"Love on Leo: Help Leo Suchomski kick cancer to the curb!"

For: Chris and Meghan Suchomski
Milwaukee, WI
Organizer: Kathleen Gavin
"Love on Leo: Help Leo Suchomski kick cancer to the curb!" (Chris and Meghan Suchomski)
$19,658
of $40,000 goal
49% Complete
Raised by 176 donors

The Story


Leo was born in November 2015 to two loving parents and a spunky and adoring big brother. He loves trucks, dogs and baseball. He spends lots of time outdoors, his favorite person in the world is his brother Charlie, and his parents have always taken his and Charlie's health and overall wellness very seriously.

The morning of September 2, Leo's parents noticed a hard mass on the left side of his abdomen during a diaper change. He had been experiencing some unusual renal symptoms during the previous few weeks, and they were waiting on a schedule appointment with a pediatric urologist to determine the cause of the symptoms. Upon noticing the mass, Chris and Meghan called the pediatrician who advised them to take him to Children's Hospital of Wisconsin immediately. After preliminary testing and to the shock of his parents, Leo was diagnosed with what appeared to be a Wilms Tumor, a rare kidney cancer that primarily affects children. The tumor had completely taken over his left kidney. He was admitted to the hospital that day and scans were ordered which confirmed the diagnosis.

On Tuesday, September 5th, Leo underwent a radical nephrectomy to remove the tumor and his entire kidney. The tumor had eaten his kidney and was taking up more than 1/4 of his abdomen. It had grown quickly; his pediatrician thoroughly examined his abdomen two weeks prior to the diagnosis and felt nothing unusual. At the time of surgery, the tumor was 6" long and weighed over 1.25 pounds. Pretty huge for a tiny little guy! The surgery was successful, but during the operation part of the tumor ruptured, spilling cancer cells into his abdominal cavity. Several surrounding lymph nodes and blood vessels were biopsied, confirming that the cancer had metastasized to those areas as well. Thankfully, the pathology report showed favorable histology despite the advanced stage of the cancer, and Leo's prognosis with treatment is strong. He has begun chemotherapy and radiation in hopes of eradicating the cancer cells completely and avoiding a recurrence of the tumor.

Despite the strong prognosis for Leo, more than 95% of childhood cancer survivors will have a chronic health problem and 80% will have severe or life-threatening conditions by the time they're 45 years old. Chemo and radiation have many known long-term side effects including reduced kidney function, heart or lung problems, delayed growth or development, potential infertility and sometimes even secondary cancers later in life. Childhood cancer is truly a lifelong battle, and Leo's life will never be the same because of it.

At this point, Leo's parents are rigorously researching alternative and integrative therapies, supplements and lifestyle choices that will not only help Leo beat the cancer, but that will help him heal from the toxicity of chemotherapy and radiation so that he can go on to live a long, happy and healthy life. They are confident and excited to implement the plans they've made with their doctors, but they need your help to do it. A portion of the money raised will go towards helping Leo's parents with various needs during the course of his treatment. The rest will be used to fund the integrative therapies and lifestyle changes they plan to make, and will also support long-term care and healing for Leo. Please continue to check back for updates, and more than anything keep Leo and his family in your prayers during this difficult time. Thank you very much and may God bless you all!

#leothelion #leostrong

Fundraiser Updates

Posted on March 2, 2018

Posted on March 2, 2018

Leo  has had a difficult week. Last Wednesday he spiked a fever and we ended  up in the ER. His counts were fine, but we’ve built so much trust with  his regular nurses that having ER nurses with less oncology experience  was jarring for him. Nothing went well from vitals to his port placement, and then they needed a urine sample to rule out a UTI and had to place a catheter which was extremely traumatic for him. I cried too.  


Thankfully  we were sent home that night,  but Friday’s chemo was kind of a  nightmare. He told me first thing in the morning that he didn’t want to go to chemo anymore because the doctors hurt his port. I literally  carried him kicking and screaming through the doors of the clinic,  trying to hold back tears as he continued putting up a fight for every  routine step. He gave everyone the death stare the entire day and  refused to let his nurses weigh him or take vitals. You can probably  imagine how the port placement went. It was kind of heartbreaking to see  how his trust had been shattered in one night. He also needed a new NG  tube placed which is never fun, and the last thing we wanted to do after  the week he had had. When he was done with his chemo we took him to the  toy store and let him pick out anything he wanted. We’ve really tried  not to spoil him through all of this, but he completely deserved it. We  also bought presents for Charlie, who stayed home with my mom.  


