Journal

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
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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

Hello all!
First, the feeding tube is still out...yay! Zachs been eating pretty well and at clinic tomorrow they will check weight again. Tomorrow is an exciting day though...after 3 months Zach is getting his central line removed! Thankfully he will be under general anesthesia when they remove the broviac. Zach has been under anesthesia countless times through out his life and today i was thinkng that tomorrow could be the last time for the foreseeable future. That’s so exciting! The removal of the central line is another big step in recovery.

Please keep Zach in your prayers tomorrow. Thank you!

p.s. we have been so blessed that Rachel moved home from California last week! All of a sudden there are 3 birds back in the nest. Last week Zach enjoyed having Rachel with him at clinic!

-Diane

Journal entry by Diane Oberholzer

Quick update from our clinic visit today.

On Monday, during a bout of nausea, Zach threw up his feeding tube. About 2 weeks ago the same thing happened but he threw it up the day before clinic and so his nurse put it back in. It took 2 tries and the first try was quite traumatic and scary.
All that to say, on Monday, Zach wasn’t too anxious to be Kevin’s guinea pig. We left the tube out and he tracked everything that he ate/drank. Although he lost a couple pounds they’ve agreed to give him a week to try without the tube. Tomorrow he starts an appetite stimulant to help. Zach’s super motivated as he doesn’t want it back in. Can’t blame him...It’s hard to sleep at night hooked up to a machine connected to a tube in your nose. We’re enjoying seeing his face 😊

Zach’s having a textbook recovery for which we are very grateful! His ANC from last week was 2450! Still climbing :)

Thank you for praying for the family that lost their son. Memorial services were today. Please continue to pray for them. 

love to all
-Diane


Journal entry by Diane Oberholzer

its bee so long since I’ve updated everyone! I’ve been waiting for our Thursday CHOP visit blood count results to come back(we usually have them before we leave for home) but they still aren’t even posted online. So here goes without them...

Today is 2 months since Transplant Day! The new life/blood flowing through his body is a miracle. Zach has been doing good and tolerating well being stuck in the house or yard. He misses being able to go where he wants and do what he wants like a normal 19 year old...He's able to be outside but having a bald head and a tube in your nose doesn’t help for blending in :) He did mow our grass yesterday on a riding lawn mower and I know that felt really good! It’s hard to remember how active he was before transplant and see him now but we hold on knowing there is health on the other side.

Every day he still fights nausea...some days better than others. He’s also still getting overnight feeds through his NG tube but eating and drinking are slow to come along. We will slowly wean down the amount of calories he receives in the weeks ahead. His energy level is slowly increasing and up & down everyday.
As you can tell, everything seems to happen slowly...

While inaptient, there were 7 of us moms that got close through praying together or just sharing life as we all walked through a very difficult time. We were an eclectic group but God definitely put us together. In talking with a few others I’m recognizing that having a support group such as this inpatient is not always the norm. I’m grateful for these women.

Being back at the hospital on Thursday for clinic was extremely difficult as one of Zach’s fellow BMT’ers (15 years old) passed away on Wednesday. Please keep this single mom of 4 in your prayers as we are all heartbroken for her loss. She is walking through a fear that we have all had to face throughout this transplant journey. Pray also for Godly wisdom for me as we talk often via text. She is searching and in pain; I have no answers BUT GOD.

Of the remaining 6 BMT patients, one is still inpatient and the other four have all been discharged and already re-admitted for a variety of reasons. We recognize the journey is long and are trying to consciously give God praise no matter what the day holds. 

Thank you for continuing to pray us through. We are thrilled by Zach’s progress and the support of so many. 

-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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