Sarah Created 05/05/01
1  2  3  4   Sarah's Playhouse UPDATES     UPDATE PAGE ONE November 6, 2001 It appears to me that Sarah is totally deaf. I am going to have to talk to her Dr. today. She isn't hearing anything that I say or any noises that I make. I turned her t.v. up full blast last night and she laid in bed, nodding her head and saying, "Yeah, turn it up a little bit more". I am sincerely praying that this is some sort of temporary or partial loss and not a total loss of hearing. She hasn't been tested, so it is just my opinion that she isn't hearing anything, but I see no evidence of her hearing even loud noises. I talked to my sister last night about it and we both just cried for Sarah and how sad it made us that she might not be able to hear anymore. I know that it's not the end of the world or the worst thing that could happen, but it's just one more thing that we have to deal with and it doesn't seem fair that such a little sweet girl has to deal with so much. Hasn't she been through enough already? She just wants to be home and play in her backyard and be with mommy and daddy, David and Laura. Sometimes it all just makes me so mad that I could scream. I will, hopefully, speak to her Dr. today about having her hearing checked. She does seem to be improving from her infection(s). She is on 3 antibiotics now. Two of them are once a day and One of them is three times a day. She is sleeping at night again, and seems to be less shaky. She still has a fever though. I hope that will come down today also. I will try to update later, if I have any more (hopefully, good) news. November 5, 2001 I was up early today...worried about Sarah. Still feverish and shaking, I figured she'd be admitted for sure. I called the clinic to find out what time her appt. was and they said 3pm. I really didn't want to wait that long, so I asked if I could come in sooner. They said that would be ok, so I packed a bag with clothes, medicine, cell phone, etc. and forgot every single bit of it when I packed the kids (and my mom) into the van in a mad rush. I had to carry her up to the 3rd floor because I was worried that she'd fall out of a wheelchair, she was shaking so bad. The nurses got her into a bed right away and Sarah fell asleep. (She screamed the entire 1 hr. drive to the hospital). Her counts were good except for platelets. Her WBC was 6.0 and her hemoglobin was 10.2. I don't know what her platelets were, but she had petchiae all over her tummy and back, so I knew she'd need a transfusion. I was so worried and stressed out that as soon as they put Sarah into a room I started to cry. They gave her the platelets, and had a dose of her Flagyl sent up (which I had forgotten at home). She got a new patch for pain and the Dr. started her on a 3rd antibiotic, this one is i.v. once a day. I also gave her a dose of Tylenol while we were there. After all of this, we were still able to come home and made it here by 3pm! Sarah is resting in her room and actually looks a little better. The Dr. wants to see her again on Friday, but stressed that I could call him anytime or bring her in and they would see her. He also confirmed that they would not do anything more to her before Christmas. I'm thankful for that. One other thing...I'm worried about Sarah's hearing. It's been fine up until now, but today she kept saying, "Mom? Mom? MOM??!" And I was answering her, "What? what, Sarah? What is it??" and it was like she wasn't hearing me. I think we'll do a hearing test on her once she's feeling better. She had Carboplatin during 3 rounds of her chemo treatments....I think that can have an affect on hearing, I'm not sure? November 3, 2001 (Saturday) Sarah was able to come home last night. Her scans were all clear (thank you to everyone who has been praying for her). They found a c-diff infection and put her on Flagyl (an antibiotic). She also has a Fantonyl (sp??) patch on her back for pain control, because her tummy was really hurting her bad last night. This morning she had a temp of over 101 F and was shaking from head to toe. She didn't budge from her bed today, nor did she eat or drink. I called the Dr. this morning, worried that I would have to take her right back to the hospital but he just called her in a prescription of Zithromax (another antibiotic). So now she gets Flagyl, 3x a day, Zithromax 1x a day, Tylenol about 5x a day, and i.v. Benedryl 4x a day. Plus her TPN. She's still having trouble sleeping at night and today her temp reached 102.3 F. I am very tired and not feeling well today, myself. My mom came over and helped me today and I asked for her to help me out for the next couple of days. I hope that Sarah will be able to sleep well tonight. She is still weak and shaky and feverish, but seems to feel a tiny bit better (or maybe that's just wishful thinking??) I don't know. She sees the Dr. on Monday, so I should have more news then. November 2, 2001 Last night, Sarah was put on a continous morphine pump for pain. She also has the low-grade fever again. She is getting her MRI right now and Carl will be calling me with the results a little later. The Dr. is still concerned about her symptoms. He mentioned that after her MRI he might want to send her down to UCLA for a PET scan. We would have to make arrangements for this and I don't know when it would take place. I believe that Sarah will be home tonight with a patch on (morphine, I think?) for pain control. The Dr. also said that her 2nd transplant may need to wait until after Christmas. Please continue to pray for Sarah. We are hoping that this is not a relapse, but we don't have any idea what could be wrong. November 1, 2001 Sarah was admitted to the hospital yesterday. The Dr. was concerned because she hasn't been sleeping and has been complaining about pain in her back (exactly where her tumor used to be) and headaches. He ordered CT scans, MRI, EKG, echocardiogram. Some of this is being done because we're in-patient and it's convenient to get these tests done which she needs to do before transplant anyways. She had a CT scan of her pelvis last night and one of her head, neck and chest this afternoon and they both look clear. She will have an MRI tomorrow that will, hopefully, turn out ok. It really scared me that her cancer might be back when we haven't even stopped treatment yet. I am going to be posting some new pictures of Sarah in her Halloween costume and our backyard, completed. Oct. 28, 2001 (Sunday) Sarah had a hard time getting to sleep last night. She was thoroughly tired, but she kept waking up, crying. She had to go potty or be changed, or wanted a movie on, etc. etc. I was up really late anyways, like 1am but I had a lot of things I needed to get done so I was hoping that she would have a peaceful night. My sister was here and was helping me to get ready for the little birthday party we're having for David today. We were straightening up the house, cleaning the kitchen and baking cakes. We also played a game of Scrabble and my "little" sister kicked my butt in that game! We had this big plan to make 2 cakes, rectangle shape, and fill them with vanilla pudding, frost them with blue and yellow frosting and place Ding Dongs on the top of them (also frosted with the colored frosting) to make the cakes look like giant Legos (David is a Lego freak). So, the first cake broke when I tried to get it out of the baking pan. I managed to get the second cake out ok, but when I tried to fill it I began to have problems. I finally decided to cut the whole cake in half so that I would be able to fill it easier and we would still have 2 cakes, they'd just be smaller. Well it turned out to be a big disaster, the cakes were ugly and hideous looking and I asked my sister if SHE would want to eat a piece of those cakes if someone offered them to her and we ended up laughing so hard that we almost peed our pants. Needless to say, the cakes ended up in the garbage and Carl will need to buy us a cake from the store. I hope the party goes a little smoother!! Oct. 27, 2001 Yesterday Sarah went to see her Dr. and have labs drawn. It seems as if her counts have finally stabilized. She didn't need any blood or platelets and the Dr. was pleased by the lab results. He attributes her throwing up and diarrhea to the TPN that she is on. It makes sense because she's had both, pretty much non-stop, since April. The Dr. also told us that Sarah would probably be coming in for her MRI, CT scan, GFR, echocardiogram, EKG and general work-up in about 2 weeks. Every time we go to the hospital now (and it's usually just for labs) Sarah cries and says that she is tired of being at the hospital. She doesn't want to stay and she "hates" her line and wants it out. Poor thing. She is just so sick of being sick. She wants to be better and go swimming and go to Chuck E. Cheese. We are driving up to the mountains today, so maybe that will cheer her up. She loves to feed those ducks! Oct. 24, 2001 (Wednesday) We drove down to labs today. Carl had to work a bit of overtime, so it was me, Sarah, David, Laura and Grandma Tammy. Part way down the hill, Sarah had to go potty (this is really becoming a habit), so I stopped and took her to the bathroom. We loaded up again and got back on the freeway. A few miles later, Sarah threw up. So I pulled into a parking lot, off the freeway and Sarah screamed at me that I was making her "barf spill"!!!! I figured she was exaggerating (which she frequently does), but when I looked back at her, she was covered with the scrambled eggs she had eaten for breakfast. I had to wipe her down, change her clothes and put a disposable bed liner on her carseat which had a little throwup on it too. Well, we finally made it to the hospital. They drew labs and she needed platelets. So they asked me whether she normally gets Tylenol or Benedryl before a transfusion. I said, "Benedryl" because she gets that in her