For those who cannot attend Conner’s Celebration of Life service due to flooding, please use the following URL to see a live stream of the service.
Click the link here using the password “conner”.
Conner’s Celebration of Life service will take place on Wednesday evening from 6:00 to 7:00PM at Petra Christian Fellowship, 565 Airport Road, New Holland, PA 17557. All friends, family, and supporters are welcome to attend. A viewing will take place directly thereafter.
Conner went on to be with the Lord this morning, with Sheryl and I at his bedside as he took his final breath. We are thankful that he is now free from the cancer and encephalitis and can run and play and laugh again in heaven.
Conner, I miss you and love you. You are, and will always be, my firstborn child. You taught me what it was to be a father, to be a fighter, and to never give up. You changed my life. If I knew this day would come, that we would endure this suffering and separation, I would still gladly be your father all over again. You were worth every tear I’ve cried for you along the way. I love you.
I didn’t know what to expect when we moved to Hospice early last week. Just like every leg in this journey, this step brought us to a new place, with new people and adjustments to our daily routine. I’ve come to appreciate facilities like this, with doctors and nurses who care for people in their final days. They perform gentle mercies to all they serve.
Conner continues to rest peacefully since our arrival early last week. He still has days where he spends many hours awake, which we fill with reading books, watching his favorite movies, and snuggling, but he often sleeps most of the day. We spend time in a rocking chair, which the staff here delivered upon our request. Even though Conner is very sick and has been for several months, he still responds to touch and is calm when we hold him.
Out time here is bittersweet. We are thankful for the extra time we have with our little boy, to hold him and love him for another day. We are proud of how he fought his disease and how he’s inspired others. It’s hard, though, knowing we have very little time left together. It feels surreal. Sometimes the whole proposition of Hospice seems absurd; shouldn’t Conner have just started kindergarten yesterday with his cousin at Kissel Hill elementary? Shouldn’t we be taking smiling pictures of him wearing an oversized backpack and posting them on FaceBook along with our peers? We’re not really waiting for him to pass away, are we? It’s not really over, is it?
…but, it is over.
I don’t have the words to describe the anguish in our hearts. It’s exceedingly difficult to let go of Conner when everywhere we look simple objects spark memories of the boy he used to be. Each book, movie, or toy reminds us life together. Conversations that Sheryl and I have with each other remind us of his silly sayings and the laughter that made us smile. Even the food we eat brings back memories of meal times we shared together. How do you let go, when you’re constantly reminded of the past? We look at those memories and smile, but it breaks our hearts to know there will be no new memories of us playing with our eldest child. Those days are gone forever.
Even as we struggle with heavy hearts, we are happy that he’ll soon be free from his broken body and this equally broken world. As Christians, we believe in heaven and a life after this, and that he will be running and playing with his great grandfather, chasing butterflies, and talking with Jesus. That does make us smile for him, even as we do so through tears. My only hope is that the same God, who’s company Conner will soon share, will also have mercy on us and heal our broken hearts as we await our turn to go home.
It is difficult to hear a doctor say your child is going to die from his leukemia, and a much harder thing to accept that there is nothing else you can do to save them. It is hard to accept that the cancer will win after the intense suffering Conner, Sheryl, Matthew, and I experienced over the last 5 months. It’s hard to accept that our family of four will soon be a family of three. I weep for my son and my family when I look back on all that suffering, especially when it feels like we suffered for nothing.
Conner’s blood work indicated that the last cycle of treatment failed to push down the leukemia, and his attending physician explained to us that this was the last curative therapy we could try. Any other drugs would only buy Conner time. On top of this the MRI results from two weeks ago showed continued assault to his brain, an injury the neurologists did not believe he could recover from with only a few weeks on rehab. So, Sheryl and I found ourselves backed into a corner, knowing there was no escape. We decided the best thing for Conner was to stop the chemo, stop the medicines and tests and move him to hospice, where they can keep him comfortable and pain free until the end. This is the best, most merciful thing we can do for our little five-year-old boy. He’s done everything we’ve asked of him, and now it’s time for him to rest. After five months, we finally find ourselves letting go.
Since Conner did well with his re-induction therapy this weekend and is showing no signs of infection, he is scheduled for transfer over to the rehabilitation hospital tomorrow morning. We are anxious to get him back into the rigorous schedule of daily PT, OT, and speech therapy with the hopes that he continues to the progress he started last week. Conner started reliably tracking on Thursday and Friday while seated in a supported upright position, and on Sunday, with a physical therapist steadying him as he sat on the side of his bed, we called his name and were amazed when he turned his head toward both Sheryl and me. With all the exciting progress conner is making, we are convinced that the little boy that was taken from us in March still fighting from within his own body, trying to break though his encephalitis to regain meaningful control again. Time is of the essence now, and he is working hard along with the therapists to reach his full potential.
