Journal Entry


Saturday morning, December 14, 2002

Hello! Please let me apologize if I've worried any of you. My laptop crashed soon after we arrived here at the hospital. Therefore, no new pictures were put on the site and I haven't been able to email like previous visits. I realize this is only a material possession and truly no big deal; however, as someone who's grown very dependent on it to keep in close contact with family and friends it's really been a bummer and I hope I didn't cause any concern. I've really missed the little video movie clips my Mom makes of Shayla each night that we watch in our hospital room. At first it was really hard to see her and to listen to her tell us she loves and misses us, but as time passed we found that we really looked forward to our goodnight messages from Shayla. We often cry as we feel so bad for her and are so thankful for Mom tending to her again this week. Everything is going just fine here in Columbus - a bit of vomitting, but do not worry! It's all "normal". Please email me if you'd like. I can receive and read, but am not yet fluent with sending. The computer store told us that everything was lost on the laptop and that means I do not have your email addresses any longer. We're debating what to do about the computer situation.

On Monday, Christi was taken into a surgical room where they inserted a catheter into her groin and out of her mid thigh. They told us it was thick and it would be uncomfortable and she'd have to keep her leg straight and not be moving around. (My kid?! I couldn't believe they were serious, but they were. I always love a challenge, but..) Christi liked what she called another Broviac coming out of her leg and that the tube colors were red and blue this time When she woke up she said, "Thank you! I always wanted red, white and blue tubes." (The ones coming out of her chest are red and white.) Later on she asked when she could get a yellow one so that she could have the primary colors. Thank you, God for her positive attitude! She's making this so much easier on Shayne and I!

Monday, Tuesday and Wednesday found her hooked up in the aspheresis room where they harvested her stem cells. They took her blood out through one tube, circulated it through the machine, collected plasma and the stem cells (separately) warmed her blood back up and back in Christi it went through her other tube. I found the process totally draining, but also fascinating. I can't believe how much I'm learning. (And how much I've yet to grasp!) She was hooked up for six hours each day and confined to the bed. They told us the kids usually sleep, but no not Christi. She colored, read, watched TV, played on the computer (until it crashed) and played many games. She even made Christmas cards for the sick kids in the hospital. (I really don't think she puts herself in that group.) One day a teenage boy in a orange jumpsuit with his feet in chains was in the other bed. Christi asked him what his name was and how to spell it. She said he was nice and she made him a Xmas card and gave him a candy cane. Earlier I whispered to her what was going on after she said to me "It'd be hard to walk with your feet chained together." How totally innocent and non-judgemental. She's impressed me beyond belief!

I was very surprised to see her stem cells put in a regular looking cooler marked CONTAINS HUMAN BLOOD. I put my hand on the cooler and said a prayer over it all three days. Then someone came and signed for it and walked it out the door saying she was the delivery person. I felt a strong urge to get on my knees in front of her and beg her to take extreme caution while driving and making the delivery with my dear child's stem cells. I wondered if she knew that this is what will start my precious child's life again in the spring after they completely destroy her immune system prior to transplant. It was a very odd moment I'll never forget. I can't believe they just walked it out with a cooler. I expected bells and whistles, tight security and a rapid pace. I wish I could have accompanied the cells on their way to Los Angeles. I know how many times our luggage has been lost while traveling. Certainly it isn't happening like that, but I do not know and the thought haunts me. Now I pray that they've arrived safely and that they are able to purge the remaining cancerous cells out of them. We've been told that we should know in days or weeks depending on their work load in Los Angeles. They will not return a contaminated product, so if they believe there are any cancerous cells in them, they will not be returned. This waiting game is unbelievable.

We were also told this week that no one has lived still having the cancer in their bone marrow for this long like Christi still does. We knew the fact that it hadn't cleared was a big step back, but I guess I was still in denial and wasn't ready to hear the truth. Of course I only got a big lump in my throat and couldn't respond, but I was thinking, "Christi will be the first! There has to be a first!" They are consulting with Neuroblastoma gurus about what to do now that the chemo has lost it's punch. We knew that is why this cancer is the most deadly, but it is still hard to believe when she looks and feels so good that she's sick at all. This Neuroblastoma beast is so sneaky. They don't know what it will do next and plans are being made. Our prayer request is that this fourth round of chemotherapy medications will knock the socks off of it and her marrow will prove to be 100% clear for her early January bone marrow test. It's been a HUGE weight on our shoulders. We're trying to give it up to God, but it's not easy.

I was able to see the MRI myself and could not believe the drastic change in the tumor. Shayne estimated 50% decrease, but to me it was 75% smaller. I will talk with the Doctor on call about it today. I've asked to see a printed out report and late last night he told me he'd give me one today. (I know. I know. It's the weekend for the rest of the world out there!) So I know that the chemo was effective and I was floating to actually see it myself. I do understand the fact that it's still in her bone marrow and has not changed in a month and it's a huge problem, but I'm still excited about seeing the shrinkage with my own eyes. Goooooooooooo, Christi!