line, and she has to take Tylenol in her mouth which turns into a huge fiasco. So they brought the Benedryl....in a cup for her to drink because there is a "national shortage" of i.v. Benedryl. Sarah pitched a HUGE fit about taking the medicine, but she DID take it. She got her platelets and we were able to leave and get home before 2pm. She's been in a pretty good mood, most of the day. She was walking around holding and hugging this doll of hers, that giggles and burps and Sarah said, "This is my new friend." Tomorrow (the 25th) is David's 9th birthday. Happy Birthday David!!!! We love you and are so proud of you for being such a big boy and a big help to Mom and Dad. Thank you for helping so much with your sisters too! Oct. 23, 2001 A lot of work was completed in our backyard today. The started smoothing out the fertilizer, testing the sprinkers, and hauling in blocks to do a small wall along the "step" in our yard. They worked pretty much all day on it. The kids and I are so excited to see it finished. I will take pictures right away (when it's done) and post them for everyone to see. Tomorrow is a lab day for Sarah. I'm feeling tired, just thinking about it. Oh well, we have to do what we have to do. I think everything should be fine and we can get out of there quickly. The only thing I can imagine her needing is platelets. She did have a couple of bruises on her legs, but hopefully her counts have come up enough to avoid needing a transfusion tomorrow. I'm going to TRY to get out of here early tomorrow. October 22, 2001 Sarah had labs and a Dr. appt today. We talked to the Dr. about having Sarah start her 2nd transplant in mid-November so that we can be home for Christmas. He agreed to do that, so that we can spend Christmas together as a family. Her counts are coming up (a bit slowly, but ok). She continues to have throwing up and diarrhea. Apparently there is a "national shortage" of Benedryl, so we'll have to make what we have, last. I don't think it will be a problem though. Sarah is very excited about the backyard being done. It isn't complete yet, but they're working on it. Oh, and get this, the landscaper had a bunch of manure (soil??) dumped in our driveway (he did warn us about this), so there is a ton of flies outside our house and it's STINKY!!! I hope that smell doesn't stick around too long after they put the yard in, but I bet when they soak it, it will stink even worse!! Oh, Sarah should LOVE that. She hates bad smells. LOL. October 19, 2001 (Friday) I had to take Sarah in for labs today. I had a heck of a time just getting to the hospital! I left the house with all 3 kids at 7:45am to pick up Grandma Tammy. We left her house at 8:05am. I had to stop at the bank on the way to the freeway for money and then we headed down the street. There was a big accident, so I had to detour, I got a bit lost (nothing unusual about that!) and by this time, the kids are crying that they are hungry. So I stopped for doughnuts and got on the freeway (finally). About 5 minutes down the freeway, Sarah has to go potty (#2, of course). So I pull off the freeway and take her to the bathroom. Then, back on the freeway. We didn't arrive at the hospital until 10:30am. The nurses drew her blood and we waited for the results. The platelets were a bit low (18) but they said we could come back tomorrow and maybe we wouldn't need a transfusion. But I didn't want to drive back tomorrow! So I asked them to just transfuse her and we'd come back on Monday when her normal appt. was scheduled. Anyways, we didn't make it home until 4pm and I'm pooped!! I hope we all have a nice, relaxing weekend. October 18, 2001 Sarah is home! She is really home with us, sleeping in her own bed, with the Hello Kitty sheets. It is wonderful being a family again. We are all under one roof and it's great. Sarah is feeling good and starting to eat better. The Dr. gave me some I.V. Benedryl for her line when she is nauseated and it works really well. I've only given it to her twice, but it has cut the throwing up down to one time a day. Tomorrow I have to take her in for labs, but that should be quick. She just got blood on Wednesday and another dose of GCSF, so I think she should be good tomorrow. Maybe platelets....but, even that doesn't seem likely. She just seems to be doing really good. Oct. 17, 2001 (Wednesday) Well, the bad news is that the Dr. said he wants Sarah to stay in the village until Monday! We were hoping to get out today. The good news is that I talked him into letting her go home tomorrow. Hurray for mommy! We still have to drive down for labs on Friday and a clinic visit on Monday, but that's ok. Carl has 6 days off and we really wanted to be able to spend time together as a family. The landscaper showed up today and started working on the yard. We are paying about 1/5 of the landscaping bill and that's all. But, in the process our entire backyard gets landscaped really nicely. I am so grateful to Make A Wish for everything they've done for Sarah and our family! Oct. 16, 2001 (Tuesday) Sarah had a pretty uneventful night. She fell asleep watching videos and slept pretty much, all through the night. This morning she walked outside with me and said, "Mommy! It's beautiful!" It has been a really nice day today. The temperature was mild and the City of Hope is really pretty outside, with lots of green grass, trees and different colored flowers. Sarah was nauseated when she first woke up this morning, so I walked her over to the clinic and had them give her some Benedryl in her line. We walked back she ate some Frosted Flakes w/milk. Then we went for a little walk, came back and sat under a tree in the shade playing Rugrats UNO and Hi-Ho Cherry-O. Then Sarah watched a video, took a nap and woke up grumpy. I decided to go to the Cafeteria with her, for dinner. We bought Chicken tenders w/french fries, Doritos and water for Sarah and a Cobb Salad and water for me. We ate in the cafeteria and then walked back to our room. I'm pooped! It's a long walk from this room, to the main part of the hospital. And, of course, I have such a keen sense of direction (NOT!) that we would inevitably go the looooong way around. Today, Carl passed his 6-month written test for his job at Riverside Fire Dept. He has been studying for the last 6 months and he passed his test this morning with a 99%! I'm so proud of him. Congratulations, honey! Oct. 15, 2001 (Monday) Sarah was released from the hospital today. Hurray!!! We are now officially in the Hope Village. Picture a Motel 6 without carpet and you pretty much know what our room looks like. It's not too bad though. We feel free! Sarah started eating today. She ate a bit of popsicle, a couple bites of Spaghetti-O's, and 2 tiny bites of chocolate. I was pretty impressed. Of course....she did throw it all up, but, hey, it's a start. I think the whole transplant experience was not too bad. It took us 4 weeks (exactly) to be released, and even though we're not actually home, we're almost there. I would really like to thank the people who took time to come and visit Sarah and me while we were in the hospital. Also, thank you to everyone who called and kept me company on the phone (esp my sister, Chrissy!!!). I need to thank all of the wonderful nurses who took care of Sarah (Tammy, Jan, Gaylee,Cindy, Daphne, Therese, Kris D., and Jen...I hope I didn't forget any...). All of the nurses have been soo great! Sarah and I are esp going to miss Kris D. who will be leaving the hospital at the end of this month. Thanks for being such a good nurse and a friend to us, Kris!! I think that Sarah will be back in the hospital for transplant in mid to late November. Hopefully home for Christmas though. Also we are hoping to actually be home by the end of this week or Monday at the latest. Saturday, Oct. 13, 2001 Sarah is now spending her days free from her i.v. pole. Her mouth has healed nicely, she's drinking water, but not eating yet. We will transfer to the village on Monday afternoon where they'll keep an eye on her for approx. a week, just as a precaution. I told Sarah about the "hungry children" in Afghanistan and asked her whether or not she'd like to send $1. She got out her little coin purse (this is where she saves her snack money) and took out $3. One for her, one for her baby sister and one for her brother and said she would like to mail that in. She was sad that she only had $1 left in her purse, but I told her that she could earn more at home, by picking up her toys, etc. She then took out her last dollar and decided to mail that in too (for her baby cousin, Brendan). She's such a sweetie! One of the nurses came in and gave her $5 for her coin purse when she heard what Sarah did. Friday, Oct. something....2001 I don't know what the date is today. I just know that we want to go home! Sarah is doing good and feeling well. She's off her morphine and antibiotics completely. As a matter of fact, they unhooked her completely from her i.v.'s today. That was some nice freedom for her, except she still had to wear her mask. She's been really scared of everything for the last couple of days. I'm not sure why. She just keeps saying, "I'm scared!".. Even of people that she knows really well. She definitely has her "up" moments though. She laughs and plays and it's wonderful to watch. We might get to go to the "village" on Monday. That's these little apartments they have here where they let you stay to keep an eye on you (so you're not too far away). We'll probably be there a week and then go home. At least that's what I hope.... Oct. 8, 2001 Sarah has counts today! Her WBC is 700 and her ANC is 500. I'm so relieved. The Dr. said that she can go to the playroom tomorrow (he wants her to wear a mask when she leaves the room for a couple of days). They are tapering down her morphine and will be stopping her antibiotics in a few days. I told him that I was