Field Trip: Diego’s Chemo Treatment at Duke Children’s Hospital (Diego’s Journey Part 2)

Talk about a unique field trip! Our family was blessed to join our little friend Diego for his next-to-last chemotherapy treatment. It was such a good experience for all of us. We now know much better how to pray for Diego. Here is a little bit of what we experienced…

Diego couldn’t wait to take the girls down the tunnel from the parking garage. The hospital does have valet parking available which is nice for families with really little kids.
Just outside the Children’s Hospital is a small courtyard area. The kids were happy to pose for us out here even though it was one of our coldest days yet this fall! 

Beth and Diego are in the same grade and have been so close. We moved in when they were both one. Diego feels more like the girls’ brother than anything else. Before he got sick he was over here in our yard or house all the time. They are both missing their top front teeth at the moment so I took the chance to get a photo of their gaps! 
Diego treated us to Einstein Brothers Bagel’s, a tradition he and his mother have before chemo treatment. It’s a small little shop, but they are very nice there and we enjoyed bagel sandwiches, plain bagels, muffins, smoothies, and juice. We all loved this tradition!
The children’s hospital has such a pleasant atmosphere. I remember when they built this hospital and how much effort was put into making it as nice as possible for the kids. They have a table where people bring in gifts for the kids who come in for tests and treatment and their siblings. The guy at the table was so nice! When the girls asked if they could get something I explained that even though it felt like Diego was their brother he really wasn’t and we should save the gifts for the other kids who came in. He flashed a sweet smile, gave them a wink, and said, “Go ahead girls. You can be his sisters for today!” So all four kids received sweet gifts from local school children. 
Diego has been blessed with an iPad mini from Journey 4 A Cure. I knew there were lots of organizations out there to help with cancer research, just not how many there actually were. Diego is really enjoying this and it has been very nice for him on the days he’s not feeling well enough for school because there are lots of educational games available for him. 
Diego’s Child Life Specialist, Katie, assists during the treatment and took a lot of time with the girls. Here she and Diego are explaining to the girls about the parts of blood. They use this to explain to kids about the diseases in blood, white cells, red blood cells, and the medicine and how it helps them. It is very cute and Diego remembered most of it even though he hadn’t seen it in a while. 
This is a little doll used to explain to kids about the port, the medicine, and show them exactly what is going to happen. Katie let my girls have a chance to “access” the doll’s port including all the cleaning and taping involved. Rose was the one to actually put the needle into the doll and she was very thoughtful throughout the process.

They also got to give the doll medicine through its port. They drew the medicine and pushed it through the port. Grace really liked doing this part. She doesn’t understand a lot about this entire thing, but ever since our visit she prays multiple times a day for Diego’s medicine to make him all better. 
Beth told me after my surgery last year that she wanted to be a nurse. Unfortunately she seemed to think she already knew what to do and didn’t listen very well. She did seem to really enjoy the process and was very eager to participate. I was so grateful for Katie who talked in a matter-of-fact manner about the process on a kid-friendly level. I’m sure they are trained to do this, but seeing these special people in action gave me even greater appreciation for what they do and how much they love these kids on a daily basis. 
I learned something really cool they do for the kids. Everyone in the room while the port is being accessed must wear a face mask to prevent infection and germs from entering. Since chemotherapy can make odors stronger and harder to tolerate they give kids flavored chapstick to put on their masks. The girls got to flavor a mask even though they did not stay in during the access or treatment. 

We were advised it would be best for the girls to remain outside while Diego’s port was accessed, so my husband took them to the waiting room. I stayed there with him and his mother at his request. I now have a much better understanding of how scary this really is for a kid. I think Diego is in an in-between age of understanding a lot, but not everything. This is really frightening for him even though he has done this lots of times now. 
Something which really stuck me was what Diego requested before they did anything. “Wait, wait wait! You need to pray!” This is his request every time. You see, Diego asked Jesus to be his Savior a little over a year ago. He knows of God’s love for him and knows the peace of relying on that love. It doesn’t mean things are easy, but he knows just where to go when he is scared. What a testimony! Katie told us he is the only patient she has ever known to ask for prayer. 
This was a powerful field trip for our family. We have been as much a part of this journey with Diego as we have been able and this really helped our entire family know how to pray for and encourage Diego even more. Also how to pray for nurses, doctors, and others who work with kids who are sick like Diego. Their tender care and mercy shown towards children was beautiful to watch. I also know their hearts must break when their patients do not survive the fight. We are grateful Diego’s prognosis is very good, but there is still a long journey ahead over the next year as his body continues to recover from surgery and the chemotherapy. 

How Cancer Touched our Family: Diego’s Journey (Part 1)

Many of you were praying for our dear friend and neighbor over the summer. His name is Diego and he is in 1st grade. The same week I had a portion of my thyroid removed, Diego had a kidney and 3 pound cancerous tumor removed. Since he lives next door and is a good friend our girls have spent as much time as possible with him. We have had some hard conversations about cancer and chemotherapy over the last few months.

I was concerned about how they would react and how it would affect them. They are sensitive little girls with tender hearts who hate to see anyone sick or hurting.

We explained as much as we could. They asked a lot of questions.

And then they prayed.

My girls pray for one of their closest friends every meal, every night, and sometimes throughout the day. They’ve stopped me mid-lesson and say, “Mommy, today is Diego’s treatment. We need to pray for him!” So we do. We pray fervently for healing, for comfort, and for peace. What they don’t understand is why it is taking so long for him to feel better.

But still they pray.

They do understand that because the treatments leave him feeling badly we don’t see him every day. We also take caution not to spend time with Diego if there is even a threat we might not be well. At the same time they know he needs lots of friends to encourage him and they invite him over as often as they can. He often doesn’t feel like doing a lot, but every once in a while he enjoys playing in the backyard.

More often than not this is what hanging out with Diego looks like. I’ve lifted my usually strict limit on screen time because Diego is more important. He usually doesn’t feel like doing much active and I completely understand. It doesn’t bother me one bit because I love when he can forget for a little while all that is going on with his small body.

The best times are the days when Diego invites the girls outside to play. We say yes as much as we can! On this day they enjoyed a walk around the neighborhood with their friend and they had a great time. It is so good to see him feeling well enough to be active.

Here are some of the details if you are interested…

1. The official diagnosis was a Wilms’ Tumor which had developed into stage 2 kidney cancer.
2. He is nearing the end of the chemo treatments which has taken a toll on him physically.
3. He is now able to go to school more regularly as the treatments are tapering.
4. He is very susceptible to illness, but has only been hospitalized once since the surgery.

Throughout everything Diego’s faith has remained strong. We try to be the tangible hands of Christ, but so often feel we fall short. He is blessed with a couple of sweet ladies who have never met him, but have been sending him thoughtful gifts throughout his treatment. Many have surrounded them to help financially and with meals. From the very start he talked to his mom about knowing God was with him. God’s blessings have been evident, but the road has still been hard for the family.

So I invite you to join my girls as they pray. Pray he will experience complete healing. Pray there would be no long-term side effects from the treatments. Pray he is able to catch up quickly from the school he has had to miss. Pray he and his mom are able to have restful nights. Pray for the entire family to continue to feel God’s presence.

Click here to keep up with Diego’s Fight on Facebook.