Day 8 (6/30):

• GREAT NEWS - doctor says 99% confident there is no chromosomal translocation!!!  Another worry in the rear view mirror. 
• Annie is obsessed with food.  I was in trouble this morning when I got back to the hospital because I didn't bring her a hash brown from McDonalds.  Mind you, she ate pancakes and three bowls of cheerios before I got there.  Steroids. . . . .
• She still has that same peeked look about her, but tons of energy and in a good mood most of the day.  That was helped by the arrival of cousin Abigail.  Even better, Abigail arrived to see ANNIE, not Tich.  Aunt Lori says she's been worried sick about Annie and wanted to come and spend time with her.  They played in the play room for hours.  Another girl (we figured a sibling of another patient) was trying to horn in on their playtime, but Annie wasn't sharing Abigail with anyone!! 
• It was ice cream day again - two scoops of chocolate along with toppings of some sort.
• Which brings me back to blood sugar.  Endocrinologist was in today to talk about that.  Her numbers have been as high as 246 - normal is around 100.  They are now doing finger prick blood tests (Annie HATES it) before and after meals.  The doctor says we shouldn't control what she eats except no juice and no sugar candies - so ice cream is okay. .. . . . .  I wonedered for a split second whether she was the doctor or perhaps a pharmaceutical rep in sheep's clothes.  Anyway she didn't commit either way, but gave me the impression that we're going to be doing three a day insulin shots within the next couple of days.  Says the shots don't hurt. . . . .She's definitely a pharma rep. . . .
• Insulin shots are the least of our worries. We can deal with that, despite Annie screaming her lungs out every time she sees the poor vitals techs, who now come with the blood sugar tester included in their kit.
• Fern got a few minutes out today, which I hope energized her a bit, following 168 straight hours in the hospital.  She looked great when she got back - haircut, fresh air, etc. 
• Drilled her chicken finger lunch, that she now eats with ketchup.  She's taking after her uncles Jay and Jared.  Sent me down to the kitchen to get more for her last finger.  Told me "I only like chicken fingers with ketchup now, dad".  Kept trying to get some of the candy that came in some of her gifts, but we were able to distract her thank goodness. 
• When we walk down the hall, we now have a ritual where we hold hands and hum really loudly.  She waits for me to figure out the tune and then she mimics it.  She thinks it's great when people look at us.  Little weirdo.
• So, after I left tonight, she made Fern send me texts as follows:
• Annie wants to make sure you don't forget the hash brown tomorrow.
• Annie wants to know what you said after you read the text.
• She also wants cucumber slices with salt and pepper.
• Now she wants you to bring her a ham sandwich.
• If anyone out there has a skinny kid, I'll sell you some steroids on the side.  We can figure out a fair price. . . .
• Another platelet transfusion today.  It probably won't be the last. 
• ANNIE'S ARMY - we have a challenge for you:
• ON WEDNESDAY, AUGUST 17, we're hosting a BLOOD DRIVE at the hospital in Annie's name.  It's gonna run from 7:30am - 7:00pm. 
• A signup link will be coming shortly.  Please see if you can block off some of that day to come and donate. 
• They're happy for any blood types - they're also looking for platelets from men, or women who've already given platelets at Morristown.  The stipulation is made because many women have a virus called CMV nullifies the benefit to most patients in need of platelets.  If you've donated at Morristown already, they know you're CMV negative.
• Time slots are every 15 minutes and there is room for two donors at a time - so that adds up to almost 100 donations!!!  Please, if you're not afraid of giving blood, consider donating on that day in Annie's honor:)
• Stay tuned for the signup link, as well as a hotline to call with any eligibility questions you may have.
• A final Annie's Army note for the evening.  The last remaining members of the YMCA Early Childhood Learning Center came to visit today.  Just kidding, but numbers 5 and 6, Miss Kelly and Miss Dawn (who retired today - congratulations!!!!) came to see Annie.  Of course they came armed with pictures and gifts from them and other thoughtful staff members.  What a super place.
• Please everyone keep Annie in mind tomorrow - tough day:
• Spinal Tap (they now call it a Lumbar Puncture)
• Change of pick line.
• Big chemo day.
• Possible start on insulin.
• Sorry no pictures today.

Days 6 & 7 (6/28 6/29/16)


          Compliments of Uncle Eric. . . . . .