expecting us to be in here for another 2 weeks, and he said that he would try to get us out sooner (maybe 1 week? or a week and a half?). Anyways, I'm still planning on 2 more weeks and I'll be happy if it's sooner. Sarah is in a good mood. She is happy and talkative. I asked the Dr. about transplant #2 and he said that they will use different chemo drugs, not as harsh as the ones they used with this one and that she won't need an NG tube (the tube that went in her nose and into her tummy) for that one. He also said she should recover quickly from the 2nd one. So, needless to say, I'm feeling very happy today. October 7, 2001 Day +12 (I think...) Sarah still has NO counts. I'm so amazed. Daddy says she is drinking, sitting up and playing and she even took a bite of apple last night. She is steadily improving, but we're still not seeing any WBC. The Dr. is turning her morphine down a bit to start weaning her slowly off of it. She is still required to stay in her room and she will be on antibiotics until her counts start to come back. Oct. 6, 2001 (Saturday) Day +11. Still no counts. I was really sure we'd have something today. Sarah is sucking on her binky, going potty on the toilet (at least sometimes, rather than in her PullUp), playing and laughing. Of course, she is STILL a rather grouchy girl most of the day. I guess it's from being cooped up in here and not really feeling 100% yet. Last night she got mad when the nurse went to take her temp (she had a fever, too, 38.8 C). She threw her binky at ME and hit me right in the face with it. This was probably 2 or 3am. Needless to say, I was NOT in the mood to be hit, kicked and have things thrown at me. She sure has a temper. But, I can see her feeling better and better every day. The Dr. came in today and said he is betting that Sarah will have counts tomorrow morning (literally; he bet one of the nurses breakfast that Sarah will have counts...the nurse thinks so too, but the Dr. made her take the bet that Sarah wouldn't have counts..). I am going home for a couple of days and Daddy will be staying with Sarah today and tomorrow. At least it's a little break. Maybe they'll let her out of the room by Tuesday. I'm hoping. Oct. 3, 2001 Day +8. Sarah had to have blood and platelets today. She was in such a better mood last night. She was sitting up, watching her monkey movie. She smiled and giggled and stuck her tongue out at me (which is a big deal when your mouth hurts!). She slept pretty good last night. She took a sip of water today also...a big thing to me, because there have been times when she has refused everything by mouth because of the pain. She has no fever and is still spending a lot of time sleeping, but she seems to be comfortable. Every now and then she has me push the button on her morphine to give her a little more. I think she's doing great. Oct. 2, 2001 Day +7. Last night, Sarah basically stopped talking (I assume because it's hurting her throat), but her eyes were wide and, I don't know, she just looked scared or in pain or something. It worried me so I kept pushing her morphine boluses to keep ahead of the pain. I didn't like how she looked. This morning she just slept and slept and the Dr. turned up her morphine. A little later, like maybe noon, I had to change her Pull-Up. I did that and then she threw up some blood. I got her all cleaned up, fixed her bed and then she wanted to play Pretty Pretty Princess and watch a movie. She was talking (not too much, but some) and even smiled at the monkey on the movie. I think the morphine helped her. Now, she's laying down again resting with a video on. The Dr. thinks that she'll be this way for 4 or 5 more days. I was hoping that it was closer to 2 or 3 days. Maybe she'll surprise him.... Oct. 1, 2001 Day +6. Sarah is holding in there. Her mouth is hurting her, but the morphine is keeping her reasonably comfortable. Actually it's pretty much just keeping her sleepy and somewhat out of it. She spiked a fever today...not too bad...about 38.7 C (101.6 F). She is using a little suction machine (like at the dentist) to get the mucos and saliva out of her mouth because it hurts to swallow and the mucos is very thick and the consistancy of egg whites. She has still managed to play 3 or 4 games of Pretty, Pretty Princess. She is propped up in bed watching videos, trying to keep her eyes open and sucking on her little suction thingy. Her counts are still zero. Aunty Melanie came to visit today. That always cheers Sarah up, but today she was a little too uncomfortable to care much. She did get her to play a game with her and she looked at the presents that she brought her, but it didn't elicit much exicitement. Chuck E. Cheese came to visit the Ped ward today (in full costume), but Sarah missed him because she can't come out of her room. I guess that's ok since that mouse scares the heck out of her. He did leave her a stuffed Chuck E. Cheese toy and she likes that. That's it for now. Sept. 29, 2001 (Saturday) Sarah's counts have fallen to 300. She is now confined to her room, but she's taking it well. Her mouth is bothering her...the mouth sores have started. She's slept quite a bit today, but she also watched videos, played games and smiled. This is Day +4...the Dr. says the mouth sores will probably get pretty bad. I just hope she recovers quickly. Sept. 28, 2001 It's day +3 and Sarah's counts are still good. She's still laughing and playing. I'm so happy that's she's made it this far without getting sick...I know it's coming...I'm just hoping it doesn't last as long as I thought it would. Yesterday, Sarah's older brother David was officially adopted by Carl so that was a happy day for our family! Last night, Daddy came by to visit. He played Rugrats UNO and Pretty, Pretty Princess with Sarah. He was a VERY pretty princess! hee hee. Too bad I didn't have my camera. Sarah and I played a joke on her nurse today. We took Sarah's wet Pull-Up (the nurse collects them and weighs them) and we tied a red ribbon around it and told the nurse that we had a "present" for her. All of the nurses know what Sarah's "presents" are but they don't usually have ribbons tied around them! She thought that was funny. I have to go now...The Princess is beckoning! Sept. 26, 2001 (Wednesday) Sarah looks great today. Her chemo is done, her stem cells went in yesterday without a problem. Her counts are holding up and her eyelashes are growing back ! She is playful, laughing, and beautiful. I know it won't last, but it's wonderful to see her doing so well. She's enjoying the playroom while she can (once her counts fall, she'll have to stay in her room). I bought her a game called, "Pretty, Pretty Princess". It's very fun and she keeps asking to play it with me. Even her brother, David played it with her and he won....He WAS the Pretty Princess! ha ha. Well, that's all for now...I'll update more tomorrow. Sept. 24, 2001 I talked to Carl today about Sarah. He said that she is still very tired, but has visited the playroom and the snack room today. She had a day of rest and the Dr.'s were supposed to start her TPN tonight. I'll be glad to see some more nutrition going back into her. She only weighs about 14.3 kg (31.5 lbs.) now. She was a good girl for having her bandaid changed today (the bandage on her Hickman site) and she did her mouthcare, which she doesn't really care to do. She'll receive her stem cells back tomorrow. Sept. 23,2001 (Sunday) Today, Sarah's daddy came to stay with her for a few days. He'll probably stay until Wednesday morning. She has completed all of her chemo, so now we just wait. Her counts are still good, but she is very tired. She spends much of the day just sleeping and likes to be carried to the playroom when she is awake. She threw up once today, but it's the first time in almost a week that she's done that. Sarah will get her stem cells back on Tuesday which is considered day 0 (zero). Wednesday will be day +1 and from then on we'll be counting forward instead of backward. Not much else to report...keep praying, please! Sept. 22, 2001 (Saturday) Sarah has slept most of the day today. She is very tired. She has also lost a little more weight. She weighs about 14.6 kg now (originally about 15.5 kg...a kg is 2.2 lbs.). She is watching her favorite movie, "Dunstun checks in" about a silly monkey. She has been to the playroom twice to play puzzles, Rugrats UNO and Pretty, Pretty Princess. She doesn't stay in there very long though. She always gets tired quickly and asks to come back to the room. Only 3 more doses of Busulfan left and then her nose tube can come out. That will be nice. Carl will be coming on Sunday to stay with her for a night or two. Sept. 21, 2001 Sorry it's taken me so long to update...I just got internet access today. Sarah was brought into the hospital on 9/17 where she was sedated and an NG tube was placed without incidence. She wasn't too happy when she woke up but she quickly got used to it and began eating. I was surprised about that; I really thought she would refuse food with a tube going down her throat, but apparently not. She was given a test dose of Busulfan on Tuesday (9/18) and the Dr. discovered that he had to "up" her dose because she metabolizes very quickly. Wednesday at 6pm she began getting Busulfan (24 mG) every 6 hours. She has been running a temp and she's very shaky, but we can't contribute that to the Busulfan, per se. She will receive her last dose of Busulfan on Sunday (9/23) at 6am and her NG tube will then be removed. At 4pm she will receive one dose of Melphalan. Then the waiting begins. I am totally dreading it....the thought of her being so sick. They say it should pass quickly (meaning 7-10 days) but I hate to see her in pain. I have decided to take one day at a time and so has Sarah. That's about it for now. Sept. 16, 2001 Only one more day to go....I've spent most of the day cleaning up the