A summer in Hanover (Home is where your Heart is)
Noah, 6 years old, liver transplant for three years
We are Oliver, Ulrike, Noah and Anna and we live in the Rhine-Main area.
Noah's health was completely normal until he was two and a half years old. Until suddenly, at the beginning of 2017, his bowel movements changed, became very light in color and were no longer formed. Otherwise, he was fine and had no complaints.
The pediatrician wanted to wait and see and take a blood sample two months later. As our gut feeling told us that something was wrong, we kept at it. After six weeks he had slightly yellow eyes. Blood was then taken immediately and an ultrasound was carried out. The liver values were massively elevated and there was a mass in the liver.
It was a very, very rare type of cancer
Then it couldn't go fast enough. Admission to hospital in Rüsselsheim, CT scan, transfer to Mainz University Hospital. It turned out that the mass had squeezed the bile ducts and a portal vein thrombosis had already formed.
To put it in the words of the little bear: a strip had slipped out of place on the tiger.
This was followed by several weeks at the University Clinical Department in Mainz and Hannover Medical School (MHH) with stent placement and a puncture of the mass. On this occasion, Oliver tore his Achilles tendon on the MHH hospital grounds and was also a patient there. Oliver's parents supported us on site during this time.
When we were finally allowed to return home after more than two months, the result of the puncture came just a few days later: it was a very, very rare type of cancer, an inflammatory myofibroblastic tumor of the right lobe of the liver. An attempt was made to shrink the tumor with chemotherapy and make it operable. Although the tumor actually became smaller, it had unfortunately already affected vessels outside the liver. So the only way to save Noah's life was to transplant his entire liver.
All four of us were allowed to be patients of the MHH
On June 23, 2017, little Anna was born at the MHH in Hanover, four weeks prematurely. And a few days later, Noah, and therefore we too, received his present (as we call it). Just like the little tiger: soothing little injection, blue dream, operation over, nothing noticed, tiger healthy.
Well, not quite... The successful transplant was followed by a few more weeks of "extra curves" (e.g. rejections, MCT diet due to an injured lymphatic system) and so the four of us - actually five of us, as Ulrike's mother supported us on site the whole time - spent the entire, unfortunately rather wet summer of 2017 in Hanover until the fall.
And each of the four of us was allowed to be a patient at the MHH: Ulrike and Anna for the delivery and puerperium, Oliver for the Achilles surgery and Noah for the transplant. And we also celebrated... Anna's birth, Ulrike's mom turned 70 and Oliver had his 40th at the MHH.
It's nice to see how well he's doing
The values have now stabilized and Noah is doing very well. He has grown quickly and put on weight. The whole family has become accustomed to the restriction of medication-related meal breaks. We mixed our immunosuppressant "Tac" in the most abstruse places and Noah bravely endured it, even when the others (children) were allowed to eat and he still had to wait. Of course, it was all the better when we were able to switch to Advagraf and the break in the evening was no longer necessary.
It is nice to see how well he is doing and how well his "gift" is working. He goes to school and does sport. Even a skiing vacation was no problem. He is currently leading the normal boring/exciting life of an almost seven-year-old, even in times of the coronavirus pandemic: without major restrictions, but with a lot of joie de vivre and a second birthday a year, his liver birthday.
Noah always looks forward to the little "vacations" in Hanover
We still have contact with the physicians and nurses at the MHH. At the regular check-ups, of course, but also beyond that. Friendships have developed. And we have also built up a special relationship with Haus Schutzengel and the team. Noah always looks forward to the little "vacations" in Hanover. To the steak and bacon pizza from Dominos, which he always gets in the evening to celebrate his arrival. To the zoo. To lunch in the Canteen.
All in all, it was quite a shock and a difficult time, from the diagnosis to the discharge and getting used to everyday life again.
Happy and grateful for...
In the end, we are happy and very grateful...
...for the chance of a second life with Noah.
...for the willingness and courage of the donor and his family for the life-saving organ donation.
...for our families, who were there for us from the very beginning in these challenging times.
...for the great team of nurses and physicians on ward 61a (formerly 63b), the psychosocial counseling, the nutrition and dietary counseling, the play therapy and the team at Haus Schutzengel, who gave us all such great support and guidance during this turbulent time with pregnancy, Achilles tendon rupture, birth, diagnostics, chemotherapy, transplantation, surgery and aftercare. And will continue to do so in our new, second life.
...for the many different encounters with dear people who were in similar situations or who have found their calling in the hospital world.
...for the friendships we have made.
.... for the experiences we have had and continue to have during this time, which have allowed us to constantly reassess the value of life and our own priorities.
We hope that we can encourage others, even when one disaster after another strikes, not to hang their heads and still look positively to the future.