Tuesday, March 31, 2009

Snacks... Day 139 31MAR09

Joshua has found a favorite snack at the hospital named appropriately enough "Snack Mix, Kids Mix". I was immediately struck by the very inventive and subtle name. I have been unable to locate this particular product outside the walls of the hospital and the dietician only sends up one bag a day.

I realized today at the grocery store what a geek I can be. I walked up to a stock person and held up my iPhone with a picture of the aforementioned snack mix displayed. "Do you carry this?"

Total geek move.

But man it is sure cool that I can do that!

Now if I could only use the phone to calculate the GPS co-ordinates of a case of the snack mix... That would be totally cool! It would also win me major brownie points with Josh.

Joshua has been keeping his temperature down for the most part today. His counts dropped. His ANC is down to 1518. We hope to start chemo tomorrow. We will find out when Dr. Tebbi stops by in the morning. There may even be a chance Josh could get released for good behavior. I will keep my fingers crossed. Jarrod is spending the night at the hospital per Joshua's request. So tonight it's just me and the cat...

SPOILER ALERT! If you do not want to know the sex of our currently in production grandchild read no further. Also, do not read any of Jamie's comments ever again. She will never be able to keep it a secret. Skip over the next bit of prose and go straight to the picture.

For everyone else here it is! Jamie and Christian went in today for their first ultrasound. The baby is perfect and the due date in September still stands. I got an excited call from Christian as soon as they were done. He was talking a mile a minute. I remember well the first time I saw each of my children on a little black and white tv monitor. A vaguely human shaped little bean floating in what appeared to be outer space. It is a man's first deep-rooted connection to his unborn child. Seeing it on that little screen somehow makes it more real and solid than it was before. It is a defining moment. Especially when it is your first glimpse of your perfectly formed daughter to be! If you look carefully at the picture you can see her with her hands at the side of her face looking out. We are thrilled!

Okay if you didn't want the spoiler you can start reading again. Enjoy the picture of our in production grandchild. If you look carefully at the picture you can see h** hands at the side of h** face looking out.

We are very excited and are really looking forward to being grandparents.

Did that sound believable? I have been practicing.

In all honesty we are thrilled. It is still a little hard to believe. We are still so young...

Monday, March 30, 2009

Waiting... Day 138 30MAR09

The morning started like any other. Except Joshua had a fever of 101.2. Yesterday was apparently a harbinger of today.

Renee packed while I got breakfast for Joshua. He managed to enjoy it for about ten minutes before it decided to come back up. So begins another chapter in our gypsy saga. But hey, at least we had six days at home this time. That is one more than the last cycle.

Joshua got admitted right away and the battery of tests has begun. Blood cultures, urinalysis, stool cultures, throat cultures, cultures from distant galaxies, and a chest x-ray.

His CBC came back really good. ANC at 4045, platelets 190, hemoglobin good. Nothing to sneeze at, except you aren't allowed to sneeze around Josh. Much bad juju in sneezes. Some of the tests have already come back negative, others are still pending. This is a repeat of the events a few weeks back. Fever, no specific cause, etc...

Joshua took the fact that he was going back in stride. He was a little disappointed but quickly got over it. He is remarkably adaptable and manages to weather these changes admirably. I think we are all getting more adept but it is still painful and unsettling. Our world can shift so quickly.

Here is a special picture for Nonna on her birthday. This smile is just for you.

Joshua wishes you a great birthday and he misses you.

This evening he was resting comfortably. Only took a little nap today. The long sleep seems to be over. Whatever his brain needed to take care of it has apparently had enough down time to get it accomplished. The real reason for somnolent episodes is unknown. His appetite is good. I took a bunch of food this afternoon for him to eat while he is gone. One less thing to worry about for now.

Renee was reading to Joshua this evening and he liked a piece of scripture that he heard. He asked that I share it with you. It comes form the book of Joshua, Chapter 1 Verse 9: Be strong and of good courage, do not be afraid, nor discouraged, for the Lord your God is with you wherever you go.

So now we wait, again.

We wait for some result that will give us a clue or an insight.

