March 15, 2017
Acute Myeloid Leukemia. That is the preliminary diagnosis. Rare, but not so rare that there isn’t a body of research on it. The agenda tonight consists of a full body CT, as well as a PET scan. Since it is a blood cancer that strangely manifested itself as this tumor, they have to check all of her. She will get a bone marrow test, spinal tap, and another biopsy of the tumor at her eye. She will also receive her first shot of chemo through the spinal tap.The treatment for this will be very aggressive, involving heavy chemo and long hospital stays. Mckenna takes it in stride, she’s perky, and good-natured despite all the poking and prodding. She is a bit of a worrier, so we are trying to keep things “digestible” for her. We appreciate the good thoughts and prayers, more than you could ever know.
April 22, 2017
At 9 p.m. last night Mckenna decided it was time. After pulling out several tufts of hair (all while giggling and throwing them in the air as if it was a handful of fresh snow) she shaved her own head. I was not at all surprised at her bravery and fearlessness as she snatched the clippers from my hand. She then spent the next 30 minutes trying on her many new hats and scarves. As it turns out she rocks the bald look.
May 2, 2017
Mckenna gets to come home tomorrow! She is feeling good and will be home for 6 days before she goes back in for her second round of chemo. That seems pretty short but after being in a hospital for a month...I'm sure that she will take anything she can get!!
June 20, 2017
We are knee deep in radiation treatments at the moment. They are a struggle, but who really wants their head and shoulders bolted to a table so tightly that the mask leaves waffle-prints all over your face? She has treatments every day, M-F, until July, then we go inpatient again for her bone marrow transplant. July 24, 2017 Mckenna had a great couple of weeks at home!! Next step.... Bone Marrow Transplant, August 5th. After the heartbreak of losing our first donor, we have a new donor and everything is set!!! Mckenna goes back into Hershey Children’s this Wednesday to start 10 days of chemo in preparation for the transplant. After the transplant, the first 100 days are the most crucial. She will spend at least the first 30 days in isolation. When her counts are back up to safe levels she can be released from the hospital but must remain close to the hospital. Luckily Four Diamonds (in their infinite awesomeness) provides us with a place to stay for those first 100 days. We can see the finish line, it’s so close. Just one more, rather large, mountain to climb.
August 3, 2017
Transplant day. Oh transplant day. So many mixed feelings. Fear, hope, fear and hope, a side of fear. It’s a low-key process with very high stakes. It pretty much goes like a blood transfusion. Huge bag of red goo, vitals every 15 minutes, blood pressure goes up, meds are given. Has to use a bedside potty since she’s hooked up like the world’s most intricate puppet. Not only is this kid poked and prodded, forcing down meds, and essentially never left alone... but now humiliation at the bedside potty and a room full of people. The first hour was pretty uneventful. The second hour cracked us over the head. There was a lot of screaming, dropping pulse. Migraine. Nausea and diarrhea. Tears and more screaming. A little girl begging to puke to so she might feel better. Dosed up with meds, then she napped away the trauma. She’s good now. We are having an illegal snuggle and watching Lego Batman. He’s just so macho.
August 16, 2017
We got some AWESOME news today!!!! Tomorrow will be 2 weeks since the bone marrow transplant and they've been a really rough two weeks on Mckenna. Yesterday they got a low but recordable white blood cell count of 190. AND TODAY.... it's at 450!!!!!!!! The Doctors anticipate a recordable ANC as early as tomorrow which means she has reached engraftment! They are shocked at how soon this has occurred!!!! That's our little over achiever!!!!
September 13, 2017
Today this amazing rockstar showed her true strength and courage yet again. Mckenna had to have an NG tube (feeding tube from nose to stomach) placed to aid with the amount of meds required upon her discharge. There is a decent chance that if all goes well she could spend her first weekend out of the hospital in over 40 days. She is more than ready, her family too, which haven't seen her throughout her latest stay here. She has managed to conquer the ever changing hurdles that are thrown at her daily. I am in complete and total awe at how this frail yet gorgeous little girl has handled what most anyone would consider a hellacious endeavor. There are many things that this little angel has taught me since March, lessons I will NEVER forget.
October 17, 2017
I’m going to be real with you. Things are not going great. We had a nice respite from the hospital, but things have gone downhill. Mckenna’s graft is failing. She’s got what is essentially a secondary cancer, PTLD, as well as a virus known as a graft-killer. Both of which are going on simultaneously at the worst possible timing in her transplant recovery. Treat one, make the other one worse. And vice-versa. Unfortunately, the one treatment that could really get her through this can’t happen until early to mid-November. Until then, we remain in the hospital. She has a platelet count of zero an hour after she gets transfusions, so they have stopped giving them for now until we can get closer, HLA-typed matches. We just need to keep her going until November. She’s managing high blood pressure, high stroke risk, high aneurysm risk, and extra high bleeding risk. Piece of cake, right?
October 22, 2017
Thank you all for the Birthday Cards!!! Mckenna has received almost 300 birthday cards so far!!! Friends, friends of friends, teachers and their entire classroom, and even complete strangers who took the time just to show they cared. PEOPLE ARE SO AMAZING! It is so heartwarming to see just how much love is out there. We are working our way slowly through the stack to show and read to her each and every card!! (They all have to be sterilized before going in her room so it's a slow process.) We love you all!!!!!
October 24, 2017
An exchange that sums up Mckenna: She had her 2nd bloodpharesis today. It’s an intimidating process when you’re 8 (sucking out all her blood!), an uncomfortable and dangerous femoral catheter, a lot of pokes and prods, constant alarms, and an hour of pain for her. Add to that her blood phobia and anxiety about being touched anymore. Sound fun? Mckenna screams in pain, they stop the machine... “Just turn the stupid thing on and let’s get this over with. I’ll just endure it.”
