Handing Over Her Crown!
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Friday, February 10, 2006
“Handing Over Her Crown!”
Two Miss America’s Meet! (Christi with Jennifer Berry – Miss America 2006)
How can I possibly update my journal entry with all that has happened in recent days? I can’t. I’ve received some emails telling me that they are not able to access Christi’s blog; therefore, I’ve decided that I shall just cut and paste the blog entries here to bring anyone who hasn’t been “in the know” up-to-date.
Thanks for checking in and for your continued love and prayers! You keep us going!
With gratitude,
A heartbroken Thomas team Mom
Monday, January 23, 2006 Praise God: A Great Day!!
Prayers were answered on Sunday! As the day progressed, Christi continued to feel better and better - only needing one nap. She wanted to go ice skating in Fremont Sunday night so we called her teacher (and our good friend) to see if she could join us. (Her teacher has many talents - and they include ice skating!) Unfortunately, Mrs. Smith couldn't make it, but that was probably best as once we arrived we learned that the rink was closed because their zambone was broken. (And the girls had so much fun with that name we were still rhyming words with it on the way to school this morning!) "The zambone started throwing out balongna."
Today was a FABULOUS day! Her eyes only hurt a little bit and no headaches she said. She attended a FULL day of school (without sleeping in Mr. Smith's chair!) went to Girl Scouts after school, sat through an hour of my cheerleaders' ball game waiting for Shayne to pick her up and then went to an hour long gymnastics class. Whew! Thanks for lifting her up in prayer! Another brave little NBIV relapsed girl who just finished her second round of this same hu14.18 - IL 2 trial could really use your prayers. She's currently in ICU for problems which developed during her third day of the treatment. Her website is: www.caringbridge.org/tn/madelyn
I'll post tomorrow after her blood counts are checked. (I'm quite nervous about the LDH level.) With Christi now feeling better, so are we!! Praise be to God!!
Tuesday, January 24, 2006 Tuesday's Blood Counts - Soaring LDH!!!
Although her eyes are still "puffy" she had no complaints of pain before school today so thankful was I that Little Miss Christi returned for a second full day (Praise God!). After school she told me that her legs were hurting a little bit. (Yes, setting "fear" into this cancer parent's mind!)
Today's blood counts were drawn out of her mediport after school at the hospital. I thought all was well and she went off to her two hours of dance lessons - until I got the hospital's call while she was at dance lessons. My heart dropped when discovering the LDH number. I said, "Oh no!" They responded, "Yes, we've already notified Philadelphia." hgb. 11.0 platelets 150 (Praise God - she's still in this fight!!) ANC 2,100 white 5.1 LDH (The "activity of cancer cells" one) 908 (highest ever!) Normal 100-190. It's DOUBLED since her original diagnosis - 9/2002. My heart is heavy and my stomach queasy. I will hopefully hear Dr. Maris's thoughts by morning. I remember him specificially telling me not to be concerned if the LDH was elevated soon after treatment, but now it's Day #14. Ugh! I'm scared! AST 61 (15-37 normal liver functions) I think we're okay here now. ALT 58 (30-65 normal liver functions
PRAYER REQUEST: That tonight's LDH number not be an accurate indicator of the aggressiveness of Christi's cancer. Lord, hear our prayers.
Wednesday, January 25, 2006 Response from Dr. Maris
It was a sleepless night! Now that I look back at her eyes & face during her treatment, I see that things are better now. I called CHOP during my lunch break today and spoke with Nurse Practitioner, Pat Brophy who calmed me down about the LDH and the "eye thingy" after telling me that they studied the photos I sent of Christi's eye.
Sweet, sweet parents on our NBlistserv support group sent me pics of their children with their oribtal involvement and many "pointers". (THANK YOU!)
The following is the email from Dr. Maris which also makes me breathe again! "Hi! While I will never pretend that these sort of things do not concern me, I think it is very, very likely that the LDH is directly related to theIL2. LDH is definitely known to go up after IL2. I also think her eyepuffiness is IL2 related. Obviously, if these things do not get better,we can consider doing tests before her next infusion, but I am veryhopeful that this will all go away in the next week or so. Give Christi our best wishes."
So we shall have her counts checked again next week and we shall pray that the LDH is normal and that her eyes "calm down". She had another great day at school and will soon be heading out to CCD (relgion class) which she just loves too!
Thursday, January 26, 2006 Interview with the American Red Cross
Despite some off and on headaches and problems with blurred vision and sore eyes that come and go, Christi really does feel very well and is happy and full of energy. (Shayne and I are quite concerned and worried, but that goes without question, I guess.)
Today, during her recess break, she was interviewed at our school in my classroom by a women from the American Red Cross. Christi is going to be featured in an upcoming issue of "The Gift" which is mailed to 50,000 blood donors. Recipient of the Red Cross's highest honor - the Clara Barton Award, for volunteerism Christi happily chatted with the reporter.
"I wish my cancer would go away and I wish I had a Siamese cat." She also chatted about her best friends Kaylyn and Theresa and listed many favorite subjects when asked: math, science and social studies. This weekend she will write out her valentines since we don't know if she'll be back home for Valentine's day or not.
Friday, January 27, 2006 New "lumps" Well, burying our heads in the sand was fabulous, but we can't do that any longer - the reality is now facing us "head on". Yesterday after school I noticied Christi kept rubbing her head while she sat reading yet another chapter book at the kitchen table. When I asked her she told me, "Theresa found a bump on my head at school today." (Oh, talk about your heart dropping - hearing of a new tumor is never a good thing.) I asked her if it hurt and she said, "No, not the big one, but the little ones do." (OK - double whammy! What a shock!) With heart racing, I called Shayne and said, "I'm sick and you're about to be." We decided to keep an eye on it because she still feels incredibly well - laughing, playing, joking, staying up late and eating very well. (I wasn't able to sleep at all last night. As soon as I'd start to fall asleep, my body would jolt me back awake.) So, I just emailed Dr. Maris and we'll see if they want us to come to CHOP earlier to scan, change plans, etc. She continues to have off and on headaches, blurred vision and today lost her balance at my friend Shari's home as she brought her home from school after lunch with a headache.
Well - just in: Dr. Maris's email:
"I am very sorry to hear this. I am still hoping that this is nothing, but I think we should see her next week and set up a MIBG scan also. If things getbetter over the weekend, we can hold off, but regardless it sounds like we should do an interim disease eval.whether we go with cycle #2 or not. If we decide that the disease is worse, we will come up with an interim plan. I am available this weekend if something changes. Hoping for the best, but preparing for not the best, jmm"
Saturday, January 28, 2006 Power of Prayer
The little "bumps" are gone for today. How about that for the power of prayer?! Will they be back tomorrow? Who knows, but for today - we celebrate! (Unfortunately, the larger one right on top of her skull is still there, but it's not huge and she hasn't had a headache since Friday morning.)
Christi continues to feel very well and that makes the rest of the Thomas team feel great too!! Being blessed with such fabulous weather, the girls jump roped and rode their bikes outside. (Yes, that is Buttercup riding in the Burly trailer!) As Christi raced down the driveway without a jacket, in just a yellow sweatshirt (in January!!) it reminded me of another cancer fighter - only that one wore a yellow jersey. And you haven't witnessed anything until you've seen Shayne hopscotch!! What a great dad, what a great day! Speaking about her awesome Daddy, today Christi also created pottery with Shayne and the girls put on a darling puppet show for us.