He  has had a particularly tough time following his treatment on Friday. I  think his body is tired and the chemo is just hitting him a little  harder than usual. He isn’t sleeping well. He has thrown up a lot this  week and had diarrhea, which we suspect may be linked to a possible  cinnamon allergy. He threw up his tube 3 times which means he had 3 tube  placements in the last week, and on Tuesday we were concerned about  dehydration so we brought him for fluids and a counts check. His counts  have dropped pretty rapidly. He stopped eating on Wednesday and has lost  a kilogram since then. He has been tired, clingy, highly sensitive and  reactive all week. 
His  last chemo is two weeks away and today marks 6 months since he was  diagnosed. I am extremely grateful to be where we are, despite the  difficult week we’ve had. There are also a lot of complex emotions  surrounding the end of treatment and beginning of survivorship. We both  got emotional when talking with the NP who heads the next steps program.  There is so much still to process and reflect upon from the last 6  months and I suspect it will take quite some time.  


A few jumbled highlights from the last week:  

I am so grateful for nurses with endless patience and compassion for our little boy.  

When  we were leaving the ER on Wednesday night, we asked Leo if he wanted to  go home. He said, “no, I want to go be by Charlie.” Charlie is the best  big brother we could ask for.  

Charlie  slept at Chris’ parents’ house that night, and Thursday morning I asked  Leo what he wanted to do that day. He thought about it, then replied,  “I want to hold you.” So all day long we snuggled on the couch watching  March of the Penguins on the laptop.  

When we were in the hospital on Tuesday, the Ronald McDonald cart came around and the boys got some cool books and toys.  

I’m  so grateful that we have parents who are willing to drop everything at a  moments notice to step in and help. We literally wouldn’t have gotten  through this without their support. My mom came with me today to have  his tube replaced. It’s so much easier than going alone while Chris is  working.  


Thank  you for all of the continued prayers and support. Please pray that Leo  starts eating soon and that he starts feeling better and stays  fever-free these next two weeks. Right now we are taking things day by  day. I keep telling myself that we just have to get through March. It’s  so fitting that Easter is April 1st this year. We’ve had a pretty lent-y  lent so far, which makes me all the more excited for the resurrection  to come. 

May God bless you all, 

Meghan 


Posted on February 7, 2018

Posted on February 7, 2018

I've been meaning to sit down to write an update for months (literally) but time has gotten away from me! I'm happy to report that Leo is still doing well. If you follow me (Meghan) on Instagram you know that Leo's scans in December were clear as expected. I don't think I realized how much relief I would feel from knowing that his scans are still clear, which sounds silly in retrospect. It really helped us relax and enjoy Christmas with the kids.

At the end of October Leo got the Chicken Pox and we were admitted to the hospital for a week. The case was managed poorly and we feel that it was completely unnecessary for us to be admitted. His case was no worse than you'd expect from a healthy child and progressed normally. Nevertheless, we are grateful that he avoided complications and we were all thrilled to be discharged on the 30th in time to trick-or-treat with Charlie! Other than that, we've thankfully been pretty much free of complications other than a few fever scares and one disastrous NG tube placement, which is fine now.

We celebrated Leo's 2nd birthday over Thanksgiving with our families. He had just gotten chemo and next year we are looking forward to a birthday free of health-related issues. Shortly after his birthday were his midway scans, and once we knew they were clear we started the maintenance phase of chemo where we only have to visit the clinic every three weeks. Previously we had chemo every week which was very difficult for all of us. He was scheduled to get one drug each week and two other drugs alternating every 3 weeks. The weekly chemo isn't supposed to cause nausea or impact his blood counts much, but Leo seemed to have a hard time with it. He was very nauseous much of the time which seriously impacted his appetite. We also had to delay chemo a few times because his counts were consistently low. Because of this, we've spent a lot of time at home this winter which has actually been quite nice. It has given us a chance to connect as a family and think about our priorities and need for more family time and less time outside of the home. 

