Lexi Update: Day 3 of Anitbody Infusion

For those of you who are new to my blog, Lexi (whom I provided daycare for since she was 19 months old) is now 7 years old and was diagnosed in June 2009 with stage 4 Neuroblastoma at the age of 6. If you are a mother and do not know about this form of cancer, please do some research and learn about it.

Lexi's mom, Jen has set up a website on Caring Bridge where her she can update everyone at once and where everyone can leave messages for Lexi and her family. Jen says that she uses it as a sort of therapy. They enjoy reading words of encouragement, it does them good. I copy and paste what she posts to share with those of you who follow her story but don't want to visit the Caring Bridge site.

Wednesday, April 28, 2010 1:18 PM, EDT

Hello! Alexis is now on her 3rd day of the antibody drug. She has been doing fairly well overall. She hasn't vomitted since Monday evening which we are thankful for and her pain continues to be controlled with the morphine. She has been needing regular doses of morphine, but as soon as the morphine is given her intense pain disappears. There have been many moments where she states her pain is a 10 or even a 12. Luckily it hasn't lasted too long. Since Monday night, Alexis has pretty much had a consistent fever even with regular doses of tylenol. The highest it has been is 103.2. The fever is a side effect of the medicine she is receiving so her doctors are not worried. She hasn't been eating much but she has been drinking a lot which helps her fever so I am glad we are able to at least get her to do that.

Yesterday, Alexis's two main goals were to play with the Wii and to have a massage. The nurses put in consults for rec therapy to bring her a Wii and to have a massage. By mid day both of her wishes came true. The massage therapist, Peg spent almost an hour yesterday and today giving Alexis a massage with the speical request to use a comb. The past two days, Alexis's mornings have gone very well. She has been very chatty and comical to the nurses. A few people have commented on how cute she is and she has replied "I know, people tell that all the time". By lunch though she has been exhausted with the amount of medicines so she has been taking a lot of naps. Today, it has been hard to tell if her pain is just pain or if it is constipation or nausea. The doctors are going to order some medicine for constipation so hopefully that will work. In the meantime they are treating her for pain and nausea! Which means a lot of sedatives.

Alexis hasn't been up to doing a lot of crafts this stay but she has watched a lot of movies. She has been requesting that I lay with her in her bed and watch TV, so we have been doing a lot of that. I don't know who has enjoyed that more!

Today the doctors came in and said Alexis's sodium levels are low. To increase her levels the doctors are putting her on fluids for a day or two.

Yesterday, the nurse practitioner, Faye, came in and talked to me about Alexis's upcoming schedule. I quickly relaized that I needed to read the protocol again because I had forgot a few things. Anyway, Alexis will be admitted next on May 17 th for 5 days. During this time she will be receiving a different drug that will infuse for 24 hours a day for 4 days. The side effects are not anticipated to be too bad. After this, Alexis will be able to go home for one week and then she will be admitted again for another 4-5 days. This time she will receive the medicine she is receiving this round and the medicine from the second admission. These two admissions will both be part of the second round. Faye also said that Alexis will start the retinoic acid on Tuesday. The bad thing about this is that she will need to take this medicine two times per day and it doesn't come in liquid form. Alexis has never swallowed pills before, so we know it is going to be a challenge. Each dose she takes involves 2-3 pills at a time.

Yesterday, Child Life came in to help Alexis practice swallowing pills. To practice they used candy. They started with nerds, then worked their way up to the largest size which was a mini m&m. I wasn't in the room, but as soon as I walked in the door I was told that Alexis did very well. Then Alexis started coughing. Alexis said that the m&m was caught in her throat. We encouraged Alexis to drink and even eat a peice of melon but she still felt like it was caught. We haven't practiced since, so we will need to do it again. I just hope this experience doesn't scare her from trying again.

Just a few minutes ago, Dr. Ranalli came in and had me sign a form saying that he explained all of the sde effects of retinoic acid. He even handed me a book size patient booklet about the drug and a special card that has my ID number on it to access a speical website and to share with the pharmacy. I couldn't believe how elaborate the process was. It must be an important drug with a lot of special precautions required.

Right now my dad is visiting us and Alexis is sleeping. Alexis was very cranky before her nap. I think all of the differnet medications are catching up with her. Before her nap, one of the volunteers came in to see if Alexis wanted to make a tote bag using a t-shirt and fabric markers. Alexis told her that she really wanted to make one but not today, another day. She also turned Mary the rec lady down, which she only does when she is absolutely exhausted or feeling very yucky.

Alexis wants to Thank everyone for all of the e-cards. We have enjoyed reading them. I am so thankful that I am able to be here with Alexis. It means a lot to both of us. Thank you for all of the messages. Again we feel so fortunant to have such a great support system!

Take Care,
Jen

If you would like to catch up on Lexi's story, you can read all about her here. Please keep her in your thoughts and prayers because her battle is not over yet.