I booked our flights to Philadephia this morning. My friend since kindergarten, Shari, will be going with me which will be great emotional support. When Christi was about 3 or 4 she used to have us call her "Christi Depinet" because she loved their family so much she wanted to be a Depinet too! (Always cracked us up!)
I'll pick up Shari about 4:30 AM on Tuesday and I should bring her back home no later than 11:00 PM on Wednesday night - that will allow Christi & I to return to school on Thursday morning. (Wouldn't want her to miss any more school than necessary! Christi loves being there and goes every day she possibly can - not too shabby for being terminal!) Christi will be examined by Dr. Maris, have blood work, her isotope injection and the dreaded MIBG scan on Wednesday. Her face is still puffy - while silly for sure, I'm still hopeful it's from her treatment over two weeks ago and her one eye still isn't "right".
Sunday, January 29, 2006 Feeling Great - Let's Skate!! Without a doubt "something bad" is brewing, but what is the extent of it and how does it impact the rest of this journey? I don't know - only He does. So we'll put our trust in Him and enjoy every minute of every day we have together! She is one awesome little gal!!!! We are so blessed with these precious gifts - Christi & Shayla!
The bumps (four total) are back in full force today. She woke up with a headache and with her left eye hurting in the middle of the night; therefore, Shayne and I were unable to go back to sleep, worried sick. I've cried more in the past week than I think I have in the entire three and a half years of this battle. I've tried to be strong for so long - years actually, but now I find myself crumbling to tears many times each day. Shayne and I cuddled on the couch in the middle of the night whispering to each other and trying to get back to sleep, but really couldn't. We love her to the moon and back and just wish we could trade places with her. This is so unfair! God has yet to buy into our plea bargaining.
I'm haunted by the "bumps" - about the size of half dollars, a bit smaller and most sore to the touch. (The newsest one at the top of her forehead - disgusting!) And her eyes just don't look "right". I can't really put my finger on it, but I know how this disease loves to attack the orbits of the eyes so that is my fear, and I think come Wednesday's MIBG scan we'll learn that I am not wrong. Around her eyes, they're "puffy" and a bit discolored and enlarged, yet the color of the eyes themselves still a beautiful white. What a doll! This disease is so ugly harming our darling girl like this; how I despise it. I've seen so many children lose their sight because of this horrible cancer and I hate to have her suffer through that too.
With temps in the 60s again - a pleasant Ohio January surprise, Shayne went out for a long afternoon run while Christi and I made peanut butter cookies. (Why does she love creating sweets, but not eating them? There goes that heathy eating plan of mine - again! Smile.) She also created some "Click-It's" sweet Peggy sent and played "Jump Start Advanced Fourth Grade" on the computer. She really feels great and for that we rejoice!!
Realizing that we might as well make the best of times while she continues to feel well she wanted to go ice skating with her friends so we called Theresa and Kaylyn to take them skating. Kaylyn was around and able to go so the girls had a great time together while Shayla took three of her first grade buddies! As you can see from the photo, the girls were darling trying their best to stay upon their feet (or I mean "blades"). Fremont's sweet Jennifer, Michele and Mrs. Lehmen also joines us there - so kind! Great memories, forever to be treasured!
I just sent "Webby" my journal entry and I'm certain Eric will have www.ChristiThomas.com updated with it soon. I'll try to update this blog from Philadelphia. As always, your prayers for strength and wisdom for Dr. Maris, Shayne and I, and for Christi to remain painfree and content are greatly appreciated. Lord, hear our prayers!
Monday, January 30, 2006 Another Day - Another "Lump" The punch to the stomach "hit" early this morning - as soon as I woke Christi up. I asked her how she felt and she said her jaw hurt. I felt it; sure enough - another blasted lump! Sickening! It appears this is a now a freight train and I can't think of any treatment strong ehough to stop the beast now. I cried until my first class of students walked in. I'm so tired, yet I can't really sleep. Maybe tonight (Oh, I'm getting up at 4:00 AM to get to the airport, maybe tomorrow - oh, that will be the Ronald House - hopefully, and I never really sleep well there either. Hopefully, soon. I feel beyond exhausted - yet can't truly sleep. I'm so scared.) The only comfort I have right now is that she really feels super! Praise Him!!
The pic was taken of Christi with her sweet class at school today.
CHOP called today to inform me that again - for the third time, our insurance company is denying this latest clinical trial (Just like they did the last three types of treatment.) because it is experimental and unproven. (So, how is the cure going to ever be found?!) I hung up and immediately called my "Personal Banker". "SHAYNE!!!!! I have to go to a financial meeting tomorrow at CHOP to set up payment plans!" Thankfully, I came home from work tonight and learned he called them and is preparing the needed papers so I don't have to go to any meeting on finances. (Whew! Another great reason why I sleep with my banker!)
Christi's teacher told me today that during "Morning Meeting" she spoke about her cancer - something she rarely, rarely does. She said, "Tomorrow, I have to go to Philadelphia for Dr. Maris to tell us if this chemo is working or if we have to try something different. I don't want to miss Valentine's Day." (She did freak out for a moment while making the valentines this weekend and state that she did not want to miss her class valentine's party because it's her favorite party and she really wants to be there. Oh, why can't she just be a normal kid and not have these worries?!) When the classes suggested mailing their valentines to her, it didn't seem to satisfy her, Caroline said. (We should know soon; I pray she's back home and in school - time will tell.)
I am sooooooooooooooo incredibly grateful that my friend, Shari, is going with us tomorrow. While I wish we'd just be dashing off for a "girls day in Philly" or something fun, I do know that I am truly blessed to have such a great friend to be there with me as I fully expect to learn of the worst news we've experienced thus far throughout Christi's journey.
Tuesday, January 31, 2006 From the Second String Blogger Hello from the second string blogger (Shayne). Angela and Christi are in Philly with our good friend Shari. At this time Angela has limited access to the internet so I will have to try to give a synopsis of todays events. They left the house at 4:30AM after a long restless night for Christi.
Monday evening was somewhat uneventful. We had an extended pre-bed ritual, Angela read and finished her bedtime story (Millions) then I read and finished my book (Captain Underpants). We hate to finish books separtately because we feel left out. After stories Christi and I layed in her bed and joked and giggled for about an hour, I fantasized about these symptoms being phantom disease or just an allergic reaction. Our little inside jokes are what I am going to miss most. One is that she kicks off all her covers and says "Daddy tuckey me" which I reply " I can tuck, daddy KenTucky". Then I ask all her stuffed animals if they are Dutch and Pekachu replys "No I'm Japanese" We don't really remember how they got started, however, it is part of the light hearted humor that gives our home its rythem.
Shortly after we settled in and fell asleep Christi began to complain of pain. I sat and watched as she rolled and tossed, holding her head, rubbing her eyes, sitting up and then flopping over. She was exhausted yet in pain. By 3 AM I knew we were in for a dissappointing trip to Philly, this could be nothing except full disease progression.
Angela, Shari, and Christi flew to Philly from Cleveland (thanks Lisa). My contact with Angela throughout the day was sporadic, however, I could tell that Christi was slipping. Before they left Christi reported pain in her jaw, eye, top of her head, and part of her face which was sort of numb.
After visually observing Christi's bumps and lumps then seeing that the LDH markers had nearly triple to over 3500 (420-750 normal) the nurse practitioner affirmed our fear. The disease is spreading like wild fire. Our decision was to consider whether we should treat or just take her home. No clinical trial could be arranged fast enough to have a chance of stopping her disease progression. Something needs to be pulled off the shelf ASAP.
