Annies Big Blood Drive!!!!

 

 

Hello FriendsJ So many of our wonderful friends and family have expressed a desire to help Annie and our family as we battle leukemia with her.  We are humbly asking that you help Annie and others battling leukemia and cancer by scheduling a platelet or blood donation in her honor.   Thankfully, Annie isn't battling leukemia alone, because you, Annie’s Army battles with her!   Morristown Medical Center Blood Donor Services When: Wednesday, August 17th. Appointment Times: 7:45 AM - 5:15 PM. Where: Morristown Medical Center, Department of Blood Donor Services, 100 Madison Avenue, Franklin D Level. ·         Park in visitor's parking, located to the right of the front entrance of the hospital (on Madison Avenue). ·         Bring your parking ticket to be validated. ·         Go through the main entrance, straight down hallway to the Franklin Elevators (near the coffee shop and gift shop). Take the elevators down to Level D. Once you get off the elevators, look for the signs that say Blood Donor Services. The donor center can also be accessed through the Goryeb Children's Hospital entrance on Franklin Street. http://4annie.ahsblooddonorservices.org Or call (973) 971-7444 for an appointment or questions. Please eat a meal and drink plenty of fluids before your blood donation. Bring a picture ID (ex. Driver’s license, passport, etc). All blood types are needed. For leukemia patients like Annie, platelets are particularly important. First-time platelet donors should call 973-971-5621 for more information. Atlantic Health System Blood Donor Services          (973) 971-7444 *Thank you for helping Annie and others in need! Updates on Annie's journey to full recovery are posted on anniesarmy.org or anniesbigchallenge.blogspot.com   Tel: (973) 971-7444 Email: giveblood@ahsblooddonorservices.org

 

the "new" normal at home continues...

Days 21 - 29


Comprised w/ assistance from Fern/Stacy/Mom. . . .


We have all been home for over a week (nearly 2 weeks) and it has been pretty uneventful.  Annie has been in good spirits and seems to be for the most part back to her normal self (except for the missing hair).  Oliver and Tich have been at camps, etc. for part or all of the day (not to mention, more trips, sleepovers, etc.) and Annie has been hanging at home waiting for their return.

Oliver & Tich w/ Lutkowskie!  Thanks for the trip!!!

Last week she had what we hope will be her last chemotherapy treatment of induction (not the last chemo, just the last one of the first phase).  Last Friday's chemo went well and Annie tolerated everything like a straight A patient.  She was asking for McDonalds when we left the hospital but since we drove past a Wendy's agreed to slum it there.




Today (July 22) was day 29 of treatment- a big day.  We backloaded her on food and drink last night in the form of taylor ham and chocolate milk after 10 pm, because we knew she wouldn't be able to eat this morning.  We got to the hospital around 8:30 and Annie had her port accessed, bloodwork done and started on fluids.  Her biggest fear it seems now at the Valerie Center is not the chemo or  bloodwork, but the TAPE.  Yes, the tape being a bandage that is put over her port access.  Hopefully she gets used to it quickly because it is going to be something that is stuck to her pretty regularly.   Luckily when we apply the emlacream (numbing cream) at home prior to the visit we were advised to use "Glad Press and Seal" instead of the bandage.   Yes, what you use to preserve your leftovers.  We use it on our child.  Luckily it is not as sticky and comes off easily or we'd have to deal with TWO sessions of crying during tape removal.

who knew??

So today Annie was scheduled for 2 procedures.  First was a spinal and then a bone marrow draw from her hip. The marrow was removed and will be tested for leukemia.  As explained earlier, we are looking for a negative result on the MRD (minimal residual disease) test.  Which means they cannot detect any leukemia cells in 1 in 10,000 .  She is not a fan of the "sleepy medicine" however and was not happy to have to go into that room.  Thankfully, she woke up happy, and we knew she was okay, because she was asking for food. . . ..  

Waking up with her selection from the array of available snacks.  Thanks Valerie Center!!

After the potty and some snacks, they removed the dreaded tape, but she was able to pick a prize from the treasure chest and we left.  So strange to just walk out after being inpatient for 3 weeks.  We now wait for the results of the test, and those results will determine the next phase of treatment.  Our hope is that she is in remission and we can move onto something called consolidation (we think that is the name, again, the doctors do not want to get too far ahead of the game until they know the results).


