking he was joking.  Then the grandpa said that he didn’t have a computer in his house.  Jude laughed again, thinking he was joking.  After all, every house must have a computer in it, or so Jude thinks.  Then I had Levi show the grandpa how to work the iPad since he’s been a pro since before he was 2.  I think the grandpa was pretty amazed.  After that, the Ukrainians had an impromptu dance party that I encouraged my boys to join.  I can’t dance to save my life, but sure enjoyed watching them and trying to catch it on video.

Jude had his 8th treatment today. I brought him since I can get more work done there than I can staying behind with the 2 little ones. It was running an hour behind, as usual, so Jude didn’t get in until almost noon. I’m not sure how he does it, but he barely complains that he is hungry/thirsty. Must be all those prayers coming his way. The anesthesia team here is top notch. They put Children’s Hospital in Minneapolis to shame. They have never (not once) given Jude a poke while he is awake and he has been anesthesized 8 times and will be anesthesized 25 more times without a single poke while he is awake.  It’s awesome.   Children’s, on the other hand, takes 3 workers, plus me to hold him down while they stab him with an IV. It’s awful, especially now that I know there is a safe and painless alternative — gassing him completely to sleep and not even doing an IV.  I will, of course, do my darndest to get Chilrden’s to change its anesthesia procedures so that Jude doesn’t have to be traumatized for his every 4 month MRIs. If they can’t cooperate, I’ll have to see if another provider in town takes a more humane approach to anesthesia of children.  After treatment, Jude picked out the toy that he wants from the toy shelf on Friday (free toy day).  It is a Star Wars Lego set.  The nurse set it aside for Jude.  Then Jude and I went through the drive thru where he got his weekly Happy Meal.  They forgot to give him the chocolate milk I ordered for him and when I called later to let them know that the order wasn’t filled properly, they put me on the list for a free Happy Meal.  Makes me wish they would forget the chocolate milk every time.

Andy wanted to watch our church’s sermon from last Sunday for church today.  I suggested we check out a church instead, which we ended up doing.  It was a bit of a disaster.  I’m not sure how the other parents do it, but our boys just do not behave or sit still.  Jude wouldn’t sit on his butt and was sprawled over the entire pew or draped over me, asking annoyingly, “Can we go now?”  Asher was happy but busy moving and chattering for most of time and started screaming at the very end.  Levi was chatty and active at first and then whiny and finally fell asleep on Andy’s shoulder.  It was a very small church and it was pretty embarrassing.  One nice lady behind me let me know there was a nursery downstairs.  She was probably thinking, “hint, hint.”  I finally brought Jude and Asher there.  Afterwards, we went to Golden Corral, one of Andy’s favorite places.  I’m not a big fan of buffets since I always feel like I have to eat my money’s worth and it takes a lot of food for me to feel like I got my money’s worth (so that was lunch and dinner today).  Jude got a big blue cotton candy at the end.  Levi wanted one too after seeing Jude’s.  He was so proud and happy to be holding it, but never took a bite.  Maybe it was the humidity, but the cotton candy kept shrinking and shrinking until it was more the size of a lollipop.  Then we convinced Levi to throw it away, without him ever touching it.  After that, Andy went to take a nap and the boys and I went to the playroom at Jill’s House.  Then is was nap time.  2 of the 3 boys are still sleeping.

This morning got off to a confusing start.  My mom stopped by our room to say that she wanted me to hurry up because “we’re leaving.”  I barely got myself ready and brought Levi down in his jammies.  Then after I waited around for them to leave for about 20 minutes, I learn that I was  dawdling and that we were actually leaving to go to a park and that they weren’t leaving until after the boys got a chance to play at the park for a couple hours.  So, I had to scramble and throw together a diaper bag.  Levi wore his jammies to the park.  The park was about a 10 minute drive from Jill’s House and the boys and I loved it.  Definitely tied for best park ever.  The equipment was unique and fun and there are woods adjacent to the park with hiking trails.  I went on an “adventure walk” with Jude and Ivan in the woods.  The boys were opposites and balanced each other out well.  Ivan kept saying things like, “I simply must find out what is at the end of this trail.”  Jude, on the other hand, kept saying that we should turn back.  Poor kiddo doesn’t have much experience hiking and he had convinced himself that there might be tigers or lions in the woods.  We didn’t go all the way to the end of the trail, but stopped at the top of the hill where there appeared to be a large rusty sewer pipe that the boys that was a cannon from a World War and another big piece of rusty something or other that the boys thought was a sunken ship.  Jude worried pirates might be lurking around.  After the park, there were some sad good-byes with my mom, dad, sister and nephews.  Nothing is sadder than watching my boys cry when their cousins leave.  Jude commented on how he didn’t get enough time with his Grandma Forbes, Grandpa Forbes, Aunt Katie and Ivan and Jonah and didn’t get to see Uncle Phil at all (well, that’s because Uncle Phil didn’t even come — ha!). 

Thankfully, we were able to distract them from the sadness with Andy’s great idea of going to the Indianapolis Zoo today.  The highlights for me were seeing a 1 year old elephant (I guess we missed the 3 week old elephant which would have been a highlight for me) and watching Jude pet a shark.  It was a dogshark, with blunt teeth.  But, it sounds cool, nonetheless.  He’s got an impressive record — he sat on a live alligator days before he turned 4 and at age 5 pets sharks for fun.  Practically fearless, except when it comes to worrying about tigers, lions and pirates in the woods of Indiana.

Jude had his 7th treatment today.  Andy went with him.  I stayed behind to work since we still have babysitters for the little guys.  Since it is Friday, he got to pick out a toy from the large collection at the proton treatment center.  He’s been waiting all week to get the Ivan Mater Legos car on the toy shelf and was so concerned yesterday that another kid might pick it before him that he talked the Zap Doctor into hiding it for him.  So, he was thrilled to finally bring that car home.  I think they are now out of the Cars 2 Lego cars so we’ll have to see what Jude finds to take home next Friday.  They removed the access to Jude’s port because it’s Friday.  That means he can get wet today (he can’t bathe all week while the port remains accessed).  To take advantage of Jude not having his port accessed, Andy, my sister and my parents took the boys to the splash pad after treatment.  I stayed behind and worked with a sleeping Asher.  They had a ton of fun and I hope to be able to go with next time.

It’s chaos here in Jill’s House.  My 3 little boys plus my sister’s 2 little boys, makes for no dull moments.  I missed almost all of it because I was in my office working for the day while the boys all went to Wonder Lab, a science museum downtown.  I hope I’ll get to see it sometime since I guess the boys really liked it.  The boys all got free admission from the proton center.

Before Wonder Lab, Jude had his 6th radiation treatment and Andy and I had our weekly meeting with the radiation oncologist here.  He thinks Jude looks great.  I agree.