So through the generous help of a fellow NB fighting family the girls landed in the Four Seasons hotel downtown Philly (not bad ehhh?) for the night while we await the MIBG scan tomorrow. After the scan results are known we will have the most significant discussion of our lives with Dr. Maris.
"I'm Just So Sad" Shayla was up at 4:15 AM to wish us off. (Boy how I love that sweet, adorable thing!) Christi woke up after a rough night with a numb face - mouth, nose, cheeks, etc. I picked up that dear, dear friend I'm not worthy of and off we went for the airport. As I drove into the village in complete darkness I wished it would have just been another sleeplessnight for me - a night when I drive in to that village to work in my classroom to help me cope. Unfortunately, we were not able to go to school today.
Sweet Shari was amazing help right from the very beginning - with Christi's first of many vomitting episodes for the day. (Car sickness just north of Republic.) Wheel chairs were needed at the airports as she not only looks horrible, but is oh, so tired. Shari couldn't believe the rapid decline from Friday either. It'shard to believe it's the same child - Christi Thomas!
Her counts were fine at 5.3 white, 150 platelets, 9.2 hgb. (low) with an anc of 2820. Nurse Practitioner Pat looked at her and said that she "Looks different than she did on Jan. 17th." When I asked her if her face situation could be anything other than cancer, she couldn't imagine that it was anything, but neuroblastoma. She did remind me that the one predictible thing about neuroblastoma is that it is unpredictible. She also told me that she "was worried." Christi's been so sleepy. Pat noticed she was whincing while eating because it was hurting so much. She complains of headaches, seeing double and keeps feeling "her bumps" which hurt to the touch.
Thankful was I to finally meet two of our wonderful support group families!! I've followed their little one's journeys with replased neuroblastoma for a long time as they captured my heart and touched my life!! Please lift them up in prayer! They are in great need too!! This disease is so horrible. I looked in their little precious eyes today and couldn't possibly imagine why they had to suffer with this beast - and their wonderful families; heartbreaking! http://www.caringbridge.org/pa/carterfinger/ http://www3.caringbridge.org/ny/penelope/
No room at the Ronald McDonald House and no room at the Penn Tower Hotel I was getting nervous about where we were going to spend the night. An amazing rescue from parents who would walk to the end of the world to save their little princess from neuroblastoma, but unfortunately don't have that option, put us up in the lap of luxuary! (Never before have we stayed in a 5 diamond hotel; it's lovely!) I guess only the very best for our Neuroblastoma Princesses!! (Thanks, friends!! Your little one is soooooooooooooooooo blessed to have YOU!)
Then it was back to Wood Center to learn of the LDH level and to have her port deaccessed - no such luck, it's still accessed! I asked the nurse to stop and not remove her port until I heard the LDH number. When I heard it from Pat I truly was shocked - from a very high 1,150 on Jan. 11th to 3,508 today. I'm sick, absolutely sick. I have never heard of any child having an LDH that high. (NB friends, please email if you can give me some hope. 3,508!!!! NO!!!!!!!!!!!!!!!!!!)
This is the indicator of the strength of Christi's disease - truly spinning out of control at a very rapid rate. Pat told me that my plans should include NOT leaving Philadelphia as planned for tomorrow. They anticipate admitting Christi tomorrow to begin some high dose chemo in an effort to help get Christi "comfortable". (When I started my morning off yesterday asking Christi's teacher to take lots of pictures because I feared it was going to be her very last day of school, I told myself - oh, come on, she'll be back. Now I think I may have been right.) After sharing the LDH level Pat told me that she is now more worried than she was just by looking at her earlier and she told me she'd pray for us tonight.
The treatment will be decided (or told to me) at 10:30 AM with our meeting with Dr. Maris. He doesn't want to make a final decision until the 9:30 AM MIBG scan, but at this time he anticipates using a chemo cocktail of carboplatin and etoposide. He doesn't believe she has the 4-5 weeks needed to get into a trial - she needs something hard and something NOW. When I questioned Pat on this combo she told me that there "may still be a benefit". (Christi has never had a response to high dose chemo and she's had VP-16 before. The carbo would be new - it's also a drug known for creating hearing loss.)
Shari has been a GODSEND!!!! THANK YOU, dear Lord! I've been able to run and get food, call Shayne, cry my eyes out and - hey, update this blog tonight! All things I could not have done by myself. Oh, how I love her so!!
With Christi resting in the waiting room with her eyes closed (One is nearly completely sealed shut at times - the right one. The other is buldging forward as well, so ugly.) I knew I had to tell her what was up. After complaining about her eyes and walking with them closed and me leading her today I told her, "Christi it looks like the cancer is spreading all over your head and that is why you are swollen and hurting so much." The precious 8 year old panicked and said, "WHAT? WHAT?? What do you mean?" I explained the best I could. Later tears were pouring down her cheeks. I wiped them away and told her that it looked like we'd be starting high dose chemo again tomorrow and our lives were going to be changed again. I told her that all decisions would be made out of love for her and that we would all get through this together. With tears falling (hers and mine) I asked if she hurt and was in pain, or if she was sad. She responded, "I'm just so sad."
Wednesday, February 01, 2006 Off to CHOP
The girls are up and on their way to CHOP. Sounds like they had a restful nights sleep at the Fours Season. Christi has double vision and must cover one eye in order to see straight. Angela snapped this photo from her cell phone.
Our friend Tim from The Philadelphia Mint is going to pick them up from the hotel. This saves Christi from taking another aweful taxi ride. She gets so car sick.
The scan is at 9:30 so I imagine that is going to be very ugly. They start at the head when they scan so this will get nasty quickly.
Last night when I told Shayla that Christi's disease had spread and that she may die, Shayla asked if it had spread to her heart. (I too am anxious to know if it has spread to any of her organs.) As I hugged Shayla she said "Dad, don't forget EASTER" I replied "Shayla I don't understand what you mean" She said "Easter is about HOPE and Easter is coming"
Shayne So there it is...... The amatuer reading of the MIBG scan is that the head is worse and there are a variety of new spots. This confirms what we have suspected for a few days. Next we will get with Maris and talk game plan.
This photo was snapped of the computer screen by Angela on her cell phone. The bright areas on the top of Christi's head is disease. The shoulder, knees, and pelvis is all disease. There is normal uptake in the abdomen and salivory glands so I can not be sure what is going on there. That will key to understanding our predicament. Sounds like there may be extensive sinus involvement. I will post when there is a difinative plan in place.
Shayne The plan...maybe
We now have oral confirmation from Dr. Maris that the disease is much much worse. The liver may be involved and they are doing a CT-Scan to determine if the disease is in her brain. After the CT they are going to admit her to get her pain under control. The recommendation is to start Topotecan Vincristine and Doxirubican today. There were a few other options, however, we felt it best to allow Maris to just call this one. In the long run we may not beat ourselves up as much and that may just be better on several levels. Very clearly, we asked to be informed if we were giving futile treatment. We can not be selfish. Maris gave us his word that he would let us know if that were the case. On the other side of that issue we also stated plainly that we were willing to bear any cost in time, money, and effort to give her a shot at another good year of life.
Thank you for your continued support. Hopefully, your regularly scheduled blogger (Angela) will be back online tonight. I put a picture of Christi on top that shows her undaunted by the disease...the thought of the disease overtaking her is too much to bear. Shayne Maestro
A maestro is a title reserved for someone who is a master of their art. It was justly used for retiring Fed Chairman Alan Greenspan. When I received this photo moments ago the word just popped into my head. Parents of cancer kids make many difficult decisions perhaps none as important as where to treat and with whom. I think we got at least this one right.