So activities at home include cleaning and wiping down all surfaces with antibacterial wipes multiple times a day and lots of hand washing.  We also do some creative in-house fun. . . . .

even superheroes have to break for lunch.  thanks, Yelpos!

The only place Annie has gone since she was home was to California Beach Hut to buy a new swim cap.  She entered on orders not to touch a thing, and picked one with cat on it and will it when she swims each day. 
Aunt Therese came and cut her hair into a cute bob, which has helped with the constant thinning that's happening.  The swim cap helps so we don't have to sunscreen her head.  She even had a swim lesson this week from Kelsey Dugan (remember Heather, she has ALL and visited us in the hospital?  Kelsey is Heather's sister).  Annie was a so-so student, but Kelsey did so well, that Annie may be the first student of a future teacher:)

deep end!!

Annie trying to ignore the pool toys.

So we continue to sanitize and hang out. 

Kids hanging in Tich's new room!!  Thanks to all the designers!!

And, our yard is getting lots of needed attention, which staves off the boredom.
There would be a picture of her new obsession. . . .Uncle Jim's turkey, but she ate it all. . .


So fingers crossed and prayers for the results on the bone marrow.


Again, thanks to everyone for all your positive support, prayers, help, gifts (Annie is still complaining that her birthday is weeks away??), food, company, messages, etc. 

Tuesday, 7/12:
                                              

• After 20 days in the hospital, Annie came home today.  Makes me forget what happened over the last few days - other than the continued support we get from all of the wonderful people in our lives.  Hard to understand when you're not standing in my shoes, but I feel so fortunate and lucky.  Life is weird that way.
• Everyone is very excited.  Fern  (Stacy's nickname) and I are also, but sort of guarded as well.  Being a parent of a kid with leukemia makes you keep your feet on the ground.  Makes you thankful for today if your kid is smiling, but a little afraid to look too far out on the horizon.  "Even-keeled".  It has new meaning now - it always used to sound like a good quality, and I guess it is.  But, it really resonates when you're living an experience where even-keeled is so vital.  I'm proud of my family and my wife for taking this challenge on with chins up and eyes open.  We're very lucky.
• Annie's hair is still coming out.  After a couple of days, we're ready for it.  We've gotten her some hats (some supplied by the hospital via some wonderful people we'll never meet who make them by the dozen).  We're not sure exactly how we'll help her along as she starts to really see herself change, but at the advice of the social worker, we've talked to her about it.  Like most four year olds, I guess, she gets a little mad/sad about it, but moves on and doesn't worry about it.  Kids are so flexible.  She probably doesn't even need the hats. . . . .
• Talk of coming home started yesterday.  It was presented as this far off, remote possibility - almost like someone telling you something you all know isn't going to happen, but they're trying to make you feel better.  But, I was suspicious, because there was no pressure to say it - no one was crying or demanding information.  Dr. Fritz just mentioned it during our daily briefing.  Despite my suspicions, I went about this morning without thinking much about it until Fern called me.  It was great news, and put a good vibe on the day.  I ran around Walgreens buying up all the crap Fern listed in the text.  I even bought all the name brands - usually, I'm cheap and hem and haw over what name brands are worth it and what not.  Today, it was all the Benadryl, Purell, Lysol, Miralax, etc. I could find.  I even bought the most expensive thermometer on the shelf.  Ninety-three bucks.  The lady looked at me weird when I piled it all on the counter, but I didn't care.  Then, I had to pick up a bunch of meds at the pharmacy - ninety bucks - we have good insurance, so normally I would have made some kind of smart-ass comment about that copay.  Today I just happily swiped my card:)
• Annie took everything in stride.  Smiled at all the staff as they said their goodbyes.  One of the nurses came running out thinking she'd missed us - Annie gave her a big wave.  And she chatted us up on the way home as if we'd just left Dr. Frank's office 20 days ago.  And she didn't forget that I was supposed to get her a Happy Meal today. So, instead of driving home, we headed up 287 a couple extra exits to McDonalds drive in.  As I took the bag from the lady at the drive-thru, I made a mental note to not let Annie touch any of the packaging.  Germs.
• Stanley Steemer came today and cleaned all the downstairs fabrics.  We need to move some beds for them to do upstairs. 
• You'll all remember - ANC - the number that indicates our ability to fight off bacteria, etc.  Annie's is 470 right now.  Much better than the 40 from just a few days ago, but far away from the 5,000-8,000 that healthy people are armed with.  So, germs are the enemy.  The doctors tell us not to be too obsessed about it, but then give us instructions that sound a bit like quarantine.
• Annie was too weak to walk up the steps tonight.  Poor little thing - she was only on the second step when she called me to help her up.  We'll need to work those steps a little tomorrow.  Will probably do me some good, too.
• We go back to the hospital on Friday.  Seems like that's a mile away.  Having everyone home tonight (including our "regular" kids), is an awesome feeling. Everyone's up in bed - usually the time when I thank God they're all up there - no more fighting, crying about their dinner or whether there's anything fun happening tomorrow. . . .  Tonight I'm just glad they're all snug in their beds.  Feel a little like freezing time and just keeping this feeling for awhile.
• Couple more pics from past few days:     

