Day -5

The Busulfan is done and the Fludarabine and Cytoxan (also called Cyclophosphamide) has started. She will get Fludarabine for three days,and Cytoxan for four days. The Cytoxan, at the doses given here, cause fluid retention and nausea/vomiting for most of the kids. As early as 2 hours after the first dose of Cytoxan is complete, in fact. Hemorrhagic cystitis (inflammation /bleeding in bladder) is also a concern with Cytoxan but a kidney and bladder protectant called Mesna is given to prevent this. She also must have her diapers changed and weighed every 2 hours and if her diaper isn't at least 28 grams, she is given Lasix (a diuretic to help her pee off fluids). When she does get Lasix, it works very, very well. The standard effects of chemo still apply for Cytoxan and Fludarabine (decreased white, red, platelet cells, hair loss, malaise, mouth sores, appetite/taste changes etc).

So far, Elle is handling her chemo well; no vomiting, or significant fluid retention. She hasn't fussed much since Thursday. She is smiling again and playing a little. Dr. Wagner is pleased with her tolerance so far, only concerned about her bleeding thumb which is completely better now. He also told us to "give her a break" with the dressing change for one night and we were only too happy to comply. Since the Busulfan is complete, the future dressing changes will not have to be head to toe at one time. We will resume alternating limbs with body dressing changes with Thursday and Sunday off.

Chloe did a little Flamenco dance lesson earlier at the RMH. Grandma got to take her, but she captured some of it for us on camera. There are so many fun opportunities for the siblings of patients at both U of M and RMH. I love it.

We got to see Daylon Edling at dinner. He was bright eyed in his little bike stroller. Everyone gathered around to see Baby Daylon out at the RMH. Then then Chloe got to play outside with the Edling kids after dinner. I only lasted 5 minutes though because the Mosquitoes just love me (I guess they don't get a Mexican dinner every day!) I got seven bites on my ankle and foot. Just my right foot. The weather is gorgeous, cooling and beautiful, so I enjoy being outside otherwise.

Sadie, Keira, Violet, Chloe, Caleb

Ma and Gil watched the baby in the evening after dinner so Stefan, Chloe, and I got to have a little family time together. We fueled up the car, picked up some hard lemonade, bug repellent, popcorn, and a video. After Chloe's bath, we grabbed all of the pillows we could find, started Castaway, and the three of us cuddled up together on the bed. Chloe was so delighted to have both of her parents with her at the same time, she paid attention to the movie even better than her dad. To his credit, he stayed awake through almost half of it which is better than his usual 10 minutes.