Phenon Updates

It’s been a long, hard day, and I’m afraid we’re in for a long, hard night.  Many, many teams in today.  Pain management, cardiology, general pediatrics, surgery, oncology, different nurses.  Phenon has been in a lot of pain, and she’s been really nauseated.  She’s eaten maybe 8 bites of food today.  Each time she said the food tasted fine (with the exception of 1/2 of a spaghetti noodle – they cooked it hospital-style to make it NASTY), but her stomach hurt too badly to eat any more.  Reliably within a half-hour of each dose of percocet she would feel horrible.

So, tonight at 6pm they switched her over to tramadol.  I’m afraid it’s not working.  At first she got kind of loopy (e.g., her oxygen alarm went off so I went to adjust her oxygen feed (given to her through nasal canula, if you want to know!) and she was so confused she stuck them into her mouth and asked where the nose tubes were.  But now her pain has risen to 7 on the pain scale, and she’s moaning her way through fitful sleep.  I’m kind of losing my mind with frustration and exhaustion.  I don’t know how to help her.  I did about an hour ago, though, when a guy came in to draw her blood.  Then it was VERY clear.  They didn’t tell us they were getting more blood from her today.  That continues to be difficult, but the fabulous nurse Kerry taught her how to use numbing cream to ease the blood draws.  You just need about 20 minutes notice, and we had none (obviously, our nurses were not Kerry or Rose or Chris today; today was Cassie).  I told him to come back in a half an hour.  But she was his last patient of the day and he was 30 minutes late ending his shift.  I wouldn’t let him in.  I asked him to call the nurse and the doctor and see what alternatives there were, and then let him in to check her arm to see where they were most likely to draw blood from later tonight or tomorrow so we know where to numb.  He kindly helped, and then went home.  There was a bit of a stink about it – I made things a bit of a bureaucratic pain in the ass, I gather.  Tough shit.  She’s been such a damn good sport about so much of this hideous crap that I was not going to let them catch her off guard like this.  Plus, since they had to switch her IV because of the fluids infiltration yesterday, they will have to draw her blood from her still sore partly-Popeye arm.  That’s just damn mean.  They agreed to draw her blood at 6 tomorrow morning.  It is needed for oncology, and I’m developing a full-blown love affair with the doctors of the oncology department, so I’m forgiving them for needing more, and will allow the blood draw in the morning, despite the meanness of it all.

How can so much happen in a day?  I feel like I have so much to update, and am trying to update largely one-handed to be able to keep a comforting hand nearby Phenon when she needs it.  Phenon had an ultrasound of her heart today.  Informally, they said everything looks fine and strong.  They needed a baseline for oncology because some of her chemo medicines can do some heart damage.  She also had visitors – my dad (Bob), Bobby (her uncle), Tania (her aunt), Lucia (Tania’s mom), Colleen (my cousin), and Cheryl (my friend).  She got lovely presents and enjoyed talking to those who weren’t interrupted by the millions of doctors and poking and prodding and pain.  Something Tim and I noticed and discussed at length today:  my girl is a social animal.  I’m sure this is no revelation to any of you reading this.  But it is really important.  Several nurses and doctors have commented that she is not watching tv or reading or playing games or looking at magazines.  She is either in pain, or she is talking to (or texting with) someone.  When she is talking to someone and engaged, she is doing alright.  She is happy and joking and interested.  She may not be terribly animated or initiating new topics of conversation, mind you, but she is present and happy.  When she is not in direct interaction, on the other hand, she is uncomfortable, and sad, and the pain becomes close to unbearable.  She doesn’t really need activities right now, or jobs to do, or things to entertain her.  She just needs someone to talk to her, and follow her lead about what is interesting and what she is up for.  Friends and family are good.  It’s a good thing she’s got both in spades.

The other big development today was my long meeting with the oncology doctors.  They got very specific today about what to expect from chemo, and went over every medicine they will be giving her and the specific side effects of each.  They also gave a more detailed diagnosis than we previously had.  Here it is, the name of the enemy.  Isn’t there something in the old religions about once you know someone’s true name, you can harm him more readily?  Lymphoma, here comes the wrath:  classical nodular sclerosing Hodgkin’s lymphoma.  Right now, they believe her to be stage 2A, with bulky mass (that means the tumor is big).  Tomorrow they do another surgery (to insert a port, which is a kind of long-term IV entry point so that the stick when she goes in for treatement will be much less painful and more directly targeted to the area it needs to be) and will add a bone marrow biopsy to the procedure.  If the lymphoma is in her bone marrow (which they hypothesize it is not), then her stage would be 4A.  They rate her risk level as intermediate, which the vast majority of children with lymphoma are classified as.  87% of children with this specific lymphoma are cured entirely by a 12 week course of chemotherapy.  There is a high rate of complete cure with no recurrence.  That means, once you kick its ass, it runs away and hides from you forever.  So there.

