Cancer Messed With the Wrong Girl

$5,833raised of $7,500 goal
77%

Organizer: Lisa Przybylski (mom) Beneficiary: Wynter Przybylski

On 2/28/2014,Wynter was life-flighted to Maine Medical Center and diagnosed with ALL (Acute Lymphoblastic Leukemia). A tumor was found on her spine shortly after. It was removed, but not before causing a spinal stroke and leaving her paralyzed. She will need many changes, adaptations, medical procedures, consultations, equipment, and long term personal care. She is a sweet, energetic girl, full of personality, and a love of all things sparkly, who's world has been turned upside-down. But if you met her, you'd never know. She carries herself everyday with grace, strength, and a beautiful smile.
Updates

Updates

09/30/2014
by Lisa Przybylski (mom)
An update or two...or twenty....

Wynter is home from the hospital after over two weeks. She began school last week part-time. She's very excited! Today is picture day and she's looking fabulous!

We'll go to Dana Farber for a consult pretty much any time now...as soon as we hear from them. It looks like we'll be doing the transplant. I am terrified, but know this is best. If it works, wonderful!!! She'll have a long and happy life cancer-free. If it doesn't, we'll know we tried everything. If a transplant doesn't work, continued chemo wouldn't have worked either. On the other hand, if we continue chemo and it doesn't work, we'll always wonder if a transplant would have. I have met some new amazing people in the last month of so, who know alot about this and they have been a good solid support. Other cancer moms, and moms who have recently and previously been through this process, have been wonderful, and I continue to meet more of them over time. Its a sad group to be in, but the support, and willingess to reach out to someone else when you yourself experienced tragedy is amazing!

Wynter's Make A Wish is coming up and we are shocked and amazed at what this organization can do. When the dust settles, I will undoubtedly give back to them! I cannot say what the wish is until after it happens because a celebrity is involved, so press is tight around it. But, when we return, we'll let the world know!

Cards for Wynter was a success and brought in about 700-800 cards for her! That week, she had her birthday, got her Wish, lost her 2nd tooth, and had her birthday party! It was an amazing week! Wynter has been all smiles for days! Next year we'll do a restaurant...I forgot how many things get broken when 20+ people are running around your home!

It looks like a benefit dinner is coming together for October 21at. Dont mark your calendars yet, since its not official. But, we have donations from ALOT of places that will make some fabulous silent auction items! $100 to Fiddleheads? A $100 amber necklace? Car detailing package? Front end alignment? How about a treat for your pets? A movie package? The list goes on.....if you like anything at all in the world, there will be something here for you! We're trying to nail down the date with the venue, and are working on some entertainment....want to showcase your skills? Give me a call!
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09/04/2014
by Lisa Przybylski (mom)
Its a bad news/bad news kind of day....

We were on such a high from the NO CANCER news, we were bound to be let down once again from this horrible disease.

Wynter spiked a fever and was admitted to the hospital. She had a blood infection, as it turns out. She went from amazing to tanking in 24 hours. A few days in, we found out there was a second blood infection. It had just taken a little longer to grow. The combination of the two was pretty serious. We'll be in the hospital a total of two weeks because she needs antibiotics around the clock.

So, the Oncologist laid it all on the line. Every round of chemo, she's gotten an infection. Granted, this was the worst, but it has happened every time. So, she presented our options from an infectious disease standpoint.

Continued chemo:
Pros......The level of chemo is reduced from here on out. We could put in a port and go swimming. Its effective so far at killing her leukemia, and could very well continue to be. We stay right where we are......she goes to school, sees her friends, and spends time with her family.
Cons....every round, she risks a serious infection. She still has 20 or so more rounds to go and each is playing "Russian Roulette." She is at risk for relapse. It continues to disrupt our lives for almost two more years.

Bone marrow:
Pros: Shorter term treatment, over in a few months. Makes Wynter permanently cancer free and able to have things like surgeries to reroute her bladder and avoid serious infections down the road. The most intensive and successful treatment for aggressive leukemia. We wouldn't have to worry about cancer, and would have far fewer infections long term.
Cons: It kills 50% of kids who go through the process. Its 4 hours from home and supports.....no school, no port, no swimming. Our lives completely stop for 6 months while we live out of state. She receives radiation and chemo more intense than anything she's seen to date. And the biggest con of all......I left the consultation in Boston with the worst feeling in the world....like she's never make it.

