Journal

Journal entry by Diane Oberholzer

Thank you all for praying for Zach. The endoscopy and biopsies showed that his esophagus is inflamed which is why Zach has been unable to eat. At this point we don’t know the cause yet but they did start him on a medication to coat the esophagus so that he can eat and hopefully put some weight back on! We have already seen improvement in his eating so we are hopeful for ongoing relief. 

Thank you for continuing to love and care for out family!

Have a blessed Easter weekend as we celebrate Christ’s death and resurrection so that we might have abundant and eternal life!

-Diane
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Journal entry by Diane Oberholzer

Thank You everyone for praying for Zach and myself this week. Zach had testing at CHOP on Tuesday and Wednesday. He amazes me how he tolerates the many pokes and prods without ever complaining. Even at 19 years old he still has the ability to break this momma’s heart. Watching him get yet another IV was like a flashback of so many years of medical care. We ran into one of his inpatient transplant docs who said that “transplants have a way of lingering.”  We are feeling that right now as we walk through this unexpected season. 

The initial findings of Zach’s endoscopy showed rings of inflammation around the esophagus. That would explain the pain and inability to eat. We are waiting now for the biopsy reports which will give better understanding of what’s going on and then figure out a treatment plan. We’re glad that they found something though so that he can get some relief and hopefully begin eating soon. 

Shout out of thanks to my neighbor Cindy who graciously loaned me a knee scooter. I didn’t know how badly I needed one until I used it...Crutches are exhausting!

Thanks for praying for us and I’ll keep you posted on Zach. 

-Diane

Journal entry by Diane Oberholzer

I can’t believe it’s been so long since we’ve updated! (For that I apologize as you all have been so faithful to pray and care for our family). In many ways that’s good as Zach has been chugging along seeking to return to normal life. He’s been working full time and hopefully in the coming months be cleared to start repeat vaccines.  But we have definitely had some bumps along the way. Zach is still seen at CHOP clinic at least once a month.

About 10 weeks ago, Zach’s eyes began a constant draining/tearing. Sometimes water-like and now more mucous-like. It’s annoying to say the least...he says it’s like constantly looking through tears. We’ve seen several CHOP ophthalmologists and thus far don’t have any answers. They have tried a variety of remedies and he is now on steroid drops.

Thursday was clinic day and we saw a whopping 4 specialists...oncologist, ophthalmologist, several gastroenterologists and a nutritionist! In the last 4 weeks, Zach has been having a hard time eating/getting food down and his weight reflected that. He lost 12 pounds in the last month and we all know how thin Zach was even before that! We’ve been concerned for what we saw happening and so were relieved when the docs were worried as well. Zach has said that his throat feels small and raw. He’s not been able to eat solid food well and it takes a lot of water to get it down. On Tuesday he will have an esophageal study done and on Wednesday an endoscopy. We are praying for answers and in the meantime are pushing Ensure type drinks to get his calorie count up.

Please pray with us; first for healing and for the docs to have wisdom with regards to his eyes and his weight loss. In true Zach fashion he has pushed through, but these issues take a toll. 

This week I was seen by an orthopedist and am now learning to navigate life on crutches (6wks) along with a boot (12wks). I had fallen down the stairs and broke my foot along with some torn ligaments. This injury was definitely not in the plan for this spring but I’m trying to roll with the limitations. In all honesty, I fought it pretty hard in the beginning but am getting much more accepting. I’ll take prayers as well 😊

love to all all of you and thank you for the continued prayers. God continues to faithfully carry us through this ongoing journey. 

-Diane 

Journal entry by Diane Oberholzer

MERRY CHRISTMAS! Our Savior is Born!

We just want to take this opportunity to thank all of you for your support of our family this year. We hope that you are enjoying celebrating Jesus’ birth with family and friends.
During the Christmas season Jesus is often referred to as Immanuel ~ God with us. We experienced God’s presence so much over the course of this year and we are grateful. It is our prayer for each of you to know and experience ‘God with YOU’ even more in the coming year.

We are looking forward to a healthy 2019 and excited to see what God has in store for each of us.

Love,
-The O’s

Journal entry by Diane Oberholzer

Thank you to everyone who has continued to pray for Zach and check in on our family. I apologize that it has been so long since we’ve posted an update. The journey is real and so are all the ups and downs of a myriad of emotions over the months. Please know that we are so grateful for your prayers and support!

