I’m going to start with the lovely things.  Rowan won the lottery!  A school lottery, but hey – I’m not going to downplay good luck!  He will be going to a public magnet school for aerospace engineering.  In practice, this means they focus on math and science and they have electives in robotics, astronomy, and computers, and then the usual stuff you can have for electives (he is very excited about art).  Rowan is really excited, and so are we.  There are very competitive math and science magnets here that you get into through testing, but they all involve doing a huge amount of extra work and much more pressure.  We are thrilled Rowan will get to focus on the things that interest him the most without the additional pressure.  (To say nothing of the fact that he did not actually test into those other programs.  Ahem.)

In other good news, Phenon got the part that she wanted in the school musical.  She will be the Artful Dodger in the Musical Adventures of Oliver Twist.  This is apparently quite a different show than Oliver, just so you know.  (If you want more information about that, you’ll have to talk to Phenon, specifically, because I clearly don’t understand musicals enough.)  The other good news is that her part was double-cast, which means she will do some of the shows and her good friend Victoria will do others.  Therefore, when Phenon has to miss some rehearsals to do radiation, it will not negatively impact the rest of the cast.  It seems a nice, low pressure solution.  (Are you catching the theme of my thrill with the low pressure situations right now?)

Also, the radiation oncologist (I think the technically correct term is radiotherapist) said it is safe to postpone radiation until Phenon gets back from her big Chamber Choir trip.  Thus, radiation will not begin until March 5th.  This is especially nice because a side effect of radiation that we didn’t know about yet is that radiation will cause Phenon to get hoarse and be unable to sing for 4-6 weeks.  The timing means she should be able to do her trip, come back and do radiation, and then be fully recovered before Oliver performances begin.

And in even MORE good news, our friend Dan, the Hodgkin’s oncologist, talked to Shana.  I’ve known Dan for about 30 years, and even worked for him at the National Institutes of Health for a while.  Therefore, I know that he has very high standards for intelligence and competence.  He has been extraordinarily helpful in this decision-making process about radiation.  Dan’s assessment of Shana was that she is awesome.  I already knew this, but for some reason I found it phenomenally reassuring to get affirmation of that from an expert.  I believe his exact words were “extraordinarily accomplished and intelligent” and “has an impressive knowledge of the research.”  He also said that she was able to have an “incredibly high-octane discussion of Phenon’s case.”  My doctor-crush on Shana has now moved into the permanent realm.  This is Shana.  She is not 10, and this is not an old picture – she really looks like this.  I think she is close to my age (maybe as many as 5 years younger?).  Remember, you don’t have to be scared about how young she looks, because Dan says she rocks.  (Okay, not his words, but wouldn’t you say that’s an accurate summary of what he said?)

So that’s all the awesome that’s been happening.  Phenon had her first appointment with the radiation oncologist on Tuesday, and had the radiation simulation this afternoon.  It is quite apparent that Georgetown University Hospital is not a Children’s Hospital.  They don’t seem quite prepared to talk to parents, and were fairly shocked that I wanted to be in the room to hold Phenon’s hand (at her request) as she got her first two tattoos ever.  (The amount of pain she experienced suggests that these may be her only tattoos ever, so I feel honored to have been able to be there for them.)  I was not allowed in the room for the CT scan.  Phenon was okay with that, but it was strange that it was not an option.  At Children’s, the parent is in the room for CT’s and all other procedures unless the teen specifically requests that you NOT be there.  They also don’t seem to have much practice talking to teens.  They do have a nice cartoon book for little kids to explain radiation, though.

The radiation oncologist’s name is Dr. Anatoly Dritschilo.  This is him.  I think this picture is not entirely recent.  Today he said that they had previously been unable to open Phenon’s original PET scan, and they were just able to open it before we arrived to the simulation appointment.  Dr. Dritschilo said that the PET scan suggests they need to revise their treatment plan entirely.  He wants to widen the radiation field beyond what we had previously discussed.  (So, instead of neck, clavicle, and the center of her chest, he wants to add her entire right lung.)  He also believes that the lower dose radiation will be insufficient.  When asked about long-term side effects, he listed all of the things we already knew about.  But he added that Phenon will require twice yearly check-ups to screen for spine cancer in addition to all of the other problems we wrote about here.  That knocked the wind out of me a little bit.  I’ve requested a copy of the treatment plan.

It turns out that Dan has known Dr. Dritschilo since the early 1970′s. He went to Harvard and has been the head of the radiation department at Georgetown for most of his career.  This is impressive.  And I know from the psychology literature I had to learn from all of my years of learnin’ that doctors with many years of experience more accurately and efficiently can identify what to do than anyone else, but also may have more difficulty explaining how they know what they see and what to do.  This is also reassuring.  Nonetheless, I think we are going to get a second opinion.  Apparently there is a much broader range of decision points in radiation than there is in chemotherapy, and that means that clinical opinions and experience can result in dramatically varying opinions about treatment plans.  If we are going to do a higher dose of radiation, and a broader radiation field, and her spine is in the mix along with all of the other important parts, I think I’d really, really like to know that it’s because we’ve got to.  Before knowing who the doctor was, Dan suggested that we might get a second opinion at Children’s Hospital in Philadelphia.  Apparently their radiation team is pretty awesome.  It seems the next few weeks may not include enjoying time away from hospitals.