According to Maris the disease has NOT, as visualized on the CT-scan, entered the central nervous system. It is a very small victory, but, helps our odds slightly.
The plan is to start the Topotecan Vincristine Doxirubican (TVD) now. Hopefully, in a few days Christi will feel some relief. In addition to disease in the frontal skull it appears that Christi has managed to get a pretty severe sinus infection. Antibiotics will also be started immediately.
Logistically Angela and I are working out our plan. Christi will be inpatient for a week (however as of right now the hospital is 100% full). We need to get poor Shari home to her family at some point and I will be heading out to philly as soon as we get this all figured out.
Shayne
A very long day
The girls are tucked away on 4 south at CHOP-this is not the oncology floor. There are 67 oncology patients in the hospital tonight-we just need to find a cure! Shari is at the RMH and will relieve Angela in the morning, meanwhile, I will be flying from Cleveland at 12:30 to relieve Shari. (special thanks to all who offered to drive, fly, give up airline miles, or otherwise transport me to Philadelphia. I was very moved by everyone's offer of assistance.) Our dear friend Lisa has made all of my travel arrangements-Yeah Continental.
Christi is feeling more comfortable tonight, mostly due to the morphine. She received her Topotecan tonight as well so lets pray that it is doing a number on the disease. Angela and Shari are hoarse from reading to Christi non stop today. Even under all of this duress Christi needs her mind stimulated-what a wonder she is......
Liz Scott mother of the famous Alex Scott was in on the action today and apparently relieved Angela and Shari while they checked into the RMH. She is pictured with Shari in the photo. Shayla seems to be taking this all in stride at the moment. It was her 100th day of first grade (photo). That was a much more interesting topic to her than was the fact that I was leaving her. My mom will be quartebacking her care. Those who are seeking time with Shayla during Shaylauary (birthday is Feb 12th) please coordinate with Joan. She is in great hands with Mrs. Rombach the school day as well (reminder- Christi was in Mrs. R's class when she was DX, when Christi was in isolation Mrs. R. would stop by and tutor Christi, after we went to NYC she kept in constant contact with Christi with wonderful greeting cards-she is a selfless saint http://www.christithomas.com/images/MVC-005F.jpg)
That's all for now. I promise to have Angela back in touch with her keyboard tomorrow.
Shayne
Thursday, February 02, 2006 Daddy's here!
"I'm glad you're here." (One of the very few sentences out of Christi's mouth today.) Pause. Disturbed look. "Who's watching Shayla????" (Cracked us up!)
Never will I forget Shari's kindess of just being with me during my darkest days. It's hard to believe that someone I became friends with back in kindergarten has remained my friend ever since. God is good! Shari arrived safely back in Ohio tonight and only called to ask, "What row did you park in?" trying to find my van at the airport. It's fabulous to have Shayne here and I called home to chat with Shayla tonight - she was SOOOOO happy that I arranged for her to have an overnight at a friend's house this weekend and that Grandma bought her new tennis shoes. She sweetly asked how Christi was.
I wish I could say that Christi is doing better, but sadly that is not the case at all. Other than a few minutes here and there, she has been flat on her back the entire day. Shayne was disheartened to see a dramatic drop in her appearance over the 48 hours we were apart. Again she wanted stories read to her, but her eyes are closed and she's been in a lot of pain. With three adults all reading to her today, we started and finished three chapter books. I cannot believe how rapidly she has declined - all before my very eyes. Sickening! When I left her tonight she had on a "gel mask" that Shayne bought for her on the way to the airport today to give her eyes some possible comfort. Her last words to me before I left to come back to sleep at the Ronald McDonald House tonight were, "I can't see and my nose is bleeding." (Ah, now I'll sleep so very well back here, won't I?!) I am reminding myself that she is in the very best of hands!!
The morphine really wasn't cutting her pain so we've added dilaudid which is possibly working better. I hate to have her on some many meds, yet she really is miserable. The "vomiting festival" is most likely yet to begin. Today she only threw up one time during her chemo infusion - day #2 of five days. (Of course she's not eating either. Yesterday it was an apple and crackers, today two strawberries and popcorn.) I'm making up for her though - the Girl Scouts in Philadelphia are delivering their cookies much earlier than the Ohio scouts and thanks to the Grants' care package, I'm supporting scouting! (Smile). (Tim's drive to the hospital was amazing!! Unlike every Philly cab Christi's ever ridden in, she didn't get car sick. He took her "slow and steady wins the race" suggestion to heart and so carefully and smoothly delivered us from the other side of the city right to CHOP's door yesterday!! Amazing, careful and very contentious driving - what a blessing!)
Today I asked Dr. Maris to see the CT scan of her head. He told me it was very disturbing and quite frankly I think that was sugar coating it. What I thought were large bumps pushing outside of her head are nothing compared to the larger ones pushing in. I was dumbfounded how she cannot be having more pain after witnessing the CT on the computer late this afternoon. The report says many things, but basically: multiple skull metastases including bilateral orbits. One lesion is 3.1 cm by 2.2 cm - pretty big for a little girl's head. HOW I HATE THIS DISEASE! The entire skull is PACKED SOLID with disease according to my eyes on her CT images. (Dr. Maris explained it to me that the skull is like a helmet so all of the bones make up the skull and that is why she is having jaw, tooth, and cheek pain in addition to eye and head pains.)
The MIBG scan was just as ugly in print as it is here on the blog: multiple foci of increased update with multiple new lisions in the following reigions: throughout the skull, posterior left upper chest, right proximal and distal humerus, right elbow, left proximal humerous, mediastinum, thoracic and lumbar spine, bilateral pelvis, bilateral proximal and distal femora and both proximal tibia. Previous focus appear more intense on today's study. So after reading all of that I ask myself, "Where doesn't she have cancer???" Impression: widepsread metastic disease withsome new lisions indicating progression of the disease.
Thankful I am that Shayne is here. Thankful I am that our computer is here. And thankful will I be when Shayne (hopefully) gets it up and running tomorrow so that I can check my email and update her blog with great ease. I'm praying that tomorrow her meds will kick in for pain relief, relief from the sinus infection and that the chemo will work and will reduce this disease and the pain it is calling this little sweetie pie. What a gift she has been! I rejoice for 8 1/2 wonderful, years even though I want 8 1/2 more!!
Small Step Forward?
Christi woke up about 8:00 AM and has been awake ever since! We put together a horse puzzle, played Connect Four and Monopoly Jr. and now (as you can see) she's playing a keyboard I found in the playroom. She's had a banana and hot chocolate.
The resident greeted me this morning with the fact that her phosperates (Sp.?) are high and they've started two different meds to help bring those salt levels down. When I inquired more I was told that they're not that high; it's not an emergency situation but they want to get them down before it becomes serious. Since this is a new problem to me, I'll be trying to learn about it, but as it was explained to Shayne and I out in the hallway this happens when tumor cells are dying. (The nurse behind the doctor had a huge smile on her face!) Christi's eyes are hurting her today, but the left one looks better. She also said that the numbness in her jaw, mouth and cheeks is not much today. (PRAISE GOD!!!!) She's been laughing, giggle and awake - back to her old self. (Now we pray it lasts ALL day! She's so much fun - even if she wasn't thrilled that I didn't pack her piano music. I can just imagine how the nurses would laugh to pull that off of their fax machine!)