• for the past two days, Annie has spent most of her time disconnected from her IV.  She is drinking ample fluids to stave of any dehydration worries, so only needs to connect at night and thru the mid morning.  Blood work is done and meds are given in the morning prior to coming off IV.
• It's so much nicer to see her running around the room playing with the toys that so many have given her.  We're so happy that she's been able to go and sit outside and play in the room at the front of the ward.  She almost looks like a regular kid.  Fern and I have noticed that she appears a little drawn and her eyes look a little dark.  Oliver thinks he voice has changed.  Maybe we're all just being crazy - hopefully.
• She finally got to see a therapy dog!!  A little dog named Shelby.  I was not there, but Fern says she was very happy to see a four legged visitor:)

                               

• Blood work has gone well, except the nurse detected glucose in her urine.  That, coupled with high blood sugar for the past couple of days, has doctors concerned that she may need to go on insulin.  It is not unusual for kids being treated for leukemia to acquire diabetes.  The doctors have told us that it would likely subside after treatment ends.
• Fern met the parents of a 6 year old girl named Juliette who was diagnosed with leukemia the day after Thanksgiving last year.  She also has ALL and was in the hospital for the very first time related to a fever.  Of course, she has bee numerous times for scheduled treatments, but never yet on an emergency basis.  They had nothing but great things to say about the doctors and staff at the Valerie Center and Goryeb.  Thru our research and the continued great reviews from the families of patients past and present, we are feeling more and more comfortable that Annie is being well looked after.
• The dreaded chemo Friday is looming and Fern is going to take a much needed couple of hours out of the hospital tomorrow, while dad holds down the fort.  We're hoping that Annie goes into Friday as healthy as she is right now.  Additionally, the staff has a plan to adjust the anti-nausea meds to be more effective than last week.  Our fingers are crossed. 
• ANNIE'S ARMY NOTES:
• We've spoken with lots of supporters who talk about miracles.  We hope and pray for anything and everything.  Not so much miracles, but some very strange happenings that defy physics have been going on at my house.  When I drop my dirty clothes, they don't hit the floor like they used to.  Somehow, they fall directly into my mother-in-law's washing machine 10 miles away.  And a couple of hours later, they magically appear folded and in my drawers.  I'm not lying.  If it keeps happening, I may try to video tape it like those guys who have the show about ghosts.  Seems to be happening with the dirty dishes as well. . . . .  It's also happening with the pets - fed, watered, let out for fresh air and collected at the end of the night.  I've seen my 12 year old neighbor, Alicia, lurking around the house, so my theory is that she might have seen something that can explain this.
• When I pulled up to the hospital today, my buddy, Csorba, was sitting on a bench.  He lives a couple of hours north in Upstate NY.  When I got out, he gave me a hug and then was going to leave!  Didn't want to go upstairs and give germs to Annie.  I helped him get all the cooties off of him and convinced him to come up and spend some time with us.
• Annie's teachers keep coming!!  Miss Ashley and Miss Debbie came.  We have giant signs with all the kids' little pictures and names and wishes for Annie spread over the banners.  She loves the little notes they all made for her.

                                                   

• Lindsay's girl scout group delivered a beautiful package to the house with toys and crafts and pictures that the kids made.  I'm pretty sure, some of them have never even met Annie! 

                                

• My family keeps coming and fawning over her with love and gifts.  She's definitely going to end up spoiled and with a skewed perception of how cute, and smart, and funny, and strong, etc. she is.  She's like a movie star.
• The meal train started!!!  And what great cooks!!  If you're following the first couple of families, you've got some big shoes to fill - three words. . . . . .surf and turf!!  Just kidding - but so awesome of people to take the time to take food preparation out of our daily chores.
• An iPad showed up today from a work colleague of mine.  The Porwick family has officially gone overboard - I'm not even sure how to deliver it to Annie.  Maybe I'll lie and say it came from Santa. . . . .
• Thank you all so much!!