I feel like I’m behind the ball in learning the radiation terminology, and want to get fluent faster, if I can.  It seems important that I understand this shit better to be able to focus on asking really good questions.  If anyone reading this has the ability to give me a primer on the terminology, I’d really appreciate it.

I really, really, really hate cancer.  And that is all.

The bottom line is that we have decided Phenon will do the radiation therapy.  By we, I mean all of us, including Phenon.  She wanted to be involved in this decision, including wanting to know about all of the long-term side effects.  For some things, she has not wanted to be involved in the decision.  I’ve been impressed by her ability to determine which details she is willing/able to handle.

So, that was the bottom line.  Now for the detail.

As I previously mentioned, our biggest concern was the long-term side effects of the radiation.  They include breast cancer (15 times the risk of the general population, which is a lot), higher mortality rates from breast cancer, lung cancer, thyroid cancer, heart disease, and stroke.  Shana agreed that these are risks, but also pointed out some details of these studies that I had not attended to.  To determine the long-term side effects you have to treat someone, and then follow them for 20 to 30 years.  That means that the current data is about people who received the doses and frequencies of radiation that they gave to kids 20 to 30 years ago.  The treatment back then involved much higher doses of radiation than they give now.  Shana said that there is NO data yet about the long-term side effects of the current doses of radiation.  Presumably, the risk is lower than the current data suggests, but we don’t know how much lower.  It could reduce the risk just slightly or by a huge amount.  We are entirely shooting in the dark on this one, but I do feel a little better knowing that the risk is probably at least a little bit lower.

The research data on the usefulness of radiation studied two groups of kids: Early Responders and Late Responders.  Early Responders do not need radiation.  Late Responders must have radiation.  Phenon isn’t either one.  In fact, she’s squarely in the middle.  Therefore, there is NO data that says what she should do.  So, for all of you who asked what the data is for other kids in her situation, there is NONE.  Everyone just has to make a guess.  Even though I profoundly hate having to guess when the stakes are this high, I really did feel reassured by Shana saying that whatever decision we made would be reasonable based on the lack of real data.  She made it alright to go either direction, which somehow made it a little easier to consider all options more rationally.

PET scans have only been used as a diagnostic tool in Hodgkin’s for the last 2 years or so.  Therefore, there is NO data on the relative usefulness of the negative PET in determining whether or not someone needs radiation.  Based on her experience, but not on hard data, Shana estimated that there is only a 5% risk that there are still any malignant cells in the mass still remaining in Phenon’s lung.  Shana said she would be comfortable with a decision to not do radiation.  She feels like a 95% chance of a cure is a good gamble, if we choose to take it.

However, here’s the rub.  If we followed Phenon’s idea (wait 6 months, do another PET), if there was any PET activity, radiation would not be enough to kill the cancer.  It would be a new, more resistant form of Hodgkins.  The treatment for that is a higher dose and longer course of chemo, higher dose radiation, PLUS stem cell transplant.  All of these would have significantly greater side effects than the low dose radiation she could get right now (remembering that all of the awful side effects are well-established for the high-dose radiation).

Kids who are given the FULL range of treatment indicated by their status as Early Responders or Late Responders have a 13% chance of having the lymphoma come back.  If you add the 5% chance that there are still some malignant cells in Phenon’s mass, that’s about an 18% chance that she would need that longer, more intense, higher side-effect treatment.  (Don’t worry, I know that math is a little bit suspect, but since it’s all based on guesses, not science, I decided to not get too hung up on the adding apples to oranges aspect of that.)  Thus, giving Phenon radiation now could reduce her risk from a 1 in 5 chance of recurrence to a 1 in 7 chance.

We took the whole weekend to digest the data.  I spoke with a long-time family friend, Dan, who is a Hodgkin’s oncologist for adults.  His instinct was to do the radiation also.  He’s also going to talk to Shana, and send out all of Phenon’s data to his network of friends and colleagues who are pediatric Hodgkin’s specialists for additional opinions, as well as to some radiological oncologists.  Dan said his assumption is that all will say the same thing as him (and Shana), but he wanted to see if he could find anyone who would disagree and what argument they would offer that he might not have thought of. Tim’s cousin also sent out Phenon’s information to another family member who is a pediatric nurse at another Children’s hospital, and she argued that a short course of low-dose radiation was worth the risk to try to reduce the chances of needing to do the second occurrence treatment that comes with much worse effects.

Given all of that, we are 98% committed to doing the radiation.  (We will only change our minds if we get some compelling arguments from some of the other experts this week.)  The short-term side effects are not nearly as bad as chemo.  She will likely be fatigued, but not dramatically so.  Also, there is the possibility of burns.  However, they are usually no worse than a sunburn and are generally treated adequately with salves for sunburn.  Payal thinks that Georgetown can accommodate her school schedule, so she should be able to go to school full-time and just go to radiation every afternoon.  It will be 14 days of treatment, weekdays only, so nearly three weeks.  We think this means she will start at the end of this week and be finished before the big Chamber Choir trip to Dallas at the end of February.

One of my big goals in all of this was to be able to explain our decision very clearly to Phenon later in life.  If, God forbid, one of the horrid side effects comes to pass, I want to be able to explain to her, logically and with adequate detail, why we made the decision we did based on the data we have.  I feel like we’ve gotten there.  All of this may be a guess, but I think it’s as well-educated a guess as we can muster.  And that, as they say, is that.

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?

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.

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?

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!

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.

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.

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 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.