First Bike

March 17th, 2009

Update from the Grandparents (who are now back in Louisiana)

      Five weeks into the maintenance phase and our Sadie is still “on track.”  No illnesses (knock on wood) and back in day school!   The little person’s transition back into a social setting was normal albeit with some trepidation.  That was illustrated by an incident during the drive to school on one of the first mornings in mid-February.  The plan for the day had been carefully explained by the moms (no surprises is a family rule) and sufficiently so that Sadie agreed to go.  Halfway there, however, a little voice piped up from the back of the car saying “Uh, oh...I’m getting worried.  Tell me again what’s going to happen.”  They did and she again bought into the program, with an announcement either that day or one shortly thereafter that “I had a big girl no tears day!”

Going back to school!

The daily chemo doses accompanied by five days of steroids each month, and random other procedures and clinic visits is a huge responsibility, but thanks to Julia’s organization and daily reminders on her I-Phone that regime has been faithfully followed.  Even Sadie is helping.  During a two day visit at the end of January allowing the moms to get away, ZZ and Grandpere had the responsibility of administering her daily chemo medicine.  This is given orally on an empty stomach after Sadie has been asleep, using a prepared dosage in a small vial and plunger.  Grandpere had agreed to waken ZZ and Sadie with the medicine in hand.  As is routine with Sadie she groggily awoke, sat up in bed and insisted on taking and holding the vial, put one end in her mouth and then pushed the plunger forcing the medicine out.  She then floped back and went soundly to sleep.  What a trooper!

"Come'ere Mrs Butterfly!"

Last week Sadie and Julia flew to Seattle to visit with the other set of grandparents and Julia’s brother.   The visit provided a much-needed change-of-pace for all and a breather for Sarah who’s been under considerable pressure at work.  Everything apparently went well, that is until the last day or two.  It was then that Julia’s brother’s family all came down with the flu.  As if that was not enough, on Tuesday night as they flew back to Brooklyn Julia began running a fever.   As this is written she continues to be sick, but Sadie and Sarah (again: knock on wood) are well.   Should Sadie get sick - or even so much as run a low fever in connection with a cold - the drill is that they are to immediately report for admission to the NYU hospital.   That is a normal and expectable eventuality, but nonetheless one that causes continuing worry and concern for the whole family.

"Got Maintenance?"

Yesterday was officially our first day of maintenance. When we started this process six months ago the idea of making it to maintenance was magical. It sounded like a graduation of sorts. I pictured having a big party and celebrating with everyone who has helped us through this ordeal. We would be through the tough part and get back to ‘normal’. It would feel like a turning point.

Somehow it’s not quite like that. Sure, there is talk of Sadie trying to go back to school, and the drugs will be less of a surprise. But I just spent two hours putting her medicine schedule into a calendar that will set off reminders on my phone of what and when and how much. All of these reminders are on repeat indefinitely (there’s no setting for two and a half years…) And many of the drugs come with instructions like this:

We survived the day of many drugs.

It started off as expected like this:

Then we headed to the ‘feld for many many more drugs.

That all went fine (all 9 hours of it) and we spent a good portion of it here:

But more chemo was needed! Our home nursing care for today was cancelled when we checked in, so we spent the day getting things ordered and scheduled and picked up and doing dull hospital stuff that we have gotten way too good at. At long last (and buffered with much anti nausea medication and a big bottle of the good stuff to take home with us) we finally headed out.

It was awful slippery driving but we are home, safe and sound and all took a very long nap together.

The End.

Addendum:

We are still laying low - very very low. Her counts are all over the place, but we’re getting through this last stage one day at a time.

Very Long Day for a Very Little Girl

December 18, 2008

The pic to the left is from a few weeks ago when Sadie had her last spinal tap (and still had hair). We’ll be recreating that scene tomorrow morning at 7am to kick off the final 14 days of ‘delayed intensification’. It goes something like this…

We start at the hospital with the spinal tap which includes an injection of Methotrexate (a familliar chemo that we do often) placed into the spinal fluid. Then we head over to Hassenfeld for the day for a few new drugs. Sadie gets a one time IV drip of Cyclophosphamide (a new chemo for us) which has some peculiar quirks regarding hydration. Sadie needs to drink a ton before and after the drug is given (to protect her from some heinous side effect) so she’ll spend the day tossing back bottles of apple juice with cotton balls in her diapers that get tested to see when she’s had one too many. Then she’ll get a push of AraC (another new chemo) into her port. Then we’ll pick up a 14 pack of Thioguanine to take home with us. Thoiguanine (code name 6-TG) is much like its similarly named friend 6-MP and shares its quirks of needing to be taken on an empty stomach and not with juice or milk. That would be no problem for an adult, but for a toddler its kind of a mess. The agreed upon technique is waking the kid up a few hours after they go to bed and squirting the toxic stuff into their mouth in the dark. It sounds like a bad idea (and we are supposed to wear gloves to protect us while we do this?!).  Sadie will be back on 6-MP for the next 2 years, so apparently we’ll all get used to this routine.