So, do I risk less time with her and no supports for something that's a sure thing? But only if she makes it? Or take my chances for the next two years? And sit in the hospital one week out of the month and have to worry about replase?

Sophie's choice, here.......Sophie's choice......

Either way, there's a good chance that months down the road, I'd be kicking myself for not choosing the other.



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08/30/2014
by Lisa Przybylski (mom)
The bone marrow results came back zero! Remission! Remission! Remission! She's cancer free!!!!

My fantastic mother is planning a fundraiser to pay for the stairlift, and things are coming together to make it pretty exciting.

I think this might mean things are looking up for us! Wynter will still need more than a year of chemo to make sure the cancer stays gone, but its certainly some peace of mind!
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08/12/2014
by Lisa Przybylski (mom)
Okay, here's the low-down.....

My sweet baby is about 50 pounds, and while hauling her up and down the stairs is wonderful exercise, its dangerous for both of us. 

I've decided its time for the lift. It is $3200. There are a few options out there for paying for it,  but the waitlists are a year long. So here's what I want to do....

I'm shouting from the rooftops for donations. This site took off like wildfire, but has stalled in the last couple months. I want to re-light that fire and bring in the donations to get this crazy lift that'll be a savior to my back!

Because of Wynter's needs and the level of her care, I have not been able to work for SIX MONTHS! And she's looking at 3-4 more months of nutty scheduling to go. At $45,000 a year, I've lost over $20,000. So obviously, paying $3200 out of pocket will be a massive hit.

Spread this near and far! We need this for Wynter's independence and for me to avoid a Chiropractor!!!

If you know someone who's particularly charitable, or have resources for paying for adaptive equipment (I've already spoken to Maine Adaptive - they are the $3200,  and AlphaOne - they have the waitlist.)
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07/31/2014
by Lisa Przybylski (mom)
So many, many things to update.

Wynter was scheduled to come in on 7/29 so her last dose of high dose methotrexate. Instead, her levels were so low that she was admitted instead for antibiotics and fluids. She was also spiking a fever and needed blood. It turns out she also has a fairly serious UTI which will require 10 days of antibiotics and will post-pone chemo until it runs its course. Just in case we were all set with bad news, she cannot return to school immediately in the fall. It likely won't be until December.

However, a couple days in, we had a follow up with the Physiatrist (Rehab Doc) who is optimistic that her bladder has begun working and leg muscles are developing. Oh, that's what I said!!!! After nearly no improvements for 3 or so months, and starting to lose hope, improvements are coming in like wildfire!

Now....my complainy, what the heck am I supposed to do part (stop reading if you only want to hear the good stuff).

Dustin and I cannot manage to stop fighting. He has an apartment and is moving out. Money is flying out the window as he furnishes it...which I have some thoughts about, but anyway.....He has returned to work, so he'll be fine financially.

I, however, am now left in a position with no job and no income. The plan was to return to work in the fall when Wynter returned to school. That's a no go. We'll continue to have months of this chaotic schedule, and what new employer understands that! "Oh, sorry, my kid has a UTI again this month, I need to call out all week even though I haven't earned any sick time yet. And her usual Tuesday clinic appointment, that got switched to Friday to test her levels for chemo on Monday.Plus, her Physical Therapsit is going on vacation and can only to Thursday this week." That should go well. After looking at apartments, housing, and even considering a duplex, I had debated just keeping the house and enjoy the fairly low mortgage for awhile. We'd burn through money at a much lower rate. I had AlphaOne come in and access to see what we needed to make it more handicap accessible and possibly get Wynter into the upstairs. That's not going to be do-able. The house just isn't worth that sort of investment. However, moving in with family is looking like a real possibility, since I could actually get some help with Wynter day-to-day and maybe even do things like WORK and not burn through money like crazy. The down-sides? So many....Wynter is settled here, has friends (who she sees very rarely anyway), likes her school, and has PT, a pharmacy, OT, an Oncologist, and everything already set up. She knows what, and who to expect when she's in the hospital. I have connections up here and could find another job fairly easily. I have friends, and feel an overwhelming sense of commitment to the community that's supposed us. I'd have to move everything into storage. It would be a big hot mess and would take serious time. So, clearly, I'm torn about what to do. I'm pretty sure there aren't good answers and I'm wondering, with so many families (unfortunately) affected by this, how do they get by for literally months, almost years, without income? We were very lucky that fundraising has been good to us, and we've set aside a large piece of that money. But, its scary that fundraising has come to an abrupt stop.