house, and packing up clothes for tomorrow. Sarah is a little nervous, but she's doing good. We hired a nanny to come in and help out with the kids during this time. She's a German lady named Friedel and she's great. The kids liked her right away. Now I will have my mom to help and someone in the house full-time to help. I'm so relieved that it's taken care of. I ordered an "internet appliance" off of eBay which should give me full internet access while in the hospital. Hopefully I will be able to keep up with my updates on Sarah, but I don't think it'll arrive in the mail until the end of this week. Please, everyone say a prayer for Sarah tomorrow and during this time. I'm very worried about the whole thing! Thank you. Sept. 14, 2001 We only have a few more days until Sarah is admitted into the hospital for her transplant. I will most likely be unable to do much updating on her during this time, so I have asked my sister to help me out in this department. The posts may be less frequent as she has a new baby to take care of. Sarah is feeling great. We took her to the L.A. county fair last night and she had such a good time. She loves the ferris wheel, although it makes her mom a little nervous to be on that ride! I have to go and make her eggs and toast now...I will try to update more later. Sept. 9, 2001 Sarah got her playhouse yesterday!! It was such a wonderful day for her. At around 10am a huge crane showed up at our house, along with the playhouse. There were so many people here to see the playhouse be put in. Plus neighbors and bystanders were watching from across the street. It was VERY hot outside already so Sarah watched the commotion from the couch, through the window. She was a little nervous about all the people being here. It was amazing to watch the crane lift this huge playhouse over the top of our house and set it in our backyard. Make A Wish brought patio furniture, a play kitchen, play cleaning equipment and toys to go with the playhouse. Sarah was so excited and happy. She played out in her house all day long. She would come inside for a few minutes and then say, "I want to go back in my playhouse!" and she'd run back outside. We told David that he could have the upstairs (Sarah isn't supposed to be climbing up there). It's really quite large upstairs and he started moving his Legos in right away. It's so nice to have something that all 3 children can enjoy. By 7pm I could hardly keep my eyes open anymore. I was so exhausted. I laid down in bed for a "20 minute nap" and woke up at 11pm with Sarah next to me, the baby fast asleep in her crib, my husband sleeping in Sarah's room, David asleep on the couch and my sister's family all sleeping in David's room. Apparently we were ALL tired! September 7, 2001 Sarah is feeling great! She is happy, playful, and eating. We will be going in for stem cell transplant on Sept. 17 and have been told to expect a 4-5 week stay. It will be a long, hard time for our family, but we have to get through it. We're asking everyone to pray for Sarah, that she will have an uneventful, uncomplicated and a successful transplant. When we go into the hospital (I believe it is on a Monday), she will have an NG tube place in through her nose and it will run down into her stomach. I have requested sedation for her for this procedure and it was agreed upon. She will need this tube to remain in place for approx 6-7 days. I'm not sure how she will get her nutrition during this time because one Dr. told me that she will not be able to receive her TPN while they are giving her the high dose therapy (she will receive the therapy every day while the tube is in) and I know she won't eat or be able to eat with that tube going down her throat. The day we go in (the 17th) will be considered day (-8). The countdown will begin....-7, -6, -5, and so on. On day -1 she will have her tube out and she will rest. On day 0 she will receive her stem cells back. Then our days will be known as +1, +2, +3, etc. We'll probably be in the +20's or +30's before we are able to return home. Last night (for the first time since she got mouth sores at the end of July, I believe) Sarah fell asleep with her "binky" in her mouth. For a long time (before Sarah was sick) I wanted to get rid of that binky. Now it just breaks my heart to see her with it. I know that soon she will stop sucking it again because of what we are going to have to put her through. It's such a loss of innocence. Sept. 5, 2001 We have another long day at clinic today...Sarah has labs at 9am, an appt. with Dr. Sato at 10am, an appt. with Dr. Rosenthal at 1pm (head of transplant team) and an EKG and echocardiagram at 3pm. We should get out of there just in time to hit traffic. I just hope we are gone by 4pm... Sarah is definitely getting her playhouse and party from Make A Wish this weekend (Saturday). We're very excited about it. Sarah thinks it's her birthday and that she will be turning 4 years old (she won't be, until January!). She even wants us to sing Happy Birthday to her. Maybe I should put 3 and a half candles on the party cake?? I'll update more about her appt. today when I get home later.. September 2, 2001 Sorry to take soo long to update...we were out of town for 3 days and had no internet access. The good news is that Sarah's scans came out great! No sign of the tumor anywhere. She has a little swelling in the area where her tumor originated, where they did surgery on her, but nothing else out of the ordinary. She's on track to do her stem cell transplant this month. The Dr. is predicting 2-3 weeks before we start on that. We took the whole family to Phoenix on Thursday and we just returned today (Sunday). We were able to stay in a beautiful resort that had swimming pools, a water park, a day camp, a Kid's Concierge (where you could borrow toys and games), and a lot of other fun stuff. We visited with my sister and her husband and their new baby, Brendan, who is totally adorable and sooo good! Sarah loves him so much and wanted to hold him and kiss him all the time. We took the kids to the Hall of Flame, a historical firefighter museum. That was really neat, with a lot of antique fire engines and fire memorabilia. The kids went swimming every day, we took them to the water park, and David went to Coyote Camp and panned for gold and made an Indian leather pouch. The drive was about 5-6 hours long, but not too bad. On the way there, the kids were all really good, but on the way back, Laura (the baby) was fussy. She whined and cried quite a bit. We were all getting a bit frustrated and I was trying to get her to take her pacifier (binky). Finally Sarah yelled, "Suck your damn binky!" (oops!!!). All in all, though it was a fun trip, we loved Phoenix and we all had a great time. August 26, 2001 (Sunday) We're finally home! Sarah's WBC was 300 today (about 1000 is considered normal), but she's had 0 for days and days now. She was taken off the 3 antibiotics she was on and given just one antibiotic, once a day. We made it home by 5pm and I'm soo happy (and so is Sarah!). On Wednesday we have labs and scans. She's having an MRI done on her brain and thoracic and lumbar spine. She's also having a CT scan of her chest done. It will be fairly late by the time we get home, I think, so it may be another day or so before I can let everyone know the results. Her playhouse delivery has been re-scheduled for Sept. 8. August 25, 2001 (Saturday) Sarah still has no WBC!!! We have been in the hospital for 8 days now. She has no fevers, no more positive cultures and is feeling great, but we will probably be stuck here until Tuesday. The weekends are sooo boring too! I don't know why it's any different than the rest of the week, but it just is. I'll write more when I have something new to report. August 21, 2001 (Tuesday) Well, Sarah is still in the hospital. She hasn't had anymore fevers, but her first culture (the one positive for Gram negative rods) also was positive for an "anaerobic" (I can't spell it). They added a 3rd antibiotic. I still have no idea when she will be released. Her counts are still zero, but I'm thinking they will recover by this weekend. She's feeling great, eating, etc. I have to say "Congratulations" to my sister and her husband. They gave birth to a healthy baby boy today. He was 2 weeks early and arrived via C-section weighing 8lbs. 4 oz, 20 1/2 inches long. His name is Brendan Matthew. I can't wait to see him! August 20, 2001 (Monday) Sarah has had no more fevers, her cultures are still negative (other than the very first one) and she seems to be feeling fine. She still has no WBC or ANC but she is happy, eating, and playing. She's a little tired and is grumpy first thing in the morning, but I don't remember her ever feeling so good while being neutropenic. I still think we'll be here until next Monday, but I'm not sure. Maybe we'll get out of here a little earlier...I can only hope! August 19, 2001 Sarah is in the hospital again. Her temp got as high as 39.9 C (103.8 F) last night. Her blood culture came back positive for a gram negative rod. We'll probably be here at least a week. August 18, 2001 Sarah's temperature is trying to rise. It's already gone up to 99.7 this morning, so I figure we'll be admitted today. I'm going to keep an eye on her, but I really don't want to wait until 10pm to drive down to the hospital, so if her temp goes up again, I'll probably just drive down there. August 17, 2001 Sarah had labs again today. She's neutrapenic, so the countdown begins! She's on day 10 today...I figure we'll be lucky if she makes it through the weekend without getting a fever. She's seems to be feeling ok other than being a little tired and not really eating much. She weighs 32 lbs. now so she's looking pretty skinny again. The diarrhea is nonstop; I change her Pull-Up about 15 times a day. Anyways, I was very happy (and so was Sarah) to be home