Day 5 (6/27/16):

• Went to work with Oliver today.  He was a good sport about it.  Even helped me by cleaning up the parking lot:) 
• When we got to the hospital, Annie was off of her IV, outside - yes, outside, with Fern and looked like a regular healthy girl.  We have to be careful not to get ahead of ourselves - keep telling ourselves that this is a long road and recovery is way down that road.  It's just so tempting for your brain to look at her walking around with all of her hair and color in her cheeks. . . .
• Per doctor, she continues to deliver terrific blood profile numbers:)  Almost starting to take that for granted.
• She had a chemo drug today that doesn't cause nausea.  If only they were all like that.  She had her appetite today and took part in some activities around the hospital campus.  They really do a great job making the kids happy and keep their thoughts away from the medicine and crappy parts of being there.  Today, while I was away, she made a Playdoh pizza, painted, and even played doctor - how ironic.

 

• Some really neat things today:
1. Annie got a surprise visit from two of her YMCA teachers today!!  They heard about her big challenge and wanted to come and show their support.  As is their tradition I'm told, they sat with Annie and gave her an "Elsa" braid.  She sat as patiently and cooperatively as we've seen in the past five days.  So nice of the girls to come and see her.
2. met a terrific girl named Heather - daughter of a work friend of Fern - Heather has leukemia.  She got it almost two years ago.  She was at the hospital today for a "maintenance" visit.  Essentially, she comes in around once a month and has her blood work done and if all is well, she gets a small dose of medicine and goes on her way.  She took the time to sit with us and talk about her experience with the disease,  our hospital, and the medical staff.  It might have been the best few moments that we've had since this happened.  She told us about how she missed most of her freshman year in high school, how she lost all of her hair about 5-7 months after her treatment began, and best of all how she is walking out the back door of leukemia:)  So happy for her and so happy to have met her.  She is amazingly well adjusted, doing well in school and just finished up her lacrosse season.  Gave us so much hope!!!
• Some Annie's Army items:
• my brother in law, Eric, wrote us from Phoenix with some interesting tid-bits that he learned while Googling leukemia - he discovered that stuffed animals are not such a great gift for someone with leukemia because they catch a lot of dust so are susceptible to carrying germs.  No worries about all the great stuffed animals folks have already gotten her, we're making sure to give them a good wash to make sure they're clean of any danger:)
• Uncle Mike roped the nuns and brothers in Lourdes, France to include Annie in their prayers.  And he's getting a delivery of the water of Lourdes.  I'm starting to wonder if there's anyone left who is NOT in Annie's Army.  Chances are, if you went to church yesterday, the mass you were at was dedicated to Annie:):)
• the hospital Chaplain visited Annie today, on strict orders from my next-door neighbor, Barbara.  She's retired from her post at our parish, but evidently still has plenty of juice:)
• okay, signing off for today.  thanks again to everyone who continues to hold us up.

Day 4:

• last night was a little bit easier - no vomiting, or fever, just lots of peeing and visits from nurses, techs, etc.  both of the parents slept better, though and I think Annie did as well.
• unless something changes, I think Annie is officially anti-hospital staff.  Fern (Stacy) and I appreciate them immensely, but Annie doesn't know what they're doing for them.  she just knows they come, wake her up, poke her, prod her, ask her questions, etc.  and her "roid rage" as the nurses explain is a very real side effect of her daily steroid medicine.
• early morning blood work came back and Dr. Halpern visits again.  he can't be happier with her numbers - verbatim: "we really can't better results than this".  music to our ears - Beethoven actually.
• what is not music is when Crankenstein is in a bad mood.  Fern has the patience of a saint, but stuck in a 20' x 20' room 24x7 with the monster is wearing on me. . . ..   What's that prayer about God give me strength??
• we're both thankful that Annie's color looks good, she's eating regularly (albeit, bird-like amounts) and generally looks strong and healthy.  hopefully she recovers this well every week. 
• we're also getting more used to frequent hand washing/sanitizing and identifying potential bacteria/germ invasions from surfaces inside and outside of the room, and anyone who enters and doesn't take a tug from the Purell container - grrrrrr.
• when we asked about Annie taking a walk down to the play area today, the doctor actually told us she could go outside!!!  I almost asked him for his credentials.  seriously though, we did get her to take a walk and see some of the floor - there were several body guards accompanying her on her tour.  and this week, we do plan to take her to the designated outside area for the kids - but one step at a time.
• some of our visitors got Annie to smile and laugh, and her big sister played with her for a couple of hours (a miracle before our eyes), which was invaluable medicine.