Luckily, Wynter is out of bed today! After two days in bed feeling like poop, she's up and about! Hopefully on the mend!

Really needing support right now! Keep it coming!
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07/14/2014
by Lisa Przybylski (mom)
It seems all the fundraisers have come to an end. It was an amazing, wonderful, and generous journey! There are no plans in sight right now for another, though we'd gladly welcome one! Taking care of Wynter 24/7 and not being able to return to work is certainly a financial stessor!

Wynter has had a rough go of things recently. Every two weeks she has an inpatient stay at EMMC for her high dose methatrexate. It completely wipes her out. The last dose caused mouth sores and she wouldn't eat or drink for days. She'd wake up at night crying in pain. Twice in between she ended up being admitted and she missed Champ Camp. This was devasting for Wynter as well as us. She has a feeding tube in so that she gets enough calories. We hate it and so does she, but otherwise, she'd waste away to nothing. Its impossibly hard to watch her struggle with simple, everyday things. I'm thankful everyday that I get to spend with her, but wish I could add more quality to her days. Even if we could get out her line and put in a port....at least she could go swimming. I find myself more and more frustrated that this journey has been so long and so hard, and wish that Wynter didn't need to go through this. We recently met a family with the same diagnosis and their journey was going much smoother. While I was so happy for them, I was so angry that everything needed to be so much harder for Wynter.

We did get out of the hospital long enough to go to Moxie Fest. We watched the fireworks, drank some Moxie, ate some lobster, saw the parade, went to the Moxie Store and had a great time with family. Even ended up being interviewed on the news while we were at the carnival. I was amazed that the generousity of people. Wynter cleaned up on prizes because people "let" her win, and she didn't know the difference. One guy who did win, gave Wynter his prize. Kids at the parade gave her their candy. Its just amazing to see so many generous people. 

Wynter's next bone marrow is still weeks away, but I'm hoping all this treatment hasn't been in vain and we can finally be in real remission. 

Thank you to everyone who continues to support us!
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06/17/2014
by Lisa Przybylski (mom)
Here are some updates!

Wynter's latest bone marrow results came back with .11% leukemia blasts. While this isn't zero and isn't full remission, its "residual." This is good enough that we can push forward with chemo and don't necessarily need to do a bone marrow transplant, because, let's be honest, that whole process is intimidating. 

Wynter was just in the hospital for a planned admission for some high dose chemo. It was supposed to be 3 days but turned into 6 because of a UTI. That makes time number three. After debating with a doctor who didn't quite seem to be able to make up her mind about a game plan, we discharged with some IV antibiotics and fluids at home.

So, we're keeping the course right now, because it seems to be working. Slowly......but its working. I can't imagine it wouldn't be zero the next go round. She's also getting set up for an MRI to see how that spine is doing since the surgery, and to be sure no tumors have formed back in that hole left by the previous tumor. Her spinal fluid levels have consistently come back clear, so I'm pretty optimistic.

In some personal news, it appears that Dustin and I will be separating. The house is already for sale, so one burden down. When it sells we'll move to separate places. We are being completely civil and recognize that Wynter has enough stress and does not need our fights and problems. If Wynter does not need the transplant, I plan to return to the working world in the fall when she returns to school. While most people will probably say that's "too bad" or hope we can "work it out," we're actually okay with it and hope that folks will make separating easier and not harder.

School ends today, and unfortunately Wynter didn't make it back...not even to say good bye. Were it not for our extended hospital stay, it would have been nice. Wynter just kind of disappeared from school one day and never came back to class. Closure would have been good, but UTI's really don't care. At least she saw a number of people at the school fundraiser, who can see that she's okay and in good spirits.