from labs by 2pm today. That was pretty early for us! We'll have to try to get her down to labs early on Monday because I think she'll need blood and/or platelets by then and I really don't want to be stuck down there all day. The traffic is soo awful on the way home. But, I'm happy to say that Sarah is still in good spirits, let's pray that it lasts. August 14, 2001 Sarah is home from the hospital now. She finished her 6th round of chemo (ICE) yesterday morning. She seems to be feeling fine and doing well. She hasn't been throwing up or anything yet. She is on 12 hours of TPN a night, she starts her GCSF injections tonight and she is taking Zofran and Benedryl for nausea. Her next scan (MRI of brain and spine) will be on August 29. If everything looks good there, she will prepare to undergo a stemcell transplant in Sept. We are trying to plan a family get-away to Phoenix at the end of the month if Sarah is feeling up to it and if the doctor says it's ok. My sister will be having her baby by next Tuesday and I would like to visit her plus we want to do some fun things with the kids before Sarah's transplant. August 14, 2001 Sarah is home from the hospital now. She finished her 6th round of chemo (ICE) yesterday morning. She seems to be feeling fine and doing well. She hasn't been throwing up or anything yet. She is on 12 hours of TPN a night, she starts her GCSF injections tonight and she is taking Zofran and Benedryl for nausea. Her next scan (MRI of brain and spine) will be on August 29. If everything looks good there, she will prepare to undergo a stemcell transplant in Sept. We are trying to plan a family get-away to Phoenix at the end of the month if Sarah is feeling up to it and if the doctor says it's ok. My sister will be having her baby by next Tuesday and I would like to visit her plus we want to do some fun things with the kids before Sarah's transplant. August 8, 2001 Sarah is supposed to be admitted today for Round 6 of chemo. Hopefully her last round before stem cell transplant. She will be getting the ICE treatment, which isn't usually too bad on her. We'll be driving her down this afternoon for labs and clinic and if everything checks out, then she'll go upstairs to be admitted. She'll be in for 5 days this time, which means she should be released Monday morning. Carl is going to stay with her for a few days (maybe 2) and then I will switch with him for the weekend. Sarah is eating better and feeling good still. She's actually excited to go to the hospital so that she can "go to the snack room, go to the playroom and feed the fish!!". August 5, 2001 (Sunday) Sarah is still feeling good. She throws up at least once a day and has terrible diarrhea, but this is no longer uncommon. Her spirits are good though and that is the most important thing to me. She no longer has any eyebrows or eyelashes, so she's looking awfully pale. I will be soo glad when she is done with her treatments! August 4, 2001 Sarah is doing really great now. She's eating, drinking, playing and laughing. She doesn't cry when she goes pee either. It's so wonderful to have her this way. At least her next round of chemo isn't usually too bad for her. She's also sleeping through most of the night, although she still has diarrhea (she has had this since the moment she was put on TPN) and so I have to change her Pull-Up at least 3 times a night. Sarah has a new favorite movie that she saw at the hospital. It's called, Why Charlie Brown, Why? It's about a little girl that gets leukemia. Sarah is so cute when she watches it. She says, "Ohhh no, she's not feeling so good mom. Her needs to go to the hop-i-tal and get chemo-tear-a-pee." My sister ordered the video tape for her, so now we'll have it at home too. August 2, 2001 Sarah was not admitted for chemo yesterday. Her Dr. wanted to give her a little longer to recuperate, so she will begin Round 6 next Wednesday, Aug. 8. She weighed 34 lbs. yesterday which is a little too slim for Sarah so her Dr. added lipids (fat) back to her TPN. She would like to see her gain a little weight before starting her next chemo. I'm kind of glad we get the week off (no labs either!!!) and we're going to try to do something on Monday and Tuesday (Carl has those days off). We're thinking of going to Disneyland on Monday and then Carl and I doing something on Tuesday. We'll see how it goes. Today we drove up to Big Bear and let the kids play in the park, have Burger King for lunch and then took them to a small zoo up there. They saw bald eagles, foxes, bobcats, mountain lions, black bears, grizzly bears, mule deers, snakes, wolves, racoons, and rabbits. That was pretty fun. I am including a picture of Sarah's new playhouse. It's not in our yard yet, but Alan (from Make A Wish) took a Poloroid and showed it to us. I think it's beautiful! The interior designer is re-doing the inside of it and a carpenter is re-enforcing it so that it will be moveable. It's definitely something for us to look forward to! Well, that's it for now... August 1, 2001 Sarah and I are heading down to the hospital this afternoon for clinic, labs and possible admission for chemo #6. Sarah is finally peeing again and, even though she scared, she says it doesn't hurt her. I'm so glad that problem got resolved! Yesterday we took her (and her brother and sister) up to the mountains. She got to feed her ducks, play in the park, eat McDonald's and have an ice cream. Then we drove to the other side of the mountain and she rode on a toboggin slide with her dad. She had been begging us to take her to the mountains and yesterday was the only day she actually felt well enough to go. It makes me sad that we had so little "good" time at home, this time. Make A Wish called and said that their target date to have Sarah's playhouse put in is August 25, give or take a few days. I'm so excited and so is Sarah! They're planning a big Rugrats party for Sarah, so she is looking forward to that. They told me that the man who donated the playhouse to Sarah would like to come to her party and of course, I said "yes". I am looking forward to meeting him and thanking him for being so generous. I'll try to update again later, to let you know if Sarah got admitted or not. (chances are, if I post at all, that she didn't). July 30, 2001 I thought for SURE that Sarah was going to be admitted to the hospital today. She had a temp of 100.8 this morning and was still complaining about pain in her "pee-pee". She refuses to go pee until she can't hold it any longer and this usually takes approx. 24 hours to occur! I can't believe how she can be on 12 hours of TPN (1200 mL) + 250 mL of saline solution + taking in fluids orally and still refuse to pee because she's worried that it might hurt her again. So, I took her in for labs, she needed platelets, didn't have a fever and was able to come home. I'm tired now, from a long day, so I'll update more tomorrow. July 29, 2001 Sarah has been having some problems urinating lately. One of the oncologists at the hospital thinks it may have something to do with Sarah receiving cyclophosfamide in her last round of chemo (also known as cytoxin). This drug is given with Mesna to help protect the bladder, but (according to the onc) about 20% of the time, the kids still develop a problem. Sarah started screaming when she peed on the toilet kind of like a bladder infection, except that she's been on antibiotics for 9 days straight, so it's unlikely that she has an infection. We have increased the fluids she receives at home, but she hasn't peed in 24 hours. She is having a lot of diarrhea so maybe she is losing a lot of fluid in that way, but I'm really hoping that she goes pee tonight so that I can see if it's still hurting her or getting worse, etc. I'm not sure if this will prevent Sarah from starting chemo on Wednesday or not. July 26, 2001 Hello, to all, sorry it's been so long since I updated. Today is Thursday, July 26. Last Wednesday (July 18) Sarah had to be admitted to the hospital. I no sooner got her home from labs (7pm) when she spiked a temp and I had to turn around and drive her back down. Thank God for my mother!!! She drove down with me and I was soo thankful for that! I was so tired, so NOT wanting to go back and my husband had to go back to work in the morning, so he couldn't go. Sarah got mouth sores, pretty bad this time. It hurt her so bad to swallow that she would just sit up and spit into a little bucket. Her temperature went up and down for about 5 or 6 days and she stopped eating and drinking completely. She started asking for "something in her line" pretty quickly, so I had them put her on a morphine pump. She was getting a continuous pump of the morphine, and then I could push the button for her and give her a little extra every 20 minutes. The nurse brought in a suction machine for Sarah to use to get the extra saliva out of her mouth, but it scared Sarah and she wouldn't do it. I finally convinced her to try it (i.e. forced her to....) and then I couldn't get it out of her mouth! She just sat there with her "sucking thing" stuck in her mouth for days. Sarah didn't feel like going to the playroom or feeding the fish. She would walk out to the snack room once a day and buy snacks to save for when her mouth felt better. Yesterday her counts finally started to come back (day 15) and were 300. They reduced her morphine (I was really hoping to get her out of there today) but she got sooo cranky that they decided that she needed another day to recover. Today her ANC is 600 so they're planning to wean her completely off the morphine tonight and send her home tomorrow. And then guess what?? Sarah is due to start her next round of chemo (5 day round) on Wednesday, Aug 1. It feels like we get NO time off sometimes! Ok, now for some REALLY good news. I don't know if I mentioned Sarah's Make-A-Wish before, but she originally wanted a "swing set with