We wait and hope that Joshua will make it home by Saturday so he can celebrate his seventh birthday at home. It would be nice if we could manage to catch one holiday here.

We wait for his chemo to get back on track. He has stalled out again.

We wait to be reunited.

We wait.

In the meantime we fight to keep the darkness and fear at bay. Relegated to the edges. Never far away. Always waiting.


Sunday, March 29, 2009

You make the call... Day 137 29MAR09

When your child is pacing the floor moaning.

You make the call.

When he is complaining that his legs and lower back hurt.

You make the call.

When he was up every two hours through the night with the same complaints.

You make the call.

You dread it.

Dialing the numbers is like wading through mud.

You recite the symptoms to the answering service, hang up, and wait.

Immediately your thoughts are swirling. What do we need to pack? How long will we have to stay this time? Maybe it's nothing. I wonder what his counts are? Sounds like his hemoglobin might be low and he needs a transfusion. What does the mommy radar say? You do several gut checks and ...wait for the phone to ring.

It does.

She speaks to the doctor and relates what is going on. He asks a few questions. Renee hangs up the phone. Our eyes meet and she smiles just a little. "We don't have to go." A small cheer erupts inside us. Then we get back to the task at hand. "What did the doctor say?" "What do we need to do?" We discuss the information and then put it into action.

This time we give Josh some Tylenol and have him lay on his stomach with a heating pad on his back. The pain in his back is probably from his bone marrow re-growing to replace what was taken out during the biopsy. The pain in his thighs is probably due to the Vincristine he has been taking. This time we get to stay home and rest on a rainy day. This time our fears were swept back into the corners .

But you never know when you make the call.

Saturday, March 28, 2009

Waffles are for dinner... Day 136 28MAR09

Joshua had visitors today. Jamie and Christian came by to see us and hang out with Josh. Jamie is doing really well other than the fact that her tummy is getting bigger all the time. She will hit the sixteen week mark tomorrow. They go in this coming Tuesday for their first ultrasound. I expect we will have pictures of our new grandchildren before the day is out.

The weather today was warm but very windy, storms are coming in tonight. We all managed to get some great quality time in outdoors. Renee read on the back deck. Jarrod played in his sandbox. I hung out in the hammock. Joshua got another walk in on the golf course.

Josh slept less today than he has been. He only took two small naps. Maybe he is finally done with the somnolence. He has stayed hungry, he asked for Mickey Mouse waffles for dinner so Renee and I whipped some up. I always loved having breakfast for dinner!

Friday, March 27, 2009

Get 'em up and moving... Day 135 27MAR09

Back when I was a kid getting enough exercise was easy. All my mother had to do was say yes. If she would let us out of the house we were good to go for at least a couple of miles of bike riding. Several hours of walking, climbing, and running. On top of whatever else we could find to conquer.

Today things are a little different. I still get my kids to exercise a little by saying yes. Just now it is in answer to the question, "Can we play with the Wii?" In our age of electronic entertainment it takes a little more encouragement to get 'em up and moving. At least for Joshua it is good physical therapy.

We managed to get the kids to go outside for a little while this evening. When I was a kid the problem was getting us into the house not out of it. It was a nice family walk with me desperately trying to get a picture of Joshua before he turned his head or put up his hand. He is a little tired of having his picture taken right now. I can understand.

So today ended up being another uneventful day.

Joshua is still doing well and has been hungry every time he wakes up. We are trying to put five pounds on him by May, one little ounce at a time. Not as easy as you might think. We pump as many calories into him as we can, but the weight comes slowly. We are determined to get him to exercise a little each day to build up the strength in his legs and ankles. A little fresh air mixed with some sunshine and a cool breeze in your face doesn't hurt either.

Thursday, March 26, 2009

The sleep continues... Day 134 26MAR09

Joshua is still spending most of the day sleeping. He seemed to have a little bit more energy today. He could be thinking about getting out of his somnolent episode. Only time will tell.

School got cancelled today so Joshua got a small reprieve from homework. School work is one of the things that we can make up and do not really worry too much about right now. He will get caught up when he is feeling better and things have quieted down a little.