                                                                                         
                                            

Days 14 - 17 (7/7 - 7/10):


Some more notes from Fern 7/7 - 7/9. . . .

For several days, Annie has been suffering from terrible muscular pain in her lower back/flank muscles.  She has cried in pain more from this than anything here to date!  The first night the pain was so severe they gave her a very low dose of valium (I wanted some too) and that let her sleep comfortably.  The pain continued the next day and we were told that sometimes leukemia patents suffer small fractures in their vertebrae as a side effect of some of the meds, so the doctors ordered an X-ray. Thankfully, it came back normal so diagnosis was muscular pain, likely caused by a combination of laying down in a bed a lot and the steroids.  Most 4 year olds don't sit in bed all day, day after day.  So the last few days with the back pain she was pretty unhappy.  She is often demanding a "heat pack' now along with food, her latest craving, corn on the cobb from home (thanks to the food train families who've made it for us!).  She told me "I have to walk like an old lady" because she walks hunched over ( kind of cute and funny that I had to laugh and she got mad and said to stop making fun of her).  Dad did same thing, but didn't get the hint when Annie told him off.

The good news of the week seems to outweigh the bad though (at least in her parents eyes).

First is that the test for the MRD - (Minimal Residual Disease) came back with NO leukemia.  The MRD is able to detect the disease at significantly smaller level than a microscope.  This is great news.  The REAL great news we are hoping for however will come on Day 29 (which is July 22). That's when the doctors will do another bone marrow draw and do the MRD of the actual bone marrow.  If it is clear, that means phase one of treatment (called INDUCTION) will be over and she will be in remission (which doesn't mean treatment is over, just that we can move onto the next phase of treatment).

The other good signs are that she has not had a fever since the first day ("every day with no fever is a good one" - common quote around this floor.  Additionally, after bottoming out at a low of 40, her ANC starting climbing today and was at 60 (just so you know for a leukemia patient they are very pleased with an ANC of 500- 1000 (an average person has an ANC of I think something like 5000).  We are just happy that she was going in the up direction.  Also, her platelets more than doubled from Thursday to Friday and her hemoglobin and WBC went up as well.

She had chemo today (which incidentally is an IV that lasts 15 minutes - again - very anticlimactic) so the numbers may drop again... but at least she was starting to trend up on her own - another good sign.  She had minimal side effects to the chemo today as well, she was a little nauseous about an hour after but seemed to be fine after that until she started to have back pain again and screamed for a heat pack.

Thanks for everyone who helped out with Lindsay's birthday and getting her "bedroom reveal" ready (she watches a lot of HGTV).  She seemed to have a great day despite having her 10th birthday cake in the hospital (there was a much conjecture about can we light the candles or not - went on for a several minutes until we realized no one had matches or a lighter - so it was a moot point).

 

7/10, Dad. . . .