Zach has been doing great and is enjoying being back to work three days a week. Seeing him head to work continues to blow my mind as I remember how far he’s come over the months. He plans to go full time next week and we pray his energy level allows him to keep up that kind of schedule.
We were at CHOP clinic today and his doctor told him that their goal is to get him back to his life and doing things he enjoys...for Zach, that’s working on cars so we are thankful for his job! Zach’s tenacity to get back to life and fight through fatigue and find a new normal is amazing!

We are so grateful for the very few bumps he has had in recovery. For all you number people (😉) they are still not where his docs want them so we wait and as a result stay on medications. Neutrophil count was 1320, WBC 2.6 and his platelets are being “pokey” in their recovery. Again, at this point, they are not overly concerned as the last engraftment study was good and next visit they will do more testing. We continue to avoid sickness, large crowds and small spaces with lots of people. 😀

After being back at CHOP today, I’m feeling sentimental, melancholy and grateful all at once. Medical stuff often happens suddenly. Most kids in the hospital didn’t plan to be there. It just happens. So if you’re a parent and have your kids nearby, hold them extra tight tonight and thank God for the gift they are.

I’m reminded again this Christmas season of just how precious life is. Especially the life of Christ. Come to earth in the form of a baby, born to die, that we might live in right standing with our Father God. That’s the miracle of Christmas! 

Love to all,
-Diane

Journal entry by Diane Oberholzer

It’s been so long since we’ve updated but as they always say “boring is good”. 😊
Tomorrow marks 4 months post transplant and we are so grateful for how well Zach is recovering! Other than getting stir crazy and sometimes not sleeping well he’s doing so good. His hair is even been growing back!

At clinic today they drew 15(!!) vials of blood for a large variety of tests. Four months marks an immune system test as well as more engraftment studies. Zach’s counts have pretty much stayed the same over the last months but the doctors continue to say give it more time...WBC 2.1 & ANC 1510. Platelets are still low so they adjusted his meds again.

Overall it was a great day for Zach. His doctors agreed that he could go back to work in a garage as long as he has minimal interaction with others. Late today he had an interview at a garage and will start working there several days a week! This job is a huge answer to prayer and will allow him to slowly get back to work and build up strength. Having a routine and work to look forward will be so good for Zach. Now we pray that he stays healthy while venturing out more.  Thank you for your continued prayers and friendship. 

-Diane 

Journal entry by Diane Oberholzer

Hi everyone! I promised my mom I’d write an update on day 100 but that obviously didn’t happen so here we are on day 101. Everything has been progressing as usual and this week was the first week that I have not had to go to CHOP for an appointment which is awesome news! I even emailed my doctor asking if they missed me 😝 Since the last update my GVHD rash has improved greatly and is basically gone. I have been doing much better with my strength and energy and am able to go out and mow on Friday’s for the day. We also went rock climbing and repelling over the weekend which was a lot of fun! I was also able to go to my high schools home coming and see a lot of friends and teachers from school which was very nice to reconnect with them. With the restrictions lifted I am able to do a lot more and next week the doctors said I can go the beach so I will be taking my girlfriend to the beach with her dogs so it will be nice to spend the day away from the house and with her 😄 thank you all so much for all of your prayers and I love reading the comments that you all leave.
-Zach 

Journal entry by Diane Oberholzer

It’s hard to believe, but today marks the 3 months post-transplant milestone! As a result some precautions have been lifted...no more masks for healthy visitors!! 

Our kids grew up with me playing one song over & over on the piano...My Tribute. “To God be the glory, great things He has done”. Today on this milestone day that is our heart cry. (I may or may not have played it a few times this evening!😉)

We just got word of a BMT friend re-admitted today and again we are grateful for Zach’s health and recovery that have allowed him to remain at home. Please continue to pray for our fellow BMT’ers. 

Thank you for praying for Zach’s GVHD rash. His itch has been improving 👍. We will see what they say at the clinic visit on Thursday. 