                                     

• tried to take a video of them playing, but it came out sideways.  anyone know how to fix that?  if so, I'll email you the video so you can fix it for me.
• need to fit a little work back into life and get a bit of normalcy for Oliver and Tich, so the three of us headed home with Annie in bed and Fern worrying over her. 
• now I'm home and got a text from Fern that there's a chemo treatment on her calendar for tomorrow that we hadn't seen before.  gonna be a quick visit to the office tomorrow. . . .
• have to say it again, Annie's Army continues to prop us up.  family, neighbors and friends new and old insist on pitching in to help us look after the home front, pets and older kids.  my brothers served as my surrogate at Oliver's soccer games this weekend, Fern's sister and Kelli hosted sleepovers, so many offers from friends to take them places and keep them distracted.  Uncle Bob has rallied a friend of his to add Annie to an upcoming radio show he's broadcasting worldwide.  Auntie Tibby has a Facebook chain going all the way over in England!!  more visitors come with toys in tow and happily put up with dirty looks from the little monster who will hopefully someday appreciate their love and concern.  my neighbor actually walked Bear - don't get me wrong, he's a wonderful dog, but he's terrible on a leash!!  Mikey Laglia Christened his baby girl today and took time out to remind the congregation to pray for Annie. our soccer friends almost pester us with loving heartfelt messages that almost threaten us if we don't tell them how they can help.  they even want to take the kids on trips!!  some friends and neighbors are even putting together a food chain:)  even the kids' teachers are saying prayers for us.  with all of the awful news stories that occupy our daily lives, it's so awesome to see that real live has so many more good people than bad.  all we can do is again say THANK YOU!!
• okay, signing off for tonight.

• No perfect days so far.  After playing with several of her new toys, including Playdoh, a cool light up toy, and the one she got from her sister, she started to tire and crank returned.
• The never ending vitals checks and visits from dr. residents (or whatever you call them) would be enough to drive a saint crazy, not to mention a sick four year old.
• Ever wonder how many people actually pick their nose - in private?  Well young leukemia patients openly pick theirs in the company of others.  Unabashedly. . . .
• Due to the expected depletion of red blood cells, she was started on a red blood cell transfusion about an hour ago - four hour process with vitals every 15 minutes and then some lesser intervals as the transfusion progresses. 
• Then here's "downstream occlusion" alarms, IV drip-induced bathroom visits complete with the obligatory urine collection for measurement and culture, etc.
• Finally our efforts to get her to eat are getting somewhere - she at a half a dish of her all-time favorite, pasta w/ butter.   She then promptly threw that up along with her anti nausea med.  But, when she's regularly eating she can come off of the IV and it's machines that have to accompany us to the bathroom 20 times a night.  Eat, Santa, Eat!!
• The reminders that we're not alone keep coming from "Annie's Army".  That's what I decided to start calling all of you before falling asleep last night.  You're the army of support that's gonna help make her better and keep Fern and Oliver and Tich and me sane.  Can't believe how much this has affected all of you.  We don't want anyone to worry, but it's very heartening that you do.  Means a lot to us to know that Annie is in your thoughts and prayers and that so many of you are at the ready for whatever we might need.  My grass could use a good cut. . . .kidding.  I'm sure you're not reading these blogs to hear about this, but it's my blog and I feel like telling you all.  It's one of the silver linings to a crappy situation to know how many great people we have in our lives.  There's always some good with the bad, and you guys are the good.  Can't thank you all enough.
• Grandpa Vinnie made our day by eating some of the huge cake from earlier in the day. 
• Coffee in the kitchen is surprisingly good.  I'm rambling. . . .

hospital continued. . . .