• last night, just before I left hospital, the nurses noticed and then confirmed that Annie was running a fever.  a little disconcerting that the 4 or 5 readings they did were all over the board - "not a perfect science" they say.  but, the high reading was around 102.  remember - regular person gets a fever, just a sign that there's some virus or bacterial infection that their body is fighting - minor stuff.  not so, for someone with virtually no WBC -

White blood cells (WBCs), also called leukocytes or leucocytes, are the cells of the immune system that are involved in protecting the body against both infectious disease and foreign invaders. All white blood cells are produced and derived from multipotent cells in the bone marrow known as hematopoietic stem cells.  (thanks Google).

• so, all hands on deck - residents were called in to examine her, two blood tests, and a nasal swab.  these things are done to determine whether viral or bacterial and what kind.  viral tests are quick and bacterial take up to 48 hours.
• she also was immediately put on two different antibiotics (again, thankful for the pharmacy that I could probably hit with a spit wad if our room door was open)- one for pneumonia, and one is a sort of catchall antibiotic. 
• fever quickly subsided and later we found out that all of the viral tests were negative.  still weighting on bacterial cultures.
• Oliver had a soccer tourney in PA this weekend, so I did a lot of driving back and forth and when not at the hospital, Fern kept me updated with calls and texts.  fever stayed at bay all day today and the doctor set us at ease by reminding us that part of the reason she's kept in hospital is to tackle this kind of bump in the road as soon as it presents itself.
• on way home from PA this afternoon, I was reminded that I had to bring Annie macaroni and cheese, "the orange one, Daddy, not the white one".  this will go on for a few days and then she'll be on to something else.  don't have to tell you all that - you know her deal. . . . .
• Annie's hair is falling out.  we thought this would be a challenge to deal with down the road - 5-7 months from now.  so much for that.  she always used to tell me, "daddy you need to get hair - you have no hair.  you only have it on your body".  thank God I always told her I didn't mind and that hair was overrated.  now, maybe I sound a little credible when I tell her that.  tonight, we were taking out her braids and she was looking in her little hands in between her fingers and said, "dad, my hair is falling off".  I told her "who cares"?  she said she didn't want to be bald.  said it was okay for dads to be bald but she's a girl.  I told her I like her with hair and will like her without hair.  laughed a little at her and told her we could be bald together.  she wasn't crazy about the ribbing, but then reminded me that she wanted to get a haircut.  I told her we'd talk to mommy about what kind of haircut to get and she was okay with that.  whew - narrow escape.  how come she has to notice her hair is falling out when I"M STAYING AT HOSPITAL????
• she's now falling asleep asking me if we can get her "coffee drops" tomorrow.  I got her some life savers the other day to help with the cough and told her I'd get her some real cough drops at the drug store.  guess she's a bad listener.  now she thinks she's getting coffee in a candy form.  keeps asking me what color they are. . . .
• good night.

Days 11, 12 & 13 (7/3 - 7/6):

Hope everyone had a great time over the Fourth of July weekend.  Oliver and Tich both had eventful times thanks to awesome family and friends.  We're going to have to have about a hundred sleepovers (already) as payback. 


My dear wife scribbled down some notes about the past few days, and I have to say, her 24/7 attendance at room Goryeb Children's Hospital room 10 yields some pretty informative notes.  So, compliments of Fern, here is her summary of days 11 - 13:

When the doctors said most of the time here would be anticlimactic - they were right.  Annie has been seemingly normal the last few days. She goes from various activities in the room (play-doh, crafts, iPad, coloring, Shopkins), naps, eats, talks about food, eats again, takes walks, goes outside to blow bubbles, etc.. 

It is pretty uneventful.  Her vitals are checked regularly.  It is a wait and watch game now.  Pretty much on a daily basis Annie's blood is drawn and a CBC done.  The counts we look at are white blood cells, red blood cells, platelets and the "ANC."  Her ANC on Sunday was 500.  Today is was 150.  The doctors are not shocked or surprised as many kids bottom out to zero during this first month of treatment.  But what is means for us is that Annie has limited means to fight off any infection at this time.  Translation - she stays in the hospital.  They check her vitals, specifically her temperature blood pressure and heart rate regularly.  What we are looking for (and hoping to avoid) is a fever.  But since we are in the hospital, if she gets a fever, they can treat her immediately.

She has been nicer to the doctors and nurses recently.  When they hook her back up to her port she often mimics the procedure on the hospital doll with a port.  She doesn't growl at them anymore either.

