Journal Entry


Sunday, January 12, 2002

Greetings! I hope this finds you well!! Overall, we had a very, very good week! We miss you all very much and it's been harder than we ever expected to be away from home; however, we're THRILLED to be here for Christi's care and we are POSITIVE that we made the right move!! This week she did have some nausea, pain, discomfort and irritability at times due to the treatment; however, it was so much better than we ever expected!! She only ever actually "got sick" to her stomach two times. I've been meeting many NB parents now and they've been amazed at how well she's taking this chemo. They've told me that their children did the same exact chemo and were so sick. (Thank you, God! We're singing Your praise! Thank you Prayer Warriors!! Keep Marching, Please!)

Sunday night we wanted to get Christi a bath prior to her treatment week. As she got undressed for her bath, the full magnitude of what we are putting her through stood there as a stark reminder. Not only does she have a broviac tube in her chest and a back scarred from the original biopsy surgery but she also had four bandages on her hips from bone marrow biopsies, a dressing on her groin from the stem cell harvest cathader, bandages on both legs and arms from her daily nuepogen shots, and as if that was not enough she now gets finger sticks in order to get blood counts. Sadly, we know that the damage on the inside is far worse. We pray that all her wounds seen and unseen heal when we emerge from treatment.

On Monday, Christi started her intense chemo. Shayne and I were literally shell shocked as we watched the beautiful and talented nurse, Gail, put up a QUART BOTTLE of Cytoxin! (She only received a small pint size bag of it in Columbus. I thought, "I can't believe I'm going to let them pump this through her." However, knew it had to be done. I also pondered why something potentially deadly is clear and pure looking like water. Amazing! She was tired and nauseous but handled things like a champ! Go, Christi! It was very different having them put her chemo in a heavy backpack and sending us "home" like that for the evening, but it was a blessing to be back here at the Ronald McDonald house instead of in the hospital! This outpatient chemo is definitely the way to go! I think everyone, except for Thomas Team Captain Shayne, slept better here than we used to sleep in the Columbus hospital ever. It was WONDERFUL! The first night Shayne kept getting up to check all of the dials on her chemo to make sure everything was accurate, but he slept a bit better after that first night. We LOVED doing her chemo week like this and now can't imagine why it would ever be done on an inpatient basis. We all do better when we're "home" and not in the hospital. It also showed us that the constant temperature, blood pressure and blood checks that they did at the other hospital are unnecessary.

Tuesday, was a pretty hard day for her. She was extremely nauseous and tired. Finally, they came to unhook her about 6:00PM. (We were there just after 7:00 AM) She woke up and said, "I feel GREAT! Can we go to the toy store right now?" Shayne and I about fell over and wondered where this new kid came from. She was so sick all day! The two nurse practitioners there in our "half of a room" said, "Yes! Go now!" So, you'll never believe this, but with stroller, our bags, her chemo in a heavy backpack (containing three pumps) on the back of her stroller off we went in a taxi to Toys R Us!! (Oh Mom maybe you shouldn't read this! hee hee! But, TWO nurse practitioners said GO!) She wanted to ride the Ferris wheel inside this huge store back last Sunday and we just felt it was too much for her then so we told her we'd come back. (Didn't know it'd be so soon!) She also knew she had her "potty" money to spend. Each time get goes to the bathroom at the hospital Shayne gives her some coins. She's so grossed out about using public potties, but she has to get that toxic chemo flushed out or it could cause serious problems in her bladder so he bribes her with coins and it works. (Praise the Lord!) At this unbelievable toy store she picked out a giraffe first thing for Shayla with her money. We thought that was so sweet. Then she wondered if she had enough money left for a Barbie hair wash item she spied. It was on clearance so we let her get it and then I found a $5.00 Barbie so she could actually play with the hair wash Barbie thingy she picked out. Well, as we were rolling her to get into the check out line, this lady came up and said, "Do you mind if I bless her Barbies?" I assumed she was going to say a prayer for Christi's new Barbie or something so I said, "Please." She talked with Christi for a little bit and then went to the check out counter. I thought that was really odd, but thought, "This is New York." When I approached the counter a bit later that lady was still standing there and she took both of the Barbie items and paid for them. She said that she was a cancer survivor and that she knows our little Barbie will be too. With tears in my eyes I wrote down Christi's web site and asked for her to pray for Christi. Wasn't that so sweet?! in New York!! Totally blew me away!! See Mom! People are nice here! Do not worry! All is going to be fine! And we're being careful! Christi ate really well that night and played with her Bathworks Playset. It was a fabulous ending to a not so good day. And the next day I found out that the kind women who blessed Christi with Barbies went to Christi's website and emailed Wonderful Webmaster Eric. She told him that she doesn't know why she was in that toy store on that night, but God works in mysterious ways. It turns out that she is a Reverend and she will have the congregation pray for Christi here in NYC! Isn't that awesome?!!!!! Thank you, Diane!