Her blood counts were okay. Platelets have really fallen - now down to 100. Hgb. 11.3 white count down to 3.1 with an ANC of 1600. Today's chemo will begin shortly. "A Great Night" Waking at 6:00 AM with worry, I debated what to do. With rain pounding the roof of my room at Ronald and knowing the first shuttle van to the hospital doesn't leave until 9:15 AM I had to make a decision. I decided to go for it - walk about 12 blocks in the rain to get back to Christi. Actually, after searching at Ronald for a few good (I'm picky) chapter books to read to Christi today the rain wasn't too bad. I called Paw Paw on the way. This fourth floor has signs which say "No Cell Phone Use" and finding Internet access is difficult. The first night up here I was using the computers outside of Christi's room I typically use and a nurse walked up to me and said, "I know you're from 3 South and they let you use their computers here, but this is fourth floor and you can't use them." So, I asked, "Exactly when do you intend to move my daughter down to oncology ?" I was assured that they are doing everything possible - (smile)! Needless to say, we're still here and I know I should just be thankful that we even have a room. "The inn is full!"
I walked in with Christi and Shayne both crashed sound asleep in their room. I went to find Christi' s nurse to get an update and caught her just before leaving. She said, "Christi had a great night. About 4:00 AM she woke up and went potty and she and her Dad were joking and goofing around for quite a while." Whew! I asked how her eyes look and was told that the right one is definitely worse than the left. I'll help myself to her chart as soon as I can locate it. (smile) So - just wanted to let you all know what was up with last night. I'll try to keep you updated later today. Meanwhile I'm getting our laundry done since I just found an open machine. I"m anxious to see a little smile out of Christi and to get started with some new books!! (It was painful for her to talk - cancer in her front skull bones, so she created "signals". Thumbs up means - quit talking and start reading! (Gotta love that gal!)
Score: Prayer Warriors 2, NB 0
Christi continues to improve today. Score one for the Prayer Warriors. Cameryn's dad came to visit with a build a bear and a hand delivered note from her "Chatty Cathy Club" friend.
Christi chowed down an entire happy meal while getting her 30 minutes of topetecan.
She has been in the play room nonstop and now has special visitors. The Grant girls are here to play. (photo)
Her chemistry panel has balanced itself out very quickly so several medicines have already been discontinued. Another score for the prayer warriors. Shayne
Friday, February 03, 2006 God's Special Doll!
God has certainly shown His light of love upon our little one. (And so have God's sweet people - some of whom we've never even met! Note the brand new American Girl Doll - Jess, in this photo. It was sent here today! Unbelievable joy! When Christi screamed with delight I told her, "Shhh! The nurses will come running! THANK YOU!!!) The past 24 hours have been entirely different from the previous 48! Whew! While we won't really know of her response to this chemo attempt for a few weeks, I truly believe the modern medicine is working. Today she kept her eyes open the entire day. She says they're still sore, but much better. Her headaches are gone - for today anyway. Dr. Maris said if she feels as well tomorrow after the chemo, he'll give her a "pass" (get out of jail free card, I think) to get out of the hospital for a few hours to give her a break from this place. Yahoo!!!
THANK YOU to my Internet friend of three years from Philadelphia- and one who knows first hand what it's like to treat your child's cancer in a far way city - we are enjoying a home cooked meal tonight! Andrea's own child (Matthew) has been bravely fighting a nasty brain tumor for much longer than Christi has, yet she always reaches out to offer her love and assistance to us. Amazing! (Matthew's website is in "Christi's Clubhouse" and he could certainly use additional prayers at this very difficult time!!) It was fabulous to finally meet beautiful Andrea in person toady!!
The conversation I had been dreading came up today while Christi played with the darling Grant girls in the playroom. "Mom, am I going to lose my hair with this chemo?" Trying to be very calm, in a matter of fact manner I replied, "Yes, honey, but it'll grow back and I thought we could get some stylish hats and maybe even some tops with a hat to match." "Can I get a wig this time - like my own hair?" "Yes, and I thought we'd cut yours off and donate it to Locks of Love to help another cancer patient out." "Can they make my wig with my own hair?" "Probably. I'll ask them." "Thanks, I just wanted to be able to tell my friends. And I thought that's why you weren't making me brush these rats out of my hair." Whew! That was A WHOLE LOT easier than I EVER anticipated! Now when the event happens in less than two weeks, it's going to be A WHOLE LOT harder, I imagine - but right now I think she's okay! I dread other kids making fun of her for being bald. She didn't mind as a five year old, but as a fourth grader - it's going to be tough!
Shari told me they're expecting a foot of snow back home tonight, it has been beautiful here..From Shayne: "Record high temperature here in Philly beckoned me to take a long city run. Since Christi was happy and feeling well I hit the streets. I ran through University City, across to the Schuylkill jogging trail, then up to the museum where I ran the famous "Rocky" steps several times, (I remember Christi running up them with hemoglobin of 8.0! fall 2003 then down past boat house row into Fairmont Park. After a nice hard run there is nothing better than stopping for Soul Food from a street vender-fried chicken, rice and beans, and collard greens. My rule for street vendors is that if there is a line then the food must be good. If no one is eating there then buyer beware!" Thank you everyone for your outpouring of love and support during these most difficult of times!! We've been so blessed to have you praying and shaking your pom poms for Christi, our little American girl!
***********WE'RE MOVING!!!!!!!!!!!!!!!!! I've just been informed that they are moving us down to the THIRD floor - oncology!!!! If you've been calling Christi's room she will now have a new telephone number.
Morning Update "I eat an apple a day and he still doesn't go away," was Christi's comment filled with giggles to her friend via telephone as Dr. Maris entered her room yesterday. (What a hoot she is!) Christi's pain meds were completely stopped and so kind was it of friends to call and chat with her yesterday. (I figured my cell phone bill was a small price to pay to watch her HAPPILY chatting away on the phone.)
This morning her spine is hurting. We know she has disease in her spine so we're confident that is what it is; yet, we pray that the disease is not progressing. "That would be grim," said Dr. Maris when we asked if there is any treatment to try if she progresses through this chemo. He said, "I'm confident this is going to work." (Yet, we know that Dr. Maris is typically over optimistic.) And Dr. Maris considers just halting this rapid progression as "working". CHOP hasn't been able to give us the study information yet, but thanks to our internet friend and fellow NB Mom, we had it emailed to Shayne before she even started this chemo!! (Keep in mind our friend who's daughter did these same chemo is from France!! Amazing technology, unbelievable friends!!!)
Christi is treating per a European protocol, Topotecan, Vincristine, and Doxirubican (TVD). According to their Phase I trial, where the dose was determined, 25 children were enrolled. Five children's neuroblastoma progressed. All others were stable or had decreased disease for 2-14 months. Definitely not realistic with this aggressive of a cancer, yet hope gets me through so it is my hope that she'll respond and be able to do this treatment for 14 months. Dr. Maris's goal is more realistic in that if she does respond he'd repeat it for a few cycles and then switch to other chemo agents.
Yesterday Maris stated he had hoped since she hadn't seen these same agents in a few years that she would still be responsive to them and he was happy that her pain had diminished. Shayne and I question the efficacy knowing how prior to initial diagnosis she'd be in pain for a while and then feel great for a while. We're fearful that that is what is happening and it's not that her cancer is shrinking. Her "bumps" are all still there, but thankful are we that most all of her pain is gone. This morning she still has "puffy" disformed eyes, but she says that her face isn't numb any more.
