THE INTRODUCTIONS Hi there, my name is Darcy, and I am fundraising for 7-month-old Kensleigh Williams and her parents Jon and Makenna. Makenna is the daughter of my best friend Lori Grissman, whom I've known for over 25 years. Lori and I have gone through our adult lives together, having been there for one another through the highest of highs and the lowest of lows. To say that we are each other's RIDE OR DIE is an understatement. Lori's kids have always held a special place in my heart and now her granddaughter Kensleigh does as well. Kensleigh was born on December 26, 2024, and since then I don't think there's been a photo where she isn't always smiling. She is simply one of the happiest girls that I've seen. She has the most beautiful eyelashes that stop you right in your tracks and makes you do a double take. At that point, it's too late and she's got you wrapped around her little finger. The personality is strong with this little one, too! As I mentioned before, Jon and Makenna are the young parents of Kensleigh. I've seen them in action since the day Kensleigh was born, and they are naturals! They both continue to pour all of their love into this little girl who in return gives them unending joy. Jon has a full-time job and this allows Makenna the opportunity of being a stay-at-home mom for Kens. THE JOURNEY TO THE "C" WORD Around 2-1/2 months of age, Kensleigh's left eye started having involuntary movements, so Makenna brought it to the attention of their pediatrician. He reassured her and said it is probably just her trying to focus, and that her eye just wasn't strong yet. At 3 months of age, Kensleigh's eye was still having uncontrolled movements, but now they seemed to be more frequent than before. Once again, the doctor said the same thing; the eye was just weak. By Easter, the involuntary eye movements had begun to be noticed in the other eye as well. Their pediatrician diagnosed it as possibly being nystagmus, which is common in babies when they are trying to focus and their eyes aren't strong enough, yet. The nystagmus continued to be present at the 4-month mark. This prompted the pediatrician to refer Kens to an ophthalmologist at Bay Care Hospital. On June 1, they went to the appointment with the eye doctor and he said that it looked to be nystagmus and it would probably resolve on its own around age 1 or 2. Makenna & Jon were told to monitor it and if it got worse he'd get her set up to have an MRI conducted at Children's Hospital in Milwaukee. A week and a half later, Makenna called the ophthalmologist back because the eye movements were getting worse and happening all the time. Makenna & Jon felt that an MRI was needed to make sure everything was okay with their sweet daughter. THE MRI Kens parents took her June 29, back to the ophthalmologist at Bay Care. They wanted him to see firsthand the new changes in her eyes, and they were hoping that the MRI could be scheduled soon. After observing Kensleigh, the doctor became concerned, and he said the increased rapid eye movements could stem from many different things. The MRI was ordered to help narrow down what the cause may be. On the morning of July 20, Makenna & Jon took Kensleigh to Children's Hospital for the MRI. They nervously hoped and prayed that the scans would come back normal. At 3:42 pm Makenna received a call from the ophthalmologist regarding the results. He informed her that there was an abnormal growth in Kensleigh's brain and that it looks to have spread. He also said that these types of tumors are usually benign, but he was going to refer them to a pediatric oncologist (that's a cancer specialist for children) down at Children's. The opthalmologist tried to reassure Kensleigh's parents and said, "She will be in amazing hands and that it was all going to be okay." He then informed Makenna that within 24 hours she should be getting a call from Children's Hospital to set up an appointment with the pediatric oncologist and to hear more details regarding the MRI results. Jon & Makenna's lives took a change for the worse that day. That evening, they got the results from the MRI scans and they didn't look good. There was CANCER. IT'S CANCER On July 21, Makenna received a call from a nurse at Children's Hospital. The nurse went into detail about the MRI results and stated that there was a large tumor and multiple other lesions. The cancer had spread. The nurse labeled it as a glioma, and at this time she was unable to tell them what type of glioma or what grade it had developed into. She did tell them that the tumor is causing pressure behind Kensleigh's eyes on her optic nerve, along with some growths, and there also appears to be some fluid build-up around her brain. Makenna, Jon, Kensleigh and a bunch of close family members caravaned back to Children's Hospital on July 24. The doctors took over 140 more MRI photos of little Kens head and within ten minutes of looking over the images, multiple things were discovered. Kens has several tumors; behind her eyes, a couple in the middle of her brain, and a couple at the base of her brain stem. The biggest ones both measure approximately 1" x 1". MORE TESTS On August 1, Makenna, Jon and Kensleigh will be heading back to Children's Hospital to stay the night. Early the next morning, Kens will be put under anesthesia for an MRI of her spine, and then she will have a spinal tap performed which will test the fluid in her spine to see if and what kind of cancer there may be in her spine. They will then meet in the afternoon with their Neurosurgeon to discuss when and how the biopsy procedure will be carried out. They are hoping to have a set surgery date, soon. Kensleigh has been fast-tracked to the top of the list to get answers and begin treatment. The doctors at Children's Hospital do believe that Kens already had this cancer while she was still in utero. UPDATES 8/8/23 Kensleigh spent the afternoon in surgery at Children's Hospital. A portion of one of the tumors was removed and sent to pathology for testing (hopefully it was a large enough sample), and a drainage tube was placed in her brain because she has some fluid buildup (hydrocephalus). Tomorrow Kens will have a CT because the removal of part of the tumor caused a brain bleed and her doctor wants to make sure that the bleeding has stopped. 