On Wednesday, Christi handled the chemo drip like a champ. She also felt well enough to work with her new teacher for the first time. Her teacher worked with her for two hours straight. A Principal in the New York Public School District (The world's largest school district in which Christi is now a student) also observed some of her lessons. He came out and told us she was brilliant. The teacher did the same. The teacher is marvelous, absolutely marvelous!! Her name is Anne Marie and she was extremely surprised at Christi's long attention span and her abilities. She had consulted with me and Mrs. Rombach, but she said that she needed to get more challenging books for the next day. Christi was thrilled with going to "school" and with this teacher's special attention. I only hope that I can be back to school next year and dote on all of my precious students in the same manner. This lady will be a role model for me. What a delight!

That night, as we walked to the RMcD house, we noticed a dog doing it's business on the sidewalk. Shayne said to Christi, "That's exactly why I keep my shoes outside the room and you and Mommy take yours off and line them up inside our room. (We started doing this as the very first night when Shayne was brining our suitcases in here there was vomit in one of the elevators and it just felt so dirty here in the city. We thought that was the best way to keep our room clean. Well, as we walked down our hallway that night we noticed Shayne's wing tips, hiking boots and sandals (to run errands here around the "house") were missing. Christi and I went down to the lobby and asked at the desk if they knew anything about Shayne's shoes (like maybe they were being polished, or maybe the janitor put them somewhere or something). He told us that if it's not tied down around here, consider it gone. Now I completely understand our food being stolen from the fridge and the freezer because there are unattended children running all over here and kids will be kids. They probably got hungry and just borrowed our food, but stealing someone's used, stinky shoes - YUCK!!!! I told Shayne that I couldn't sell them for a quarter at my garage sale and he cut in with, "But it's going to cost over two hundred dollars to replace them." He called his Mom the next day and she's mailing him some shoes from his closet. He had been wearing his sneakers that day. He said to me, "Is this God's way of telling me I need to take better care of myself and start exercising?" There was a movie here for the kids on Friday night and Shayne and I joked all day that we were going to walk up and down the rows of chairs and look for people wearing Shayne's shoes. Unfortunately, the kids were dropped off there and we didn't see many adults with these kids. Shayne and Christi thoroughly enjoyed watching ICE AGE while I spent the up in the room finally talking with my Mom without little ears around to hear things that shouldn't be heard. It was a fabulous break! Almost every day there is like a garage sale outside this house. They sell things left by families who check out to raise money for the house. Shayne checked it out carefully on Friday thinking his shoes may be out in the rummage sale, but he didn't see them. The night his shoes were stolen he put out this email to his friend. I thought it was hilarious so I'll stick it in here. Jeff responded back about something with "Barefoot in the Park" Really cracked us up!!

Email Subject: Bring Back Rudy Giullani..............Crime is back up in NY

Seems as though we've been the victims of a notorious Manhattan crime syndicate. The group is made up of a bunch of "loafers" and others standing on the bottom rung of the economic ladder. The leader of this ring is a real "heel" the notorious "Zapato". (means shoe in Spanish) His sidekick "Boots" has been kicking around the neighborhood lately. Ironically, for entry into his gang you have to have a size 10 1/2 foot. The NYPD (New York Podiatry Division) has the famous gum shoe - Christi Thomas on the case. We've ruled out the Little Old Woman Who Lived in a Shoe and Puss and Boots, but we're still suspicious of the Elves and the Shoemaker. Well, hopefully after they've walked a mile in my "shoes" they'll return the three pairs they stole today from outside our room at the Ronald McDonald house. There's no "lower" level of crime. We are not de-"feeted".......................just barefoot.