Today when we were in the lobby she wanted to pose with one of the statues and have me take a picture?  I guess she's pretending to be on vacation or something. . . . .

                                          

So the next few days will probably be more of the same. Just chilling out in the room.  She has asked only a few times how long she has to stay here.  When she gets home she wants to go swimming.

 

We are all so thankful for the food and help, can't say it enough.  Sounding like a broken record.  Annie has made good progress on the snack bin from Sheridan Lane (she often says she wants something from it for her "bedtime" snack)

 

Next treatment on Friday and we will continue to watch her blood counts each day.  She may need another red blood cell transfusion in the next few days.  

 

I was reading in the manual of questions to ask visitors and playmates:
"have you been exposed to or have an infection? Do you have a runny nose, cough diarrhea or rash? If yes do not visit!"  Boy oh boy.  We do appreciate your visits and know that everyone will continue to use good discretion:) 

In summary - her shirt from Miss Ashley says it all "Good Vibes" keeps sending them.

Days 9 & 10 (7/1 - 7/2):

• Annie had her second surgery yesterday.  It was sort of a mini-surgery.  We went to the Valerie Center instead of the O.R.  The anesthesia was different and didn't require a breathing tube.  Fern and I were able to be in the room until she was sedated.
• Many of you have probably been put under anesthesia and remember "10, 9. . " and then waking up.  But, you don't really know what happened or how long it really took for you to fall asleep.  It literally takes 2 seconds.  Annie was nervous and upset, of course, about going in for the procedure and was crying.  The anesthesiologist was talking to her about where to put the little sensor that reads the patient's oxygen level - usually goes on the finger or toe.  She was telling him she didn't want it anywhere, when he said, "mom, she's gonna fall asleep in about 2 or 3 seconds".  It was two - right as he said it, she took one blink and then her head literally went limp.  The nurse was ready and took her chin just as she started to slump.  Amazing.
• Her surgery was to do another spinal tap (or lumbar puncture for those who've been reading the blog:)) and change her port.  The spinal tap was done to draw spinal fluid to check again for leukemia and to give another dose of chemo in there.  The port change was just done to avoid infection, etc.
• Everything went well and she came out with the gurney feet-up.  Apparently, there is a theory that lying with head lower than feet helps to get the chemo meds get up to the head.  Looked funny, but if it will help, go for it.
• Last night she received her second phosphate transfusion, which takes four hours, but doesn't bother her in the least.  Phosphorus is an essential electrolyte which can apparently become deficient in ALL patients.
• This morning, we got confirmation that there was no leukemia in the spinal fluid. 
• Almost as exciting, she had no nausea from the procedure or the big chemo day. 
• Last piece of great news is that Annie's blood sugar seems to have gotten itself under control and they discontinued the six-a-day blood sugar tests.  She may have hated those as bad as anything so far, and was beginning to get hysterical every time the tech came in the room with the test kit.
• Her appetite remains voracious.  But, she's starting to go more for the junk and snacks (salty, not sweet) than her meals.  Hard to tell her no, but we're gonna have to do something. . . .

Annie's Army:

• Many of you have already committed to the 8/17 blood drive - THANK YOU - signup link to come next week!!
• Lots of visitors, including the miracle worker, Alicia.  She spent some time acting impressed as Annie showed off her new toys and then played with her down in the play room.  After that, she had to head home to look after all the pets:)
• Annie made it the top of another prayer group - in California!!  Compliments of the Bielinski family.  They've also delivered a prayer shawl that the group knits as they pray.
• Sister Theresa visits frequently, even though Annie won't talk to her.  I think Annie thinks she's one of the doctors, which would explain the icy reception poor Sister Theresa gets.  Despite that, she sat with us last night and told us about her pilgrimage to Lourdes, and told us what to do with the Lourdes water we got from Aunt Nance during the week.
• Our friend, Rami Attieh, is 4 days into his nine day Novena. 
• Our neighborhood got together and made up two giant snack kits - one for Annie at the hospital, and one for Oliver and Tich at home.  I'll bet the dentist is smiling.
• The Collins family earned a date to Reservoir Tavern when Annie's well:) 
• The meal train is wonderful - we can't thank the participating families enough.