365 days ago Eli and Jacob Kulman got a new lease at life! Thanks to one anonymous bone marrow donor, the boys are now celebrating their 1st “Rebirthday,” with healthy donor cells swirling in their bodies and many of their IPEX symptoms at bay.
It wasn’t easy: they had to undergo chemo, long hospital stays, lots of medications, tubes, procedures, long lasting chemo side effects, leave home, stay away from family and friends for over a year, and completely quarantine.
Now one year later we checked in with the family to see how everyone is doing. In addition to being brothers Eli (age 9) and Jacob (age 7) are now TWINS as well because they share the same bone marrow and same bone marrow REBIRTHDAY! Jacob was quick to inform that he is actually the OLDER twin by 15 minutes!
How are you feeling?
Eli (E) and Jacob (J): Great!
Are some days better than others? Do you notice a difference from before the Bone Marrow Transplant (BMT)?
E – Yes! We have more energy!
What changes have you noticed?
E: I feel stronger. We are eating better – food is tasting better.
Ali (A): They have each gained over 15 lbs and had to buy new clothes. (This is of note because growth rate is an issue with IPEX)
J: We don’t like daylight savings. Haha!
I know you couldn’t eat a lot different foods because of IPEX prior to the BMT and that chemo side effects impacted your appetite. What do you like to eat now?
J: I like everything! I just started eating Bologna and I like Salmon.
E: Pizza– either plain cheese or sausage and cheese
A year ago you were in the hospital full time – but since leaving CHOP you’ve been isolated at home. What is your favorite thing to do at home with your family?
J: Watch Shows – Wild Kratts and Pokemon
E: Games – Rummikub, Phase 10 and blackjack
I heard you got to do something new and special this week this week: Tell us about that:
E and J: We went to the ZOO! With Friends!!!
E: We can now see people who are vaccinated if it’s outdoors, with masks.
A: It’s important though we limit exposure to possible illnesses, even the common cold could be very hard on their bodies. So we are just starting to venture out of the house with precautions. For example, my parents are coming for thanksgiving week, but they will be quarantining beforehand to continue to help protect the boys from any rogue germs.
So as your bodies get healthier you are going to get to experience more things outside of your house: if you could go anywhere or do anything what would you do?
J: Florida, no! wait… the AMAZON! – I want to go to the rainforest to see the pink river dolphin, and the large river otter and howler monkeys
E: Anywhere and everywhere- even school! AND Guess What…. We get to go to school in January!!!
YES! I heard you have been cleared by your doctors to return to school in person in January!! What are you looking forward to most?
J&E: GOING TO SCHOOL! Meeting new teachers and classmates!
E: I’m looking forward to not being with Jacob! Haha
J: I’m looking forward to not being Eli! haha
Interviewer: But you love each other!! Of course, it is nice to spend some time apart so that you can appreciate being together.
E&J: Yes!
You still have to go to CHOP every month for check-ups. We know some of that may not be fun, but is there something special you get to do CHOP when you go, or favorite person at CHOP you want to tell us about?
E&J: Ms. Michelle from child life and Ms. Ann the Nurse Practitioner are our favorites. When we are there, we get to watch anything we want, and we always get takeout from Maggiano’s for dinner.
I know that the clinic visits can be long days. What would you tell another kid who might be going through this process?
E: The worst part is the waiting, not the stick (being poked by the needle for IVIG). After the stick, you have to wait 4 hours for the infusion to finish. The out-patient part is easy, but when you are in-patient the nurses wake up at 6 AM for medicine every day.
J: If they are little kids, I would say that the stick (being poked by the needle) is not fun, but the best part is the infusion center – there are games, shows, cool chairs, snacks, anything you want!
Lastly a few questions for Mom and Dad – What has become easier as a result of the BMT? What still lays ahead? What is their current prognosis?
The IPEX is in remission, currently with 99% donor cells in each child’s body. This is a great result for one year out! Things aren’t necessarily easier yet, besides their lack of illness, because we happen to also be in the middle of a pandemic. But happily, they are both only on a med or two each, and food is getting easier. Jacob still has some food allergies, and has had some food challenges at the doctor but Eli hasn’t been tested yet. That will be part of their clinical checkups in coming months, in addition to IVIG infusions each month.
What does it feel to be one year out from the BMT?
A: Like it was all just yesterday and years ago.
**The responses in this interview have been paraphrased by COTA friend Katie.