slide and grass". Her doctor didn't think a swing would be a great idea because of Sarah's back (her spine is comprimised), so she changed her wish to a playhouse. Our local newspaper ran an article about Make A Wish and Sarah about a week ago. A man that lives in our area called to donate a 2-story playhouse to Sarah that he built for his kids (now outgrown). Make A Wish says that the playhouse is beautiful and apparently several people have offered to buy it from the man over the years, but he hasn't wanted to sell it. Then he read the article about Sarah and said, "That's what I want to do with it!". Now Make A Wish says that they should be able to do the landscaping on the backyard since they don't have to buy or build the playhouse!! Sarah is soo excited. Oh, one small thing....The playhouse is too big for out gate, so they are getting a crane to lift it over the top of our house!!! I will definitely get pictures of that. I need to get some quick "thanks" in. Thank you again to my mother for watching my kids 24/7 for me. I don't know what we would do without her. I love you mom! Thank you to the man who donated Sarah's playhouse (I don't know his name yet, but I hope to soon)! Thank you to my Dad for the great flashlight he brought to the hospital and let me have...it is the most wonderful thing for getting a good look at mouth sores and everyone at the hospital loved it. Also thank you for visiting me and Sarah so often, it gets lonely down there at the hospital! Thank you to my cousin Nancy for visiting us and the BIGGEST thanks for helping us to get to this hospital in the first place. Thank you to all of our family and friend's who have been praying for Sarah. Thank you to my sister for calling me every day and helping keep me sane and entertained. Thank you to my WONDERFUL husband who cooks, cleans house, babysits, works and puts up with my crabbiness after being in the hospital for a week. I love you! July 18, 2001 Sarah had a long day at labs today. She's neutrapenic, needed platelets and needed whole blood. We left the house at 9am and arrived back at 7pm. She's been such a good girl! She took her Tylenol like a big girl at the hospital today. She's been throwing up today though (this is Day 8) and I suspect she'll be getting a fever soon. She's already got a slight temp (99.8 F). Hopefully she will make it a few more days at home, because I'm too tired to drive her back tonight!! July 16, 2001 So far, so good. Sarah has no fever, very little throwing up, and seems to be feeling ok. I think I am starting to see sores in her mouth already though. It doesn't seem to be bothering her yet, but it probably will be soon. I'm just hoping that she can make it to the end of the week before getting a fever; everytime she gets admitted with a fever, they want to keep her until her counts come back up so the sooner we go in, the more days we're stuck in there. This morning I gave Sarah some Colace to help prevent constipation (she isn't constipated yet, but her stools looked like they were getting hard), also some Zofran to help her nausea-she already threw up once this morning. She has labs today but I think everything should still be looking ok. She might be neutrapenic already, I'm not sure yet. July 15, 2001 Sarah is home and doing good so far. She's thrown up a couple of times, but nothing major. She's taking Zofran, Benedryl, Bactrim and Colace. She's still on TPN at night (10 hours a night). She's eating, playing and laughing still. She's not happy about all the medicine she has to take, but she is taking it. She put up a big fight this morning about the Bactrim...she told me that "THAT one tastes REALLY poopy!!!!" and then she threw her binky and hit me in the face with it. Sometimes it's a struggle to be patient with her. I just kept talking to her and then her Daddy came in and helped and we finally got her to take it. She threw up after the first tiny bit of Bactrim, so I know she was feeling nauseated and that was probably why she pitched such a fit about taking it in the first place. July 13, 2001 Sarah is in the hospital tonight with her dad. She is almost finished with her 5th round of chemo. Her doxorubicin will end at approx. 9am tomorrow (Saturday) morning. This stay has only lasted 3 days and wasn't too bad. She couldn't go out and visit the fish pond, but she dragged her dad and I to the playroom about a bazillion times. She played BINGO today and won a prize. She picked out a homemade wooden baby cradle with a (ugly) doll in it. We'll put a cute doll in it for her later. She hasn't thrown up once in the hospital...I'll be starting her on Zofran and Benedryl as soon as she gets home, but I'm almost positive that we'll be back at the hospital by next Friday. I'm sure she'll get a fever and those darn mouth sores again. This should be her last round of this particular chemo. Then she'll go to her "easy" round of chemo and then on to the BIG stuff (stem cell transplant =((() I'm not looking forward to the transplant but I am looking forward to her treatments being done. July 9, 2001 Sarah's hemoglobin was low today so she got a transfusion of whole blood and the Dr. decided to delay her chemo until Wednesday. So we are all home again tonight and I'm not complaining because Sarah is still feeling good. Sarah had an MRI and a CT scan done today. It appears that her tumor is gone. The Dr. said that there were a few "white streaks" in the area but that she couldn't say exactly what they were. She said that this MRI looked better than the last one, which looked WAY better than the one before that. She is anticipating 2 more rounds of chemo, more scans and then we'll probably start stem cell transplant. Carl and I are extremely happy and would like to thank everyone for their prayers and support and to ask that everyone keep praying for Sarah's full recovery. July 8, 2001 Our week off is coming to a close. Carl is working today, so I'll most likely be cleaning up from our party yesterday (which went really well), doing laundry, and preparing our suitcase for the hospital. Most of the time, by the time Sarah's next round of chemo comes up, I am feeling ready to go back in with her. Not this time. I'm just dreading the thought of it. We'll only be there for 3 days but just the thought of starting this process over again makes me tired. I'm a little anxious about her scans tomorrow, but optimistic. I think they'll turn out good. I hope that Sarah will be ok with her hospital stay this time. I can usually convince her that we'll have FUN while we're there. I know that this is her hard round of chemo though and she'll most likely get sick a week or so after treatment and we'll go back in for 5 days or whatever. When she finished her 3rd round of chemo (same protocol as this one, her 5th) I managed to keep her home and healthy until day 12. (She comes home from the hospital on day 4 of the cycle so she was able to stay home for 8 days). I probably shouldn't try so hard to anticipate what is going to happen, but I do like to be prepared. Sarah is still feeling good today...no fevers, etc. Her Dr. said she didn't have to take Bactrim this weekend, so that made both us happy. I'll let everyone know what happens with Sarah's scans tomorrow as soon as I get a chance. July 5, 2001 (Thursday) We had such a fun time on our trip!!! We drove down to San Diego yesterday morning and arrived in town about 1pm. The hotel we stayed at let us check in early and the first thing we did was throw on our swimsuits and head for the pool. Sarah can't get her Hickman (central line) wet so she sat on the stairs while Carl and I took turns playing with her and trying to swim with the baby and David. After we went swimming we went back upstairs, changed and went shopping. We took all 3 kids into FAO Shwartz and let them each pick a toy. They had fun in there. Then we picked up dinner and headed over to Coronado to find a place where we could watch fireworks. First we had to make a deteour since the baby had bit her binky in two and needed a new one. So, we finally found a grocery store, bought binkies and candy and drove over to Coronado. Amazingly we found a parking space near a small harbor and we let the kids play in the sand a water for a few minutes and then found ourselves a seat in the grass. They had such a blast just running around on the grass, eating candy, and waiting for it to get dark. When it was dark the fireworks started....unfortunately they weren't near US! We could see the fireworks on both sides of us and even behind us (behind the hotel we were in front of), but nothing in front of us. That was a bit of a disappointment, but we managed to see a few more as we packed up the van and headed back to the hotel. The kids were so exhausted they just collapsed in bed and slept all night long. We managed to sleep in until about 8 am and then we got up, had breakfast, packed and headed to LegoLand. It was sooo neat there! I will post some pictures as soon as I get them developed. Everything was so interesting to look at (everything is made out of Legos, very cool!) and they had rides that were good for Sarah and Laura and rides that were good for David. They had playrooms with Legos where the kids could just play Legos for as long as they wanted. We stayed for about 4 hours, walking, riding, eating, playing Legos, etc. Towards the end of our stay I took the kids into the gift shop for tshirts, a hat for Sarah, and one toy each. Then we packed up again and headed home. It was a fun, fun time and we all loved it! July 2, 2001 (Monday) Sarah is doing great today. Her counts are up and she feels good. She is still on Augmentin for her ear infection, but she IS taking the medicine. It's still a struggle, but she eventually gives in with a promise to let her play with "Sally" (the peeing doll) and she makes me "call" the Dr. and tell him that she took