Footsteps... Day 176 07MAY09

There is nothing harder to watch than disappointment and frustration blooming across your child's face. The kind of utter devastation that swims through their eyes for a few brief moments. Normally we witness these things because of some material object that has been denied. Maybe because it is time to leave or there is no time or resources to go to a favorite place.

Not because your child cannot tilt his foot back.

The chemo has really hammered Joshua this time, he has no energy and has been slowly sliding into a funk since yesterday. I feel his frustration, it burns through me. I speak the words of encouragement that I think he needs to hear, spout off clever analogies to help make his struggle seem more tolerable. All the while looking into his forlorn eyes as he struggles to deal with the fact that his body will not do as he commands, internally seething at the unfairness of it all. Helpless.

 I remind myself that today is just that, only one day of our long journey. One tired step to be followed by maybe one slightly less tired step as we trod through the ever changing landscape on our way to a place we cannot yet name. Journeying because we have no other choice. 

Then in the space of a scant few hours Joshua proves again that he is more mighty than anyone I have ever met. After I left for school Joshua got a special visit from one of his school mates Haley. She came over with her Mom Lisha and her little sister Mercedes. Lisha brought a delicious tray of lasagna, a caesar salad, and a decadent looking chocolate cake for Renee and the kids. I understand it was quite yummy. Josh had a good visit with Haley and managed to give her the grand tour of the house. After they left Renee took Joshua out on the golf course at his request to ride his scooter. He didn't make it as far as he usually does but he rode just the same. It never ceases to amaze how resilient Josh is. He never gives in or gives up. Some how he manages to find a reason to smile each and every day. Except when he is posing for a picture with a cute girl, then he has to look all GQ cover like. Serious and reserved;)

Birthday Girl... Day 175 06MAY09

Today is Renee's birthday! We celebrated by getting up early this morning and heading off for a day at the hospital.

It's not as bad as it sounds. We were together as a family and we have lots of friends at the hospital.

Renee wanted to thank everybody that sent her a happy birthday wish and brightened her special day.

Joshua got the works today to kick off the beginning of delayed intensification. He started off with a CBC to check his counts and see if he qualified for chemo. He did, ANC at 952 and platelets over 200. So a quick port access and off we were whisked to the day hospital for an LP and intrathecal methotrexate. He was actually looking forward to the anesthesia and the short swirly nap it produces. The procedure was quick and he recovered just fine. Back we went to the clinic to get the rest of his chemo meds and get his port de-accessed. As soon as we were done we jumped in the car and headed home. It frightens me sometimes how routine this has all become to us.

Renee spent the afternoon relaxing before we headed over to her parents for dinner. Josh was okay for a little while but he crashed halfway through dinner. We were celebrating three birthdays today, Renee's as well as her mom and Jamie whose birthday's were yesterday.

Jamie is doing well and getting bigger by the day it seems. It was beautiful to watch Joshua sit next to her with his hand on her stomach as our grand-daughter kicked and twirled around.

Very soon it was silently communicated across a noisy room that it was time to get him home. We quietly and efficiently packed everything up and slipped away.

So far, knock on every piece of wood I walk by, he has not had any ill effects other than being really wiped out. His temperature was holding steady at 99.0 and his appetite has stayed. We are dealing with a bunch of new meds this time around and as of yet have no idea how Joshua will tolerate them. Often times it is not a single med that throws him over the edge but rather the combination of several. For now we will wait and keep our fingers and toes crossed for the next few days. He goes back to the clinic on Monday to check his counts and get more chemo and again on Wednesday. It will come fast and heavy for a little while. I am hopeful that all the rest he has gotten has given him a new reserve of strength to draw from as he battles the effects of the chemo of his small little body. Today marked fifteen days at home, not a record but better than a lot of our stretches.

I'm hoping for a record...

The day before... Day 174 05MAY09

Joshua had school today with Ms. Lydia and then we rushed off to the physical therapy office to work on Joshua's legs. We added a few new exercises today: stomp the bug; the lumberjack; and moon soccer. He seems to really enjoy the therapy and he gives it his all. He was really tired when we got home and dropped off for a three hour nap. He woke up in time for dinner.

At dinner he just wasn't himself. He seemed distracted and upset about something. I sat down with him on the couch and asked him if he was worried about tomorrow. He was. He is so brave and works so hard to treat each day as a new chance to feel better. He has actually felt pretty good this last week.
He was worried that the new chemo will make him run a fever and put him back in the hospital. We share his fears.