While he was awake this evening Joshua wanted to take another walk. So Jarrod and I went walking with him. He did pretty well but started to get tired pretty quick. Walking in the grass is good exercise for his legs. They are getting continually weaker from the Vincristine and his lack of exercise. Jarrod and I will keep taking him out to walk if he wants to go.

It is tough to see him so weak. He was always the kid with tons of reserve energy, always running, always climbing. Now he ambles along like an old man gingerly picking his way across the uneven terrain. It saddens me. I keep telling myself it is only temporary, that he will be his old self again soon. But much time has passed already and the road ahead is still long and hard. But just like Joshua walking this evening we will conquer the rough road one small tentative step at a time. We will walk this road together, all of us.

Wednesday, March 25, 2009

Our first date... Day 133 25MAR09

Joshua again spent most of the day sleeping. He is, we believe, still in a period of somnolence which may go on for another week or so. This could have, according to some research papers I read, possibly been the cause of the fever last week. Children who get cranial radiation almost always experience somnolent episodes and they will spontaneously resolve after an average of 18.5 days. This would be later this week. It may continue for over 30 days but this is pretty rare. They may also have febrile episodes as well as anorexia and stomach issues.

During some of his awake time he spent some time outside with Jarrod. The weather has been wonderful for him to get a little outdoor time.

Renee and I had our first date this evening since Joshua got diagnosed. I had bought tickets to go see Jesse Cook last June. As the date for the show got closer and closer we really started wondering if we were going to be able to go. Luckily everything worked out and we had a great time. Up until now our "dates" have consisted of going to the hospital cafeteria together. Jarrod and Joshua spent the night at Renee's parents. It was fun to be a "normal" couple for a little while.

Tomorrow Joshua has school with Ms. Lydia, it has been tough on him to get back into the swing of things this week. He has been out of school for weeks now and he did not really feel like doing much today. He continues to eat well other than not knowing what he wants.

We hope to cruise through this week without any more problems and be ready for chemo on Monday with good counts and Josh rested up.

Tuesday, March 24, 2009

How about some... Day 132 24MAR09

Joshua's second day at home he spent asleep. At least for the better part of the day. When he is awake the conversations go something like this:

"I'm hungry."

"What would you like?"

"I don't know."

"How about some X?"


"How about some Y?"


"How about some (go through every edible item in the house)?"

"No." "I'm hungry." Repeat several times as needed.

I think he has a hard time deciding because nothing tastes right anymore. I am really not sure. Nonetheless he still manages to find things to eat after a while.

The big news for the day...

His bone marrow biopsy came back clear.

No cancer cells present!

This was really a relief to hear. The chance of a possible relapse has been lurking in the corner of our minds for several weeks. At least now we know that the fears were unfounded. We still do not know what was causing the high fever. It has decided to remain a mystery for the time being.

Josh will continue on his chemo schedule without losing any time. This was the other good piece of news today. We were concerned that the delays he ran into would push his schedule out of whack. So, he has the week off until next Monday when he will go back to the clinic and get more chemo. He will also go on Tuesday for PEG (the shots in his legs).

In the meantime we are going to try and get him up and moving. He has been lying in bed for a long time. We took a walk outside this evening to get a little exercise and fresh air. He managed to walk halfway and got a ride from Dad back to the house. It was good to get him out for a little while.

Monday, March 23, 2009

Home again... Day 131 23MAR09

Joshua is home!

After a rather long and arduous day Joshua managed to get out of the hospital and return home. His day really started at midnight last night when he went NPO. He was very hungry (yeah!!) by the time he got done with the bone marrow biopsy at 2:00. He got something to eat and we restarted chemo again this afternoon. He got the IV methotrexate and Vincristine he was originally scheduled to get this past friday. Hopefully this will not throw his roadmap schedule all out of whack. His counts have stayed up and look good right now.

Jarrod and I spent the morning hanging out with a bunch of dead people. We went, along with Grandpa Gandy and Christian, to the Bodies World exhibit at MOSI. It was fabulous. What an amazing creation the human body is. Jarrod also got to see his first IMAX film in the dome. He thought it was really cool. It was a wonderful day and we enjoyed being together on our "guys" field trip.

