Phenon Updates

We just heard from Payal.  She said Phenon needs radiation.  I have many, many questions before I feel like that’s a final decision, though.  Here’s the deal:

The PET scan result is negative!  That’s a very good thing.  It means the cancer isn’t doing anything.  This is the clear result we were looking for.  A very big hooray!

But the CT scan result is not at all what they wanted to see.  At last scan, Phenon’s tumor had shrunk to 60 percent of what it had been.  It needed to reach 80 percent shrinkage to avoid radiation.  The shrinkage remains at 60 to 65 percent after the last two rounds of chemo.

Payal said that the next round of research on Hodgkins will be to determine if kids in Phenon’s position need radiation after all.  (This was apparently being planned by committee this morning before they had Phenon’s result.  It’s apparently the next big question.)  Payal hypothesized that, in 5 to 10 years, such kids will not be given radiation because they will learn it is unnecessary.  But for now, they don’t know for sure that it is unnecessary.  And she thought it would put everyone’s mind at ease if Phenon just goes ahead with the radiation.  I’m not so sure it will put anyone’s mind at ease if they do radiation.  Payal said she thought Phenon would worry if she still had 40 percent tumor in her lungs and she thought it would be psychologically better to just treat it.  ”We owe it to Phenon to treat as much and aggressively as possible, even if later we learn the radiation wasn’t necessary.”  Hmmm.  I’m not so sure.

Phenon’s big question is:  Couldn’t we just leave it be and get a PET scan again in 6 months or a year and see if it’s still dead? This seems significant to me given what an incredible ordeal each PET scan has been.  Indeed, Phenon decided to write her own post about the hideous experience yesterday.  She hasn’t gotten through it yet, but it was unpleasant.  And she’s asking to do it again to avoid having to do radiation.

I’ll be e-mailing in a list of my own questions tomorrow.  A major one is that radiation therapy significantly increases the risk for breast cancer, among many other things.  The National Cancer Institute recommends that girls who receive radiation therapy for Hodgkins start getting annual mammograms starting 8 years after treatment.  That means Phenon would have annual mammograms starting at age 21.  Breast cancer already runs in our family, since my mom has now had it TWICE.  Are they sure enough that radiation is crucial to run the risk of that?  Plus the risk of that many mammograms across her lifetime?

I really am glad the PET is negative, but this feels like a much more difficult position than the decision about chemotherapy.  There was no choice about chemo, and, while the short-term side effects are nasty as all get-out, the long-term side effects are primarily in the areas of processing speed and Executive Functioning.  We know how to handle that.  That’s been my specialty as a psychologist, after all.  Radiation is a different animal.  The short-term side effects are little to none, but the long-term side effects are quite significant.  If the PET had been positive and the mass was 60% there would have been no question about proceeding with radiation.  Or if the PET was negative and the mass was 80% smaller it would have been an easy finish.  But this is messy.  And really important.  We need to understand thoroughly and well. It would be tremendously helpful if y’all would post your questions, too.  That would help us think things through and make sure we are getting all of the necessary information to help make this vital decision.  So, if it was you, what would YOU ask?

Since we haven’t updated since Phenon had to go to the hospital with a fever, I’ll just quickly say that she was back home two days later feeling pretty darn good.  We’re not sure what caused the fever, but it didn’t stick around for long.  So that’s a good thing.

Phenon started back to school yesterday to start the new quarter and we expect that she’s back to full time school’.  Home/hospital teaching has wrapped up and she managed to keep up, so there won’t be any classes to make up over the summer.

And finally, the second PET/CT scan was today.  This is the big one, the results of which will determine whether she needs radiation or not.  We get the results on Monday.  I’m guessing that’s the next time you’ll see an update here on the blog.

A big day, today was Phenon’s last chemo treatment.  It went pretty smoothly until she and Julie got home and then the fever started going up.  We were pretty well set for Phenon’s usual habit of skating right under a 100 degree temp for an evening and then waking up feeling great.  This time, not so much.

She only stuck to 99 for a few minutes before she got to 100.9 101.9 which is above the temp that requires heading to the hospital immediately.  To say that this made Phenon sad is an understatement.

This really will all be over soon, right?

It has been quite a week.  We have had a lot of (capital “F”) Feelings this week.  Whenever we have Feelings, it’s hard for me to write a post, so I’ve been meaning to write every day this week, but haven’t gotten to it.  So, I’ve decided to try to write a “just the facts, ma’am” kind of post instead.  Perhaps that will help me get it done!  We’ve had a good news, bad news kind of week, so I’m going to do all of the good news first.