• Didn’t last – got a little sick once we got upstairs.  And to boot, after 24 hours on IV drip, Annie weighed almost 44 pounds this morning – weighed almost 41 yesterday afternoon.  Every time she throws up she pees her pants. She gets upset about it – almost 5 years old, so I think she’s a little embarrassed.  We just whisk her off bed and get her changed up – keep running out of clothes, but there’s always the hospital gowns.
• Some more visitors today, but she hasn’t been in the mood.  Coming off the anesthesia is no fun.  Doesn’t help that a member of hospital staff steps in literally every five minutes and 90% need to do something involving her.  She’s pretty mean to everyone.  A little torn between giving her some slack and keeping her from getting spoiled.  She’s a tough little bugger, so we’re trying to keep her civilized.
• Still no eating.  And chemo about to start.  We don’t expect much of an appetite after that, so she’ll just have to live on her dextrose drip, and, in the infamous words of the late great Fred Benjamin, her layers of fat.
• Chemo begins – it’s actually several meds.  No need to list them, but they all stink.  Tons of crappy side effects that add to our worries.  Saving grace is they’re all oral or IV (that go into her chest catheter). 
• Nausea and mood much worse.  It’s better when she’s sleeping, but doesn’t stop the pants peeing.  Lots of bed and clothes changes thru the night.  Between the vomiting and the developing cough, she has a very sore throat and is not real happy with that.  Her silver lining is she’s permitted to have ginger ale.  Quickly becomes a small obsession – ginger ale junkie.
• She also spiked a 103 fever in the night.  Chemo destroys most of the white blood cells in the body leaving the body vulnerable to bacteria, so fevers are treated very seriously.  She started on Tylenol and a course of antibiotics in the middle of the night (there is a pharmacy 10 steps from Annie’s roomJ).
• Late-late night, fever breaks and sleeping beauty is wide awake.  Fern asleep, so I soaked up a few fun minutes with the “old Annie” of 48 hours before.  Seems like a lot longer than that.
• Meanwhile, all so thankful for the throngs of flowers, toys, well-wishes, offers of assistance, etc. that keep flowing in. 

Saturday, June 25, 2016

• Morning starts with new plan for nausea.  And additional drug introduced, that is partly a sedative.  Once it hits, sleeping beauty is quiet and peaceful – hopefully no more throwing up. 
• Officially convert to the miniature hospital gowns, because all Annie’s clothes are gross now. 
  
• Puppy comes again and Annie’s sleepingL
• New blood work reveals white blood cells eviscerated.  That’s a good thing!!  Annie has Acute Lymphoblastic Leukemia. . . .

www.Cancer.org ……

What is acute lymphocytic leukemia?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Acute lymphocytic leukemia (ALL), also called acute lymphoblastic leukemia, is a cancer that starts from the early version of white blood cells called lymphocytes in the bone marrow (the soft inner part of the bones, where new blood cells are made).

Leukemia cells usually invade the blood fairly quickly. They can then spread to other parts of the body, including the lymph nodes, liver, spleen, central nervous system (brain and spinal cord), and testicles (in males). Other types of cancer also can start in these organs and then spread to the bone marrow, but these cancers are not leukemia.

The term “acute” means that the leukemia can progress quickly, and if not treated, would probably be fatal within a few months. Lymphocytic means it develops from early (immature) forms of lymphocytes, a type of white blood cell. This is different from acute myeloid leukemia (AML), which develops in other blood cell types found in the bone marrow. For more information on AML, see Leukemia--Acute Myeloid.

• So, for now, we love dead white blood cells.  Later, we’ll want them to regenerate with no leukemia cells present.  At any rate, Dr. Halpern says the result is better than what he expected.  He also was unmoved by our torturous evening and said she’s tolerating everything as well as can be expected.  It seems like the doctor started with bad news, but has delivered good ever since.
• Annie started bleeding at the site of her catheter.  Dressing changed to no avail.  Nurses worried, but surgical team sends up a doctor who takes a look and puts us at ease.  Second dressing change and all appears well.
• Dr. Halpern orders a second platelet transfusion (first one came on Thursday), even though count pretty good, because better to be safe than sorry about the bleeding.
• Hair wash from nurse and Aunt Lori to get all the throw-up out.  Annie doesn’t like the process, but happy w/ finished product.
• Giant Tinker Bell cake arrives, donated to Goyreb by Sweet Passion bakery.  The nurses decided that Annie should get the cakeJ  It’s huge and quite elaborate.  We’re gonna give some of it away to the rest of the floor.
  
   
   
• More new toys get opened, and afternoon goes relatively peacefully.  Still no eating, but no one seems concerned.  Hardly seems like a sick kid right now.
• Smiles continue and some red jello is first food she’s eaten since she came her on Thursday morning.  Once she’s eating regular, she may be able to go off IV for a while.  Making it to the potty has become a snap again – thank God.