4 weeks to go!

What's up? Hayden's neutrophil count, that's what! He was .83...up from just .44 last week.

He easily cleared the minimum to restart the Delayed Intensification (DI) treatment phase. So Hayden was admitted on Tuesday to the Children's Hospital for an overnight stay. He was hooked up to fluids through an IV (via Iron Man port) to keep him well hydrated, which is required with one of the chemo meds he received, called cyclophosphamide (try saying that!!!). He also got a familiar chemo drug called cytarabine (AKA ara C). This is given with anti-nausea meds, also through the IV. Plus, we started a new chemo med, called thioguanine. This one's a pill that we give him every night - but must be on an emply stomach (so much for bed-time snacks).

The hospital stay was fairly uneventful. As is the custom, we brought Goosebumps movies...these cheesy movies scare the pants off kids but H loves them so they are a special treat reservied for the hospital (Viewers Choice Video was so touched, they give us 2 for 1 family movies...they're awesome with H). One unexpected but totally welcome perk of the scary movies was that Hayden got totally freaked out and insisted that I sleep with him. That may not sound like much of a bonus but I'll take 1/2 a hospital bed over the fold-down chair any day. In the end, neither of us got much sleep because he needs to frequently pee when he's on the IV drip.

On Wednesday, before being discharged, he was back at the PDU for a spinal shot of methotrexate (this too has occurred in every other treatment phase). Plus he has home nurse appointments today and tomorrow for thigh injections of cytarabine (he hates it!). Aside from the fact that he hid and I couldn't find the little bugger (he was quite pleased with himself over that), today went really well so hopefully he will be less anxious about tomorrow.

Hayden was sick this morning but he's been fine since...even keeping small amounts of food down (probably thanks to anti-nauseau meds we gave him). DI is, to say the least, a very intensive treatment phase...but it's also the last one before we hit maintenance. That's right, now that we're rolling again, we're only a measly 4 weeks away from cruise control (yeah!). Actually, the last 2 weeks are relatively easy so, really, we're are sooooo close.

With all of this chemo, we expect Hayden's blood counts to drop again...possibly in a week (back to neutropenia). So tonight, we are heading out to see Transformers: Revenge of the Fallen. Unfortunately, we have to miss Uncle Ray's birthday but we may have a very small window of opportunity because Hayden's friend, who has been patiently waiting, is heading out of town tomorrow. A few months back, Hayden gave his school buddy a gift card for the theater and made plans to see the movie together when it came out. However, Hayden's counts dropped (so no immune system) and he couldn't go out crowds. It is sooooo sweet that this little guy waited all that time for Hayden - by his own choice! Hayden is so pumped.

So we gotta go. Happy Birthday Uncle Ray...hope you have a great night too!

The plan(s)

Plan A:

1. Tom takes H to clinic tomorrow and neutrophil count is at least .75
2. Bed shortage still happening so H restarts his chemo as an outpatient
3. Cindy leaves work a little early to take over at the clinic when Tom goes to work
4. Everyone sleeps at home Tuesday night
5. H feels well on Wednesday & Thursday
6. We take off for the lake on Friday
   
7. Hayden goes to see Transformers: Revenge of the Fallen after the long weekend
   

Plans B thru D:

• Neutrophil count is <.75 – skip steps 2, 3 & 7
• Neutrophil count is >.75 but no bed shortage - change step #3 to Cindy spends Tuesday night at the hospital with H; skip step 4
• H feels unwell after chemo treatments – change step #5 to Cindy works from home; skip step #6 and go directly to step #7

Got it?

8

Hayden is 8! He had a great birthday on Monday - we celebrated with family and friends and he got lots of amazing gifts.