Since beginning the maintenance phase, his appetite has increased dramatically! He now asks for "sumpin' to eat" about 20 minutes after he finishes his last meal or snack :) He has been consistently gaining weight without the help of tube feeds. He actually gained a full pound in the last three weeks which is so relieving and gratifying for us to see. He is still eating a very strict diet with no sugar, processed foods, grains or dairy, and that will continue indefinitely.

In early December, we found an incredible integrative practitioner who specializes in the treatment of childhood cancer. I truly feel like it's divine providence that we moved to where we live and can see her in person. Through working with her, we pursued some genetic and nutritional testing and discovered that Leo has a few rare and severe genetic mutations that predispose him to leaky gut and impair his body's ability to absorb key nutrients including antioxidants. There is a correlation between children with cancer and children with these particular gene mutations. Prior to this discovery, we had been giving him 13-15 supplements daily and juicing several times a day. Since learning about the mutations and discovering the severity of his leaky gut, we've changed our focus to an intense gut-healing protocol designed by our integrative doctor. The results so far have actually been incredible. His particular chemo regiment is extremely constipating; most children need to take Miralax daily to help them have regular bowel movements. Unwilling to give him the prescription laxative, I've tried dozens of natural things to get his bowels moving and none of them have had meaningful or consistent results. Since starting the new gut-healing protocol, he's been having healthy bowel movements every single day, including the days after having chemo. His nausea is also significantly better than before; we've gone from giving him 3 full days of anti-nausea medication to 1.5 days and we have cut the dose almost in half. It's definitely still an uphill climb because the chemo itself destroys the gut lining, but it's a battle that I think we're winning. 

Thankfully we were able to avoid the crazy stomach bug that seemed to hit everyone around Christmas. About a month ago I was hit with the flu and I knew that Leo's counts were dropping. Chris ended up getting it and Charlie too, though his seemed to be more mild. I made an appointment with a practitioner who does IV vitamin therapy and we brought Leo in for a dose of IV vitamin C. His counts were rock bottom and he was the only one of us that didn't get the virus. I'm firmly convinced the vitamin C is the reason, and we've decided to keep up with IV vitamin therapy for him for awhile. It's a great way for his little body to absorb nutrients while bypassing his damaged digestive tract. 

Last night we returned from a 4-day trip to Florida to visit our siblings who go to school there. We found some crazy inexpensive tickets and got the green light from our oncologist the day before we left. The first two days Leo was feeling pretty crummy since he was coming off chemo, but overall both of the boys really had so much fun and I think a healthy dose of vitamin D was just what the doctor ordered for all of us. 

Emotionally, things have been very up and down. Some days are great and some days are terrible. He has a fiery personality and dealing with him on the bad days is physically and emotionally taxing. It's difficult to watch him feel so crummy after chemo, and then start to feel better, and then feel bad again when his counts drop. Then he starts to feel great, and we hit him with another round of poison. When his counts are low there's the fear that he'll get an infection and become septic or face another life-threatening complication. In a recent study, of 18 children that passed away from stage III Wilms, 14 of them died because of complications from chemo or secondary infections. Despite his strong prognosis, stats like that remind me that we're still very much in this battle. 

For the first 6 weeks of treatment we were just trying to get through each day, and then one day I remember looking at a picture of the boys that I took two weeks before Leo was diagnosed and I just started sobbing. I was hit with an intense wave of grief for the life we once knew. For awhile it was hard to see families with healthy children living a seemingly perfect life. I longed for life to go back to how it was before cancer became a part of it. In one sense we feel such a strong community supporting us, yet some days I still feel very isolated and find it hard to relate to others. It's sort of an out-of-body experience. Thankfully, I've met a few other cancer moms and it has been really good to have those relationships. A diagnosis of childhood cancer doesn't define you or your child, but it does change you. It has been difficult to find the words to express what this experience has been like, which is partly why I've had a hard time writing updates. I want to suffer beautifully, but the grief is still very much a part of this experience for me. 