-Diane

Journal entry by Diane Oberholzer

For the last several days Zach has slowly been getting itchier and developing a sandpaper-like rash. He’s also had a few other odd isolated anomalies along with it. Today at clinic we got some answers...he is experiencing skin GVHD (graph vs host disease) symptoms. The doctors are treating him first with topical steroids to control the spread of the rash and will follow up with oral steroids if it continues. His blood counts also dropped significantly again...ANC 1300/ WBC 2. They think some of this could be signs of his body fighting a viral infection. They are adjusting some of his meds and will re-check everything again next week. Again, all of the above can be normal over the course of recovery and we’re grateful that his symptoms aren’t worse. Trying to take deep breaths and trust the process, the doctors but most of all God. Thanks for praying!

-Diane

Journal entry by Diane Oberholzer

Thank you all so much for the prayers! Zach is officially tube-free! Taking out the central line was much quicker than putting it in. He came out of anesthesia easily and has had minimal pain at the site. I think for Zach, it felt like just another day at the hospital. I’ve always been amazed at how easily he rolls with all the pokes and prods he’s gotten over the years...God’s grace on his life.
Never in all of his 19 years have I watched him get rolled into the operating room and thought  “this could be his last time under general anesthesia for a very long time”. But I thought that yesterday and it was emotional to realize that truth. We’ve come a long way and are so thankful for God’s continued faithfulness to see us through each step of this journey. 

Thanks for asking for blood count updates. Some of his counts have been dropping a little these last few weeks but they aren’t worried at this point. His ANC was 1900 and WBC 2.7. Zach’s docs are overall happy with how he’s doing, although he did lose a couple pounds and so he needs to focus on eating this week. We’re just so glad that he’s stayed healthy and out of the hospital!

And so the journey continues...

love to all,
-Diane 

Journal entry by Diane Oberholzer

Last week we spent four days at CHOP for tests on lung capacity, spleen size, heart health and everything in between. We met with nutritionists, donor specialists, nurses, and doctors. Rachel came in from California for a few days as well and she was prepped on what her role as the donor will look like. She'll be coming in again June 29th for the actual bone marrow harvesting on July 2nd.
Zach also had a bone marrow biopsy on Wednesday.

We're now getting ready to head back into the hospital on Thursday for "move-in day". Zach has been enjoying these last days of summer and working hard to finish up everything before he goes in.

-Jess


Zach’s Story

Site created on June 2, 2018


***Please note that donations given on this site directly supports caringbridge.org***

Thanks for stopping by and checking in on Zach! We are so grateful for your prayers and support as we walk this journey. We will be using this site to send updates and prayer requests as well as praises.  Zach would love to hear from you - one way to communicate is via this site.

Zach was first hospitalized at 2 months of age and later diagnosed with a rare blood disease, Severe Congenital Neutropenia at 4 months of age. At the time, doctors weren't sure he would survive the pneumonia and complications, but he did! That began the countless trips to CHOP, learning to give our baby a nightly shot, hospitalizations for every fever & concern, and battling Crohn's Disease for many years. All the while learning much about a blood disease known as Kostmann's Syndrome or SCN. Zach continued to have many hospitalizations and was sick a lot but didn't let that sideline him. He worked so hard to keep up with his 3 older siblings! As a young boy he went through many difficult medical seasons and even to this day doesn't wake up feeling "healthy" like you or I but fights through. We are so proud of him!

Over the last 18 years, Zach has courageously lived life doing his best to be "normal" and healthy. He's a tough young man! A nightly injection (Zach has had over 6,800 shots!) and God's faithful hand on his life has, for the most part, allowed him to do that...but he daily lives with joint & bone pain, fatigue, continued risk of infection, as well as higher risk of leukemia and other complications.

After 3 years of much prayer & seeking wise counsel we are following the medical advice for Zach to undergo a Bone Marrow Transplant. He will be admitted to CHOP on 6/21 and the actual harvest/transplant from his donor sister, Rachel, will be 7/2. The initial hospital stay is approximately 6-8 weeks and then the goal to re-enter mainstream life around 6 months post transplant. We are anticipating a successful transplant which will allow Zach to truly live healthy. As we move forward we will be sharing some specific ways you can pray along with us as we know that Christ ultimately does the healing.

Thank you for coming along on Zach's journey (http://www.zachsjourney.com/) to health. We are unsure of what the transplant road ahead looks like but prayerfully taking one step at a time.

Our family is confident that God will be glorified in this season and can't wait to see His healing hand at work. We are blessed by so many caring and praying for our family. Thank you!

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