Thursday's continued chemo was FINE. She was thrilled to go meet with her teacher again in this little make shift "classroom". Her teacher is absolutely fabulous! Of course to have a teacher come out of the classroom and hug you and keep saying, "Thank you for this incredible gift!" is so kind of her. She keeps calling Christi her gift and Christi says in the classroom she calls her Angel. Christi adores this lady. As a teacher, I'm learning fabulous things from her. She used to be a teacher at the Museum of Natural History as well as a regular classroom teacher before becoming a hospital teacher. She is extremely intelligent and talented. Whether it's the Mom in me or the teacher I don't know, but I must admit that I stand outside the classroom door for much of the time and listen in. I'm amazed at what she's teaching her. She's doing advanced number functions, writing poetry, and understanding alliteration. Pushing her home yesterday she told us, "Do you know that there are ice caps and they're melting?" Christi's best when her mind is busy.

On Friday, our fabulous and wonderful nurse, Gail came to unhook Christi and give her the take home IV backpack pump to maintain hydration all weekend. Christi had tears in her eyes suddenly and said, "But I don't want to go home. I want to meet with my teacher and have school." The nurse explained that she could still go meet with her teacher and that she doesn't need to be attached to an IV pole, she can go with her IV bag too. Christi was relieved and off she went. She was so happy, but the teacher told us she stopped after 1 1/2 hours as Christi was getting tired. They really work hard together. We will have to be at the hospital every Monday/Wednesday/Friday but this great teacher told us that any day during the week that Christi wants lessons to come on over to the hospital and she will teacher her. Isn't that awesome?! She a gem - a rare and precious find!

Thursday was her MIBG Scan. We'll learn the results of that on Monday; however, Dr. Kushner told us not to be surprised if she "lights up all over" because of all of the Neuroblastoma still in her bone marrow. I'm praying it doesn't show high amounts of cancerous cells. This MIBG Scan was unable to be conducted in Columbus and was delayed here because there is a national shortage of the needed isotope. On Wed. they injected her with the isotope for the scan to follow in 24 hours. Neuroblastoma will usually uptake the material and then it is revealed when she is passively scanned. Results from this test can be inconclusive, but it is typically good for bench marking your progress. She had to be completely still for well over an hour. It was pretty tough for her even though Shayne and I were in the room with her. The machine just gets so close to her body and it's pretty difficult for Christi to keep still. I know I couldn't do it. She shed some tears in there and I hate to see her cry. I also noticed that her eyebrows and eyelashes are not completely gone. I thought she may possibly hang onto those, but like her hair - they're now gone too.

Overall it was a long, tiring week but that's no different than any other week has been since diagnosis. On Friday one of Christi's fabulous Nurse Practionors told me that I didn't look so well and inquired if I was okay. Shayne explained that I "just don't sleep as sound as the rest of the Thomas team". Another time, Dr. Kushner asked how we were doing and said that it's tough what the kids have to go through, but it's absolutely grueling for the parents. For whatever reason that made me feel so much better knowing that exhaustion is normal and that he knows what we feel like. He's awesome! He also told us that he'd never make her this sick and put her through this hell if he didn't believe that she had a chance at survival. He said that he would tell us when it was time to pack up and go home. We don't want her to suffer for no reason and he is on the same page with us. Thank you, fabulous Doctor Kushner!!!

At the Toys R Us store this week we pushed Christi's stroller past the "What to Expect" books. Shayne nodded over to that shelf and said, "There ya go. You need to write, "What to Expect When Your Child Has Cancer". I said some smart comment back like, "Yeah. It'd be a real hot seller!" (Childhood cancer is so rare; yet it's the number one cause of disease related death in children.) I then told him that our friends, families, employers and total strangers would need to write the chapter about helping a family get through it. He called his friend Tom to wish him a Happy Birthday this week. While thanking Tom, Tom said to Shayne, "We know you'd do it for us if the tables were turned." Well, that's nice of Tom to think we would and now we most definitely would, but prior to this we had no idea what it was like to have a person with cancer in your family. We would have said, "Let me know if you need anything" instead of what our friends have been doing - "I'm doing this and that's that!!" Now we know to do just that. This has been an incredible learning experience. Three nights this week some charity groups brought a buffet dinner to the house. Oh it was incredibly hard to walk through that line and know that I'm receiving their hand outs. I kept thinking, "Wait! I'm supposed to be on the other side of this line serving you." as I said a most grateful thank you to every person who put something on my plate and the plate I filled to bring back for Christi. I've not just learned kindness and compassion, but lived it. This summer Shayne discussed having Christi start volunteering or at least observing at our sharing kitchen in town. He said with her incredible mind and things coming so easy for her she ought to see how others struggle. Well her eyes have also been opened up as she's seen kindness and compassion brought to her. Never did I think I'd be walking in these shoes and I'm comforted to know there are fabulous people doing kind things in this huge city too! It's amazing!