Eight is considered a lucky number in more than one culture...not ours, but at this point, what the hell...let's go with the lucky 8 thing:

• Hayden's neutrophil count yesterday was .44 (4+4=8)
• His next appointment is July 28 (8 is the last digit in 28)
• His name starts with the 8th letter of the alphabet0
  

I may be stretching the limits of numerology here but maybe we're on to something. I guess we'll find out next Tuesday - that's when we go for another blood test and get the results of today's bone marrow tests. If his neutrophil count is at least .75, he'll be admitted to begin the second round of chemo in this ever-lasting Delayed Intensification (DI) treatment phase. The bone marrow tests are more of precaution to make sure there's nothing funny going on in there. It's hard not to worry, but we've had delays before and they did similar tests that turned out fine. Today's procedure was painful because they did a biopsy, but morphine fixed him up and he was riding his bike a few hours later.

We have about 4 weeks left in DI - one measly month until we're in the maintenance phase! Everyone is eager to get going...except Hayden. He's quite content to stay chemo-free for a while longer. For him, the only downside is that he's neutropenic so he can't go out - which means he can't see Transformers. Plus we had to re-schedule his kids' birthday party because laser tag at FunFX is out of the question right now. But still, I wonder if he's somehow holding out on us...

Good 'ole Grover

Remember when Grover on Sesame Street educated us on relative distance by jamming his face in the camera and mumbling ‘near’, then galloping to the back of a cavernous room and screaming ‘far’. Well, if you missed that episode, here’s another attempt…

Close is when you…

…stop fiddling with your car stereo and look up in time to narrowly miss a parked car

…get the sturgeon all the way up to the boat before it breaks your line

…find the perfect pair of shoes, 50% off, but one size too small


Not even close is when you…

…have a neutrophil count of .3

This blog is brought to you by the letter F and the number .75.

Neutrophils 101

This educational message is brought to you to prevent summer brain drain...

Neutrophils are a type of white blood cell that fights infection. When Hayden’s ANC (absolute neutrophil count) is low, we have to limit his exposure to…well almost everything except school…because he has a weakened immune system. As you can imagine, this is much more tolerable in the summer. His ANC is low because he is receiving aggressive chemotherapy treatments, which attacks both the healthy blood cells and the lymphoblasts (AKA blasts – these are the immature cells that went haywire and, if left untreated, would rapidly reproduce and crowd out the good guys). So we expect all of his blood counts (including red blood cells and platelets) to drop during or after treatments, then regenerate. At first, Hayden’s counts rebounded pretty quickly but they seem to be taking their sweet time lately…which delays treatments. The protocol requires that his ANC is at least .75 to continue chemo (normal is 1.5+).

Ready?

Well, we find out today if Hayden’s ready to continue his Delayed Intensification treatment phase. If his neutrophil count is at least .75, he’ll be admitted to the CK5 ward in the Children’s Hospital for one night to run fluids and give him chemo. He was at .38 last week so this may be a close one…stay tuned.

Go ahead JUMP

Hayden is loving his new trampoline! For a while we thought about getting a play structure but jumping is good physical therapy for him and it’s what he really wanted. A big thank you to the folks who generously contributed to this project. He will get years of enjoyment from it.

Hayden had an appointment on Tuesday, June 30 and, as suspected, his blood counts weren’t high enough to re-start chemo treatments. We did, however, make a day out of that clinic visit to rule out a blood clot in his Iron Man port (it’s rare, but it can happen). Dr. Stoffman suspected that Hayden might have one because his face was still puffy and his veins were really visible - but an ultrasound showed good blood flow. So that was a big relief…and the fact that he didn’t get any chemo means that he was feeling well for our Crowduck fishing trip! The weather wasn’t great but he loved it and went back out on Nutimik Lake the next day.

He was back at the clinic this Tuesday to see if he was ready to go. In fact, we were all prepared to spend that night in the hospital to start the second round of the Delayed Intensification treatment phase. Damned if he didn’t trick us again though…huh. His counts are still fairly low so we try again next Tuesday. The good news is that Hayden feels great, he’s happy, and active. It is so good to see him good! He recently golfed 9 holes and pretty much walked the whole course. He visited a movie set in Tyndall. He hit the driving range. He is a busy boy…and these are all things he can do despite being neutropenic (low on infection-fighting blood cells) because it’s all outdoors. The bad news is that it’ll be a little longer before we hit the maintenance phase (AKA cruise control)…and he still really wants to see Transformers!