"Oh Dear, I've had a haircut!"

All of that happens tomorrow. For the first time ever we will go home with Sadie’s port still accessed (meaning a needle into her port in her chest and the tubing that attaches to it all taped up) and she’ll stay that way through the weekend. We have a nurse coming to the house to give a daily dose of  AraC through her port and the risk of infection is too high to access the port that often with Sadie’s counts being so up and down. So no getting it wet, which just means no baths (and no ‘pouring game’ which I keep meaning to post a video of.. it’s amazing) but I’m just worried that it’s going to freak Sadie out and she’s going to mess with it. Simple as that. It’s a weird contraption and I’m always really happy to leave it at the ‘feld when we go.

We’ll be back at Hassenfeld to re-access the port next Wednesday (also known to some as Christmas eve) and then the nurse will come (hopefully dressed as an elf, or at least as a stray reindeer) on Christmas and through the weekend.

2009 can not get here fast enough.

Not so merry Sadie...

Dec 3rd, 2008

It feels like its been months since we posted an update, but its really only been 19 days. Less than 3 weeks. It has been an unbelievable few weeks.

We have moved (mostly). Our new apartment is almost exactly half the size of our ‘old’ apartment. It has also been much more of a project than we anticipated. It’s been three weeks of painting, repairing, weatherstripping (somewhat compulsively in pursuit of a few extra degrees of warmth), and figuring out the puzzle of fitting the three of us (and Sadie’s army of essential stuffed animals) comfortably into about 700 sq. ft. It is an enormous challenge.

The good news is that once all this is done we think we are going to be very happy here. It’s cute, its cozy, it’s quintessential Brooklyn living. The bad news is that it’s turning out to be an incredible amount of work that it is like squeezing blood from a stone to find the energy to pull off.

We had timed the move incredibly carefully to coincide with the timing of Sadie’s treatment. It almost worked out perfectly… we ended up being about a week past schedule and it was just long enough to send us right into the beginning of the dreaded “delayed intensification”. It started off with moving day, which was also the day that Sadie needed to have her PEG-asparaginase shot (a nasty shot in the leg with a high incidence of allergic reaction. Sadie was going great at the ‘feld and then as I parked the car at home I turned around to find her sprouting hives all over her face and body. We spent the rest of moving day (while boxes continued to get carried out around us) sitting at the old apartment, keeping very-close-watch with the instructions to call 911 if Sadie even looked like she was thinking about having trouble breathing. We kept a close eye on her as we ’slept’ at our new apartment for the first night.

It was a fitting kick off to the past two weeks as that was the first of three (and counting) allergic reactions Sadie has had to various new treatments. They all seem to pass without consequence, but cause much anxiety and remind us of how lucky we have been but also how vulnerable Sadie’s body is.

Right now Sadie is doing okay. She has had huge doses of chemo three weeks in a row and is really starting to wear the effects. She is ghostly white with red rimmed eyes and her hair is getting thinner by the minute. She hasn’t looked like this since the first month or so of treatment so we’re pretty upset by it. She is also on the second week of our old friend Decadron (the evil steroid). It’s many of the same side effects that we experienced in the beginning - the intense eating, the intense irritability, the intense restlessness. The big difference is that Sadie is 4 months older, an eternity in toddler-time. She is so much better able to express herself verbally and that seems to be a huge asset in managing the Decadron experience. She’s able to do things like ask to be held while falling apart and saying things to us like “I’m having big feelings again”. This is also mixed with a fair amount of growling and flailing and extreme frustration, but there is also this amazing experience of seeing her awareness of the out-of-control feelings and her attempts to ask for help in managing them. We still have 4 days to go before we peak on this cycle, and then it takes a few weeks to fully get the drug out of her system.

There is much more to share about the last few weeks, so this is just a beginning attempt at catching up. We also have many many thanks to give (that we are yet again very late for) to all the friends and families that have participated in the incredible fundraising events that happened in Brooklyn and in Mandeville over the past few weeks. We also continue to get wonderful cards and care packages in the mail. We truly would not be able to do the things we are doing right now if it were not for the thoughtfulness and generosity of you all.