her medicine every single time! She had lab and clinic today. She had a transfusion of platelets, but that was all and the Dr. gave us the week off! Yay! We're free this week and Sarah's counts are up which means she's feeling good. We're planning a trip to Legoland on Thursday and an adoption party for David on Saturday (David is Sarah's older brother, he is Carl's stepson and is being adopted by Carl). We may take a drive up to the mountains tomorrow or do something else. We go back in on Monday (the 9th) for scans and chemo. I'll let you know what the MRI results are either Monday evening or Tuesday sometime. Pray that they're good! June 30, 2001 (Saturday) Sarah had a better day today. She is feeling good, looking good and happy. She is not thrilled about her medicine, but after some coaxing (and mild threats) she usually gives in and takes it. The only thing I hate is that the one antibiotic is given every 8 hours so one dose inevitably falls around 1 or 2am. She is very grouchy to have to be woken up that way. I think she should only have one shot left and one more day of Bactrim, so Monday should start to be easier. Then we have one whole week to enjoy her before she goes back in for her next round of chemo. Oh, I meant to mention this earlier...there is a sweet 7 year old boy that has been in the hospital since March who is not doing very well. His name is Anthony and the Dr.'s are only giving him about a month to live. We met his mom during our stays at the City of Hope and she is a very sweet woman. Please say a prayer for Anthony and his family during this difficult time for them. Today Carl and I drove down to the hospital so that he could donate platelets for Sarah but he was dehydrated and it wouldn't work. My mom stayed at home and watched the kids for me...I have to thank her for all of the hard work she has been doing. She has been babysitting, cleaning, and helping to run my house for months now, since Sarah was diagnosed. I don't know what I'd do without her. And since I didn't do it sooner, I want to thank my sister also, who came out from Arizona and lived with us for 6 weeks when Sarah started her chemotherapy. She is pregnant and had to be away from her husband during that time and it helped me more than I can say! Anyways, that's about all for now. June 29, 2001 It's been a few days since I've updated...after a long day of clinic on Wednesday we drove home. Later that night, Sarah's temperature started going up again, just like it had been for the past few nights. I called the doctor on-call and he said that if she reached 101 F then I would need to bring her in. So, sure enough, her temp hit 101F exactly. I loaded up, called my mom back over and drove back down to the hospital arriving there at 11pm. Sarah was admitted and the next morning they found the cause of the fever....an ear infection. She was put on antibiotics and and did fine. They didn't want to release us until her WBC was >500. That was a disappointment to me because I wanted to get out of there! The first morning we were there (after getting 4 hours of sleep...) we were awakened by the nurse with a syringe of Tylenol because Sarah needed a blood transfusion. What a way to wake up! Sarah screamed hysterically about the Tylenol. Kicking, scratching, spitting, etc. Very frustrating to me. I got some of it in her and then they did the blood. Later that afternoon her nurse wanted to check her blood levels and make sure they were ok and I was happily surprised to see that her WBC were at 300! I figured by the next morning they would be 500. Unfortunately, this morning they were only 400 and the Dr. doing rounds didn't want to let us go, but I finally persuaded him that Sarah WOULD take her meds at home and that her WBC would probably be 500 by this afternoon anyways, so he let us go. Sarah is giving me a horrible time about her medicine however. She has to take Bactrim on Fridays, Saturdays and Sundays (twice a day)...she hates Bactrim. NOW, she has to take Augmentin 3 times a day for the next 10 days. She hates that too. This weekend I get to figure out how to get "squirt" medicine into her, five times a day. I bought her a doll that drinks a bottle and wets it's diaper per her request (Betsy Wetsy). My deal is this. I set the timer for 30 minutes. As soon as she is done with her medicine, she gets to play with the doll until the timer runs out. If it takes her 1 minute to take it, then she gets her "Sally" for 29 minutes, if it takes her 25 minutes to take it then she only gets the doll for 5 minutes. She LOVES this doll! She cries, "I want my Sally! I like my dolly!". I hope my idea works, because I'm at my wits end on how to handle the medicine issue. I had made such good progress all to have it undone by ONE incident at the hospital. Anyways, Sarah feels good, looks good and is playful and somewhat energetic. This is the girl I love to see! June 28, 2001 Sarah's fever finally hit 101 F last night so I drove her down to the hospital. We had already had a long day at clinic so I was so tired driving her back down and she slept most of the way. When we got to the hospital her fever was down, but they admitted her anyways. Her WBC is still 200 and this morning they discovered an ear infection. So no wonder her temp has been trying to come up. They said that if her blood cultures remain negative for another type of infection and if her WBC comes up to greater than 500 we should be able to go home on I.V. antibiotics for her. She had to have blood this morning too because her HMG was only 6.4 (they normally transfuse at 7.5). Anyways, I have to go now, but I'll update more later. June 27, 2001 Sarah is still feeling very tired and nauseated. She is on day 15 of her cycle and her counts should be coming up, we'll find out today at lab and clinic. Her temperature keeps trying to go up also. She's been very antsy this morning, acting like she needs to throw up, but nothing happens. I gave her Benedryl (figuring it would either make her throw up or if she was able to keep it down, help with the nausea)....so far she's kept it down and she fell back asleep. I'll update more after clinic this afternoon. June 25, 2001 (Monday) Last night, Sarah's temperature was borderline. It kept creeeping up and then it would go back down again. I packed a suitcase for us and figured we'd be staying at the hospital. Carl called the Dr. and was told that as long as Sarah wasn't acting sick that we could stay at home since we had labs scheduled for this morning anyways. So we made it through the night and I got up early and took Sarah down to labs. I figured she was going to need blood because she looked really pale. We got down there, drew labs and sure enough she needed blood and her temp was still borderline. I had my suitcase in the car just waiting for them to tell us that she was being admitted. Towards the end of her blood infusion I made her take her hat off, hoping that it would help bring her temp down. When they took her temp again, it was lower and we were able to go home! Sarah was sooo happy to go home. She's been very tired, nauseated and has diarrhea again. She only weighs 33 lbs. now. I bought her some Pedialyte and Pedia-Sure to see if that would help her. We go back for labs on Wednesday. June 24, 2001 Sarah is still home! It's Sunday (almost one week past treatment) and she's had NO fevers yet. I'm so excited for her. She is feeling tired and nauseated, but at least here at home she can go and lay down when she feels that way and not be bothered like at the hospital. She's taking her medicines like a good girl and I'm very proud of her. She has 8 more Neupogin shots left for this cycle. (she's already had 6 shots). Hopefully we'll see her counts come up soon. She is looking a bit pale today so I'm thinking she may need blood tomorrow when we go for labs. June 23, 2001 (Saturday) Sarah has felt very nauseated today. She is out of Zofran so we are managing it with Benedryl. She hasn't run a fever yet, so we have been able to stay home. She's been sleeping a lot today, watching Rugrats videos, and thrown up a couple of times. Hopefully her counts will start coming back up around Monday or Wednesday and then she'll start feeling better. It's so fun when she's feeling good. After she takes her Benedryl she feels good for a little while, but then the nausea comes back. June 22, 2001 (Friday) Part II Sarah went to labs today and everything looked good, but her platelets were low, so she received a transfusion of those. Getting platelets is a rather quick thing to do so Carl and Sarah weren't there too much longer. It's 1pm and they are on their way home now. No fevers yet....We're keeping our fingers crossed!! June 22, 2001 (Friday) So far, so good. No fevers yet. And Sarah made it through the night without throwing up and without taking Zofran. I only have 3 Zofran pills left, so I have to try to make them last because the Dr. won't give her any more until her next round of chemo. An amazing thing happened yesterday. Sarah felt nauseated and she came up to me and said, "I need my 'squirt' medicine". (this is her Benedryl). So I gave her the medicine with no crying, screaming, etc. An hour later she was still feeling queasy and she asked me for more squirt medicine so I crushed a Zofran and put it in with a tiny bit of Benedryl and she took it wonderfully. She also told me yesterday, "Mom, I don't feel so good.". This is amazing for Sarah as she has always denied being in pain or feeling sick so that she could avoid taking the medicine's. I'm so happy that she is beginning to trust me and open up! Of course, this morning, she's in her room telling me, "No medicine!!!!" before I even have a chance to THINK about giving her any.... June 21, 2001 Sarah had clinic yesterday and all went well. Her counts are basically zero now so we have to be careful. It will probably