Joshua has spent most of the evening sleeping. The days events definitely took their toll on his little body. A good nights rest at home should do wonders for him and we hope he is feeling much stronger tomorrow.

So we are a whole again.


Gypsy wagons carefully parked in the side yard in preparation for the next journey.

Suitcase on standby near the front door.

But for now, we are home.

Sunday, March 22, 2009

Not a happy camper... Day 130 22MAR09

Joshua is not a happy camper.

He is tired of being stuck in the hospital.

Tired of not feeling good.

Tired of running a fever.

He is just plain tired.

When Joshua gets tired, he gets crabby.

Today his temperature has stayed low. His ANC is at 762. It is an improvement and may mean that whatever has been afflicting him has left for other pastures. If we only knew what "it" was. We are scheduled for a bone marrow biopsy tomorrow morning. Not sure how long it will take to get the results back from pathology but we are hoping we will know something late tomorrow. There is a possibility that Josh will be able to come home after the procedure.

He would really like that.

We would really like that too.

I took him more food and some DVD's he requested this evening. The not eating thing seems to be just a memory. Which is a great thing. We can keep fattening him up when we get him back home. Father John from Saint Ann's came by this evening to visit Josh. They had a nice time except Josh kept falling asleep. Jarrod had a fun weekend. He spent the night at his friends house Friday and then his friend stayed with us last night. He may have not gotten much sleep but he had a good time.

Hopefully we can put some of our fears to rest after tomorrow. Hopefully what put Joshua in the hospital was just a virus or some silly bug that was floating around. Hopefully we can get him home soon.

Mostly we run on hope...

Saturday, March 21, 2009

Stuck... Day 129 21MAR09

Joshua has managed to keep the fever in check below 100 so far today. If it goes back up to 101.0 or higher they will start him on a anti-fungal medicine. We are hoping he keeps his temp under control as the meds have some unpleasant side effects.

In the classic balance game Joshua's temperature is better but his counts are worse. Just when he gets one thing under control another pops up. His ANC this morning had dropped to 482 which gets an blue sign on the door.

As long as the sign stays so does Joshua.

Renee came home tonight for a little R&R. Her mom is staying with Josh tonight so Renee can have a break. It is nice to have her at home for a night. So far we have only been together at home for five days in March. The life of gypsies.

I got the chance tonight to go and receive a very generous gift from the Perillo-Stafford Leukemia Foundation at their annual golf tournament. They support families with leukemia each year and we are very grateful for their financial help. Thank goodness for the kindness of strangers.

Monday or tuesday Joshua will probably have a bone marrow aspiration to test and make sure there are no signs of a relapse. Just trying to rule out one more possible cause of his fevers. Until then we will all hope that he keeps the temperature down in his little body and he continues to eat.

Friday, March 20, 2009

Testing... Testing... Day 128 20MAR09

The doctors ordered more tests today to try and determine why Joshua is running the fever.

He had a CAT scan on his head, chest, and abdomen. It came back "unremarkable". Which is good.

He had several more blood tests which came back negative.

We will know more in the morning when the doctor comes in on rounds. So far still no answer as to what is going on. His fever was down this evening to 99.7 and seems to be holding steady. We are really hoping he makes it all night without going up any. Check back tomorrow and we might actually have some kind of answer.


Thursday, March 19, 2009

More of the same... Day 127 19MAR09

More of the same today. Joshua is still running a fever and so far no cause has been found. He is  still doing okay on his food intake. I took him some requested food this afternoon. Renee and I are less worried because Dr. Tebbi doesn't seem worried. But we both still wish we knew why Joshua's thermostat is all wonky.

So Josh and Renee are staying in the care of our friends on TCE until further notice. Not sure when we are going to get home right now.

For the time being we will remain gypsies and stay spread out in different places.

Wednesday, March 18, 2009

Back on the TCE... Day 126 18MAR09

Josh was having fun with the temperature probe covers today...

We finally got back to the TCE floor this evening. We are glad to be back at home on the Hem/Onc floor where we have spent so much time already. 