8/11/23 Kens was released from Children's Hospital. Her biopsy results are as follows: she has a Glioma, which is treatable, but NOT a curable cancer; it is stage 1 or 2. Her biopsy will continue to have molecular testing to determine if this is a fast-growing cancer. 8/12/23 Kens, Jon & Makenna arrived back home! Kensleigh will make a return visit on August 28th. At that time, a port will be inserted and then Kens will begin chemo once a week for 12 weeks at 4-6 hours each time. Chemo will be needed for the rest of her life; unless there's a cure for this type of cancer. 8/28/23 Today, Kens had a follow-up appointment at Children’s in Milwaukee. Her Oncologist said the glioma is still a grade 1/2. She will have her port placed next week probably Tuesday or Wednesday, and then, chemo will start the same day. Makenna & Jon will stay at the RMH while they are down there. Chemo will be for a year and a half; once every week until the Dr decides to make it less frequent. As you can see, Miss Kensleigh got her glasses and is just as happy as ever! 8/29/23 Miss Kensleigh will start her chemo on Wednesday, September 6th. She will check into Children’s Hospital at 7:30 AM for her port insert, and after that is done she will start her first chemo session. It will be between 1-3 hours long, and then the family will stay overnight at the RMH as a precaution. Makenna was told that during Kensleigh’s chemo there cannot be anyone around Kensleigh who is sick. No cough, no sore throat, no sneezing, NOTHING. If you find yourself around people who are sick or have ANY illness whatsoever, please do not ask to see Kensleigh. Please be very mindful of her and her family while she has her treatments and remains immunocompromised. 9/6/23 Today was Kensleigh’s first day of chemo. The surgery team did not feel comfortable placing the port because Kensleigh had COVID a few weeks ago and they were worried about blood clots. They decided to place a PICC line in her arm for 3 months; a port will be placed after the 3 months is up. As of right now (8:21 PM), everyone is at RMH and Kens is doing well. 9/26/23 Today is chemo round #4 of 12. Once this is complete, an MRI will be done, then she’ll start her new regimen sometime in November. Please continue to keep Kensleigh in your prayers. They are staying overnight, because Kensleigh needs additional fluids because of the frequent vomiting the past few days. An ultrasound was done on her right arm to see if a clot had developed because there was noticeable discomfort and redness in her arm. The ultrasound came back showing a blood clot even though blood was flowing. An IV was placed and a new picc line will be placed on Tuesday. Personally, I’m questioning the new picc line considering a clot was found but praying for the dang port to be placed ASAP. 9/27/23 Kensleigh is currently undergoing her port surgery. It was decided yesterday that the port was going to be placed today. She still has a blood clot in her subclavian and axillary vein. She will now need Lovenox injections twice a day for six weeks. Her appetite is non-existent, so that’s a huge concern as well. 9/29/23 Miss Kensleigh now has a feeding tube! She’ll start receiving her formula through the tube and once again begin getting the nutrition that she needs. She will also be able to be fed via bottle if she chooses to tolerate. It sucks because the chemo drugs give her a metallic taste in her mouth, and that has led to her newly acquired food aversions. Poor thing!!! Baby steps to getting her back up to 40+ ounces!!! Chemo tomorrow or Sunday and then hopefully homeward bound! 10/1/23 After spending a week at Children’s Hospital, Kensleigh, Makenna and Jon are finally home. Tube feeding, Lovenox injections, and tons of love for this angel. 10/21/23 Hello everyone! It’s been a while since an update, but Kensleigh is doing well. She heads in for her 8th round of chemo on October 23rd. Two more to go after this one…then she will have a new routine. She will also have an MRI in November on her brain and spine to see how the chemo has been working. An ultrasound will also be done to see how her blood clot is doing and if it has gone away. 11/17/23 Miss Kensleigh is done with her induction phase which consisted of 10 weeks of chemotherapy!!! If you remember, she had a blood clot about six weeks ago and an ultrasound was done today to see how that looks. It came back much smaller (90% smaller). She will have to remain on Lovenox for another six weeks. As far as her chemotherapy, she is off for two weeks, then goes for four weeks of treatments. That pattern will last for a year. November 20th will be the next MRI of her brain and spine to see how the induction phase went. Continued prayers are greatly appreciated. We love you all and thank you!!! PS…we have a creeper…she’s sooooo close to crawling!!! 11/21/23 We have amazing news! The Scan on the left is from 11.20.2024, while the scan on the right is from 7.20.2024. Measurements of the biggest tumor in July we’re 29x24x8 mm Measurements of the biggest tumor from yesterday are 26 x 14 x 3 mm. All of her tumors are decreasing and the spinal tumors are almost non-existent. Kensleigh will begin a new schedule on November 27th….four weeks on and two weeks off. She will have MRIs every three months. Please continue to pray for her as she continues to Kick Cancer's Keister!!! 12/1/23 Miss Kensleigh started her next regimen of four on/two off this week, and will continue this schedule through June 2024. There will also be two MRIs during this time to see the progress. "All we can do is hope and pray that everything is going to be okay. It sucks as a parent to have to sit back and not be able to do anything to help. She's in God's hands and the hospital's hands. We pray for the best outcome please pray for her."...Makenna This is going to be a long journey for the family, and all funds raised will go to help alleviate the burden of medical bills, hotel stays, travel, medicine and treatments. If you are unable to make a monetary donation PLEASE keep this sweet little girl and her family in your thoughts and prayers. #pray4kensleigh
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