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Love for Lillian

$25,000 of $35,000 goal

Raised by 263 people in 10 months
Created August 16, 2018
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On August 10th, 2018 sweet little Lillian was diagnosed with T-Cell Lymphoma .

To say this was unexpected is an understatement. At an 18-month wellness checkup on August 8th, her life-saving Nurse Practitioner recognized an abnormality in her breathing and ordered an X-ray. The X-ray uncovered a very large mass, which led to Lillian being admitted to Wolfson’s Pediatric ICU. We then learned that Lillian’s mass spanned most of her chest — applying pressure to both her Superior Vena Cava and impeding the majority of her lung functionality.

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Her Surgeons and Anesthesiologist repeatedly expressed that it’s one of the largest masses they’d ever seen. The positioning of the mass was of the utmost concern.

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However, after a few days of treatment, and ahead of schedule, Lillian was extubated, removed from sedation, had her chest tubes removed, and her tumor is now about a 1/3 the size of where we started. The tumor is shrinking in response to chemotherapy, steroids, surgical intervention, and prayers from all over the world.

This incredibly strong baby girl is handling the treatments and poking and prodding like a champ, but her parents and 3.5 year old big sister will need all the support they can get as they lean in to this situation. 

Timeline

This will likely be a 2.5-3 year journey, as the Palmers navigate the roadmaps set out for them by their team of doctors. The goal of this page is to provide support for them however they may need it. Whether that's to account for added childcare solutions for Big Sister Adelaide, the costs of flying family/friends in from out of state (as their families are not local), helping to supplement any lost income due to leave, or medical bills as they stack up. 

Unused funds

If the funds end up not being needed or used by the Palmer family, their wish is to use any surplus to:
-Contribute to other families' needs as they endure their own battles with pediatric cancer
-Donate to lymphoma research efforts
-Provide scholarship money for nurses

In addition, we just ask that you please pray for our Lillian Rose, and send all of the positive thoughts and love you have her way. 

A note from Lillian's mother, Sarah:

John 9:3 “Neither this child or [her] parents sinned,” said Jesus. “But this happened so that the works of God might be displayed in [her].”

I know that God chose Lillian so that she can become a living example of what love, strength and faith in God can do. I know that He has set Austin and me up for success in supporting our baby by allowing us to overcome numerous challenges in our lives the past year, and having an incredible tribe — from our family, to our friends, to our coworkers, to the incredible healthcare professionals we’re surrounded by — to lean on.

Here is my prayer:

Dear God, 

It’s been a while since we were close. Years upon years. And, even then, I don’t know how two-way our relationship truly was. Pretty sure it was just me begging you for help.

I’ve heard your voice and witnessed your abilities so naturally throughout each day of Lillian’s journey, and have embraced the roles you’ve given us for this life. I’ve accepted that my baby has a disease that will cause her pain, anxiety and tremendous uncertainty. I’ve accepted that I can not just snap my fingers and have us all wake up from this nightmare. I’ve accepted that she has cancer because she is now your disciple forever, with the ability and responsibility to demonstrate to everyone your ultimate healing power and saving grace. 

But -

As I lay next to she and Austin on the pediatric oncology floor and hear another young child yelling and crying out in pain and fear, my heart catches in my throat and my stomach turns. I barely made it through today watching her struggle to eat, drink and walk. How will I be strong enough to support her when her hair is gone, her mouth covered in sores, her gums bleeding; or, when she’s thin, pale and covered in bruises? How do I comfort her when she’s curled in my arms whimpering because of the nausea, or the aches? Or, worse, the fear. 

I understand that Lillian is part of your larger plan. I’ve already witnessed your ability through her to influence and ultimately change lives.  But, dear God —give me the wisdom and strength to be her rock. To be her warmth. To be her Mom. 

To be there for Adelaide. To prioritize Austin. To not turn from you in moments of anguish, or forget you in moments of jubilee. 

I put my entire faith in Your Hands. I bow down and accept all that believing in your divine power can bring. And, despite all my sinful and human ways, I will worship you infinitely. 

I pray that you wrap Lillian in your love; protect her from worse evil. Forgive me for my wrong doings. And, enlighten my mind and heart so that my love, demonstrating your power, can heal. 


Amen.


#LoveForLillian

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From Lillian's mom, Sarah:

"Lillian is doing great. We are in week two of her final intensive phase before she enters maintenance. She conquered 5 days of chemo last week like a boss, and is starting off this week incredibly strong. Today’s a long day — we checked in at 10, and she are here until about 5. The remainder of this week is comprised of shorter treatments daily treatments, and a spinal on Thursday. She repeats this cycle again next week.