We share his fears but we never share ours with him. We are cursed with the knowledge, not of what will be, but that which might be. Knowledge thankfully that a seven year old can not quantify. Knowledge that ruins our sleep at night.

Joshua knows what he has experienced and what we have talked about. We discuss his treatment plan with him and he asks amazingly intelligent questions. He knows what drugs he gets and what they are for. He knows how they make him feel. He knows the routine that we will follow tomorrow as we get him qualified. Accessed. Sedated. Infused. What he doesn't know is what it will bring. Maddeningly neither do we.

Tonight he rests. In the morning we will sojourn to the hospital and walk a few more feet down the long and crooked path that is his treatment.

Scooting around... Day 173 04MAY09

Joshua got his first round of physical therapy today. He went in this morning and learned a couple of new exercises to do at home to start strengthening his legs. The therapist gave them names that make it easy for Josh to relate to the exercises. He does guitar strings, slingshots, and push the wall. All of them are designed to help him build up the lower part of his leg and his ankles. He was very excited to show them all to me when he got home from his appointment. Renee said the therapist was great and he has hand sanitizer all over the office. My kind of people.

After I left for work Joshua talked his mom into letting him ride his scooter in the street. Renee got him all padded up and ready to go. He did really well riding and only had a couple of close calls. He rode until he tuckered himself out and then came in for a break. Then went back out and wore himself down again. Wash, rinse, repeat...

He is sleeping peacefully now having gotten to do normal little boy things again. Tomorrow he goes back for more therapy and gets to enjoy his last day before we start up the chemo train again and get rolling down the track.

A day to be pampered... Day 172 03MAY09

Joshua gets pampered just about all the time. Today it was Renee's turn. The Children's Cancer Center had a spa day for the moms at the Grand Spa in Tampa. Renee spent half the day getting the special treatment. A facial from Annetta. A massage from Katie. Mimosas, gift bags, cosmetics, food, the works... It was a wonderful and very relaxing day for her. The spa is usually not open on Sundays but it was today for all the special moms. I was really thrilled that the Cancer Center was doing this, Renee has spent so much time in the hospital taking care of Josh without a break. It was a nice treat that we would have not been able to do on our own. She came home very soft and smelling wonderfully.

Joshua took it easy today, his tennis domination of yesterday left him with a sore arm. No other ill effects though. Tomorrow he is going for his first appointment with the physical therapist. They are going to start working on getting his legs stronger and help him stave off the effects of the vincristine. It has taken us a while to locate a therapist that was near home. We were lucky to find one not far from here. We should have a good exercise routine worked out after tomorrow that we can do even if Joshua is stuck back in the hospital. His legs have gotten really weak from all the vincristine.

Renee's birthday and the beginning of delayed intensification are fast approaching. Only three more days. Joshua has had a good chance to rest up and get a little bit stronger. Hope it was enough for the rough road ahead.

Tuckered out... Day 171 02MAY09

Josh absolutely wore himself out today. It started this morning when he and I were playing tennis on the Wii. Actually he was absolutely destroying me at tennis on the wii. Josh has a backhand that is almost too fast to see. Its like trying to hit a ball that has been fired from a deck cannon. After trouncing me twice he was tired and took a break. A little rest and he is charged back up and ready to go again. 

That pretty much sums up his day. His energy comes and it goes. He plays and then he rests. In between he eats turkey slices or cheese. There is always ranch dressing in the mix sometime in the day. Hope the people in Hidden Valley have plenty to spare.

This afternoon while Renee was out running errands one of Jarrod's friends stopped by. It must be weird coming over to our house. First thing in the door you get stopped, "Have you been sick? Anyone in your family sick right now, or has been recently?" This is followed, if all the answers were no, with the hand sanitization protocol. Immediately followed by a quick sidebar reminder to Joshua to stay away from the potentially infected "outsider". I hate to be so paranoid but it is just the way I think. Always watching, always vigilant. As soon as they leave we sanitize every thing that they were in contact with. No evil germs are welcome here!

Tomorrow it will be just Josh and I for the first part of the day. Tonight I am going to work on my backhand...

Friday fun... Day 170 01MAY09

Joshua had another in a great string of good days. He spent the morning doing school work and the afternoon playing with Jarrod and getting a little fresh air. It has been great to see him have the last week go by with just a few blips on the radar. Hopefully his weekend will be uneventful and he can continue to rest up and gain weight for the next round of chemo that is fast approaching.