Good news!  Phenon’s weight is now ONE POUND more than she weighed in August (before this all began).  It took a long time to make up for the massive weight loss during her hospitalizations, but you all have done it with your marvelous food and desserts.  Her clothes fit again – hooray!  This weight of hers maximizes her body’s ability to respond to chemo and to kick lymphoma’s butt, so extra special thank you’s!

Good news!  This is Phenon’s very last round of chemo!  It has been a rough chemo week, physically, emotionally, and bureaucratically.  The national chemotherapy medicine shortage showed its ugly face this week.  On Monday, Phenon got all but one of her chemo meds because the hospital ran out.  It took hours to find that medicine at another hospital that had enough to spare.  It took several more hours for that medicine to be sent to Children’s.  Bad news!  After that, it only took 10 minutes to realize that it was THE WRONG MEDICINE.  They were finally able to get the right medicine, the one that she is NOT anaphylactically allergic to, by 10am on Tuesday.  But because she missed her Monday dose, that meant Phenon had to add an EXTRA DAY of chemo this week (Thursday).  That extra day cost her a lot emotionally.  She had been counting down the days of chemo/clinic time, and seeing that number go up was really rough.  It knocked her almost as low as I’ve seen her during this process.  Good news!  Yesterday was the extra day, so now, only one more clinic/chemo day to go!  (We don’t THINK there’s any way for that ticker to go back up again.)  Usually that last day would be Monday, but Monday is a holiday, so Tuesday, January 17th is Phenon’s last day of chemo.  It’s a short day:  only two medicines.  Bad news!  Because of the Monday holiday, Tuesday is likely to be a total madhouse of overbookings and delays.  Thus, our 45 minute appointment MAY take 6 hours or so (it has happened before).

Good news!  Teen Room Zoe posted a comment to our paying it forward post, and your generosity is already making inpatient oncology/hematology hospitalization a less miserable experience for the teens there right now.  Hooray!!  Thank you!!

Good news!  I heard from Erica (Amani’s mom), and you all have been incredibly generous to her, too.  She is so grateful. Bad news!  Amani is having a terrible week, and Erica’s job has been more inflexible.  The road for them continues to be incredibly rough.

Bad news!  During Phenon’s most recent doctor appointment, while Phenon was saying how excited she was to be almost done, Payal “reminded” her that there is still the possibility of radiation, based on her PET/CT results.  We were quite thrown off – no mention of radiation therapy was made when we discussed those results.  Turns out – oops – they meant to.  When Shana came in, we had a big discussion about the medium-level possibility of radiation.  So, here’s the scoop.  As you may recall, at the last PET/CT scan, the CT showed that Phenon’s tumor had shrunk by about 60 percent, and some portion of what remains is supporting structure, not malignancy.  But EXACTLY how much is not malignancy is not known.  So it’s all an estimate based on previous research.  They have found that the cancer doesn’t usually come back if they kill 80 percent of the mass AND the PET scan (activity level) is “negative.”  This means that, as of the last scan, Phenon still has 20 percent killing left to do.  While that seems easy-breezy given the 60 percent kill in the first two rounds, it’s apparently not that easy.  The biggest bang for the chemo buck usually comes in the first two rounds.  The last 20 percent may, or may not, happen with the second two rounds of chemo.  Thus, the medium-level chance that she’s not done yet.  As for the “negative” PET scan, there is apparently medical debate as to what counts as a “negative” scan.  A 2 out of 14 is a good low number, but is not a negative result.  A 0 out of 14 would be definitively negative.  A 1 – well…  that would be up for debate.

Neutral news!  Phenon’s next PET/CT scan will happen towards the end of the month (around the 27th is the goal, but still waiting for actual date).  An 80 percent tumor shrinkage (or more) with a PET activity result of 0 will mean Phenon is done and cured – an unequivocally great result.  A less than 80 percent tumor shrinkage (let’s say 78 percent) and a PET activity result of 1 will mean a very difficult calculus weighing the long-term negative side effects of radiation against the small possibilities of tumor resurgence.  Worst case: A less than 80 percent tumor shrinkage (let’s say 70 percent) and a PET activity result of 2 or more will mean a definite need for radiation therapy.