Next step....keeping the course with chemo, hoping for a full remission, CHAMP CAMP in a couple weeks, and having a fun summer!
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06/04/2014
by Lisa Przybylski (mom)
Well......

We went to a consultation in Boston to meet with the bone marrow transplant team. We were told before we went that this is a back up plan, and likely won't be necessary, but to keep it as an option in case we needed it.

So, we were a little blown away when we got there and we were told that she needs one. Not only does she need one, but her only real hope of long term remission is to get one since her Leukemia was so aggressive. So of course we asked a million questions and shared our dozens of concerns. Basically, here's some facts.....

Wynter would need to go to Boston in mid-fall for 10 days of intensive chemotherapy and full body radiation to zap her entire immune system down to absolutely nothing, leaving her open to every single kind of infection. After that, they transplant her with her donor marrow (the easy part). She then needs to sit in her room on every precaution for  weeks waiting for her new immune system to grow. For the next 2-3 months she will need to be monitored for graft versus host reactions (coughs, fevers, muscle aches, sores, etc) and for a total of 9 months she cannot go to any public places. Other downsides? 1) The radiation causes infertility. 2) 10-15% of patients die during the chemo and radiation and drop in immune levels. 3) Another 10-15% die from graft versus host complications that turn into major reactions. And 4) Another 10-15% die within the next 9 months from infections due to the reduced immune system. For those following the math, long term survival rates are about 60% give or take.

Aside from the medical stuff....

Wynter and I would need to live in the Boston area for 4-9 months. After this appointment, Boston is a terrible, terrible city! The drivers are awful, the streets are awful, and people were so rude. There is no parking and its all paid parking! Honking is very free and liberal! Heaven forbid, you should ever be in the wrong lane! Wynter could not go to school next year since we'd be in Boston from October until at least March-ish assuming everything goes right. We would be completely isolated from all of our family and friends, and hours from home and support. Even my phone was roaming and I'm pretty sure we can't pay for 9 months of that! That leaves Dustin to stay around here and work, since how else can we pay the 9 months worth of bills that will accumulate. I also could not go back to work in the fall, as planned, when Wynter returned to school. The house is for sale, leaving only Dustin at home to deal with that. Who knows where we'll live next since we could barely get pre-approved on only Dustin's income and we were going to roll with it until I got back to work and we had a decent household income. So who knows what the housing situation will look like when we get back. It would really need to sell before October, too, since I couldn't leave Wynter in Boston to come sign closing paperwork. Anyone want to buy it?

So basically, we're going crazy. We finally got through 3 months of putting our lives on hold and living in hospitals. It was SO wonderful to come home and have so much love, support, and compassion from the community. Now, we get to enjoy that for a few more months before we put everything on hold for 9 months. The fundraising has been so wonderful and gave us a great nest to support Wynter and we never thought we'd need even a penny more. I don't know that its going to last 9 months, and that has me very worried.

Wynter's hair is now gone and her head covered in tattoos. She thinks she's a little rocker! And she is definitely rocking this look! Thank you to everyone who continues to follow our story! Many, many more journeys to come.



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05/24/2014
by Lisa Przybylski (mom)
Well, because of the general awesomeness of people, I have had to increase the goal now for the 2nd time!!! We met $2500 within a week, and $4500 within a couple of months. We are now shooting for $7500 and are well on our way there. 

I'm running out of words to express my gratitude. Recent fundraisers in the community, including Raise a Glass, Brewer Rec Bottle Drive, Zumbathon, and Top Hat Dance have bought in over $10,000 for our family. That's not including this website, a wonderful and needed early donation from the Aliza Jean Family Cancer Foundation, and Wynter's general account that so many have been using! So, what are we doing with that money?

We are building a handicap accessible home for our daughter, right in the community that has been so generous to us. I was able to leave my job and spend every second of every day with her. We don't know how this fight will turn out, but either way, I will forever be grateful for this time with her. We purchased a hot pink wheelchair, shower adaptive equipment, paid for our one month stay at the Ronald McDonald House in Portland, and purchased "Team Wynter" shirts for upcoming fundraisers. Because of the time that Dustin returned to work, we have been able to be self-sufficient so that literally all of the funds raised can go to Wynter.