Continued prayers for our sweet girl as she keeps fighting And for us — not sure how to manage all of the sassiness that accompanies my two girls!!! Thank God it seems to fuel their energy, and keeps us all laughing. Counts will start to drop again, but thankful that they were steady so that we could enjoy a beautiful weekend together."


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An update from Lillian's mom, Sarah:
"Lillian’s received 15 different chemotherapy doses over the past 2.5 weeks at this hospital, receives nightly chemo at home, and is scheduled for a spinal tap where she receives two more. Her counts are all significantly reduced and she’s entering a point called neutropenic — which essentially means her body is incapable of fighting off any type of infection. She’s tiring out more quickly, though that toddler spirit definitely motivates her to keep going! And, her appetite is becoming more sporadic. We expect for her to remain in this state for the next 2-3 weeks. Then, hopefully, her counts creep back up and we start the 3 week cycle of daily chemo all over again.

The past few weeks have come with so many emotional ups and downs for me. And, so many times, I have found my self asking “How the hell did this happen? Why did it happen to her?”

I know that there are no answers to those questions. I don’t know if I need an answer, either. I am just frustrated. I hate seeing my sweet, happy, fun loving toddler in discomfort. I hate seeing her not be able to physically do what she wants. I hate having to keep her so isolated to the house and to the hospital.I hate that when Adelaide gets dressed for school, or goes on playdates, or to JumpStreet or the library, that Lillian can’t go.I hate that when we go on family dates it’s typically just 3 of us; not 4 like it should be. I know this is a temporary phase. But, it doesn’t make it any easier.

At church this past Sunday there was a guest Pastor, Doug Fields, who is a renowned parenting expert. One thing he said that really hit home is how short the window of time is that we have to be great parents and role models to our children.

Did you know that from the time a child is born to the time they graduate from high school is a mere 936 weeks? That’s it. That's the length of childhood. And of that, Lillian will be undergoing active treatment for approximately 28 weeks (if all goes as planned!). That’s almost 3% of her childhood. Then, if we add the period of time on top of that where she’s in Maintenance (receiving sporadic treatments but still not considered cured), it’s an additional 96 weeks, or more than 10% of her childhood. So, when all is said and done — as long as she continues to hit milestones and remain on track — more than 13% of Lillian’s childhood will be actively fighting her disease.

It seems like a really long time. It’s unfair that such a percentage of her childhood is going to focus primarily on cancer. A disease that she was unlikely to get.

And, it’s also taking a toll on my sweet Adelaide. She’s so intelligent, so social and so independent that it’s hard to recognize the affects that this has on her. But, they’re there. They’re in the corners of her frown when I repeatedly have to use the phrase “First I need to do this with Lillian…” They’re there in her sad, wide eyes when she asks when we’re going to stay in a hotel room or go to Disney again, and I have to tell her “I’m not sure.” They’re there when she crawls into her bed crying at night because she knows Lillian’s in our room and Adelaide tells me “But, I don’t have a friend to sleep with.” They’re there when her constant prayer is “That my sister gets better and is not sick anymore.” It breaks my heart.

And, then there’s trying to live a normal life on top of living this parallel life taking care of Lillian. Supporting Austin so that he can be at work full-time, conserving his FMLA days in case ever needed, and knowing how much it pains him to miss major appointments or not be with Lillian in her moments of sickness and sadness. Trying to hold on to some semblance of routine, or fit it any time for ourselves without immense anxiety or guilt. Remembering to be there to support one another, and keep the stress, tension and exhaustion at bay. Looking ahead to determine what the appropriate childcare is for Lillian and Adelaide after I return to work and the weekly help from family expires.

The never, ever ending feeling of pure terror. Anxiously awaiting the next bad thing that’s lurking around the corner. Terrified that I won’t see it coming. Afraid that Lillian’s body can’t keep fighting as well as it has…knowing that it’s so likely that she gets worse before she gets better.

We were recently introduced to Chris: a Veteran who was diagnosed with Lillian’s exact same cancer earlier this year (Non-Hodgkins T-Cell Lymphoblastic Lymphoma). We were introduced to he and his wife, Kari, through our mutual friend Char. Char’s first husband, Jacques, fought alongside Chris and was sadly killed in action. But she, Chris and Kari have remained close friends ever since. Unfortunately, the prognosis for an adult with this type of cancer is about half of what it is in children. And, adults do not seem to tolerate chemotherapy nearly as well as young children can. Chris is having an intense battle with his cancer, and is currently experiencing significant regression — with his cancer now throughout his bone marrow and affecting major organ functions.