November 25th, 2008

As I write you with this update on Sadie, please indulge me as I use this forum to express appreciation to all of the people who made our recent visit home in Mandeville a time rejuvenating our minds and spirits.  To each person who spoke words of encouragement, who offered prayers for Sadie and our family, who embraced us in ways that offered understanding and hope, we say thank you.  To each person who planned, implemented or attended the amazingly wonderful events sponsored by the Sunny Days for Sadie committee, we are deeply grateful for your support and generosity.  For us, each of you is a continuing source of sustenance and, frankly, wonderment as we are bolstered and lifted by your presence with us on this journey we travel with our spirited little Sadie.

The news of Sadie is somber because the current treatment phase is debilitating and many of the procedures painful, but the prognosis continues to be very hopeful.

We have just returned to Cushing following an eight day stay in Brooklyn.  Our time there was spent helping Sarah, Julia and Sadie move into a new (smaller) apartment.  Although they have until December 1 to vacate the "old" apartment, Sadie's doctors had warned that they needed to make the move ASAP because the current treatment phase is increasingly lowering her healthy white blood cell count leaving her feeling sick and having limited immune system   Along with our hectic non-stop packing and moving, Sadie had three separate hospital/clinic visits contributing to an over-the-top intense week.  In addition to the weekly anesthesia treatment, she had a chemo treatment that required shots in both legs.  Because allergic reactions to this procedure are a strong concern, Julia and Sadie were required to stay at the clinic for three hours following the shots.  As luck would have it, on the drive home Sadie began to get a rash on her face which spread to her neck and chest during the next several hours.  Julia stayed in close touch with the doctors, sending up-to-the-minute photos via email.  Luckily, I was there to make a pharmacy run to get the children’s benadryl which the doctors prescribed.  After a tense several hours, around 5 pm the rash went away.  Our plans for the afternoon which involved packing and moving the last of the kitchen stuff had suffered a blow, but since movers had taken the beds and other larger pieces of furniture earlier in the day, we had no choice but to finish packing the most strategic items and drag ourselves to the new apartment.  All of the adults were totally exhausted, but Sadie bounced back and had a lovely evening!   Even with our setbacks, we left Brooklyn feeling good that, for the most part, the move was complete and they were unpacked enough to function fairly smoothly. 

On a more positive note, we are so grateful that during these past months of treatment Sadie has not gotten a cold or any other disease that would have stressed her fragile immune system and that both we and the girls have managed to stay healthy.

Even as I apologize for being verbose, I know I cannot close with out once more saying thank you and imploring you to stay with us---we are on the home stretch and I know that your positive energy and prayers are integral as we continue on.  Love to you, Zella

Nov 11th

The Most Beautiful Heart...

Sadie had an echocardiogram (a fancy heart ultrasound) last week in anticipation of some new medications we start this week that will stress her tiny perfect heart (and ours). We foolishly thought the ulrasound would be no big deal.. no needles, no medications, etc. We were very wrong. Sadie was terrified and was completly inconsoleable. We think of her has being such a pro at all this medical stuff it’s easy to forget that anything new is going to be a disaster.

Rebecca was there - she’s been coming to many of our appointments to play support staff but also to take photos of what’s going on. It’s incredible to have a more objective visual account of what all this looks like. This is Sadie after calming down with a lollypop as she reviews her heart scans…

"Are you my new home?"

November 5th, 2008

The main task of the last few weeks has been looking (and looking and looking) for a new apartment. We finally have found our new home (deep in the heart of Bedford-Stuyvesant Brooklyn) and are now engaged in all things moving. We’re hoping to get all settled in the new place by mid-month as we are just wrapping up a ‘gentle’ phase of treatment and are about to head back into a difficult one at the end of next week.

Next Thursday begins a phase called Delayed Intensification. It’s sort of like the fireworks finale of this stage of treatment. Sadie will go back on the steroids as well as all other drugs that she’s experienced over the past several months. She will also be introduced to five new drugs. All of that comes at once as some kind of total annihilation strategy. It’ll last from mid-November to mid-January, so 2008 will go out with a bang of sorts.

But, we have been taking great advantage of this little window of time before things get rough again. Between looking at gazillions of apartments Sadie has watched her Uncle Crocket and Aunt Marcia get married, had her Grandma (Julia’s Mom) come for a visit, been to the circus, dressed as a ghost for Halloween, seen the New York Marathon and celebrated our new president’s victory in the streets of Brooklyn well after her bedtime.

Alone with Big Bird and Chemo

Oct 10th, 2008

Three months into Sadie’s intensive initial six months treatment and three weeks into the third treatment phase during which she receives massive doses of chemotherapy every ten days for fifty days, she is holding her own.  Good news:  during these past three months, she has not developed any infection which would require hospitalization and would delay the continuation of her treatments.  Apparently this is unusual and note worthy.