What does radiation entail, you ask?  Well, I have a list of about 6,000 questions, myself, so I can’t fill you in very well right now.  But, (bad news!) they said that radiation therapy will involve DAILY treatment for 2 to 3 weeks.  Good news!  Each appointment is only 15 minutes long (so they say – I’m certain, though, that the 15 minutes doesn’t account for check-in, paperwork, and waiting room time), and will happen at either Georgetown or UMBC.  Good news!  Radiation does not generally cause nausea, does not involve needle sticks or port access, and does not cause hair loss or delay hair re-growth.  Bad news!  Radiation can result in fatigue, immune suppression, and need for blood transfusions.  And the long-term side effects are, well, quite a thing.  To put it simply, the possibility of radiation is one of the things that has been contributing to my fragile ability to sleep through a night.  I had begun to sleep better after the last PET/CT results.  Now it looks like I’ll have to wait for the next results before I can hope for a good night’s sleep.

So, you ask, when will Phenon get to be done with home-hospital teaching and get to return to school?  We now have no idea.  We thought Phenon would be back to school, at the latest, on the first day of the next quarter – January 24th.  She will probably be ready to go back around the 18th, but that’s exams and whatnot, so it doesn’t make sense to go back before the 24th.  And she will.  She won’t have her PET/CT results before then.  But there is the possibility, then, that she’ll go back and then have to re-withdraw for several weeks while she does radiation.  Like I said, I have a list of questions. (One of which is, could she do radiation later?  Like April or May?  Or July?  That way she could go back to school and stay a while?)

Bad news! All of this radiation talk put a real damper on Phenon’s sense of resilience this week.  And now she is in the full swing of chemo side effects – the feeling wrong in her body, fatigue, staring into space, the inability to concentrate, the horrible stomach combined with the steroid-driven desperation to eat.  She wakes up between 4:00 and 5:00 each morning in a full-blown yelling panic of “you have to bring me something to eat right this second or I’m going to DIE!“  But, of course, everything I am coherently able to offer at that time of day sounds vomit-inducing.  I know from previous rounds that this will last just a few more days – she may even feel alright tomorrow morning and be able to go to Rowan’s basketball game.  (She had a lot of fun filming his game last week and learning how to edit a video for him.)  But in the meantime she feels horrid.  She is helped by simple companionship and having our full attention (so I haven’t gotten much done this week other than being by her side).  And she has obsessively focused on her Make-A-Wish Foundation plan this week as a way to console herself and imagine herself out of this place.  So yesterday, we moved a cozy chair into the kitchen (this is not a BIG kitchen, mind you – it got CROWDED in there!) so she could mumble at me about what she wanted to eat for every meal during her Make-A-Wish week.  Phenon’s current wish idea is beach-related (this is her third major wish plan, so far, so we’ll see where we end up by the time the volunteers come to do her interview), so we also spent a full 30 minutes discussing potential bathing suit options (color choices, style choices, show scars? cover scars?).  I am grateful for the distraction.

And that’s that.  Today Phenon gets her last neulasta shot (thank you, again, Roxanne!) at home.  That means tonight will be rough – she always has major discomfort and sleeplessness the night after her shot.  But she’ll probably feel better by Sunday, and Monday will be a lovely holiday. Have a good weekend, everyone!  And happy MLK day!

Remember how I promised to post here about a person you could send your donations to?  Well, our friend Beth, whom we thought might need help, is doing fine – hooray!!  She may not need a bone marrow transplant after all, so she said she doesn’t need the donations right now.  But I met someone yesterday who does.

Yesterday, for the very first time, a parent introduced herself to me in the chemo infusion pod.  I was so happy to be approached by someone!  It turns out that Erica had seen Phenon sitting comfortably bald in her chemo chair.  Her daughter, Amani, had just started chemo, and she wanted to know what to do to help Amani respond to hair loss like Phenon.  1) Could she make it fun?  2) Should they pre-emptively shave her head when her hair starts to fall out?  I answered her questions: 1) nope.  2) maybe?  As we talked, I was really charmed by Erica.  She was a psychology student before this started, and she wanted to become a counselor to work with foster kids with attachment issues.  She is a preschool teacher, and has had numerous foster kids in her classroom, and she wanted to be able to better help them.  I really appreciated Erica’s warmth, and her willingness to cry a little bit as she talked about what was happening.  Other parents there don’t cry.  I’ve never seen a single other parent on the unit even tear up a little.  I tear up sometimes.  I liked that Erica made me feel a little bit normal.