Since finding out about Lillian’s diagnosis, Chris has relentlessly prayed for Lillian. Even praying that he endure more so that she may be healed.On one of the rare days he was out of the hospital and feeling up to driving, he ran around town to purchase gift cards and presents for Lillian and us.He’s just that type of guy. A hero through and through.

We met Chris and Kari for the first time in person a couple of weeks back when Austin and I visited Chris in the hospital. The sight was terrifying. He was struggling to breathe, had very little energy, and is literally fighting the fight of his life. The thought that my daughter can become that sick has shaken me to my core. I try to recognize and think through the differences, but it’s a constant sight and constant emotional battle I am enduring.

And, while in the bed that day, Chris cried. (I sobbed, too, but that’s pretty typical now days!) He didn’t cry for himself — he cried for Lillian. He cried for Austin and I. His heart broken that such a young child has to endure this horrific disease.

We are now bonded to Chris and Kari forever. I am forever grateful that this hero is sacrificing so much of his own energy and abilities to pray and ask about my daughter. And, though I am scared, I know that there’s a reason that they’re going through this journey in parallel. I pray to God that Chris’s body holds strong so that the drugs can continue to work through him, and that Lillian never faces the challenges he is currently enduring. I pray that their bond and the love that we can provide to both of them gives them strength, and that God delivers them through this evil.

Most of all, I pray for more good days for my baby girl. I pray that she and Adelaide’s spirit and strength only grows through this, and that we as a family are forever stronger because of it."
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From Lillian's Mom:

Yesterday marked the start to Lillian’s 77 days of the Consolidation phase of chemotherapy. After a delayed start from her blood counts being too low (meaning she was too weak to begin), she was off of active chemo treatments for two weeks. Over these last two weeks, though, our little Lillian has re-emerged. Her personality, smile and speech is back. She’s still struggling with her mobility — standing limited amounts, and only walking with assistance for brief periods of time — but is wanting to play, move and interact. In the past two days even the feistiness and typical 19-month old attitude has emerged, and she constantly keeps us laughing with her facial expressions and sassiness! That sassiness plus Adelaide's "three-nager" attitude is definitely going to keep us on our toes!

It’s been absolutely amazing watching her “come back,” and while I am thankful she's on active treatment again, one of the greatest worries that I have right now is “losing” her again. I know it won't likely be in the same ways during the initial phase of treatment (thank God she is not on steroids for this new phase!), but I know she'll feel weak, scared and overwhelmed. And, as her Mommy, the inability to remove that from her is terrible.

These 77 days are likely to be some of the most difficult for Lillian due to the daily treatments. The doctors explain that this phase is the “what you see in movies” phase — where chemo patients become sickly, weak, and loose their appetites and the remainder of hair. So far, Lillian has tolerated chemo really well. And, though we are hopeful she’ll have normal to minimal side effects, we know it won’t always go our way or be by the book. Hope for the best; prepare for the worst, right?

To explain my level of anxiety as treatment was prolonged, and then now as we begin, is almost impossible. I never knew I would be begging for my baby’s to begin chemo again! But, her not receiving it means those cells can continue to act up, and that this terrible disease continues to fester within her.

And now that we are back on active treatment -- even though she's still herself and not overwhelmed by the drugs just yet -- all I want is to rip the line out of her port, pack her up, and run away with her forever; to pretend that none of this is happening.

But, that’s not an option.

For the next several months the reality is that her tiny body will be pumped full of aggressive drugs, suffering from painful and continuous side effects, while all I/we are able to do is pray that it continues to work and comfort her as best as I/we can.

It’s daunting. It’s terrifying. And, it’s just beginning.

Honestly, unless you've faced this or a similar situation, it's impossible to explain the mental and physical drain a loved one's illness has on you...I think especially when it's a baby who can in no way care for herself (though, thank God I've not had to experience other levels of care so may be saying something that is ignorant). Not only are we exhausted from the intermittent sleep patterns or daily doctors/hospital visits, but we're also just exhausted and overwhelmed from the constant emotional stress. Layer "real world" logistics on top, and it's a recipe for disaster.

We're desperately trying to ease unnecessary stress from our day-to-day, but it's impossible to eliminate it all and there's only so much you can do to "turn off" what's occurring around you.

And, yet, as overwhelming as this all is, and as horrific of a new reality as this continues to be, there are also so many blessings and gifts we've already experienced along the way. It's this that we are trying to focus on. It's what is keeping us going to be there for Lillian; to be there for one another. It's how we now that we will get through this and become a better and stronger family, and better, stronger individuals.