As I write this, Conner is recovering from his third MRI. Neurologist hope this image study will shed some light on his condition, and although they admit that that the pictures alone will not enable them to give us a definitive prognosis for his brain injury, the new data may give them a more pieces to the puzzle. We expect to hear their findings tomorrow.
Where to begin? Let us start with the bad and work toward the good. After only three full days in rehab, Conner was transferred to the acute care hospital at CHOP on Thursday to deal with his third relapse of T-Cell leukemia. Although we knew this would happen at some point, the suddenness of the cancer’s return caught us off guard and left us feeling angry and frustrated. We started the week with high hopes that he would have several weeks of intense physical, occupational, and speech therapy, but those plans remain on hold until it’s safe for him to return.
Within hours of hearing about Conner’s relapse, we were informed by CHOP neurologists that the MRI scans of Conner’s brain from April and June showed potentially more damage than the physicians at Hershey had reported. The doctors here in Philadelphia plan to scan his brain on Monday to see if there are any changes. The doctors admitted that they need to do much more work before making any determinations, but felt it necessary to inform us of their concern. As you could imagine Thursday was a pretty bad day for us, but on the midst of the heartbreak Conner continued to amaze us.
CHOP is somewhat unique among Pennsylvania children’s hospitals because of it’s connected rehabilitation center, which offers much more flexibility to patients like Conner and caused us to transfer his care to this facility. The therapists are top notch, and by Thursday we started noticing some positive changes in Conner’s abilities. Most notably, he was able to consistently track objects for the first time since his brain injury back in March! We were ecstatic to see him do this multiple times. After his transfer to the acute care hospital on Friday, he continued to follow objects several times, even after his re-induction onto intense chemotherapy.
Until now the strategy of the oncologists has been to give Conner moderate doses of chemo to keep his cancer in check while giving is brain time to heal. This is particularly difficult to achieve because the two issues that our son is dealing with has two opposite strategies to fight: cancer requires speed to knock the disease down and his brain injury needs time and therapy to heal. Fighting this war on two fronts allowed his cancer to come back, but now that he’s had almost 5 months to heal doctors now have the ability to give him more potent drugs that can get him into a full, hopefully long-lasting remission. Conner received the first dose of drugs Friday morning, and in under 24 hours we saw his blood counts fall. The physicians were very encouraged that the drugs worked so quickly, and we hope that as the drugs saturate his system, the majority of the cancer cells will be overwhelmed and destroyed.
So where does this week leave us? No single word describes it. We’re anxious, encouraged and fearful, while filled with hope and terror, all at the same time. We’re exhausted, physically, emotionally, and spiritually. We are worn, looking for that hidden oasis in the desert that will give us peace and rest, both of which are hard to come by these days. Most of all, we want this 18 month nightmare to end. We want to see Conner brought to wholeness, for our family to be permanently reunited.
I ask for you to continue to pray, even though my own heart is often filled with doubt. We’re hurt that God has chosen not to move as we continue in this most desperate of all struggles, but ask that you continue to carry us while we can’t carry on ourselves. Thank-you to those who cry out on our behalf.
After a brief time off, Conner will continue his fight against leukemia tomorrow as he gets admitted to the pediatric rehabilitation center at the Children’s Hospital of Philadelphia. We are excited about the new ways that an urban medical center like CHOP can help our son prepare for a bone marrow transplant.
Rehab at Hershey Medical Center was difficult for Conner, and stressful for us. We often felt overwhelmed trying to manage the balance between caring for Conner as a parent, while also maintaining primary responsibility for physical and occupational therapy. In the beginning of his illness, we had clearly-defined roles; mommy and daddy provided comfort and entertainment while he endured the incessant poking and prodding at the hands of doctors and nurses. Back then we never had to be concerned if he felt safe around us. Since his downward spiral in March, Sheryl and I took an active role in rehabilitating our child. We had to ensure he went through his daily stretching exercises and that his feet spent enough time in the painful shoes that kept his tendons limber. The exercises were incredibly painful for him, and my heart broke every time I heard him scream as struggled against the braces that I forced him to wear. The exercises were necessary, of course, and we knew that he needed to do them, but I never got used to his tears of pain.