During her harvesting one day, Father Mark arrived with his guitar that we'd been asking him to bring. He played and Christi and I sang. She'd never heard "The Friendly Beasts" before and tears wouldn't stop flowing as I was attempting to sing the other verses of "Away in a Manger" and not cry in front of the people in the apheresis room. I just thought, "This is so beautiful; yet this totally stinks! She's supossed to be singing in her very first school Xmas program that was being held later that evening." She would have LOVED it! I received an email from a dear friend who had a child in my class last year who told me she kept watching the gym doors at school that night waiting for me to walk in with my class and it never happened. I'm sure she no idea that I knew what was going on back at school and I so desparately wanted to see all of my little students in their best little Christmas outfits. Later when Christi was unhooked, she played Christmas songs while Father accompanied her with his guitar. It was beautiful and I told myself, THIS is her Christmas program for her parents this year. I'll hopefully get the pics on the web site soon. We're sort of in limbo discussing what we should do with my laptop.

Christi's leg continues to be very sore and she's still not able to walk on it, but she wants to be out and about. Therefore, we are pushing her around and around J5 in her wheelchair. Sometimes I get really down thinking, "I'm supposed to be pushing you in your stroller and in 50 years you're supposed to be pushing ME in a wheelchair." This is so messed up! Anyway, she doesn't want to be confined in her room. Yesterday she was so tired, but she wanted to "go somewhere." I was walking in big circles up here with her and at one point she put her head down on the armchair and fell asleep! It was so funny. She's so tired, but doesn't want to give in. The chemo also makes her go to the potty quite frequently which means getting up many times a night. One night I got her into the bathroom and I thought she was really out of it. Then I saw that she had her hands back on the edge of the wastebasket and was backing her little bum bum up to it like she thought it was the potty. I scooped her up and set her down in the right location in the nick of time. We both had a good laugh over that one in the morning! One night her leg started bleeding really bad. Her platelets were low and they had just finished giving her one of her two transfusions this week. (Platelets allow the blood to clot.) They had to change the dressing many times that night and it really bothered her. (And scared her old Mom as I saw her sheets covered in blood.) They said it was because the tubes inside her are so large and because she's so active she keeps aggravating it. I'm glad they took it out two days ago and hope she can maybe get around without the wheelchair today.

We had a lot of wonderful things happen this hospital visit. People brought us food. Gifts were delivered by a Girl Scout Troop and by Santa. (I can't wait for you to see the photos.) It was so kind and generous and never once so far have we heard Christi say her usual, "Im bored!" She has PLENTY to do. Thank you!!! We shake our heads and are very humbled by the goodness of people - people we know and also complete strangers have shown us great love. Thank you!

Yesterday, I not only left this floor, but I left the hospital! REALLY!! I knew that it was my only chance to Christmas shop for the girls. I quickly drove over to City Center and purchased some clothes for Christi (Sorry, Shayla! You'll get them next!) and went to K-B toys. What fun! I am the Garage Sale Queen when it comes to kids' toys so I've never gone into a toy store and did that, but it was awesome! We always buy the girls books and put money in their saving accounts for Christmas. They have more than enough toys due to summer garage sales and Shayne's Mom, but this year knowning that statistics tell me it will be Christi's last Christmas I wanted to get them a bunch of toys from Shayne and I. In less then 30 minutes I spent $97.00 and I hustled right back to the hospital. I brought some of those wonderful hot pretzels to a few of the other cancer kids' moms here that we've come to know and love. I don't think Christi even missed me while I was gone. Our wonderful neighbors have offered to wrap gifts and I think I'll take them up on that offer now.

Buttercup went back to the vet on Monday. We were told that they've discovered a mass and that she should go to OSU to have it checked out. (I'm thinking so much for the FREE kitty, but Christi really NEEDS this cat.) Our vet told Shayne that she has seen many times where the pet takes on the sickness of the owner. So, on Wednesay Shayne's Mom drove Buttercup two hours to Columbus to be seen by a specialist. On Friday she had surgery and they removed a mass. They are sending it out to find out the patholgy. (This is sounding really familiar – like I just did this 90 days ago with my daughter!) Buttercup got along just fine and will get to go home on Monday.

Christi is clueless about all of this. When Shayne's Mom came into the room we were talking in code about "getting the package delivered to campus" so that Christi wouldn't figure it out. Shayne's Mom works for the post office and Christi knows she delivers a lot of packages this time of year. Get well, Buttercup!! We need pet therapy to continue until Christi is stable.

Well, I'd better get back to the room, gather up my things and jockey my place in line for the good shower this morning. I'm still sitting here in my pajamas while Shayne and Christi sleep. I'm typing on a very slow computer here in the parent lounge, but I wanted to get this on the web site soon so that everyone would know we're just fine and will be home early next week! I apologize if I worried anyone. Praise the Lord all is well and we'll soon be home! I love and miss you all and thank you for your constant prayers as Christi continues to march forward in this uphill fight. Thank you for coming along and fighting with us. I read an article I found here the other day about support boosting immunity. Low immunity is enemy number one, so thank you for continuing to keep our spirits high and supporting us in this fight! You are all awesome cheerleaders and we thank you from the bottom of our hearts! God bless you! Have a great weekend!

Love to you all,
Angela

[Top]