Neutropenic Fever

Yay - every cancer parents' favorite occurrence. Neutropenic fever is when your kid has an ANC<500.>101 = overnighter in hospital for at least two days, up to ten days. woo-hoo, no exclamation point.

Yesterday afternoon Max put himself down for a nap on the couch. When he woke up I thought he felt a little warm. By the time I got back with the thermometer he felt really warm. His temp was 101.5 yuck. So we made the appropriate phone calls, packed an overnight bag and movies and Max & I headed out the door with Nicky screaming in Andy's arms that he wanted to come with. (Hannah was at a friends house having a great time.)

By the time we got half way to the hospital I could tell Max was feeling alright because he was chatting like a parrot in the back seat. Hmph. He had no temp when we arrived, but this is a scary occurrence and kids can get really sick at times like these so we aren't going to take any chances and blow it off.

Got Max all checked in, drew a blood culture and labs and settled in for a good nights rest. ha ha.

Andy & I spoke with the doctor on the floor this morning, Dr. Ahn, and the hypothesis is this regarding Max's abdominal pain:
Rapamyacin (which we already believe is causing his diarrhea and tummy pain) causes inflammation and deterioration of the intestinal lining and severe tummy cramps and pain in general. In order to correct this problem we need to introduce really slow formula/pedialite feeds continually throughout the day. We'll also add glutamine back to his diet (Max was on glutamine while on rapa prior to this and we wonder if that's why he didn't have such a reaction the first time around).
We'll have to wait to see what the outcome is, but it certainly makes sense. Regarding his low ANC the doctor has also ordered IV gcsf to bring up his white blood cell count. Max is feeling fine for the most part. Certainly not feverish and yucky feeling, so we hope that with the gcsf his counts do come up and then he can most likely come home tomorrow.


Anonymous said...

So sorry Max had to go in the hospital...hope his counts go up, his tummy pain subsides, and he gets all that he needs to feel better, so he can come home tomorrow. Praying without ceasing...let me know if I can do anything at all...

Always in my thoughts,


Vickie said...

I'll be singing the "break out soon!" refrains. No one likes being stuck in-patient.


Anonymous said...

This is not the way you wanted to spend a summer day...I am so sorry that Max is in hospital..praying for tummy pain to be gone and soon to be home.Can you sneak in his cat? xo Linny

Anonymous said...

I do suspect that glutamine helped the first time around. All too often, I think very small dosages are used in helping intestinal cells increase growth. I think these values can be too small, but in Max's case, likely beneficial. It is not uncommon to see dosings at 1000mg or more (1500mg) used for regular intestinal repair protocols. However, this is not protocol with cancer so your doctor will cap the limit where he/she feels comfortable.

I thought to include other elements used for intestinal repair or increasing healing of tissue include. I know Max is off of supplements, but these can be used as a point of reference.

Vitamin elements:
n-acetyl-glucosamine, MSM, zinc, carnosine

Mucilagenous agents:
citrus pectin, mucin, quercetin, prunus

Herbals include:
DGL, slippery elm, marshmallow root, chamomile,okra, cats claw,

Anonymous said...

Poor Max, poor Nicky, poor you! Hoping you'll be home soon without tummy pain. Also hoping your shower nemesis won't be there! If she is, follow Shiho's advice. :) xolisa

Anonymous said...

As Lisa wrote, the moment I read about staying over night at the hospital, I thought about your spa experience. I wish I can send you a device to fight off your nemesis. Another way to fight may be to pretend to be Darth Vader and start breathing like him; shhh....haaaa...shhh....haaaaa.... Hope Max will be out soon, feeling better. Poor Nicky too. Give him a big hug. I`m sure he had a good "Daddy-and-me" time, though. :-) Shiho

deb schwedhelm photography said...

I'm so sorry to hear that Max is in the hospital :-((( I will be seeing you soon. shoot this week early morning or in the late-er afternoon???

Hope Max's fever stays away, cultures are clear and diarrhea is gone...SOON!


Anonymous said...

Hope Max is feeling better, and able to enjoy a little bit of summertime. (and you as well!!!) You are all always on my mind, and in my heart. Hugs to sweet Max, hope Naboo is giving him lots of kitty kisses!!! Smiles....Ms. Weitz

Anonymous said...

Hey Max! I have been thinking about you all day. I hope and pray that you get to come home tomorrow!!
Love to you and your family!

San Diego Mom said...

Read Deb`s web page. Bloke my heart. I wish you had a time and place to cry as much as you want. I hate telling you to be strong. I hate encouraging you to keep a smile on your face. I hate there is nothing we can do to ease your pain and burden. I hate there is no cure to be found. I hate NB. I wish I can find more positive and cheerful words to end my comment. Shiho

Deqlan said...


Anonymous said...

Hi Max,

Sorry to hear that you and your mom are having to hang out at the hospital. Hopefully, you can come home soon.

Noah asked me to tell you that Maximillian is a very common German name with the short form being Max. It means:

"Roman family name which was derived from Latin maximus "greatest". Saint Maximus was a monk and theologian from Constantinople in the 7th century."

He says the name really fits you because you are the greatest Lego builder.

If you want a super cool interactive Q&A video to watch while hanging out at 'spital, we can loan you our new Planet Earth DVD game. We have played it a few times, and Noah and Zoe just love it. Let me know if I should drop it off, or if you're up for visitors. :-)

Noah, Zoe, Leigh & Ingo

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