The Mack Family
I'm Stephanie, one of Lincoln's aunts and Ashleigh's sister. I will be running this GoFundMe campaign for the Mack Family. All donations are deposited straight to Ashleigh and Ian Mack.
After 10 days of what the Mack Family was told was a virus, Ashleigh and Ian took 4 month old Lincoln to the ER on 7/2/16 when his eye and temple started to swell. Yesterday they thought he had a bleed on his brain. After more imaging, the prognosis wasn't clear, nor was it reassuring. As of today, they have been told it could be one of three things: Leukemia, Neuroblastoma, or Langerhan's Cell Histiocytosis. He has been admitted to the University of Iowa Pediatric Intensive Care Unit (PICU) and they will remain there indefinitely. Tonight (7/3/16) they will do a spinal tap for further testing and diagnosis.
This will be updated with the prognosis as soon as it is more clear. Unfortunately, it's a holiday weekend, so the UIHC is short staffed.
This money will be used for several things: unexpected expenses related to the hospital stay (parking - minimum $58/week, and food), and other related medical bills. It will also help cover the unexpected costs of childcare for their other two children, Sophia & Lucas. It will help with any time off of work they need to take in order to care for Lincoln in the hospital so he doesn't have to be there alone.
Ashleigh and Ian are eternally grateful for any donation, small or large. If you would like to donate directly, you can email me (firstname.lastname@example.org) for the address of where to send a personal check to.
Please make all checks out to Ashleigh or Ian Mack.
We are also asking friends, family, and supporters to donate food to them and deliver at hospital or to their home once they are able to leave. Please sign up to donate here:
We are also able to pick up meals and deliver to them if you aren't able to deliver yourself. Any food, even snacks and drinks are encouraged. They have refrigerators and microwaves at the hospital.
Stephanie's email if you have any questions, concerns, or donations: email@example.com
Thank you for keeping them in your thoughts and prayers. We must come together and help this family!
Visitation will be held from 4-7 PM, Thursday, November 3, 2016 at Lensing Funeral & Cremation Service, Iowa City.
A Celebration of Life will be held at 12 PM, Friday, November 4, 2016 at the funeral home.
Burial will follow in Oakland Cemetery, Iowa City.
In lieu of flowers, the family prefers memorials to their go fund me account: The Mack Family.
Lincoln was born February 25, 2016 in Iowa City, the son of Ian and Ashleigh (Pewitt) Mack. Everyone said Lincoln’s smile could light up a room. A grin always glimmered on his face! Even with the short time he had on this earth he touched so many people. You could see the old soul peering out of his young eyes. Lincoln enjoyed watching the Mickey Mouse Club House and playing with his crinkle books. He especially enjoyed breast feeding, which was his special time with his mom.
Lincoln is survived by his parents; two siblings, Sophia Pewitt (7), and Lucas Mack (2); paternal Grandparents, Jerry (Sandy) Mack of Muncie, IN, and Hillary Mack, of Iowa City; maternal Grandparents, Howard (Kasey) Pewitt and Sandy (Doug) Shaffer, all of Iowa City; twelve Aunts and Uncles, Marshall (Jordan) Mack, Collin (Jessica) Mack, Jordan Mack, Kelly Mack, Deshawn (Joe) Butterbaugh, Rhonda Hamer, Danielle Shaffer, Felicia Smith, Amber Shaffer, Haleigh Shaffer, Stephanie (Chris) Watts, and Jeni Arbuckle; and many extended family.
We had wanted to go to St.. Jude's for a study using Ian as the donor. Well, apparently, St. Jude's is too full and it'd be a month at least before we could get in. I won't sugar coat it. He doesn't have a month without treatment.
We have decided Lincoln will receive a bone marrow transplant here, with Lucas as the donor. With Lucas as his donor, he has less intense chemo and has less chance of GVHD (Graft vs. Host Disease). We've taken our options and considered them all. This is the one we believe gives him a fair chance at beating this. Transplant will take place on November 1st. Lucas will be "harvested" in the morning and Lincoln will receive the marrow that afternoon.
The doctors have told us that Lincoln's chance of beating this is pretty impossible. He is not confident that the transplant will be successful because there is so much active disease, and he has chloromas (mass of leukemia cells behind the eyes) that aren't responding to chemo. This is beyond devastating news. We knew going into this that his survival rate was pretty much non existent. We have never given up hope and we don't plan to stop now. It's just becoming more real that this is horrible. It's terrifying. It's heartbreaking. But Ian and I have made a choice that we believe to be best for our son. A choice we will live with for the rest of our lives, no one else is aware of all the challenges we've faced and seen these past 3 months. As open as I am about his situation, there are some details I chose to not disclose, so no one can say "I think you should do this" or "if it were me, I'd do this". This is something you can't say you know what you'd do, because until you're in our shoes, faced with a decision like this, you can only speculate. I know many people who are so supportive, and the only reason I point this out is because I don't want to hear anyone making us feel like we're making the wrong choice. This is our decision as his parents.