Since my arrival at the hospital this morning, we've read her new American girl book - takes place in Belize where Shayne and I vacationed just prior to Christi's diagnosis. (Keep in mind Shayne's cognate area for his undergraduate degree was in Central America so it was PERFECT that this story takes place on a dig of Mayan ruins!), played "Sorry", talked with Nee Nee and Shayla and now (as you can see) she's busy checking her little email account and playing "Neopets.com" -raising those baby pets, while I sit beside her and update this blog. I'm so glad her eye situation has improved and she's again able to do these things she enjoys so much!! God is good! Her blood counts have fallen, but that was to be expected. Platelets now down to 93, white (I'm guessing here 3.1, with hemoglobin of 10.7.) She's still okay to be out and about, but that's probably not going to last much longer. Her nadir should hit about February 11th.
Her chemo shall soon begin for today and after it runs we're hopeful to get a pass to go out and walk around for a while. I'd like to get her to the UPenn bookstore (a Barnes and Noble) so she can pick out a few more books that she likes, but we'll see how it all goes. We only packed for a 24 hour visit and we finished the four books I had packed early on so I'd like to get her to the bookstore if possible.
Some have emailed me with questions regarding the hu14.18 - IL 2 study Christi was on a couple of weeks ago. We have heard that it closed due to toxicity; however, it has nothing to do with Christi's situation of rapidly progressing disease. Other children who started it are (thankfully) allowed to continue if they did not suffer from toxicity, but no new children are being enrolled. We do believe it'll prove to be an effective treatment for NB, just not for Christi (with rapidly progressing disease) right now.
REFRESHED! The pass provided Christi (and all three of us) with a great break from CHOP - now she's hooked back up to her "dancing partner" (IV pole)! Despite the pouring rain, the temp was still in the mid-50's so we took off for the four block walk to the Barnes and Noble at UPenn this afternoon. Christi held up her umbrella and was covered with a sheet while Shayne pushed her in the wheelchair. Worked like a charm - she stayed dry. Shayne - well no comment, hee hee. Thanks to sweet prayer warriors and good friends back home, she used a generous gift card and only owed $1.27!! (THANK YOU!) After enjoying the children's department, she looked exhausted. She said that her eyes were hurting and she wanted to go back to the hospital. She did read non-stop the entire two hours! It was joyous! She LOVES it there!
When asking Dr. Maris if her eyes were definitely involved he said to accurately determine that she'd need to have a one hour long MRI (her least favorite test!) done and he couldn't see a need to put her through that. Originally, he said that if her orbits were involved and it looked like she was about to lose her sight they'd start radiation right away. I wonder if that's not as big of a concern right now, or if it is fruitless and going to happen anyway. Radiation takes time to work. I just wish her eye situation was improving. At least they're open now - that's a step forward from days ago. I am thankful!
Calls with her friends today have consisted of the same message. "I'm going to lose my hair with this chemo, but we're going to cut my hair and send it in and see if they'll make it into my wig. I'll look just like me." Still breaks my heart to hear this every time, but I'm glad she's talking about it. She is so amazing! It just doesn't seem that that should be a conversation an 8 year old should be having with her friends. Her friends have given her soooooooo much joy in recent days by way of telephone! She is very blessed!
For the most part she feels really well. I must admit, treating or not was a difficult decision to make on Tuesday night. I huddled in the hotel bathroom speaking with Shayne via cell phone. He said, "Of course, we're going to try to treat her, right?" I could only describe her poor condition and say that I didn't think it was in her best interest. She was so miserable I couldn't imagine her getting better. I explained to Shayne that I thought putting her through treatment was very self-serving because we want to extend her life. When speaking with Dr. Maris about this he said that he felt treatment would give her some relief and comfort and he also said that if he asked Christi if she still wanted to treat, he would bet that she would say yes. Now, there days later, I let out a big sigh and thank God that we started the chemo. It may not be helping destroy the cancer, but she really feels so much better and I'm hopeful it'll get things "under control" again and buy us some more quality time with this little gift of joy! She's overcome so much in the past 3 1/2 years. We're proud of her and her amazing bubbly spirit!
Shari - Last night when we had to move Christi wanted me to take down the pink and red paper heart valentine cut outs you made and put up in our room so I did and I put them up in her new (MUCH smaller) room. Thanks for brightening our lives!! You are a gem - a rare and precious find! God bless you! Saturday, February 04, 2006 Shayla's new shoes
Looks like Shayla is being well taken care of back home while we are gone. As we can see from this picture Grandma Nee Nee seems to have bought her a new pair of shoes. (Her other ones were in sad shape!) and a few more Littlest Pet Shop Pets - the latest rage. (Thanks for sharing this picture of first grade sharing time, Mrs. R!!)Special thanks to Shayla's classmate for having her over for an overnight. A friend is the perfect distraction. We're anxious to return home to Shayla as soon as possible!
5 Days of Chemo Down, One to Go! When I left to catch the last shuttle back to Ronald to sleep last night Shayne had started a Captain Underpants book (We discovered at the bookstore yesterday that there was a new one!!). I'm in the middle of reading her "The Report Card" which is also very humorous and by one of her favorite authors - Andrew Clements! I keep offering to turn on the TV, but she much prefers stories. She is eating well and she had a restful night. I received a text message back at Ronald about 1AM which said, "We pooped! (Well, I didn't, Christi did!)" Shayne is so funny. Yesterday, we learned that if she didn't have a bowel movement, they wouldn't be able to give her one of her chemos on Monday. You go, girl! (hee hee!) Monday's chemos are supposed to be the harshest. After today's infusion of the Topotecan (sounds like a tropical bird, eh?!) we're hoping to get another four hour pass to get out of here. Temps have dropped into the mid-40s, but it's still much better than back home where I understand there was a huge snow storm. I'm not sure what we might do, but I think she'd like to go to the Ronald House to play - if we can push a wheelchair that far. I wish we had her jogging stroller here - next time!!
I also thought if some stores were open on Sunday she may enjoy shopping for a new hat/cap. I vividly remember packing them away not so long ago. While in her room she asked me what I was doing and I said, "Boxing up your hats to put in the basement." She said, "Why don't you give them to the hospital for another kid?" I told her, "Well, if your next treatments involve high dose chemo, you're going to lose your hair again and you may want these." I remember the shocked look upon her little face and I felt horrible. Now, we realize she's MUCH older and those little hats aren't going to fit. She was right, I should have just given them to the hospital then!
Thanks to the power of prayer and to (hopefully) the chemo, her back isn't causing her pain this morning. She says that her eyes are "better" - even though they still have yet to return to normal. (The rest of the "puffiness" in her face has completely resolved, whew! Now come on, little eyes- restore!) She said, "The lumpity bumpities on my head still hurt - because the nurses keep touching them." Last night before I left her, I touched her jaw and sure enough that nasty "lumpity bumpity" (to borrow Christi's words) is still there too. My heart just sunk and I cried all the way back to to Ronald. I am very thankful; however, the pain is gone! During my 6:30 AM walk over here this morning, I had planned to duck into the Catholic church to pray, yet there were gates up and there were homeless people sleeping in the doorways. So sad!
Christi's blood counts were not available yet when we walked down here to the "Teen Room" so she could play "Neopets" and I'm using the 2nd computer so I'll update with them later. (We haven't yet downloaded my email properly so I'm not fully "in business" as I'm only able to check my email sporadically and not in an organized fashion. ) FUNNY: Christi likes being in charge of pushing her own IV pole and has politely reminded me, "I'm 8 1/2 now."