The not-so-good-news is that the cumulative effect of the large chemo doses is that her healthy white blood cell count is on a continual decline.  The prognosis is that quite soon Sadie, again, will be neutropenic (with out sufficient immune system) and will need to be confined to staying at home.

Following her most recent chemo dose- an all day procedure- she was quite sick with nausea and vomiting.  These reactions have been expected, but make the experience no easier for her or for her caretakers (all of whom would willingly take on the pain and discomfort this little person has endured.)  Sadie, however, after each agonizing procedure seemingly bounces back and then wants to tell and retell accounts of the incident:  “My sick”, “My throw up”, “My all clean”, “Where’s my stethoscope?”, “No big deal”, “This won’t hurt, I promise”.  The curiosity and high spirit of this little person is inspiring and continues to be a delight.

In response to the number of people who have asked for an update regarding how Sarah and Julia are doing, I would say that they have handled this time with amazing determination--almost like the adrenaline kicked in and has not let down.  However, it has been a relentlessly demanding time.  At their core, they are more tired than anything else.

David and I were last in Brooklyn about ten days ago. Our mission was to be live-in nannies for several days to give the girls an opportunity to take a break. Best laid plans----the day before we arrived, Sarah pulled a muscle in her back while opening a window and was in excruciating pain in bed taking prescription muscle relaxers the entire time we were there!  Our being there was still very timely, and we were happy that Julia had several days for a change in routine.  As you may know, Sarah went back to work quite sometime ago-- intense and stressful, but at least it involves a change of pace.  Julia had literally not been away from Sadie or away from their apartment except to go to the hospital, clinic or the grocery since Sadie became sick.  I think that I can speak for all of us when I say that as long as Sadie’s response to treatment is on target, we are ok.

Every day I think to myself how will we ever adequately express how grateful we are for  every person who has responded with love and concern to Sadie’s illness?  Words are insufficient, but still I want to say thank you.  And, ask for more- we dearly appreciate your continuing caring thoughts and prayers.

Love,   David and Zella

September 2008

September 17, 2008

“Normal” came to visit  for the last few weeks. Visits to the park, the beach and friends and even out to eat (once).  Sadie’s blood tests continued to be positive –just about as close to ‘healthy’ as possible right now.  With just a few clinic visits, Sadie finished out her series of weekly spinal taps. All good stuff.

Physically Sadie is doing fantastic; her vocabulary is astonishing and hilarious (driven largely by all the tv she’s watching). When the doorbell rings she wants to know if it’s “an unsuspecting stranger” and she frequently needs to “find my stethoscope”.

Lately however,  we’ve become increasingly concerned about her emotional health in relation to this experience. Sadie has always asked a lot of questions about the Dr. and the hospital: “What happened Doctor’s office….what happened hospital….what happened my port?”  We tell and retell the story of what happened in recent visits - we don’t leave any parts out and but we try and keep it simple and specific. “You have a big sick, your sick has a name, your blood is sick, your medicine is making you strong…”.  These answers have satisfied her until recently. Sadie has begun having a really hard time going to sleep, repeating the ‘what happened’ questions. She seems to have moved on from the easy answers and now is asking things like “how is my blood sick… why does medicine make me strong…am I sick now?”  She’s been having lots of nightmares and crying intensely in her sleep. We are looking into getting some help to be sure we’re giving her the best answers we can but it is incredibly hard seeing her comprehension of the situation get a little more complex.

We’ve now begun the next cycle (2 of 4) of this phase of treatment. This means huge doses of chemo every 10 days for the next 50 days. All of this is given through her port - so we spend one really long day at the clinic every 10 days doing lots of tests, then results, then getting hooked up to a rolling IV pole and letting all the neon liquids drip, drip, drip in. Sadie is a little too fearless about the IV pole so I seem to spend the time nervously chasing her and making sure she doesn’t get too tangled or too far from the pole.

Every 10 days the doses will increase; the goal being to give her as much as she can possibly handle. All of this will certainly take her down so as her Dr. said last week – “you’ve been on a peak but now you’re headed into a valley.”  We have been so so lucky that Sadie hasn’t been back in the hospital… with the weather changing and the pending weakening of her immune system it feels a little inevitable .

It’s sad to see “Normal” leave, but hopefully he’ll be back for another visit soon.