We've been trying to keep his pain under control, which has been challenging. Yesterday seemed better, but today has been harder. We decreased the continuous drip yesterday but we had to increase it today. Tonight has been hard as it seems to be worse than ever. He hasn't eaten anything by mouth in 3 days. He won't nurse and he won't even take a binky anymore. He pulled out his NG tube tonight so that was one more thing to add to his discomfort level. He's now getting eyes drops and ointment for his eyes since he can barely blink sometimes, and his one eye won't close since it's so big.
So that's the gist of it. Yesterday I didn't even want to talk on the phone. To anyone. I wasn't returning texts. I went to the garden area outside, sat on a bench, and ugly cried. I am trying to cope with another piece being broken off of my heart. It's becoming more of a reality that my days with my baby are limited. The uncertainty is becoming more real, and a whole lot scarier.
We have Lincoln's MRI, bone marrow biopsy, and LP scheduled for Monday morning (9/12) at 8 am. I'm so nervous for those results already I could puke. This will tell us how much cancer he has in his body, and how much the lesions have changed. I hate waiting. But, it will be here before we know it I suppose.
He has been pretty restless at night now all of a sudden. He won't let me lay him down without screaming. He seems like he's hurting or uncomfortable but nothing seems to help. Tylenol didn't help him at all last night, and we tried morphine to see if that would help. It seemed to calm and relax him. I hope that tonight is better.
He has been losing weight. He is now 5.8 kilos, which is about 12.8 pounds. we made almost all month without a feeding plan, but they aren't comfortable with his downward trend. He's been off fluids for several days now. His weigh had been decreasing since about the day he was taken off of them. So he is now being fed through his NG tube (in his nose) 3 oz of breastmilk every 3 hours, 6x a day. We will blow through my stash pretty quick at that rate, so the dietician is allowing us to use donor milk. I worry about him changing to formula because I'm afraid it won't be as gentle on his tummy. If this doesn't work, they will start to fortify breastmilk with calories (a powdered formula). Hopefully he gains weight on his own with this. I hope he tolerates it well and doesn't throw up more.
We got the ok to not go home for 2 days between chemo cycles. If it was for a week or 2, I'd be all for it. But his cancer can't be trusted that long as we found out last time. As much as I love and miss home, I am fortunate to be local so I get to see my husband every day, and my kids when they're not sick! I get to run home if I need to, and can run errands in town. I'm guessing his chemo block will start up next week once counts come up some. Speaking of counts, his ANC is up to 190 today! That means we can leave our double doors! We can't go outside, which is fine, but we can roam the hospital finally! I don't know how much we will be out of the unit though, hospitals have lots of germs and I'm just glad he can't be touching everything!
The doctor gave us the results from yesterday. Unfortunately, Lincoln did not go into remission from the chemo. At the time of admission, he had 83% cancer in the marrow. Now, he is at 26%. In order to have the transplant, he needed to be at less than 5%. So, good news is that he responded pretty well, but not enough. This adds another chemo admission to our plan.
The larger lesion in his skull has decreased in size. This is great. It isn't gone but decreased. There were new flashes that showed up in the MRI but she didn't seem concerned about them.
Good news though! WE ARE GOING HOME!! TODAY!! We're basically packed up and teaching is done! We will be home for a few days, not a week. We are scheduled to be back Tuesday. He will then have a stronger round of chemo.
This is not exactly what we wanted to hear, but, we know he's responding to the chemo and we're moving in the right direction. I'm excited to be home for a few days and to spend time with my family, watch our big tv, and to sleep in my own bed!
Sorry to hear about this praying and sending positive vibes! Get a hold of the social workers in the hospital they can help out with parking passes which was a big thing when my son was in the NICU.... I hope that helps a little bit I hope that helps a little bit....
I read your latest update and couldn't help but ugly cry with you but for obviously different perspectives. As I sit here playing with my 8 month old boy I cry because YOU should be experiencing thathe same thing. I know you know this and I don't say it to rub it in but I say it to let you know that my heart breaks for you and so many others that should be laughing, playing and having fun instead of being in a hospital in pain. I'm so very sorry, I'd I could take it away, I would so would so many others. All I can offer you is my continued support, thoughts a day prayerso for you all. I hope he can rest easy and the pain decreases. Much love from a stranger! Xoxo
Lincoln and your family are such an example of strength, courage and inspiration. I'm so sorry for the loss of your sweet baby boy!
You do what you feel you need to do & how you need to do it for your son. I have not been exactly in your shoes but close. I am behind you 100% and wish you all the best.