Chemo will be 12 weeks consisting of 4 3 week rotations.  It will look like this:

Day 1 (Monday):  6-8 hours of chemo at Children’s Hospital plus steroids at home.

Day 2 (Tuesday):  4-6 hours of chemo at Children’s Hospital plus steroids at home.

Day 3 (Wednesday):  2-3 hours of chemo at Children’s Hospital plus steroids at home.

Day 4 (Thursday):  no chemo, but an injection at Children’s Hospital or we learn to give the injection at home.  Also steroids at home.  Most kids feel like totally doo-doo on this day.  If they are not vomiting, they really want to, despite the anti-nausea drugs they give.  Kids do not go to school on this day.

Day 5 (Friday):  Steroids at home only.  Thank goodness.  But you still feel like shit.  The world is a pile of poo and you likely hate it very much.

Days 6 & 7:  Steroids at home plus possible prophylactic antibiotics to prevent the most dangerous infections.

Day 8 (Monday):  2-3 hours of chemo at Children’s Hospital plus steroids at home.  You still feel like dukey.  You will not go to school for the 2nd half of the day.

Day 9 (Tuesday):  No medicine (yippee!).  But you probably still feel horrible.  School is unlikely.

Day 10 (Wednesday):  No medicine.  You still feel bad, but if you really like school and don’t want to miss anymore, you may be able to drag yourself there.  You may also drag yourself there if you are a kid who is able to ignore or set aside your discomfort in the service of getting out of the house.

Day 11 (Thursday):  No medicine. Most kids are starting to feel up to returning to school now.

Day 12 (Friday):  No medicine.  Ready for school again.

Days 13 & 14:  Possible antibiotics again.  Ready to hang out with your friends.  Par-tay!

Days 15-21 (Monday through Sunday):  No medicines, relieved all the crappy side effects are finished.  Return to school with a good attitude and thorough enjoyment of the intellectual challenges in front of you.

Day 22:  the whole 21 day cycle starts over again.

The side effects they are sure will happen are that she will feel like vomiting, and she will lose her hair.  All of the other side effects are less common (for example, the red medicine can cause pinkish tears and pink sweat – how crazy is that??!?).  Complications with taste buds (like my mom just had during chemo) are relatively rare in kids.  My biggest fear side effects were all for naught; anxiety officially eased.

She will begin this regimen on November 7th.

To sum up, 1) hospitals stink, even though there are some outstanding staff here that ease the pain as much as possible.  2) I heart oncology doctors.  3)  Chemo is going to be HORRIBLE but totally worth it for how much its going to kick lymphoma’s ass.

Tomorrow, Phenon is having surgery again (IV port and bone marrow sample).  We don’t know what time, again.  Probably won’t be a good day for visitors.  After that, though, bring it on.  She will probably be home by the weekend.

Phenon has asked me to take some videos so she can show some things to her friends.  Sadly, I don’t know how to get them off of my phone, and my technical support person (Tim) is home with Rowan tonight.  Maybe I’ll be able to post them tomorrow.

Good night everyone.

Last night Phenon finally got some sleep.  I think the pain has become more manageable and they switched her off constant morpine which was making her itch and making sleep hard.  Percocet to the rescue, and our girl slept through the night for the first time since before all this crap started.  She only pressed her “I need more drugs now” button twice the entire night.  She’s done so a lot more today as there was a delay in getting her her meds this morning.

Make me stop eating this deliscious alfredo at your own risk!

Phenon started eating solid food last night (crackers and some alfredo which she LOOOOVED).  She was not at all pleased with me when I made her stop eating the noodles until they’d stayed down for a while, which they did, giving the Percocet a nice bed to rest on and not mess things up.

About 9:30pm last night, after prodding from awesome Nurse Chris (former Navy married to former Marine) Phenon agreed to take a walk and made it almost all the way down the hall to the elevators before needing to go back.  She was pleased, though she was moving very gingerly and needed to hold on to me to make it (Thus no pics of the big event).  I think she sees light at the end of the tunnel, but the tunnel still looks like it was cut through a giant pile of shit.

Unfortunately, Phenon’s big plans to get down to the hospital atrium to see Rachel, a friend from Imagination Stage Summer Camp, didn’t work out this morning also due to the meds delay and also my not being sure she felt good enough to do it.  I know, right?  What a complete dick!  Rachel sent up a lovely quilt signed by a bunch of friends that Phenon was really happy to get.  It almost made up for…nope, not even a little did it make up for not being able to get down to say hi.