I was also charmed by Amani.  She made me guess her age (7), and she spent her four hours in the pod making crafts with pipe cleaners and chatting with the nurses.  You know I like a girl who needs to keep her hands busy! Amani gave all the nurses hugs good-bye. Amani is getting chemo now, but she doesn’t have cancer.  She has sickle cell disease.  When she was diagnosed as an infant, her father left immediately and has never come back.  Erica has been raising her two daughters (15 year old and Amani) alone throughout this process.  Amani’s sickle cell disease has been progressive, and has started to kill her.  She has already had two strokes, despite monthly blood transfusions.  Amani now requires chemo to try to slow down the disease course so she can make it to a bone marrow transplant.  A bone marrow transplant is extraordinarily dangerous, with a very high risk for complications.  Erica is going to have to take six months off of work to take care of Amani – at first to live in the hospital with her while she is in isolation (45 days, minimum), and then at home where she will also be in isolation.  Six months is the best case scenario.

Erica never mentioned fundraising to me.  She was looking for support and ideas.  But when she talked about six months off of work as a preschool teacher and I thought about her single parent status, I asked if she had done any fundraisers yet.  Amani cheerfully jumped out of her chair and handed me a flyer.  They are having a concert to raise money on March 18.  But I thought maybe we could use this website to help her out before that.

I have had a number of people write to me that they had been planning to send us money, but we met the goal before they got to do it.  Could you send Amani’s family $10?  Or $20?  http://amanisjourney.com/donations  A full third of the donations we received were from strangers, most of whom sent us $10 or $20.  I sent in a little of our overage to Amani’s mom last night.  Even if you can’t send in ANY money to them at all, could you post a link to her site on facebook and ask your friends to donate $10 or $20 or more?  Tweet about it?  That’s the main way that we raised money – the power of social media and friends passing on word to friends was amazing.  When you go to donate money, there’s a comment field under Amani’s name.  It would be really cool if you’d put Phenon’s name in there, so Erica knows how y’all found her and why you’re helping out.  This little girl is in for a hell of a fight, and she’s been dealt an extra crappy hand.  I would love to pay forward our sense that good strangers will step up when you’re in dire straits.  Thank you, so much for any help you can send.

We have more than reached our goal now.  More contributions have continued to come in over night, even.  The thing is, you’ve already done it!  We have been very, very well taken care of.  A few contributors noted that we could pass the contribution forward if we wanted to, and we are so grateful for that.  We are still waiting to hear from our friend to see if it’s okay to link to her blog.  She got a virus during the week before her next round of chemo, which is especially, exceptionally rude given that that’s the week you usually feel almost normal.  Urg. Understandably, it may take her a while to respond to an e-mail!

In the meantime, we are going to use $100 of the fund to bring a care package to the Oncology Inpatient Teen Room when Phenon goes for her next round of chemo on Monday.  For those who are just tuning in, the Teen Room is actually a young woman named Zoe, who goes around to the rooms of every teen who is admitted to the unit, talks to them to find out their interests and how they’re feeling, and then she devises activities, crafts, social events, and entertainment options that will help make the time pass less horribly.  When Phenon was an inpatient, it took Zoe one try to find something that would entertain Phenon in her own room, and three tries before she lured Phenon out of her room.  But she was friendly, empathic, enthusiastic, and persistent, and was clearly not going to give up until she figured something out that would work.  Zoe runs that teen room by herself, and her nail polish party involved a meager four bottles of nail polish and some supplies that belonged to one of the inpatients.  We thought we could beef that up a little bit, and give Zoe her own supplies.  We are also going to bring some of the books that Phenon has been given that she has finished – especially the ones that are good reads for when you’ve got chemo brain.

Some contributors have suggested that we use any overage to buy Phenon some cool gift.  But that’s already taken care of, too.  Our friends, the Moore’s, held a fundraiser a while ago to raise money to help Phenon buy a computer that would serve as a recording studio for her.  Phenon had also saved up from babysitting, and her relatives made contributions to the fund for Christmas.  She has spent this week (in which she has been able to go to school for only one period a day due to bureaucratic regulations) recording herself singing, playing piano, and playing ukelele.  People have showered Phenon with gifts, and many have even given Rowan gifts so he doesn’t feel left out.  They don’t need anything else!

We really are going to be okay.  Actually, more than okay.  Because we will move forward carrying all of this love, and help, and support in our hearts.  Thank you, again.

OK, so I just updated the thermometer to $7942 as a $20 donation came in just moments ago. The way things have been going the past week I’m sure that we’ll be at $8000 or close enough not to matter by the time I finish writing…wait…what? Alright, Julie tells me that $100 just came in literally as I was writing that last sentence. Seriously, I’m typing exactly the words “close enough not to matter” and her phone beeped its “new message” beep and that was that.