I got the chance to spend three different parts of my day at the hospital with Josh today. He is still running a pretty high fever that is responding to Motrin but not to Tylenol. He managed to get up to 104.2 last night. Still no definitive answer as to what is causing the fever but all of the test results are not back yet. Hope to have an answer in the morning. His fever was a little lower this evening at 101.5. Big improvement from last night. We are hoping it stays down overnight.

 He is at least still eating and is slowly adding on a little weight each day. The Megace seems to be doing its job stimulating his appetite a little.

Renee somehow survived sleeping in the torture chair last night. I am sure it will take her days to work the kinks out. Now at least she has a bed to sleep in with an actual mattress. We are braced for an extended stay but hoping against all hope that they will come home soon.

Tuesday, March 17, 2009

That's when it happened... Day 125 17MAR09

Joshua was having an okay day this morning. He woke up early and had breakfast and then he decided to take another one of his naps around 10 o'clock.

That's when it happened.

Actually he waited until I was all the way in Orlando and stuck for several hours.

That's when it happened.

Renee called me and said, "You remember what you were afraid would happen?"

"Yes", I said knowing exactly what was coming next.

"Well it happened."

Joshua was running a fever of 103.0 all of a sudden and Renee was in the car taking him to the hospital. It came on very quickly. He was also complaining of pain in his stomach and lower back. Doctor Wynn couldn't find anything obviously wrong with him. So we got admitted...

We are back in the hospital for a while. Gypsy mode engaged. Just when we all got used to being together at home again.

I was afraid this was going to happen.

Let me explain.

When I was looking at how many games I could shoot during Major League spring training back in February, one of my major concerns was that I would be stuck at a game in Orlando or Kissimmee and something would happen with Joshua. I would be unable to leave for several hours and have a long way to travel to get to the hospital. I guess I was right.

Joshua is still running a fever of over 101.0 and we are waiting for labs and cultures to come back to see if there is a definite cause. He has been running this low grade fever for over three weeks now. No apparent cause. It makes both of us instantly remember the weeks before he was first diagnosed. Low grade fever that came and went, lethargy, loss of body mass... That is not a happy place for us. We are getting pretty good at dealing with the things we know about. It is the unknown that keeps us on edge.

His CBC for tonight looks good: ANC over 5000, platelets and HGB down a little from yesterday. Temperature at 101.7 and going up. It will take two days for blood cultures to come back.

Until then we wait.

And hope.

Holy Mackerel... Day 124 16MAR09

Joshua went to the clinic this morning to get a CBC. His ANC was 4299! That is the highest it has ever been. All of his other numbers looked great as well. It was really nice to get good news for a change.

Somnolence (or "drowsiness") is a state of near-sleep, a strong desire for sleep, or sleeping for unusually long periods of time. Our best guess is this is what Joshua is doing right now. It would be in response to the radiation therapy he got the first of this year.

It all looked kind of familiar, but we just couldn't put our finger on it. And then it hit us, Joshua has taken up Hobies lifestyle!

All Hobie does is sleep, wake up, walk fifteen feet to his bowl to eat, and then fifteen feet back to a place to lay down and fall back asleep. This is exactly what Josh has been like. You be the judge.

He is still eating, the hardest thing for him is trying to decide what he wants. The chemo makes everything taste weird and the foods he has always asked for are no longer appealing. We are slowly building up a list of things he will actual eat. After we get the list the fun begins as Renee and I try and figure out how to augment the calories without making it taste funny. Although for years people have been eating crisco with powdered sugar...

Sunday, March 15, 2009

Sunday... Day 123 15MAR09

The resting continues. Joshua is still struggling to get back on track. He will hopefully do as he has before and get better as he gets more used to the chemo drugs in this cycle.

He is eating but has not gained any actual weight so far. We are trying different ideas to supplement his caloric intake while keeping things in the edible realm. It is really quite interesting, we sit around and try and figure out how to get him to eat everything we would ordinarily not want him to eat at all. It goes against all the stuff we learned in our parenting classes. But desperate times call for desperate measures. Actually a lot of the stuff he should eat are those guilty pleasures all of us adults really love:)

Jamie and Christian (and Bella) came to visit today. It is the first time they have been to the house in several weeks. Jamie is looking great as she nurtures our grandchildren. Josh was really happy to see them. Hobie was not real happy to see Bella but they worked it out.