I know it may seem cliche and I'm sure so many people think this early on in these traumatic events, but finding God as adults (and as a couple) and learning how to enjoy a relationship with Him has been life altering for Austin and I. We are still learning, and have a long way to full understanding and faith, but I know for certain that God has a plan for Lillian...and for us. And, regardless of the turmoil, setbacks, unknown and anxiety, we believe that His plan includes Lillian beating this and living as a reminder of His abilities forever.

I am forever grateful for the gifts that we've received from God through this journey: from my rock of a husband who's opened his heart to God and is an incredible example to me of patience and resilience, to the perpetual love and support from our family, to the enhanced relationships with our friends. And, most of all, for this special and unique time with our babies and our family through all of this. God truly works in mysterious ways, and none of this would be happening in our lives without Lillian's cancer. So, I constantly ponder: is it a curse, or is it the first step for us towards a much more profound existence?

I hate that she is the person to endure this on our family's behalf, but how powerful will it be when she understands the influence she's had on us? How life-altering she is? How incredible and strong she is?

My constant mental mantra:

God is good. Cancer sucks.

God is forever. Cancer is temporary.

I believe in Him, and I believe in our love for our little girl so deeply that I absolutely know that she will beat this. The road ahead is long, but in my darkest times I pray that I remember my mantra and beliefs. And remember that God will carry us through.

One of my favorite all-time poems is Footprints in the Sand. So, if you're ever wondering what you can do to help, pray to God that He will carry us on this journey. And, pray for strength for our sweet, sweet Lillian.
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Update from Lillian's Mom:

Day 29. We have reached the final day of Lillian’s first phase of chemotherapy (Induction). The goal on this day is for the mass to be completely, or almost completely, eradicated and for Lillian to be considered in full Remission.

After a week of exams and testing, Lillian’s CT confirms that the chemotherapy is doing it’s job, and her mass is approximately 95% gone! This is great news and proves that chemotherapy is working! We are waiting on confirmation of the blood marrow test to ensure that the Lymphoblasts are also residing, but regardless of that outcome, we have a confirmation of our path forward and she is considered in partial remission and we are optimistic that following her next phase (Consolidation) that she will be considered in full remission.

Lillian is in the High Risk category following CMTX Arm B. The main change with the introduction of Nelarabine into the treatment protocol is how they classify High Risk, and the length of time each phase will take to complete.

So, next up is Consolidation — now 77 days in length; up from 38 in the original protocol. The volume of chemotherapy treatments is high, consisting of essentially (2) rounds 3 week on + 3 week off cycles. For the first 3 weeks “on”, Lillian receives chemo treatments daily (minus weekends), and for the following 3 weeks “off” she only has 2 chemo treatments. We then have a one week break for testing (to once again confirm that the chemo is doing its job) and then restart with the second rounds of 3 on/3 off.

All of her treatments are still outpatient — which is awesome because we can return home each evening and not have to live in a hospital. Our goal is for Austin and I to have an opportunity to work sporadically throughout this phase and take turns attending the hospital for her daily treatments. However, there’s still a lot unknown — especially with how she’ll react to the new drugs being introduced. Lillian continues to prove to be a fighter, and tolerates the drugs like a champ. However, they do compound over time and we know we haven’t seen the “worst” of it…which kills us knowing that our baby girl has to go through even more than she’s already been through.

However, another great thing of ending Induction is Lillian is now off of steroids! She’s been on steroids for a month — and we’ve experienced so many negative side effects from this that it’s hard to know what chemo alone looks like. Including an 8 pound weight gain and intense swelling from the fluid retention. We are starting to get mini-glimpses of our little girl back — some smiles, peek-a-boo and even less puffiness. Hoping that we get rid of the insomnia and midnight snack cravings soon, too.

For Austin and I, obviously it’s great news that she is making progress and that her disease seems to be under control, but I can’t help but feel a new level of anxiety and apprehension. Most of my energy has been focused on making it to today, so I don’t think I have fully considered this next phase until now. Being at the hospital for 3 days this week gave us insight into what these daily treatments there will look like — and it’s intense. Seeing our daughter in pain and discomfort for another 2.5 years absolutely breaks our heart.

I’ve been more emotional than I expected to be today; actually, feeling emotions I guess that I did not expect to feel: frustration, uncertainty and anxiety. I thought I would feel relief…and I do, but not to the level I had wanted.

As always, we continue to blown away by the support from our family and friends. My parents who are sacrificing so much to be here with us; my in-laws who always do so much to be here for us; my sister and her best friend who sacrificed their one weekend off to be here; our friends (near and far) who continue to overwhelm us with gifts, contributions and love.

We are blessed. And, even in my angst, I know that God is working miracles through Lillian. On to the next phase.
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$25,000 of $35,000 goal

Raised by 263 people in 10 months
Created August 16, 2018
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