After months of struggling to rehabilitate our son, we finally made the transfer to CHOP. At this new hospital, Conner will receive several hours of rehab a day from qualified therapists under the watchful eye of physicians who specialize in rehab. This transition give him the safest environment to get better while allowing us to focus on being his safe haven. We’re very excited for this change, and are anxious to see him continue to make improvements. With his cancer at 5% and a moderate chemotherapy regimen already started, we anticipate that Conner will have about six weeks of time to focus on recovering from his brain injury. We’ve had people say that miracles happen in rehab, and that’s exactly what we’re looking for.
Tara Erkinger, friend of the Hollands, is organizing a fundraiser extravaganza!! Come out and support the Holland family by participating in
BINGO & RAFFLES!
This event will take place on Saturday, July 23, from 11AM to 3PM.
Smokestown Fire Co. Sta.1-11, 860 Smokestown Rd, Denver, PA
Bingo~ $8 Pre-Event Purchase (Email ConnerHollandFund@hotmail.com to obtain E ticket)
$10 At the Door
Raffle Tickets $ 3.00 a piece or $10 for 5 tickets
Prizes have been donated from Giant, Lancaster Barn Stormers, Royers Pharmacy, Conestoga Bar & Grill, Pampered Chef, Salon Arttiff, Subway, Dosie Dough, Rachel’s Cafe & Crapery, BCoco, Avon, Ephrata National Bank, Cookie Lee Jewelry, Longaberger Baskets, Vera Bradley, Sharp Shopper, Weis Markets, Ephrat Rec, and much much more.
There will be a concession stand with food, snacks, and drinks.
All proceeds will be donated to the Conner Holland Fund.
A Big Thank you to Eagle Rental for Donating the Bingo Equipment and Smokestown Fire Hall for donating the Venue.
**If you or your employer would like to donate to the event please contact Tara Erkinger at Erkinger@comcast.net or via Facebook*****
I hope you can join us!!
Conner returned home today after spending one-hundred-and-twenty days at Hershey Medical Center, just two days shy of a four-months stay. With him home we breath a sigh of relief, and are anxious for a week-long respite from hospital life. During the months spent apart, we never grew accustomed to living as a geographically-separated family, so we are happy to have us all under one roof again. It feels… right.
Many factors kept Conner in the hospital during the spring and early summer, but the doctors finally felt he was progressing enough for a short stay at home. He continues a slow but steady recovery from his neurological condition, encephalitis, which inhibits his ability to speak and move effectively. The last week was encouraging; for the first time Conner was able to sit up, unaided, and hold his head up for periods of time. On Monday, a physical therapist gave him a specific directive which he followed twice. This was a huge accomplishment! One of the requirements for Conner to qualify for a bone marrow transplant transplant include following directions, so we hope that as he gains better control of his muscles he will have the ability to communicate, even if only by nodding his head.
According to one of the attending oncologists at Hershey Med, Conner has done a remarkable job in keeping his cancer down. Many children who relapse have difficulties getting into remission a second time, but our little fighter has beat it down three separate times. His last round of chemo was very potent and we hope a biopsy next week will show the cancer reduced further.
On Friday we have an appointment with a new oncologist at the Children’s Hospital of Philadelphia, otherwise known as CHOP. Hershey has managed Conner’s care well over the last few months, but as his condition became more complicated Sheryl and I felt the need to talk one-on-one with a physician at another healthcare organization. CHOP is rated number two in the nation for children’s hospitals, and we hope to get confirmation that our child’s care has been in line with their practices. We are also considering moving to CHOP for the remainder of Conner’s illness, just to ensure he’s getting the best care imaginable.
I want to again thank each and every one of you who have supported us since March 8th. This season quickly become the most challenging, heartbreaking time of our lives, and as we continue to walk the path set before use we remain thankful for each and every one of you who continue to lend your support. You are dear to us. We are humbled the many people who continue to check in on us from time to time. Please know that because of our busy lives many of the calls we simply cannot answer, but that doesn’t mean we don’t appreciate them. Thanks to all those who send thoughtful letters and cards. In this digital age we live in, I know it’s very easy to email or post something on Facebook, but there is something about receiving a letter that is really special, especially while we are stuck at the hospital. Those letters and cards are precious to us.
Thank-you to those who continue to help us with yard work and cleaning, for buying groceries and gas cards. Thanks for donating to one of the many events that people have held in our honor. Thank-you for lifting us up in prayer.