I'd like to ask that you please keep Andy (the little boy with NB at Columbus) in your prayers. He's really going through a difficult time right now and needs help from above. Thank you! I called his Mom on Saturday night. It was great to get to talk with her; however, I wish it were on different circumstances. On Friday night I spoke with Delaney's Mom. What a trooper! Delaney is doing okay and we really miss Team Delaney and so many of our "old" hospital family and friends.

Thanks to Aunt Marty and Uncle Jeffy for donating blood this week!! While it won't go to Christi, it will be used for 8-10 different people. THANK YOU!! Christi's helping to deplete the nation's supply so it's wonderful to have her Great Aunt and Uncle helping to replenish it! Thanks, Jennifer R. for giving blood as well as Cousin Deb and awesome PCA Shannon and others who have emailed to tell me that you are now donating blood because Christi has inspired them to do so. THANK YOU!!!!!

Christi made a friend - a beautiful little 8 year old cancer patient who originally treated for her cancer at Rainbow in Cleveland. The family is wonderful and she's been getting together with Olivia and her sister to play Barbies. Olivia was Christi's roommate all this week as she was getting her chemo too.

On Saturday, a new friend from the city - Riva, too me to lunch!! It was the first time I'd left Christi since her September diagnosis - except for the three quick shopping errands and my one time to church. Christi didn't mind that I left and I had a wonderful two hours. She took me on my first New York Subway ride!! (Mom, I promise I won't try it alone!) It was great! THEN we ate lunch in Grand Central Station in like a balcony restaurant over the station! I had the best salad I've ever had - alvacado and artichoke salad. Delicious!! Oh, it was so beautiful and way too cool! This lady was a breath of fresh air for me. She's the nicest person and definitely one of God's angels on earth! Thank you, Riva!

While in between cycles of chemo and relieved of responsibilities of work and a house, Shayne is trying to get physically and mentally recharged. He bought a book by Rudy Giullani and is back to reading a newspaper daily. After a four month lay off, he made it back to a gym on Saturday. I just hope Christi stays well long enough for us to feel recharged when the bad things start to happen which should be any time now.

Today (Sunday) I went to the gym and then to a church not too far away from the house. When I returned back here Christi was still wrapped up in her Barbie blanket resting. I pray that she has a good day and that tomorrow's hospital visit will be a good one.

It's very hard for me to fight back tears as we walk to the hospital every morning right beside children walking to school with their backpacks. Christi has a backpack too, but it wasn't filled with great books just hazardous chemo. It doesn't seem fair! There is a public school directly across the street from the hospital. I often find myself looking over to the school and to their playground. It's really hard knowing how much Christi and I would do anything to be back at our awesome school! This weekend, her backpack is just filled with maintenance IV fluid running into her chest! We've loved this outpatient stuff. I'm amazed at how it all works. Back in Columbus she was continually occluded. (Where she'd get all twisted up and her tubes would block until a nurse came and fixed it.) It's never happened once here and in Columbus her batteries on her IV pole would never last long and she'd have to get plugged in to the wall. For whatever reason, these batteries in these backpacks are awesome. This hydration will run until Monday morning and it was started Friday afternoon. That's a long time to be running on batteries!

What to expect next............(Well nothing is for certain with this dragon, but......) They expect her to spike a fever about Tuesday or Wednesday. We're in "lock down" (hee hee - isolation) now. She'll then need to be admitted to the hospital when fever hits. They said it's guaranteed to happen. Then after that discharge, she should have a week to recover, we'll check the marrow, get more transfusions and then whammy, more chemo. She will be getting chemo every three weeks instead of every four weeks here and more transfusions than ever will be needed. So sorry this was so very long!

Hugs,
Angela

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