Upcoming fundraisers include a Brewer Community School event on May 30th, including silent auction and bake sale (Thank you to Ms. Crawford, Wynter's teacher, for spear-heading this) and Penobscot Nursing Home's benefit dinner at Penobscot Community School on June 6th (thanks to my former co-workers, particularly Naomi Dorr!). Team Wynter shirts and wrist bands available at both! Spaghetti Dinner is still planned by the Shriner's for an unknown date.

There are other shout outs I want to give that didn't fit into the above categories, including Dr. Libertore at Smile Docs, Dairy Queen, Medals for Mettle (thank you Amy!), the Brewer Kiwanis, WE Emerson, and the literally hundreds of individual donors, and other who have mentioned wanting to do fundraisers, or have them still in progress! Those who have donating gifts and services during silent auctions, the dancers at Top Hat for showing Wynter a fun time. I can't imagine I haven't forgotten someone. I think that shows how generous everyone has been. I'm having a hard time keeping track at this point!

And finally Wynter updates!

Wynter, Dustin, and I were all "typed" for a bone marrow donor match for Wynter. The results of that came back and she has 3 (10/10) donor matches in the US. One is amazing, three is a miracle! We will go to Boston in the next couple weeks to talk to the transplant team, as Wynter is expected to be in remission after this round of chemo.

We now have insurance!!! Something we didn't have when Wynter was diagnosed. We have widdled down the $160,000 in medical bills to something more reasonable that we stand some chance of being able to pay!

In the last week or so, Wynter has more noticeable movement in her hips, that's about 8 inches worth of improvement beyond that site of her spinal injury that doctor's said she likely wouldn't get back. It's not alot and it hasn't been quick, but it gives me so much hope that things will continue to improve! Wynter continues to be funny, silly, and smile all the time. Her attitude is amazing! I hope that years down the road we can look at this chapter of our lives in awe that a positive attitude can overcome anything!
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05/01/2014
by Lisa Przybylski (mom)
We are seriously $48 from our goal of $4500!!!! Who's going to push us over the top?!?

Big shout out to Bodies by Badger and The Maine Wine Guy, Chris McLaughlin, for hosting "Raise a Glass For Wynter" and bringing in $800!!! Also to Jamie Bettencourt for closing out the Pampered Chef fundraiser! Our next big event? Zumbathon on May 9th! 6 PM at the Brewer Auditorium. And soon to come, a dinner at Penobscot Community School (sponsored by my former co-workers at Penobscot Nursing Home) on June 6th. A bake sale/spelling bee at Brewer Communtiy School on May 30th, and a yet to be determined Spaghetti Dinner by the local Shriners. Not to mention ongoing fundraisers including the Brewer Redemption/Brewer Rec bottle drive and Scentsy fundraisers.

Now what the people want to hear, the Wynter updates!
Tomorrow is her bone marrow biopsy to determine the success of this round of chemo. Her blood levels suggest that this will be good news. Her oncologist says that he will be surprised if its not! We discharge on May 7th and return home either way, but we are hoping for the best!
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04/28/2014
by Lisa Przybylski (mom)
A few updates......

We are less than $400 away from our goal. I am amazed at all the support. A number of fund raisers have come and gone and left us with VERY generous donations from the community. Also a big thank you to the Aliza Jean Family Cancer Foundation for donating a stipend and an electrician to improve our home for Wynter. Despite the large number of folks willing to donate a wheelchair ramp, the Brewer Kiwanis came out and did a wonderful job.

Orange "Shine On" bands are in at Brewer Community School and remain on sale!

With a heavy heart and many tears, I left a wonderful job, that  was very generous. With Wynter's needs being so high, I will devote my time to her until a better time comes along to return to work. 

This Friday we have our next bone marrow biopsy to see where we stand and how successful this round of chemo has been. Keep your fingers crossed for success and remission!

