one week already come and gone

I cannot believe we have already been home for a week! I wish time went this fast at the hospital!! :) I took Gracie and Chloe for a pedicure yesterday and they loved it. Gracie has been wearing her sunglasses everywhere because her eyes are still dilated from the ch14.18! her eyes are very sensitive because of it, obviously. I was hoping it would be better by now, and it worries me a little. I'm hoping she won't have any permanent eye problems from this, she still has 3 more rounds of the ch14.18..

The second round of accutane has also been harder on her as well. Her skin is soooo dry and sore. It is weird cause even her eyelids are peeling. I bought several moisturizers and lotions that others have recommended to me and I think the main part is just being very diligent about applying it several times a day. She has been very moody but I don't know if it is from the accutane or just the chronic pain she has.

I ask that you will please pray for her pain and other issues. thank you so much! I am so grateful for the Internet and the ability to have have so many read these posts and know what she needs them to pray for specifically. :) God bless you all. We are so grateful for you.

I ask that you also pray for Gracie's friend Briley this weekend especially. Monday she will have another spinal tap and bone marrow aspirate. It will also be her last day on steroids. They will be injecting more chemo into her spine and taking bone marrow samples. If the samples show zero leukemia cells, Briley will be considered in remission!! :)

home again :)

Gracie and her new friend Briley making heart shaped pizzas. Please include Briley in your prayers! She has leukemia and is 3 years old. www.teambriley.blogspot.com

last monday before her headache started. i love this picture, she just looks so darn sweet! Tuesday went better and then wednesday she ran into more issues with blood pressure and headaches and oxygen. they turned both the IL-2 and ch14.18 off until thursday morning and kept them both at 5 ml per hour for the last 24 hours. I was soooo beyond ready to get out of there on friday!! (Gracie too) it was a long three weeks. we left around 1:00 pm and made it home at 6. it was so good to see the other kids again and Brandon! Von gave me a huge hug but then he really didnt hang on me much since then. It was bitter sweet. I was glad he was ok but sad he didnt miss me more :) He has done a lot of growing up. he will be 2 in 2 more weeks! Grandpa and Grandma Bloxham came friday night and stayed til yesterday. It was wonderful to have them here! We went back down for clinic on monday. we left at 3:15 am for an 8:45 appt. and then made it back home by 3:30 pm. it was a long day but glad to get it over with. all of her counts were good and we dont have to go back til the 3rd of March for her next check prior to round 3 on March 6. We are so happy for the 3 week break. knock on wood!! please pray she will stay well in between rounds and we can enjoy this time at home. She has had a lot of pain since leaving on friday and also her eyes are still dialated from the ch14.18. they said it should go away after a day or two but it has been 5 already. also please pray for her appetite to pick up and that she can gain weight. thank you so much!! we love you all

Antibodies round 2 week 2

they started the IL-2 around 9 am yesterday and the ch14-18 at 11. She went and played in the playroom for quite a while until she got a headache. her headache lasted all day and was very intense. It was awful and much worse than round 1. Other than that she was doing ok. Around 7 pm her blood pressure started to drop and her o2 sat was 84 so they put her on the nasal canula of oxygen and stopped the infusions. She also had a high fever so they drew cultures, even though fever is a side effect of the antibodies. She got 3 saline boluses and it wasn't helping the blood pressure so they gave her some albumin and it started coming up throughout the night. She was puking and in a lot of pain all over. it was a very long night and we are both grumpy and tired today. This morning they started the ch14-18 at 11:00 at the half rate and had it run alone for 2 hours, then started the IL-2 at 1. So far it is going ok today. Knock on wood.
I hate this! I know it is such a blessing to have this option now that they didn't have 10 or 20 years ago. I have to keep reminding myself how worth it this all is. It is exhausting though. Thank you all for your prayers and please pray extra hard this week that her pain will be minimal and her blood pressure will be ok. Xoxo

Homesick

Today I am really homesick. I miss my kids and Brandon. I hate that my little Von is learning to say so many words, and I am not there! I am just feeling kinda down and I think that's ok sometimes. It is just overwhelming at times and I am so glad she is doing well or it would be a lot harder. Sometimes I feel like people have forgotten us but I know that there are still so many out there praying and thinking of Gracie. I don't know what we would do without our great families. We have no family close by, they all have to fly or drive two days, but they have been there the last 11 months. Especially my mom. I'm so grateful she is retired nd able to be there so much, how much harder it would be without that blessing!! I feel bad asking others to help and then get discouraged when some don't offer the help that is needed. I will be so glad when all of the traveling is done with in a few months. It has been a long 11 months. It is still hard. We are accustomed to it so in a way it is easier but the emotional part is taxing. I think I need some sleep!! Lol ;) I don't want to sound ungrateful but I'm just feeling kinda forgotten and wishing I could do more.

11 months

Today marks 11 months of fighting the beast that is cancer.
Gracie started the IL-2 on Monday morning around 10:30am and finished this morning at 11:00. It ran for 96 hours at 5 ml an hour. she did really well with it and was pretty happy most of the time. she only puked a few times all week and didn't need too much pain meds. her blood pressure was a bit lower than normal but not bad.
she was so excited to be unhooked from all the monitors and cords today and was able to go to the playroom as a free woman today. Gracie met a new friend here named Briley and she is 3. She was diagnosed with leukemia last month. They like playing together, Briley is at the McDonald house now for a while but she came for playtime and will keep coming when she can. Gracie is happy to have a friend. They are so cute.
We are staying in the hospital over the weekend since the McDonald house is full and all motels because of the super bowl is weekend in Dallas, and she needs to finish her antibiotics through Monday anyway. It was a mess with home health last time.
There is a lot on my mind a lot of the time and being cooped up in here there is way too much time to think. :) I'm grateful for such a wonderful family..