Jarrod has been hard at work re-designing and expanding his gantry crane design. He took a few pictures to show off the latest incarnation.

Saturday, March 14, 2009

Super Sib... Day 122 14MAR09

Joshua had a pretty good day. He is still pretty tired and spends most of his time resting but he is eating better. We think that the new chemo is just wearing out his tiny body. He is trying very hard to be his old self but it is more than he can do right now. He just does not have the energy. His temperature at least seem to have moderated and didn't get above 99.0 today. What a relief.

Jarrod got a trophy yesterday from Super Sibs for being a great sibling to Joshua. He is really a great brother and takes good care of Joshua. Super Sibs is an organization that recognizes siblings of kids with cancer and they provide great encouragement. It is easy to get lost in the shuffle for a sibling. We do our best to keep Jarrod from feeling like he is slipping into second place in our lives.

It was a beautiful day today and this afternoon Josh and I got a little hammock time in. He is a wonderful cuddler and we enjoy being outside when we can. One more day of rest and then he is back to the clinic for labs. I really hope his counts have stayed up. He body needs a break from fighting so hard all the time.  

Friday, March 13, 2009

Still resting... Day 121 13MAR09

Just a quick update. Joshua again spent most of today either sleeping or resting on the couch. He is just worn out. We have nothing planned all weekend so he can rest as much as he needs. Still dealing with a low grade temperature. We are still baffled by what is keeping it up. Could be a combination of so many factors. We may never know for sure. As long as it stays under the "lets make the call" temp we will be happy for now.

Thursday, March 12, 2009

Resting... Day 120 12MAR09

Joshua has spent the better part of today, except for a few hours, asleep. The hospital stay, the chemo, it all caught up with him. He, at least, ate well while he was awake. It was great to be able to cook for him again.

He gave us a little scare this afternoon when he all of a sudden started in with a 100.4 temperature. We all went numb for a few minutes as we silently wished the fever away. It dropped shortly after to a respectable level. This darn fever is just haunting Josh. The scary thing for us is the last time we had an unexplained fever that wouldn't go away our lives changed forever. There seems to be nothing wrong with Josh that the doctors can find. Everything checks normal. His little body has just run a fever for several weeks this time.

Jarrod decided today that his port city needed a gantry crane so we talked about the design for a little while and then he built it. It was pretty impressive. If LEGO is smart they will hire Jarrod right out of college.

We are going to keep all of our fingers crossed, which makes it rather hard to type, that Josh will sleep through the night and not develop a fever.

He needs all the rest he can get, but he needs to get it here.

Wednesday, March 11, 2009

Homecoming... Day 119 11MAR09

Today was the day Joshua finally got to come home! He got his PEG shots at 1:30 and at 4:00 they let him out into the sunshine.

Jarrod and I are thrilled that both Joshua and Renee are back at home with us. It has been a long 11 days. We have enjoyed our time together, just the two of us. But it is time we were a family again.

Joshua has been doing well this evening. A little tired but otherwise doing good. He has a much better appetite than when he left and it is great to see him actually asking for food. He will continue to take the Megace, to stimulate his appetite, until he puts on some extra weight. I know that we will be constantly asking him if he is hungry. The kitchen is always open in our house.

Jarrod wanted to share the LEGO project he has been working on these past few days. He can spend hours informing you of every little detail about its operation and design. He has such a wonderful imagination, I hope he never loses it.

If Joshua stays fever free he gets an eleven day break before he has any more chemo. He will go to the clinic next week to get blood drawn and check his counts. He left the hospital with an ANC of 1749. We are hoping that it will stay up for a little while. Neutropenic kids get stuck in the hospital for ridiculous amounts of time.

So now we adjust again. We go from being two separate groups to being a whole again. It will take a few days for us all to get back into the groove of things, but it is worth it.

The gypsies have all returned home.