November 3, 2017
Today the long awaited stem cells arrived, we are so very grateful. Even better news is that Mckenna is in good condition to receive them. In the past 24 hours she began to hang on to platelets for the first time in awhile. As of 30 minutes ago, she received the long awaited stem cells. Now it’s a waiting game as the HMC team monitors her body’s response. Please keep the prayers and thoughts coming, she’s not out of the woods yet. However with enough positive energy she stands a chance of having a Thanksgiving dinner somewhere other than here.
November 30, 2017
Despite the news that she’ll be spending Christmas and likely New Years in here, (after spending Halloween and her birthday in the klink.) Mckenna is still full of spunk. I’ve said it before and I will say it again, I want to be like her when I grow up. Everyday this beautiful little girl reminds me to not sweat the little stuff and dig deeper than the day before. Tomorrow she will receive more T cells in the hopes of getting this marrow moving and shaking.
December 14, 2017
Bone marrow biopsy today. If it is still empty, she will receive a larger donor lymphocyte injection. She’s been having fevers every night since the first injection, so they are hoping things are revving up, just not quite catching. Once she gets this injection, they will wait 2-3 weeks and re-biopsy. If it still isn’t working, then on to transplant number 2. It seems like all we do is wait. Waiting and waiting. But if it means I get to keep her, I’ll keep waiting forever.
January 29, 2018
Bacterial infection. Blood clot. Transplant moved to February 13. Had to get her central line removed due to infection, can’t get it replaced until the infection is cleared. Which means needle jabs every single day for blood work and cultures. Her little hands are full of holes. Every day brings some new mountain, bear trap, tar pit, or avalanche. Every day she overcomes. Currently, she’s giggling while I pretend to not see the pop tart she’s sneaking.
February 9, 2018
Passing the time, something the Mckenna is really good at. Slowly approaching the one year mark Mckenna is definitely ready to get out of here. The latest transplant plan is still in place, She is in good shape to move forward with her procedures. On Monday she will have her new Broviac line placed while under sedation. The MOAB of Chemotherapy will begin on Tuesday and her transplant will follow 7 days after that. Despite the less than desirable odds she is up against I have no doubt that this will work. Mckenna has endured so much in the past year and isn’t going to quit anytime soon. She’s tough, beautiful, smart, ferocious and stronger than anyone I know. There is a little note written on the wallboard above her bed that reads, “You thought you were tough, and then you met Mckenna,” that reminds me that she’s got this.
February 17, 2018
This morning at 9:30am, Mckenna started a chemo drug called Thiatepa. So harsh that she must take a thorough bath every 6 hours, and have the dressing on her central line changed, otherwise it will melt her skin off. Awesome. She didn’t enjoy the first one, but she seems to be enjoying the pampering that comes with it now. This will continue for the next 3 days. I doubt the 4am bathing will be well-received, but she always surprises us. She has impressed us at every corner with her courage and strength. Thank you to everyone for your constant support and love. Especially to you THON participants and our Club Sailing. Next year, Mckenna plans to dance her butt off with you.
March 2, 2018
One year ago today Mckenna began what has turned out to be a very long year. On March 2, 2017 Mckenna was admitted into Hershey Children’s Hospital.. None of us had any idea what was in store for us. At the time we had anticipated a few months and then we’d be out. Needless to say that plan changed by quite a bit. This journey has had an everlasting impact on her and all those who love her dearly. Instead of looking back on all the crappy stuff let’s all look back on all of the good stuff. Speaking for myself the thing that I am most grateful for, besides life, is the amount of time that I got to spend by her side. We have shared tons of laughs, gallons of tears and have become very close to one another. I have no doubt that there will be many more of those moments to be shared. As for Mckenna, even though this year has had its share of torturous procedures, she will be leaving here with rhino thick skin, a degree in nursing and her doctorate in pediatric cancer treatment. My heart and gut both tell me that her new cells have found a happy new home and are only days away from showing us a sign.
March 9, 2018
With engraftment comes a lot of pain and discomfort. In Mckenna’s case it is her stomach and joints. Her worst discomfort being her stomach, either nausea, heartburn or both. Tonight is no different but I feel like I need to share with all of you just how strong Mckenna really is. After throwing up for a few minutes she somehow musters the courage to take her nighttime meds. She takes them like a champ as she always does and lays down to go to sleep. A few minutes go by and I hear “BUCKET”. Needless to say her stomach wasn’t too happy. Instead of catching her breath or complaining in between convulsions she is proudly saying “look- no pills”. With her stomach finally settled down she crawls back under her fleece blanket shaking from the cold hospital air. Without saying anything to her I popped a heat pack and she reached out from under her covers to grab it as if we had rehearsed it 100 times. She is without a shadow of a doubt my hero.
March 20, 2018
She did it! Yesterday afternoon, she breathed real air for the first time in 7 months. She walked outside, looked at things besides 4 dreary walls, and felt the sun on her sweet face. There aren’t enough THANK-YOU’s to sum up the amount of love and support we’ve had heaped on us since this nightmare started. Thank you amazing family, supportive, wonderful friends, the kind and generous spirit of our community at large. Thank you for being there. Thank you for making us feel safe, when everything feels out of control. I’ve told Mckenna many times since this started that it is going to be the toughest, scariest road that we have to travel. But we will do it together. Some days I’ll have to drag her along, kicking and screaming, and some days she will have to get behind and give my lumpy butt a shove. But no matter what, we will always keep moving forward together.
Thank you THON, Thank you FOUR DIAMONDS, Thank you Penn State Children’s Hospital. We could never have done this without you 🙂
March 15, 2017