Today has been up and down.  She’s in pain, though she continues to rate it a 4 or a 5, and it’s just not possible for her to get comfortable.  I’ll not go in to any more detail about the meds delay than the few mentions I’ve already made…suffice to say “give my girls her meds and give them to her now and don’t mess around for a second longer so help me FSM!”

So, now I’m home with Rowan where we’ll be until I take him to school tomorrow while Julie is with Phenon for the night.  Hopefully they will have a night like last and both get good sleep.  I still feel like my eyeballs are lidded with sandpaper dusted with ceyenne and am really looking forward to feeling somewhat rested.  I wonder if that’s even possible.

So, in my freshman year of college I took an Intro to Film class.  The teacher was mean and scary and there were 890 students in the class.  I was failing the class.  I told my parents over and over that I was failing the class.  But I ended up pulling it off with a D. Compared to failing, a D seemed great!  My parents were ready to throw a celebration over me getting a D.  I played that right.

That’s kind of how I feel about Phenon’s new diagnosis.  While I was teaching today (yes, I left the hospital, it was very anxiety-provoking and surreal for me, but probably a good idea) the doctors from hematology/oncology came in and gave a clarified diagnosis.  Phenon has childhood Hodgkin Lymphoma.  As promised, here’s a website where you can find legit information:  National Cancer Institute.  We do not yet know the stage.  The docs said that her prognosis is awesome.  She will be released from the hospital likely by the end of this week.  Then she will have outpatient treatment that begins with a PET scan to figure out the exact dimensions of what they’re dealing with.  Most likely her treatment will be 12 weeks of chemo, and then possibly radiation treatment to knock out the last of it.  This is SO SO SO much better than some of the other options that I feel like throwing a party.  There are some types of childhood lymphoma that involve YEARS of treatment. It feels a little like bizarro world that I’m ecstatic over lymphoma, chemo, and radiation.  I’m ready to throw a celebration.  (Yay!  We got a D!)

Phenon has had a rough day, but everyone seems to think she IS recovering steadily and surely from surgery.  She has yet to hold down liquids or solid food, is still in a lot of pain, and has yet to get out of bed or walk around.  She has felt awful.  But she’s on her way.

This dumb-ass lymphoma has no idea the fury that is about to hit it.  Beware the Murphy rage, dude.  Your ass is ours.

Phenon is sitting up now in bed, though still moving very gingerly. The primary complaint now is itching, so they are going to switch her from IV morphine to oral percocet.  Big fans of getting her off the hard stuff and on to…wait…percocet.  Oh well, we’ll get her off the hard or hard-ish stuff soon.  She’s earned her drug induced haze.

She removes her oxygen tube from time to time to scratch her nose and it’s getting a little longer each time before the alarm goes off.  We’re hoping to get that outta here later today.

She just ate her first solid food and it seems to be doing right by her. After downing two waffles, two hardboiled eggs, and two apple juices she seems to be satisfied and is starting to feel pretty loopy.  She slurred out a request to close the curtains and turn off the lights and it looks like she may be dozing off.  She needs it after last nights long, sleepless, trial.  I might even try to grab a few minutes of down time.

One regular arm, and one giant Popeye arm.

It was a rough night.  A really really rough night.  Phenon’s magical new IV (which she was given during surgery so she’d be able to move her left hand) went wonky.  Her whole left arm is swollen up like a Popeye (or Tim the drummer) arm.  Usually when this happens, the tube has lost the vein, but hers hadn’t.  They don’t know why her arm has gotten huge.  They really seem to just have no idea.  The night nurse, Chris, could not have been cooler and more helpful.  He really rocked the heck out of this horrible night.  But he clearly doesn’t have magical super-powers to make it all better.

Also, at first Phenon had inadequate pain medicine, but the morphine was causing massive itches everywhere that we just couldn’t keep up with. They added Benadryl to the IV (thanks for that suggestion, Jeanne!), which was supposed to make her sleep and reduce the itches.  It did reduce the itches, but really just didn’t result in sleep.  Every few minutes something was going pretty wrong.  She had to get a new IV and they couldn’t find a good spot on her right arm that wouldn’t be in her hand (despite the use of some amazing new vein finding technolgoy).  Although Dennis the IV nurse was outstanding, seriously super-powered, it was still depressing as hell to get another IV in her hand.  She is coughing up blood, which is normal, but totally terrifying.  There is blood on her bandages around the chest tube and surgery site, which is also normal, but Phenon has really just had enough.

As all this actually kind of scary shit wasn’t enough, the little things like being hot, having her hair an unruly mess, and that stupid oxygen tube under her nose and over her ears all combine to make this a really crappy thing to have to go through.

She has now stated in no uncertain terms that this is ENOUGH.  She does not want this to be happening and she wants it to be done now.  We had a good cry about this together, which pissed her off, because she does not want to cry about it.  But it is what it is.  Shitty.