Julia, Sarah & Sadie 

"Hudson" comes for a visit!

posted August 30th, 2008

Not surprisingly, a week without heavy duty drugs (no more steroids!) can make a world of difference in a little person's personality.  During the previous week (August 18-25) with new energy Sadie displayed some of her normal enthusiasm for life and that sunny personality we all love.  Apparently she woke up last Friday announcing she needed to call Grandpere and ZeZe.  As she chattered away I asked if she wanted to sing together (something she loves but had been uninterested in since her illness struck in mid-July).  I suggested "Twinkle, twinkle" but she chimed in with a solo of her own, singing the entire first verse of "You are my Sunshine, " after which Julia said "See how great it is to have her back?"
      This past week Sadie started a new chemo and other medicines.  D and I went to Brooklyn on Tuesday to help in her Clinic visit and Hospital tests on Thursday because Sarah cannot take time away from work.  Gauging the length of those visits is hard because it depends on test results and any addditional procedures that may be necessary.  In addition, Sadie gets very anxious when she realizes where she is going."  
      How she will tolerate the new drugs is our current concern.   Please continue to keep her in your thoughts and prayers.
      Love.  

Posted: Sunday, August 17th, 8:08, 2008

Dear Friends,

I will steal the title of an e-mail that Julia, my daughter-in-law, sent on Friday to family and friends that perfectly expresses how Sadie is doing:  “Round one ending—Sadie takes the round!”  The implication is that she is in a fight and, although as you can see in pictures of her taken last week, showing some effects of the combat, she is holding her own.

Last week- intense, exhausting and sometimes terrifying- ended the first four-week period in Sadie’s treatment.  Anticipating a difficult week as Sarah feeling a combination of reluctance and determination went back to work, David and I went down to Brooklyn last Sunday and I stayed the week to help.  As I have noted before, the combination of heavy doses of several types of chemo along with the steroids have made Sadie feel generally really badly—constantly needing to eat, sweating profusely, painful digestive problems and understandably irritable.  David and I are writing down some of her more notable sayings:  “no cook it, put it right on the plate;”  “I need chicky soup, no brocci (broccoli) soup, just chicky;”  and when changing her diaper- “be gentle with baby’s body” or “no Hassenfeld (name of the clinic), no Dr. Gardner” or “no band aid” or “no ouch” (a needle stick).  She is very wary of anyone doing anything to her body!!!

Once again, we are elated with last week’s test results!!!!!!!  I am cutting and pasting Julia’s description of Sae’s test results and the next phase of treatment that we (a broadly collective “we” that includes all the dear family, friends and compassionate strangers who are making this journey with Sadie) will begin next week. Attached are three  photos taken of Sadie during this past week.

From Julia written Thursday, August 14th:  Sadie’s blood test today showed that her red and white blood cells (the healthy ones) are rebounding fantastically. Today is the first day in a month that she hasn’t been neutropenic (meaning she didn’t have enough/any neutrophils - the white blood cells that fight infection). This is also the first time in a month that she hasn’t needed blood transfusions to keep her red counts and platelets at a survivable level. Her body is producing their own and we are breathing a huge sigh of relief.

Today we learned what the next month with look like. Next week we take a week’s vacation from chemo. We still do all our regular blood test (and spinal taps), but no drugs. We then start a 28 day plan that goes like this: weekly spinal taps and weekly pushes of IV chemo (Vincristine) through the port. Vincristine is the medicine that is causing Sadie to loose her hair, so that will continue. Other than that, the side effects of that drug haven’t been so bad. We’ll do a new once a day oral chemo called 6-MP (which sounds like a secret codename for something sinister). 6-MP is the chemo that Sadie will continue taking for the rest of her treatment (others will come and go), so for about two and a half years. The biggest side effect of 6-MP is that it can cause Sadie’s blood counts to drop. This will cause bouts of feeling poorly, bouts of neutropenia, and likely occasional transfusions. Once they get the dose right they say its not-so-bad for side effects. Let’s hope this is true. She’ll also be taking an additional anti-pneumonia medication two days a week because getting pneumonia would be “not very good” (her Dr’s words).

While all that sounds like a lot, what we leave behind is the dreaded Decadron (the steroid). The side effects from that have been unbelievably awful and we are counting the minutes until the last dose.

Finally, this past week we were surprised by the news that friends in Mandeville have designed and implemented an amazing www.sunnydaysforsadie.com website that we will use for future updates on Sadie’s illness. This is welcomed because it allows us to pass on weekly information without being intrusive.  Additionally, the site is interactive which allows viewers to post messages to us.  Of course, we always welcome your messages!

As Sarah, Julia, David and I continue the “on-the-ground” care of Sadie, we are deeply appreciative for each of your continuing prayers, thoughts, messages and “Sadie presents” that so delight her.  Your love, support, understanding conveyed by these gestures sustain us in ways that we do not fully understand, but experience with gratitude.

Love to you