Griffin Greenwalt's Medical Fund
Griffin Greenwalt is a 3 year boy, full of life, full of spunk and full of funny comments!
On Friday, Feb 8, Griff's mom Jayden (my niece) rushed him to Anne Arundel Medical Center due to an extreme amount of pain that Griff was experiencing in his side. Scans revealed a growth on his kidney the size of an orange, and a devastating diagnosis of Wilms Tumor, which is a type of childhood cancer that starts in the kidneys. Griff was promptly rushed to Johns Hopkins via ambulance (which he thought was super cool!) and underwent a battery of scans, tests and blood work.
On Saturday, Feb 9, Griff underwent a 6 hour surgery to remove the tumor and his entire kidney. Our hopes for the tumor to be contained were dashed with the news that the tumor had burst and the cancer has spread to Griff's abdomen.
The near future for Griff, Jayden and Griff's father Tyler is going to be grueling. Griff will remain at JHU for the next week while he recovers from surgery. He will then begin a treatment plan of daily radiation and chemotherapy for the next 3+ months.
The emotional impact of this is staggering enough, but the economic impact will be an added level of unneeded stress and anxiety for Jayden and Tyler. Because Griff will be unable to return to daycare until he is healthy, someone will need to be with him around the clock and of course, transporting him to and from his radiation and chemotherapy treatments. This means that it's likely Jayden will be unable to return to her job FT, and with that loss of income and the medical costs of all that has happened in the last 48 hours and all that is to come, they will no doubt be under a huge financial burden.
Please help rally around these young parents and provide them support in any way you can – whether it be a financial donation or by simply adding them to your continual prayers. Thank you for your prayers and support!
It's been awhile since the last update. Griffin had to spend Easter in the hospital, luckily the staff was so sweet and had an Easter egg hunt for the children who were in the hospital that weekend. Griffin has been enjoying the warm weather and loves to play outside. Some of his treatments have been pushed back a couple weeks due to his counts being so low, so instead of being done his treatments completely in mid- September, its looking like it's going to be more towards end of September. The good news is his last scans came back clear, so this is huge! Please keep Griffin in your continued prayers. He's one tough cookie!
Because he was supposed to start his next round of chemo today, his medical team decided to delay the next round until Monday, to give him a chance to recover from this latest infection.
We will continue to update this page as we have updates. As always, thank you for continual prayers for Griffin, Jayden, Tyler and the entire family. We are simply humbled by the outpouring of support.
Griff's first week "off" was pretty quiet - we celebrated his 4th birthday (with a surprise visit from SpiderMan!), played around the house and rode around in his brand new dune buggy!
Then, a week ago Griff had an appointment to have blood drawn and to check on his counts. His hemoglobin and platelets were low, and his ANC (immune system) was at 0, the lowest it can be. Because of this, the doctors decided to give him platelets and a blood transfusion. For precautionary measures, Griff needed to take Tylenol. If he spiked a fever, they would need to admit him. They spent over an hour trying to get him to take the Tylenol - but he refused! Liquid in the syringe - nope. Prizes, stickers, candy? Nada. That kid wasn't budging! They finally ended up crushing a pill into chocolate ice cream and he ate half a bite - not a full dose but it was better than nothing! Taking medicine lately has been a struggle because he is terrified of throwing up - and refuses anything that can't be given via his port.
Anyhow, back to Friday...
As soon as he received the platelets, his energy level noticeably decreased but he seemed ok. Once the platelets finished, they switched over to the blood transfusion. He then started to get cold, so they bundled him up under a blanket. He then started shivering and running a fever. He had received about 15 minutes of blood until they had to stop transfusing as he then had a fever of 101.4. (For reference, one bag of blood takes about 2 hours to transfuse). At this point, the decision was made to admit Griffin. He continued to run a fever off and on from Friday night into Saturday.
Every time he has a fever, they need to run labs and cultures to run multiple tests to figure out what exactly his body is fighting off. They drew blood again on Saturday to check his counts. They decided to run another transfusion, because his platelets and hemoglobin were still low. Same routine as before: Tylenol to avoid fever, platelets then blood. This time, instead of Tylenol, they gave him Benadryl through his port to avoid the struggle of having to give him the meds orally. By the time they drew the blood, sent the tests and received the results, it was pretty late. The transfusion ended around 11:15pm. The night nurse took his vitals and of course, he spiked another fever of 101.4. They needed that fever to go down, so they fought Griff to take chewable Tylenol for 30 mins before he finally budged. At around 1am he started to sweat and his fever broke. The doctors have linked the fever to coming down with an illness and coincidentally being at the hospital to treat.
So, we ditched the fever, right? Well, how could that possibly be the only hurdle!!!
He is also in the beginning stage of Mucositis, otherwise known as painful mouth sores caused by Chemotherapy. The symptoms have traveled throughout his body down to his bottom. He’s been having a lot of burning pain on his butt within the last 2 weeks or so and this explains it. Definitely weird to know it’s traveled to his bum, but’s apparently it’s not uncommon. Antibiotics can’t treat this, we just need to keep him comfortable. They will prescribe Oxy to help with the pain. He still has diarrhea (also known as “SPLATS!” - Per Griffin) from radiation but we are hoping that wears off soon.
He’s been eating and drinking perfectly fine, but he’s super picky with food. His taste buds have changed along with his diet and certain smells make him super nauseous.
He is expected to remain at Johns Hopkins until Sunday, as his levels are rising, but slowly. And, since this was supposed to be his "off" week with another big round of chemo planned for next week, it is possible they push chemo another week to give his poor body a chance to regain strength.
We continue to be so grateful for all of the support given to the family. There is still a LONG road ahead so please continue to keep Griffin and the family in your prayers and continue to spread his story. Setbacks like this week add to the anxiety and worry about Griffin's health and medical bills and your prayers and support help to keep spirits high.
PS. I promise to do a better job of updating everyone on a more regular basis!
All in all, Griffin is doing well. His energy level is still pretty high however his hemoglobin is low. Hemoglobin is a protein in red blood cells that carries oxygen throughout your body. After a while of laying on his back, it gets hard for him to breathe. We’ve been watching out for chronic bleeding, easy bruising, paleness- signs of anemia. He’s a bit pale. He’ll most likely need a transfusion today. His blood type is A positive (I am looking into how to donate blood directly to him). All other counts are ok. They’ll constantly fluctuate.
He’s had pretty bad diarrhea within the last couple of days, so he’s slightly dehydrated. His poor bum is in pain so we’ve been globbing on ointment daily. It’ll take a couple of weeks for the side effects of Radiation to wear off.
We got to Johns Hopkins this morning around 10:30am and as of 5pm, he was still taking fluids to dilute his urine. By 6:30pm, his hemoglobin was just high enough to receive his first dose of the week, which consists of three drugs (per day). The Doctor told us that kids usually do OK with these 3 drugs however, we received the “every kid is different” spiel. He’ll be taking his Zofran (around the clock) and a steroid to manage his nausea.
Despite everything, he looks forward to coming here because he loves the playrooms! Every room has such a beautiful view. We look out for helicopters during the day and play “I spy” at night before bed. He constantly flirts with the nursing staff! (He’s such a ladies man.) He’s known for wearing “thuper hero” (super hero with a lisp) socks around here. He keeps telling everyone that he’s going to be Spider Man when he grows up.
Our continued thanks and appreciation for the prayers, donations, offers of help and support, and especially all those who participated in last week's Carrabba's fundraiser! We are so grateful!
#GriffMode #TeamGriff #Wilms #WilmsKids