It’s hard to describe how grateful I feel right now. How totally flabbergasted and yet, oddly still not entirely surprised I am at the love and generosity that over 100 of you have shown us. It’s enough to make a curmudgeonly misanthrope like myself rethink a world view that I had thought was pretty firmly set.

Ok, I’m going to stop writing for a minute and just post this message so you know that we’ve met our goal because another donation just came in.

Here’s the deal: we have a friend who also has Lymphoma. Hers is going to take a lot longer to deal with than Phenon’s and we’d like to help her if we can. Honestly, we had no idea that we’d reach our goal this quickly and it feels like we can take advantage of this moment and try to direct some of the love and generosity that you have all shown to our family to try and pay forward a bit to someone else who really matters to us.

We’re waiting for her permission to share the link to her blog where she is taking donations. Once we hear from her, we’ll post a link and if any of you who were going to send something to help us cover our costs and just hadn’t gotten around to it yet would instead donate to her, we’d really appreciate it.

As our dear friend Megan said on her blog “you are all magnificent.”

Thank you all,
Tim and Julie

We are really a bit a-flutter.  You all have consistently, brilliantly, and impressively risen far above the call of duty to astound us with your love and support.  I’m touched and tearful at the generosity of our supporters.  Many of you have contributed more, despite having already provided us with more support, tangible assistance, and love than one could possibly expect or hope for.  We are so grateful to you.

We are also grateful to lots of strangers.  Here’s the thing:  of the 49 donations we had received by 8pm on Wednesday, 29 have come from people WE DON’T KNOW.  That’s 59% of the people that have donated.  These donations came because the people we do know have forwarded our requests through their networks, and those people have forwarded our request to their networks.  The donations from kind and generous strangers have ranged in size from $7 to $200.  And we have received help from all over the U.S., as well as Canada, Surinam, and Ireland.  These donations are, of course, a clear indication of the generosity of kind people.  But they also seem like indications of how much YOU are loved.  You posted on your facebook pages, and on your blogs, and on your listservs, and on e-mails.  You asked them to send us help and you asked them to forward the message.  And they did both of those things, because you asked them to.  They must really love you.  We love you too.  And now we love them too.

We cannot wait to pay this generosity and beauty and massive expression of love forward.

P.S.  We are writing thank you’s for every contribution, but we are slower than the rate of contributions.  In the meantime, please know that we thank you.

Happy New Year! We are so grateful to you for your support!

UPDATE: We have reached our goal!!!

Phenon is doing better, thanks, in large part to all of your help.  Many of you have asked how you can help and encouraged us to be honest in our answer.  Although it is difficult for us to ask, we could really use your help with financial contributions to meet the expenses of Phenon’s care.  We estimate $8,000 in medical bills. We are doing all we can, but as you know, I’ve been unemployed since Phenon’s diagnosis and we are not able to meet all of our mounting expenses.  If you can help out, please send a contribution:

1. Click the payment button below to send money through Paypal
   
2. Go to https://www.paypal.com , click on “Send Money” and then enter my email address: phenonemom@gmail.com
3. Or send a check payable to “Julie Murphy or Tim Arnold”
   10614 Glenwild Road
   Silver Spring, MD 20901

Thank you so much for considering helping. If you know of anyone else who may be interested in helping, please forward this link to them (you can also send them to http://www.phenon.com).

Here’s to a cancer free 2012!!

I wasn’t sure she was gonna, but Phenon made it through Christimas, Tim’s birthday, and the last chemo day of Round 3 without being hospitalized (poo poo poo, knock on wood, etc.).  She did not feel awesome, but she made it through every scheduled family party (which is a lot), plus the Muppet Movie, plus an extra family visit that was not even previously scheduled (yay for spontaneous visits from the North Carolina cousins!).  Yesterday (Tuesday) was her last chemo day of Round 3, and it lasted a very, very long time.  But her labs at the beginning of the appointment looked good, so she was not yet neutropenic.  I watched her turn neutropenic before my eyes at 8:30 last night.  I could almost see the little neutrophils croaking as she spoke.  She drooped, and slouched, and her eyes got puffy, and she went to bed early.  As the night progressed, her temperature rose, as did my anxiety level.  We took her temperature every half hour, and she ranged from 99.9 to 100.3 (remember, the critical level is 100.4 or higher for an hour).  By 2am, she dropped down to 99.5 and I decided to let it go, and just let us sleep.  She was headed in the right direction, and if she got worse she would announce it loudly and clearly.  So, Phenon slept until about 8am, at which time she was a kick-ass 98.3 degrees.  So, she’s gotten through.   Happy new year to one and all!