February 2, 2006

We are home! It is late now and the girls should be in bed, but they are having a great time giggling and being goofy- Leah could barely speak before she was giggling so hard. It is so wonderful to see this side of her personality and not the hospital side (definitely not happy when she is there, and the giggles are rare).

This morning we had another problem getting blood return from Leah's port. My theory that when she has a tantrum they have troubles getting blood has bit the dust because every single time they tried today she was calm and cooperative and it still would not work. Finally they did use TPA and it worked well after that. The TPA helps dissolve any clots that may form and sit in her port and prevent blood from coming out. The heparin and saline flush in well, but the reverse pressure when trying to draw blood sucks the clot into the opening that blood is supposed to come out of and prohibits any blood from coming out. When they rounded this morning they had already decided that Leah's electrolytes looked to be more in line with where they should be, and were planning on discharging us this afternoon after tweaking the doses of oral supplements she gets. Her magnesium and potassium are still a bit low, but we are taking medicine after medicine to counteract these things. Dr. Loew shared with us that one of his patients continues to take these medicines a year and a half after treatments have stopped. His kidneys are recovering, but slowly. All I could think was that at least he was a year and a half out of treatment and I hope someday we are, too, and Leah may or not have to still take oral supplements to help her kidneys, but that will be the least of my worries.

I had to get up early this morning because I was interviewed on the radio station 96.5 to help raie money for their Dance Marathon/Children's Miracle Network weekend they are starting. They interviewed many cancer moms throughout the day to help raise money. Leah came with me, too, for this early - 7:40 AM interview. (7:40 AM used to seem rather late, but in the hospital we would rather have been sleeping). I laughed this morning because we were all so tired from the yelling boy across the hall the other night that we slept pretty hard last night. Leah got up and announced that she had drooled all over "just like Grandma Karen does when she sleeps!" This has become a joke with us and Grandma Karen since she fell asleep once during one of Leah's blood transfusions. For the record, we did not see Grandma Karen drooling, but we will never tell her that.

Leah's breakfast was 2 pieces of cinnamon toast (we bring our own supplies to make this), a bowl of Life cereal, 2 Reeses Peanut Butter cups, some cheetos and 2 cups of milk. As soon as she was done with that she asked if she could have lunch. The megase is really working and the further otu she gets from her last chemo. treatment the more she can pack away. I think today she has had 11-12 Reeses Peanut Butter cups----that is only 600 calories from that alone! The big thrill she was looking forward to was going to eat lunch at Melrose -one of the cafeterias in the hospital. They have a good selection and the one Leah has opted for both times is spaghetti with marinara sauce. She also ate some grapes and managed a frozen meal tonight and macaroni and cheese-and the extra Reeses Peanut Butter cups. I think she may be gaining weight-right now it even looks like it in her face. This is not bad, though, because after chemo. she does not feel like eating much at all.

Dr. Rahdi also stopped by this morning. He wanted to talk with us about the conversation he and the other doctors had about Leah yesterday. They will be changing chemo. drugs for round 4. This is what we expected. They are going to a different drug than the one originally mentioned, and this one drips in over 5 days. We will be inpatients that entire time. After the fourth round there will be a scan to see if there is enough shrinkage for resection, or if they would like to do a fifth round of chemotherapy. Again, this is another "wait and see" (and for us pray is the third component) time.

Leah did take part in the morning activity-sponge painting. Any art activity she loves to take part in and this was right up her alley. We were discharged by the afternoon activity time, but were waiting around for her medicine to get ready at the pharmacy and they wanted her to take part, but we could not convince her. After noon when they took her port needle out Leah had a great time running around our floor, picking on James, and pretty much taking charge of things. It is amazing how her personality changes almost instantly.

We are still looking forward to Dance Marathon this weekend. While I would rather have never had this latest hospital stay, it has been exciting to be in Iowa City to see all the college kids prepare for this event and witness their enthusiasm. Leah has been asked to dance by many people already. She may be up late into the night to get all these dances in. We have heard from everyone that Leah will feel very, very special this weekend. Chris and I are looking forward to meeting up with some new friends we have made and also meeting some people with wonderful success stories to share.

Leah is clamoring for the computer-she claims she needs to email a few people yet tonight. It is way past bedtime, but we are having a great time. Leah must have been on a sugar high with all of the chocolate she has consumed. She has not said too many things about all of her medicines--she now takes 7 different medicines 2x each day, and rarely complains. She wants to know what each medicine is called and is developing a preferred order to take them in.

Chris just returned from work and Leah wants to type yet....we want to thank everyone again who has been praying for Leah and helping us in so many different ways. The meals that continue to arrive and the cards that we get each day in the mail help relieve some of our workload and continue to lift our spirits. We also continue to enjoy the phone calls and emails we receive. Leah's Dance Marathon poster was completed and dropped off by Deb Smith and looks wonderful--another thing that we did not have to concern ourselves with and are so happy to have to take with us.

My words of wisdom from Leah tonight (remember she is four and finds bathroom humor right up her alley) as she continues to pass gas with all her new medicines...we have often joked that she is tooting or "thundering." She responds with, "Tina, thunder brings rain. Toots bring poop."