Lara was in the ward for a period of 23 days in September 2010 for high-dose chemotherapy followed by stem cell transplantation.
Lara turned 5 in August.
She loves to paint, read and mess around. She also likes ballet, watching movies and playing with Playmobil or with her siblings.
Pasta, salami sandwiches, pasta squares, chicken nuggets, oatmeal with milk and cocoa powder, warm milk, hot cocoa with cream and fizzy apple juice.
We were now limited to staying in the room. It was the same as in the gowning room, but this time it was really long. “You couldn't go into the playroom, visit the other children or even go for a walk in the corridor.”
There “wasn't a normal toilet” in the room.
The building looked friendly and bright, both inside and out. The oval shape made it seem like it went on forever. The ward was very “clinical”. In the room, you hardly notice the ward.
We, the parents, had to come up with a lot of things to do – playing and craft work, a whole program so that we weren't bored and staring at the television for hours. Lara learned the alphabet within this time.
What was particularly nice was that Lara knew one of the Frankfurt nurses from the clinic in Mainz. “I had so much fun with her.”
The best things about the room were the large window, the comfortable chair and “the bed that you can move in all directions at the touch of a button.”
We, Lara's parents, accompanied her the whole time in turns – often from the early morning at 8 till late evening at midnight. It was very stressful and the switch only made this endurable to some degree (every 2 to 3 days or so). It would have been very tough without the quick coffee breaks.
Lara's older siblings also came to visit on Sundays. Another good thing was that you could sit in front of the window and wave, so Lara was able to see her whole family.
Lara's day nanny, Brigitte, and her husband Wolfgang also came to visit on several days.
Lara's transplant went without any complications. Everything was fine except for a brief rise in her temperature. What made things easier was that Lara was given back her own stem cells so we didn't have to worry whether the cells would be accepted.
If you read the patient information sheet carefully, the side effects of high-dose chemo were already fairly daunting. But luckily everything went smoothly. Just like the other 17 sessions of chemotherapy beforehand, Lara overcame this one fine, and without any complications or further harm.
The worst part was the blood purification that lasted several hours when the stem cells were filtered out (around four weeks before the actual stay). The continual injections in her arms for the major infusion cannula were pure torture. The doctor on hand was really kind and patient – she battled along with us. Thanks!
The time spent together was wonderful – we made the best of it and got through everything as a team.
When we ask Lara, she is glad the stay is over. There were too many restrictions for her and there were times when she suffered from extreme pain and was really tired.
The best thing about the ward was definitely the nurse Lara already knew from Mainz. It was a real joy to see her again. The nurse made the stay easier for us as parents and her friendliness made the time much more bearable for Lara than if she hadn't been there. We are so grateful to her!
Lara learned some letters of the alphabet. She accomplished a task during her time in Frankfurt which was something positive. She was still able to keep doing a lot of her leisure time activities like painting, playing with Playmobil and craft work.