Shayne stated last night that he needs to get back home. "Shayla" has come out of our mouths time and time again. I'm hopeful that Christi and I will get home in the near future, if only for a little while before returning again. She really wants to make it to her 4th grade class's Valentine's party stating, "Christmas and Halloween parties are okay, but it's the Valentine's party that is my favorite!" Today is Sunday so we're not going to get any information about what lies in our future until Monday, but it appears that this chemo is a 21 day cycle instead of a 28 day cycle. We also anticipate her getting really sick - since this is the first high dose round she's had in years, it should hit her hard and I'm not certain which hospital she should get to when that dreaded fever spikes and how she should arrive there. I just wish CHOP was not a ten hour commute!! A lot to think about yet......
Middle of the Night Blood Counts: 3.9 white 10.2 hgb. 92 platelets 2,032 ANC
There She Is!!" Well the newly crowed 2006 Miss America's dream came true today (wink), she finally met the famous Little Miss Christi Thomas of Ohio!! (Smile) Seriously, just as we were wheeling Christi down the hall with her 4 hour pass we learned that Miss America was in the lobby so we literally rolled right into her. And having just watched the Miss America pageant two weeks ago we knew Jennifer Barry was a ballet on pointe dancer. I cued her in so "the girls" talked ballet. (Precious!)
The story just aired on NBC Channel 10 news here in Philly and also on Philly's CBS channel 3 news. For anyone in the Philly area, it may be re-run at 11:00 PM. (Photo taken from the TV during tonight's news.)
Christi's now sporting a darling pink baseball style "Ben and Jerry's" cap - and of course the little healthy eater selected some yummy sorbet while I had the chocolately thingy ma bob!
Her left eye appears to be nearly back to normal and I do believe her right one is improved even though I read in her charts that it has worsened. When a doctor examined her this morning she told us that she felt that the bumps on her head were smaller. We Praise Him!! Even though we know this will be a "temporary fix" if anything at all - we are full of praise and thanks that she is feeling great! She's scheduled to get an EKG/ECHO tomorrow to establish a baseline for her heart functions since one of tomorrow's harsh chemos is known for heart damage.
Back at the Ronald House she painted and ate and played Nintendo games with Daddy and some other kids. She was an hour late returning back to the hospital, but I couldn't push her very fast in the wheelchair - that made it "too bumpy" and she wanted to read a book all the way (so funny) so I slowed my pace to accompany the little reader's desire.
We've called her teacher and asked if the 4th graders could celebrate Valentine's on Thursday. If all goes as Shayne and I are hoping to fly home tomorrow or Tuesday so that we can get back to school until her blood counts bottom out - most likely by the weekend. Then, sadly, I think it'll be the end of school for a while. We'll talk with Dr. Maris tomorrow. Tomorrow are the "hard hitters" in the chemo concoction - Vincristine and Doxarubicin. She's complained a little bit about a headache tonight, but we pray it's nothing serious and that it really is from hitting her head on the treehouse at Ronald like she keeps reminding us she did and not this horrible cancer which has taken over her skull and so many other parts it wasn't invited to invade. I'll head back to Ronald to sleep on the last shuttle run tonight and I hope it's my last night there for a long time. For those who've sent items to the hospital, CHOP is WONDERFUL about forwarding mail to our home in Ohio! There are Angels working at CHOP!
Monday, February 06, 2006 The Comeback Kid?
Although her eyes are still both pushed out (right one far more than the left) and she's quite nauseated, we headed to the airport this afternoon and will be sleeping back in our own beds tonight! We can't wait to be reunited with Shayla and to be at school this week. Tim took us to the airport. (Christi was happy to learn there wasn't going to be a taxi ride involved!)
This morning she received her chemo in the playroom while making a matching beaded necklace for "Jess" and we overheard her tell the nurse, "I really feel much better with this chemo."
I really doubted five days ago that we'd be bringing her home, much less bringing her home feeling so much better. I'm filled with praise and glory for God's goodness.
We will board our plane shortly, thanks Lisa.
Monday, February 06, 2006 We're Home! Wow, Shayne was right - he DID update her blog from the airport. I was in the middle of that update when the nurse practitioner arrived and things happened so rapidly after that.
Her blood counts have really fallen. White 4.4, hgb. 9.9, (no wonder she's been so cold!) platelets 76 (Pat felt a transfusion would be needed soon.) ANC 2,552 (The ability to fight off infection still is good, but the hospital really stressed the kids at school washing their hands and washing their hands.)
Sadly, the LDH sunk my heart as it's EVEN HIGHER -3,900 (YIKES! I was pretty happy the past few days until THAT news.) This disease is just vicious!
We had to stop at a truck stop for Christi as she had become car sick. It was about an hour until she was able to drive home from Cleveland again. She's hardly eaten. So nice was it to receive a welcome home poster and balloons from her sweet little friend, Kaylyn.
Shayla is awesome! It was great to see the girls playing together tonight. We arrived home about 8:00 and I am so tired.
Blood counts will checked on Thursday morning before school. In case she needs a transfusion it can be done after school.
Neupogeon shots to begin tomorrow. We haven't yet let her know that dreaded news. She hates shots so much. Goodnight! I'll add pics to these entries soon.
Tuesday, February 07, 2006 Sleepy Girl Goes to School! Even though we arrived home about 8PM it was very late when we actually got to bed last night - and I still have a lot to do in the way of unpacking. Much to my delight, Christi wanted to go to school when I woke her up at 6:30 AM this morning. I thought all was well!
About 9:45AM I received a note from her teacher informing me that Christi had a headache and was nauseous and crashed out in the big chair in the back of the room. My Principal was in my room at the time so I asked him to see if Mr. Jones was still in the building. I quickly grabbed my coat and threw some work into my teacher's bag thinking I was heading for home. Arriving in Christi's room I learned that she didn't want to go home and that she thought she'd just sleep a little while. I returned to my classroom feeling very stupid telling my Principal "False Alarm". I assumed I'd take her home at lunch, but at lunch the cafeteria ladies told me she was okay, but she didn't want any mashed potatoes (One of her favorite foods!). I found her reading a book in the big chair instead of at recess. After school she told me that her eyes and her head hurt, but not too bad. Oh, how I wish she were pain free. I'm scared!
She wasn't up to going to dance classes tonight, but perhaps that is because she was busy playing "dogs and cats" with Shayla. (smile)
I've arranged for a 7:00 AM blood draw at the hospital on Thursday. This shall allow us to make it to school - it's the day of the 4th grade's big Valentine party, ya know (smile). Shayne was able to order all of her needed prescriptions today. Not today. Christi did not have the energy to go to school today. She is eating and is comfortable, however, just does not have enough stamina to go to school. When I get her counts checked-she will undoubtedly need transfused. Meanwhile dad will work from home and wait on her hand and foot. Shayne
Wednesday, February 08, 2006 Not the Best of Days (Brighting the place up, Christi painted this on her window at CHOP - Thanks, Colleen for lending us your paints!)
I had hoped that Christi would have joined Shayla and I at school sometime today, but her headache persisted as did her eye pain. She also has a very sore throat and mouth from nasty mouth sores due to the high dose chemo. Shayne gave her some dilaudid (narcotic for pain) today. She's been very tired; we also assumed she was needing a transfusion or two so Shayne took her to the hospital this afternoon to get her blood drawn. Sure enough, she needed both blood and platelets. Boy was that chemo harsh! Tomorrow morning, I will take her to the hospital to get her blood products which were ordered tonight. I hope it makes her feel better and perks her up some. The blood is to run for 4 1/2 hours and the platelets should take about an hour. I've packed lots of things to do and I pray she'll feel up to it.
