I let this go for quite sometime. Most people follow her on Facebook, so I have been slacking....but for good reason!
We have returned from Boston, much earlier than expected. Thanks to an anonymous donor, many caring staff members, the good graces of this universe, and many supporters, Wynter had a successful transplant and is home enjoying a healthy isolation!
As I write this, I sit in the family waiting room at Boston Children's Hospital. Wynter is having a G tube placed to replace her feeding tube. We return to Lisbon for the holiday, have another procedure in Portland, have one day to pack, and then we return to Boston to admit for real. It came so fast, and I don't feel prepared, but it's happening anyway! Forever thankful to the young woman in Germany trying to save her life. Get on the registry, donations are life savers!
I would encourage anyone who comes on to this page to follow us on Facebook! I have been so much better about updates on there. It's: Shine On, Wynter. I post there at least a couple times a week.
We admit to Dana Farber on January 5th for Wynter's bone marrow transplant. We have a donor, a 22 year old female, who I found out today is actually from Germany. I may never meet her, but she is doing something more amazing than I could ever imagine. She could save my daughters life, and what better miracle is there than that? Wynter and I have made many many trips back and forth to Portland and Boston. Good thing she makes an awesome co pilot! All of our time between now and then is filled with tests and procedures, and it's taking a toll on her. She is tired all the time.
I was fortunate enough to be able to move in with family, and get the day to day support that's been missing. It's been just Wynter and I for months. The Portland area has given us many new opportunities including in-home nursing, and many choices for providers that we never had in Brewer. It's also a much shorter commute to Boston, a trip that she and I will make many, many more times. The support from family has been overwhelming!
Dustin and I are mid divorce. Great timing, don't you think? That's all I'll say about that, because it summarizes most everything.
Wynter and I stopped fundraisers a few months ago. They are very time consuming and this last stretch has been solely about her quality of life. My family and I have gone out of our way to ensure that Wynter is able to have peace and happiness every day we can. She is very happy, and has no idea how serious what's coming up is going to be.
We were able to do her Make a Wish, and it was everything she hoped it would be. She was able to sing Roar with Katy Perry! They flew us to New Orleans for her concerts, and it was absolutely classy every step of the way! What an amazing organization. Life had gotten so stressful and ridiculous, that is was so wonderful to put all that behind us for awhile.
Keep posted here, but mostly on Facebook, for more updates as we go through transplant. Pray for the best possible outcome!
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!
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.
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.
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.
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!
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.)
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!
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!
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!