The one bright spot was this AMAZINGLY cool vein finder that Chris used to try and track down a vein on her arm.  It’s really hard to overstate how awesome this thing was to see in action.

We have just been given the first official result from the pathology department.  We are now patients of the oncology department.  The immediate biopsy results indicate that Phenon has some form of lymphoma.  Lymphoma is a class of cancers, but there are approximately 70 different types of lymphoma.  Each day pathology will get us a little bit closer to knowing which of the 70 types Phenon has.  DO NOT GOOGLE LYMPHOMAS TO TRY TO LEARN ABOUT THEM.  The doctors cautioned that 90% of what you see on the internet about lymphoma is about adults, and they said that lymphoma is much more dangerous for adults than children.  As they narrow down the type, they said that they will give us information and point us to credible websites about that particular type to learn more.  We will definitely pass those resources on to you as we get them.

Some types of lymphoma will require inpatient treatment, and some types will require outpatient treatment.  They have no idea which kind Phenon will require, so for now they are keeping her in the same hospital room, the one decorated beautifully by gifts from her friends.  They were unable to say whether she’ll be home by the end of the week or whether she’ll be in the hospital long term.  One day at a time seemed to be a mantra.  So, more waiting, but less unknown.

Phenon says she’s pretty scared, but they definitely reassured her a lot by saying that kids take the treatment pretty well.  She doesn’t want this to be happening, but it is.  Right now, when doctors are asking her to rate her pain from the surgery on a scale of 1 to 10, she’s saying between a 3 and a 4.  Earlier it was about a 9.  I think the stupid pain scale they show her is totally broken.  See this for reference.  She’s loopy and sleepy, but seems to be having random itches all over that are really challenging to get addressed.  Her hair is also driving her batty, so I’m about to go down and see if I can find a bunch of ponytail holders to get her hair out of the damn way.

And so, we move from the banal to the terrifying and back again.  The banal is easier to focus on.  I may have a really ridiculous wish list coming soon.

Julie

Phenon is out of surgery and did fine. The (#$%*@) mass was shaped and located differently than they thought, so they were not able to do the wedge biopsy. However, they were able to do multiple needle biopsies. The really good news is that this means that her recovery from the surgery will be easier because they don’t have to be worried about air leaks from her lungs.  The surgeon told us that pathology can take anywhere from 3 to 7 days.  Often, they will find a preliminary result that leads to more questions or the need to get more specific, so you will think they are done with one more test, and then they will add one or more.  Therefore, we may get information in trickles.  But for now, she is recovering well, and may have a faster recovery than hoped.  Nonetheless, the doc told us to be prepared for a long stay.

We have been told that she will likely be in recovery (PACU) at least until 4. The analysis of the biopsy will likely not be finished until Thursday. So we will have an uneventful and successful biopsy today and then just hang out recovering and killing time until Thursday.

We just heard this morning that they will be in at 8am to get Phenon ready for 9am surgery.  What they’re doing is called Video Assisted Thoracic Surgery (VATS) and they expect her to be away from us for two hours.  The procedure itself is expected to take about an hour.  We’re not sure yet if that two hours starts counting at 8 or 9 but we’ll certainly update as we know.

Happy birthday to David!

It was a lovely day full of friends and family.  It started with Jessi and her mom Pam, and we were frankly so excited to have them here that we totally forgot to take pictures. They were followed by Eleanor, Gabbie, Aliza, and Aliza’s mom.  Eleanor’s dad kindly followed orders to stay downstairs so the girls could hang out with privacy, although I suspect the visit would have been longer had they had an adult guide to the room !

Then came the Forest Knolls crew: Danie, Hanna, Lucy, and Brianna, along with Em, Crystal, and Laurie.  While the girls played games they had brought, the moms and Tim hung out together for some much needed talk time.

After that, Jean and Sarah arrived, and got to admire the decorations they had sent during our isolation. It seems, though, that we again forgot to take some pictures while we were visiting. Lisa and Zoe arrived and overlapped with a visit from Griffin, and Melissa, and Rich.

Grammy and Papito came for a brief visit, and then Joe and Caroline, and Chapin, Ray, Lily, Nate, and Rowan.  Again, no pictures.

Phenon was delighted throughout the day.  What a nice change it was.  She had such a terrific time, and such thoughtful gifts and cards and loving wishes from everyone.  We are now completely wiped out, and preparing to start another fast tomorrow morning.  The surgery team briefly stopped by today, and the fabulous nursing team (Kerry, at least) will be giving Phenon an orientation for what to expect first thing in the morning.  Thanks for all of the love and support (and sugar) today.  Sorry to those I wasn’t able to call back today.  It was a fun time and couldn’t find a way to get to calls, but appreciated them anyway.  G’night, y’all.

Julie