Finding out that Mrs. Smith would postpone the class valentine exchange until a later date was the sweetest thing! (Thanks, Caroline!!) She is a Saint realizing how important this valentine party is to Christi.
The most stressful part of the evening was when Christi learned she had to start getting nightly shots again. She told Shayne, "No, remember I'm getting transfusions tomorrow." Shayne explained that was for her low hemigloban and platelets, not for her very low white count (1.9 white / ANC of a mere 200 - yikes!! The ability to fight infection is nill!) The little inquisitive mind said, "I just don't get it. Why didn't scientists figure out how to do white blood transfusions first? That is the most dangerous, not blood or platelets!" Things have changed now that we're trying to rationalize cancer care with an 8 1/2 year old, instead of the little 5 year old she used to be!!
She asked Shayne if it was okay to scream when he gave her the shot and he assured her it was. Well, she screamed a blood curling scream during the entire injection. (The shots are HUGE.) Later, Christi sobbed into my shoulder, "I'd rather have ten small ones instead of five larger ones." (Not realizing it wasn't an option and that actually ten (large) shots were ordered for her by the doc, but due to the cost and hoping she doesn't need them, we just got five and we'll pray we only need five to get her ANC back up!)
Thanks to the wonderful blessing of family, Shayla's 7th birthday party is all planned for Sunday - her real birth date too! (She does like to say, "Abraham Lincoln was born on my birthday. hee hee!) I am a bit worried about Christi's ANC and other issues, but they know we may cancel at the last minute. Meanwhile, we'll pray!
Thursday, February 09, 2006 When it rains..... Christi was asleep by 7:00 PM (very unusual for the child that stays up reading at night much later than Shayne and I possibly can). I was sound asleep with Shayla when I heard Christi calling for me at 2:45 AM. Neither one of us slept much after that. Her mouth sores are causing so much mouth and throat pain. Her eyes are hurting her too. Finally at 5:45 AM, I told her I'd send Daddy in to cuddle while I took a shower because we had to get to the hospital soon and hopefully they'd make her feel better. I showed Shayne where Shayla's clothes were set out and I took off for the hospital with Christi knowing Christi's teacher would be taking Shayla to school for us today. Arriving at the hospital, she was close to having a fever. (I'm still hoping we're going to somehow avoid that dreaded fever which will require about a week's hospitalization - somewhere.) A sweet Angel at Mercy had driven up to Toledo last night so that her platlets would be ready for her this morning. (Amazing volunteers! We praise Him!!) THANK YOU precious blood donors for saving our daughter's life with your priceless gift of blood!!
She was able to receive both platelets and whole red blood cells in less than seven hours. Yahoo! (Incredible nurses and staff! Thanks, Doug and all!) She did spike a fever during the process, but it didn't go over 100.4 which is what it was when we left for home. Her eyes were hurting in addition to her mouth sores so she just wanted me to read to her the entire time, so I did. We finished one book and have just three chapters left of "Lunch Money" by Andrew Clements. Shayne, much to my delight, suprised us by popping in for a little bit.
Soon afterward I received a text message from him. "Shayla threw up at school. They sent her to Shari's." Oh, no!!!! Poor Shayla!!!! I had no idea anything was wrong with her and of course my mind raced to Christi's current inability to fight off infection and yet knew I had to get her out of Shari's home before her kids came home from school. Darn this beast! Thankfully, it was Grandma Nee Nee to the rescue!! She picked up Shayla at Shari's and is taking her to her condo so that the girls will be separated. My heart breaks for Shayla!
Currently, Christi isn't feeling the best but she's interested in watching cartoons now - so I thought I'd put up a quick update and say thank you for your love and prayers! We'll see what tomorrow brings. I'm still hopeful about returning to school, but time will tell.
GOOD NEWS: I can't feel any "bumpity bumps" on her forehead or her jaw today. Praise God! Her head was hurting so much I couldn't let my hand wander to the top of her head, but maybe I'll check later. I'm hoping she'll be one of the 60% of kids who will have this chemo work for 2-14 months - oh, how about 18 months, dear Lord?!!! Friday, February 10, 2006 Not Today Either
(PHOTO: I wish she were still feeling like this now! This was taken while at CHOP last week. It reminds me of when I was pregnant with her and Dr. Cordero did an ultrasound and said, "I think it's a girl, but until I see a cell phone I'm not going to say it's a girl." Looks all girl to me! Chatting and shopping!!)
Last night Christi finally perked up and watched a DVD while making those cute little balloons clowns blow up and twist. (She's really good at it!) She ate a popsicle (first thing all day) and I thought things were on the upswing. I emailed my wonderful substitute teacher informing him I thought we'd both be back at school on Friday.
The shot was hard last night. At one point Christi said, "Dad, give it to Buttercup instead. I don't care if it kills her. I don't want that shot!!!" Christi loves her cat; therefore, I knew how horrible the injection was.
Then midnight arrived and her horrible pain was back. Her mouth/throat sores from the chemo, her eyes and her headaches all returned. We gave her different pain medications at various points throughout the night. I woke her at 6:00 AM and asked if she thought we could go to school or if I should call Mr. Jones to teach for me today and she whispered, "Call Mr. Jones". So sadly I did. She just loves school and I know how much she wants to get back to school and her friends!
Today she's complained that her back hurts as does her head, especially where the bumps are. I said, "I didn't feel any bumps yesterday." She said, "They're tiny now, but they really hurt." She ate a bit of a milkshake, and a few spoonfuls of Cheerios but that's all so far today.
Thankfully, it appears that Shayla just had a case of a "nervous stomach". She was fine at Mrs. Depinet's and fine at Grandma Nee Nee's. I do think she has been very worried about Christi and perhaps this is what happened. (She's also not very fond of school although I am always happy to get responses from staff about how polite she is.) I wish we had a guidance counselor at our k-8 school so that Shayla could talk to someone, but funding cuts a couple of years ago removed that option. Shayla seems okay, but I really wonder what's going on and how we can help her.
Well, Grandma Nee Nee used to be really high on my "I want to grow up and be just like you list" but all that has changed in the past 24 hours!!!!! (She's #1 on Shayla's list now, but not mine.) Grandma Nee Nee bought Shayla the pet she's been wanting - and not just ONE, but TWO HAMSTERS! Furthermore, Nee Nee didn't think they belonged in her condo as Shayne and I suggested, but in Shayla's room. Happy 7th Birthday, Shayla! (And how do you know if they're male or female? I'm thinking we may have TONS of hamsters in days to come.) ARGHGFGGGGGGGGGHHHHHH!!!! OK, I'm over it now. Yet when Christi woke up today she asked, "Why does Shayla have three pets and I only have one?" Oh my!!
So Shayla arrived home this morning to get changed into fresh clothes to go to school. Well we didn't communicate clearly enough to Nee Nee as she told Shayla no school today and she was coming home. When Shayla walked in the house at 8:00 AM I had her clean clothes lined up. She told me that Nee Nee said no school and I had to tell her that wasn't correct. She ran past me and locked herself in her upstairs bedroom sobbing. This is so hard! I'm anxious for her to come home from school today - except she'll probably ask me to hold one of her furry critters! YIKES! I love you sweet Shayla!