On a happier note, our schedule last day of chemo is March 16, meaning we only have 2 treatments to go! At our last appointment we started talking about the next steps. We'll finish chemo, and three weeks after his last chemo we'll have scans. Assuming the scans are clear, his port will be removed the following week. From there we will have monthly checkups at the clinic and scans every three months for 3 years. After 5 years, he'll be considered cured. We're preparing to move into the "next steps" program at the hospital which is for kids who have finished treatment but are still being monitored with regular scans and checkups. From there (usually 3 years post-treatment) we'll join the survivorship program, where the focus will be long-term survival and minimizing late effects. During all of this, we will be focusing heavily on strong nutrition, targeting supplementation and healthy lifestyle choices for our entire family. We will also continue working with our integrative doctor to monitor his health. In my mind, his port removal is the day the healing truly begins for all of us. We are in the process of applying for a few different programs that help families heal in various ways, and we'll begin applying for Make-a-Wish in May! We are very excited for his wish to be granted and are giving a lot of thought to what would bring him the most joy and healing. Perhaps the most exciting event this coming year is the arrival of our new baby at the end of June. It has been such an incredible joy and blessing to have a new little life to look forward to in the midst of all of this. It serves as a constant reminder that even though life will never be the same, there are beautiful and happy times ahead of us. The boys are VERY excited and insistent that the baby is a girl! We'll see if they're right in June :) 

I can't wrap up the update without a word on Charlie. He is doing really well. We've started homeschooling which he absolutely loves, and we're in the middle of reading the Little House on the Prairie series. We're about halfway through with Farmer Boy which is my favorite, and it's the first thing he asks to do every morning. He still loves baseball and hockey and is all signed up for summer ball. Chris built an ice rink in our backyard and he has gotten really good at hockey! He plays on it almost every day. He is such a good and kind boy but also very energetic and sometimes exhausting. He and Leo are truly best friends. For awhile he was confused about Leo's cancer and where he stood in the midst of it. That seems to have gotten much better. One day he told me that when Leo is done with chemo, he wants to make a shirt that says "My Brother Defied Cancer" hah! His own words :)

Thank you all so much for your endless support. It's a constant reminder to us of God's unending presence and love. May God bless you all,