We expect to be discharged May 7th. Wynter will make her post-hospital debut at Zumbathon. Hope to see you all there.
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04/15/2014
by Lisa Przybylski (mom)
Here is Wynter in the Bangor Daily.
http://bangordailynews.com/2014/04/12/news/bangor/community-rallies-behind-brewer-girl-battling-cancer/

A big thank you to the amazing number of folks coming out to the Brewer Dairy Queen yesterday. And to the Dairy Queen family for putting this on and supporting our fight!
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04/10/2014
by Lisa Przybylski (mom)
In our second tv interview, Wynter actually talks!

http://www.foxbangor.com/news/local-news/4946-wynters-strong-battle-with-cancer.html
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04/09/2014
by Lisa Przybylski (mom)
Check out Wynter's story on WABI.http://wabi.tv/2014/04/09/brewer-girl-fighting-leukemia-finds-community-support/
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04/06/2014
by Lisa Przybylski (mom)
We are in Room 863 at EMMC and Wynter would love some clean healthy visitors! Afternoons and calling ahead are preferred.
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04/06/2014
by Lisa Przybylski (mom)
So many things to update! People are offering to do fundraisers at such a rate that I can't keep track of them all. I appreciate every single one of the efforts but wanted to highlight a couple. On April 14th, the Brewer Dairy Queen is donating 25% of its sales to Wynter, so come out and enjoy some ice cream for a good cause. Brewer Rec continues to offer a bottle drive. Please drop off bottles at either the Brewer Rec Department in the truck labelled "Bottles for Wynter" or at the Brewer Redemption Center and ask for them to go to the "Wynter fund." There's also a 5k race,  jewelry sales, various departments at different companies sponsoring her, the Shiner's spaghetti dinner, a silent auction, and orange leukemia wrist bands all in the works! We are certainly blessed to live in a generous and giving community who has such support for her.

We are settled in at EMMC and are very excited by what we've seen. The Rehab doctor is wonderful and things seem to be on a good track to have Wynter prepared to come home. She has moved on to the second phase of her chemo and is part of a larger study that divides patients into three study arms, including one large control group offering the standard level of care, and two experimental arms offering (tested) stronger medications. We were lucky enough to get into one of the smaller experimental arms. Our oncologist, and of course our family, is much more optimistic. There have been no improvements on her paralysis,  but we remain hopeful and will go to Boston for a spinal cord consultation. Wynter continues to smile everyday, and I just know that will get her through.

Watch for our interview with WABI Channel 5. We're being interviewed tomorrow and we'll get a chance to tell Wynter's story and get the word out about fundaising efforts.
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04/01/2014
by Lisa Przybylski (mom)
We are discharging to EMMC tomorrow morning. We were hoping that this transfer would come with some good news, but that's not the case. Wynter's 30 day biopsy results came back and the results are grim. Typically, chemo would be successful and have a 0% leukemia rate in her marrow. Wynter has 12%. This dramatically reduces the survival rate from 90% to 30%. She will need more aggressive chemo and a bone marrow transplant. At some point soon we will need to go to Boston as this isn't offered in Maine. Donations are so important now. I doubt I'll be able to keep my job between her medical needs and trips to Boston. I struggle so much to understand why something like this happened to someone so sweet. 
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03/30/2014
by Lisa Przybylski (mom)
We are still waiting on biopsy results, but the plan is to transition to EMMC on Wednesday or Thursday. Continued thanks to everyone donating. Every single penny is going straight to Wynter.
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03/27/2014
by Lisa Przybylski (mom)
Many thanks to all the donors near and far. Tomorrow is a big day in Wynter's treatment. She comes to the end of her chemo therapy induction and will have a bone marrow biopsy to see how successful all this treatment has been. The results will determine her treatment moving forward and whether we are on a good track or need more aggressive treatment, including a bone marrow transplant. Wynter decided today that she is "tough like a diamond." 



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03/26/2014
by Lisa Przybylski (mom)
Hello everyone! I am so happy and proud to report that we passed the $1000 mark within 24 hours of the website launching. We are all so appreciative of the support. All of the money donated will go to making Wynter's life brighter and making her fight stronger.

We will not let Leukemia win!
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