Meghan


Posted on October 19, 2017

UpdateImage

Posted on October 19, 2017

We have had a busy few weeks and I’m finally getting a chance to sit down  and type out an update! Leo is doing well overall and so are we. His  counts are low this week so we are staying home, but he’s otherwise his  sensitive, spunky little self! He is nauseous for about 48 hours after  chemo which is easily controlled by his anti-nausea medication.  Otherwise, he seems to be thriving, all things considered. Thank you,  Jesus! 
The week after I wrote our last update, we spent a lot of time talking to  our research scientist at Mayoclinic about the possibility of using an  antibody drug conjugate to treat Leo’s cancer rather than traditional  chemotherapy, and then the possibility of pulling his most toxic chemo  drug from his regimen. Although there’s promising evidence in favor of  both options, nothing panned out for Leo in the end. We are at peace  with it and on board with our current treatment plan and we’re happy to  have done such extensive research on it. We learned a lot! 
Once all of that was behind us, we started working more closely with our  naturopathic doctor to formulate a plan to help Leo tolerate the effects  of the chemo better, and more importantly, to mitigate the harmful  long-term effects of his treatments. I wanted to outline a few of the  integrative healing therapies we have implemented for those who may be  interested to hear what we are doing. 
The foundation for healing is good nutrition. When Leo has his port placed,  we asked the surgeons to insert a feeding tube at the same time. He  hadn’t been eating anyway and we both had a feeling that he’d eventually  need the tube for regular nourishment, but at that point mostly we  wanted him to have one because we knew that it was the only way we’d be  able to get solid nutrition and supplementation into him on a regular  basis. In retrospect, I’m so glad we asked them to place it when we did. His appetite has been seriously impacted by the chemo and it has been a  huge stress relief for us knowing that we can get nourishment into his  body even with his refusal to eat. One of the hardest parts about the  early weeks was watching him lose weight so quickly. It was so hard to  believe he would be strong enough to beat the cancer when he looked so  frail and weak. He’s still at the very bottom of the growth charts, but  he has stopped losing weight which is awesome. 
Next came the issue of what to feed him. The “organic” formula offered by  the hospital was unsuitable as the first three ingredients were MSG,  sugar and soy protein. A friend recommended a good brand of formula for  tube fed kids called Nourish, and we are happy with the ingredients.  I’ve used it a few times but feel more comfortable making his food  myself. It’s a lot of work but I feel it’s worth it. I’m using organic  grass fed bone broth as the base liquid and basically making puréed  vegetable soup with it. I add coconut milk and kerrygold butter for  extra fat. A lot of times he’ll eat the soup, but if he only takes a few  bites it goes through the tube just fine. We offer whatever we are  eating at each meal and we give him food through his tube after the  meal.
About 3 weeks ago we started juicing 3-4 times a day. The benefit of juicing  for cancer patients is that it gives the body access to a vast amount of  nutrients with very little digestive effort involved. The body can  absorb the nutrients quickly and easily which helps fight cancer and  detox the body from chemo. I make two green juices a day with green and  red lettuce, Romaine, endive, escarole, chard, celery, cucumber and a  Granny Smith apple. It’s actually really good! The other juice we make  twice a day is a carrot, apple and turmeric juice. (Side note-We are  focusing a lot on turmeric because it’s a strong cardio-protectant which  is crucial given the cardiotoxicity of one of his chemo drugs in  particular.) The juices should be consumed within 15 minutes of being  pressed for maximum nutritional value, and he has actually started  drinking them on his own. It’s nice to have one less thing to put  through his tube! We have noticed that his overall color, energy and  disposition is immensely improved with the juicing and although it’s a  lot of work, we really feel that it will make a difference in his health  and well-being. If I had to pick one thing that I think has made the  biggest difference for Leo, juicing would be it. 
We have started driving to a natural spring about 40 minutes from our  house to get water every few weeks. The water is tested regularly so we  know it’s safe and free of pathogens. It’s also perfectly alkaline and  loaded with minerals and sulfur, which is crucial for cellular health.  The best part is, it’s free! It’s also a beautiful and peaceful drive,  especially with the changing colors. 
We are trying to avoid supplementing too much, but there are a few  supplements that we are committed to. The first is a high quality cod  liver oil. Fish oil is so good for brain, heart, bone and tissue health  which is so important for patients undergoing chemo. The second is a  turkey tail mushroom extract, which is widely used in eastern medicine  as an adjunct with chemotherapy. It greatly strengthens the immune  system which helps the immunocompromised patient fight infection and  helps the cancer patient’s immune system fight cancer more effectively.  Our hope is that we can avoid infection and subsequent hospital  admissions during his time on chemo, and immune building is crucial for  that. We’ve also been supplementing with a prune juice concentrate to  replace the miralax that the doctors prescribed, as constipation is a  common side effect of the chemo he’s on. So far it has been working well. 
We  have a few detox protocols in the works right now, but at this point  our plates are pretty full. Between making his food, juicing, running  the demands of the home and spending adequate time with Charlie, we are  maxed. To all of you who have made meals, sent gifts, money and  restaurant cards, had our house cleaned, taken care of Charlie, sent  cards, said prayers, had masses, sent texts and emails and given us  positivity and encouragement—we truly cannot thank you enough. I am  behind on thank-you notes but know that we have been so touched by each  and every one of you. You have each been incredible instruments of God’s  goodness in our lives and we will never forget it!! 
I have come to a place where I am truly grateful for this suffering that  God has allowed. I know that he is bringing good out of this because  I’ve already experienced it. It has been humbling having a child with  cancer since I’ve so long prided myself on doing everything “right” for  his health. Some people in the natural health community have  not-so-subtly suggested that we must have done something wrong if our  one-year-old has cancer. I am learning to accept these comments from truly well-meaning people with humility and grace. I’m a more attentive, patient mother (most of the time!) and I worry a little less about things I can’t control. I don’t feel as rushed or pressured by worldly things. I know that Jesus is close to us, especially now. I recently  started praying a scriptural rosary, and one of the verses in the second sorrowful mystery is, “Ours were the sufferings he bore, ours the  sorrows he carried” (Isaiah 53:4) How comforting are these words! Jesus knows about this anguish I am experiencing and kept it and much, much  more in his heart as he suffered the ultimate sacrifice on the cross. He actually suffered and suffers with and for each of us personally. What a sweetness it is to be united to our Lord in  this way and to have Him united to us. We are truly never alone. 
Thank  you all again for all of the love and support! We couldn’t do it  without you all!! Please be assured of our love and prayers for each of  you. 
AMDG, Meghan  

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