take about a week for the counts to come back up. She has been a little nauseated, but I've been giving her Zofran and Benedryl (my two life savers!!!) and so the throwing up has been kept to a minimum. Last night, I read Tanner's journal and was so saddened by his passing away. I wanted to know about him though and I'm glad I read it. My family will be praying for Tanner's parents during this hard time. Hopefully I will have an uneventful week with Sarah and we'll be able to stay home until her next hospital stay on the 9th. June 18, 2001 (Monday) Whew! What a long day... Sarah finished up her 4th round of chemo very early this morning (around 3 am, I think?) so she was due to be released today. The first thing the nurse told us was that Sarah had to have her final dose of Mesna at 11am so we wouldn't be released until 11:30, then she came back and told us that she overheard the Dr. say that Sarah would need blood today so I knew that would mean we'd be there an extra 3 hours. They didn't even start the blood until 12 noon, so it didn't finish until 3pm. When they finally released her, we had to stop by the pharmacy and pick up her Zofran and Neupogin injections. We left the hospital at 4pm and hit massive traffic. We finally got home at 6:30pm. I still had to give Sarah her Zofran (which she threw a HUGE tantrum over), give her a bath, change her bandage (which she hates), give her Benedryl (she was actually good about this), and her neupogin injection. She is feeling good though, she's so glad to be home again. She is scheduled for her next round of chemo on July 9th and she's also supposed to have another MRI that same day. June 16, 2001 (Saturday) Sarah has now completed 3 days of chemo (Round 4) and has 2 more days to go. She's doing really great and has been eating like a little horse. She threw a HUGE temper tantrum yesterday when I told her that she had to take a bath. She knew that meant her "band-aid" was going to get wet and that we'd have to change it (the dressing on her Hickman). She kicked and screamed hysterically all the way to the tub. She screamed while I washed her and then back to the room. She screamed while I changed her band-aid. As soon as I was done she sat up and was totally calm. She has been playful with the Dr's and nurses this time too. She sticks her tongue out at them and says, "Ha, ha!" We should get to go home on Monday morning. Her Dr. is setting up the arrangements for her next scan (MRI). I'm thinking maybe 2 weeks from now. June 12, 2001 Today I took Sarah shopping with me, my mom and Laura to find a Father's Day present for Daddy. We had to go to a couple of places, but we finally found what we were looking for. Sarah's been pretty grumpy today. She seems to be feeling ok, but she's just been yelling and screaming at her brother and sister. Her doctor said that after Sarah's next MRI scan (if it's a good one, I assume) that she might let Sarah go off of the Decadron (that's the steroid that just makes her act crazy!). I sure do hope that she can come off of that stuff. When I was out shopping with her today we forgot to bring her hat. I thought that I'd just pick her up one in the sporting good store we stopped by but they wanted $27 for one hat!!! I went next door to Walmart and got her a $3 hat instead. Sarah didn't mind not wearing a hat, but it bothered me that people stared at we went by. I don't think Sarah noticed, but I did. I have to pack tonight for our 5-day hospital stay. I hope that it goes well. I need to round up visitors so that I'm not so bored. I have a feeling that I'll be spending the next 5 days sitting in the playroom watching Sarah play on the computer. Oh well, as long as she's happy. She cried today when I told her that we would have to stay at the hospital tomorrow. She just doesn't understand all of this. June 11, 2001 Sarah went with her Dad for labs today. We figured she'd be fine because her 4th round of chemo is set for Wednesday (2 days from now). So Carl let them draw blood, left his cell phone number and headed home. (this is our normal routine when her counts are up). Well, he got to about Rancho Cucamonga and they called him to say she needed to come back for a blood transfusion because her hemoglobin is low. They went back and prepared for the 3 hour transfusion. Sarah seems to be in a good mood though, so I think they are doing fine down there. We bought her a couple of computer games (educational) for the hospital to play with while she's there and a Blue's Clue alphabet game for her "GameGirl". I figured if she's going to in the hospital for days on end she might as well be learning something! Sunday June 10, 2001 Yesterday we drove down to San Diego and stayed in a hotel so that we could go to Sea World today. The hotel was nice and we took the kids down to the swimming pool. Sarah was content to sit on the edge with her feet dipped in while the rest of us got in the pool. One of us had to keep an eye on the baby though, so really only one of us plus David could swim at a time. Still, it was fun. I was really nervous about taking Sarah so far from home. I was really worried that she would get sick or I would forget her medicine or something. Luckily, it went smoothly. We got all 3 kids asleep by a decent hour and we watched a movie on the t.v. This morning we got to Sea World when it opened. We saw all the different animal habitats and let the kids play in Shamu's Happy Harbor. The weather was beautiful with a light, cool breeze and the kids all loved it. We only stayed until about 1pm (we had seen everything and we didn't want to overdo it). All 3 kids slept the entire way home, hurray!!! I'm going to try to sneak in a date with my husband tonight while my mom watches the kids. We go back to the hospital on Wednesday for Sarah's 4th round of chemo. It's a 5-day treatment and I'm not looking forward to it. I'm going to try to buy her some computer games to play while we're there...educational and fun hopefully. June 8, 2001 Sarah's charity golf tournament went well. I was amazed at the generosity of the people who attended. We're not sure how much money was raised yet, but it was wonderful to see so many people who cared about and were concerned with Sarah. There was a raffle at the tournament and several people who won good prizes, gave them back to be auctioned and the gifts sold for $50 and up. Sarah has been feeling really well today. I gave her a bath and changed her Hickman dressing (boy, did she NOT want a bath, but I swear it's probably been 2 weeks since she's had one!). So now she's smelling good, feeling good, etc. I didn't give her the TPN last night and wouldn't you know it? Her diarrhea stopped. I knew that stuff was causing diarrhea, but the Dr. says "no". I think we're going to stop the TPN except for when she's feeling bad and her counts are down. Our family is going to Sea World on Sunday. We decided that since Sarah is feeling good, we should go do something fun, so Saturday evening we're checking into a hotel in San Diego and then Sunday morning we'll head over to Sea World. I'm looking forward to it. June 6, 2001 Sarah is soo happy to be home. She's a little tired and still has some diarrhea and throwing up, but her spirits are up. She is insisting on wearing "big girl panties" now, just like she used to, but I have her wearing Pull-Ups because she's had trouble making it to the bathroom in time due to her illness and treatments. (When we first discovered the tumor on her back, it had begun to invade her spinal column and she was having trouble controlling her bladder, due to that. She seems to still be a bit weak in the bladder and with having the diarrhea, that just makes it twice as hard for her to get to the bathroom on time). We compromised for the ride down to clinic today and I let her wear big girl panties OVER her Pull-Up. That seemed to make her happy. She and her little sister Laura helped Daddy wash the van this morning. The girls had so much fun dipping their little rags into the soapy water and washing the van. Of course, they kept soaping the parts that Daddy had just rinsed. It was fun to watch them though. At clinic today I had Carl (who drove her down there) ask about her future treatments. She is supposed to receive 4 more rounds of chemo, (alternating between ICE and VADRIAC, I believe), then 2 stem cell transplants (assuming that the first one goes well, they would like to do a second), then one month of radiation. My new estimate of when she might be done with treatments is March 2002. That will make it just about one year since she was diagnosed and began treatment. Sarah's charity golf tournament is scheduled for this Friday and looks promising. Outback Steakhouse has been very generous and offered to serve everyone in the tournament a free lunch. It should be fun. June 4, 2001 We finished the stem cell harvest at 2pm and then returned to Sarah's room. She wanted to feed the fish, so we got ready to go down for that, but I wanted to speak to the Dr. on rounds first about being released. I was just SO ready to go home by this time. The Dr. came in and was listing reason after reason why we should stay and I basically debated her point by point on why we should be released. (I'm learning how to negotiate with these doctors). Anyways, we finally got the results of her stem cell harvest and we got enough in one day for two harvests. So, her line was pulled out of her leg by the "Trash Can Doctor". (Sarah nicknamed him that because he sat on a trash can for her one day). And....we got to go HOME!!! hurray!!! Next round of chemo is supposed to start on June 13. June 4th, 2001 It's about 4pm now and we're here at the hospital still. Sarah had her line put in...they put it in her groin, next to her leg. It looks just like the one in her chest except the tubing is thicker and shorter. She came through that fine, but was VERY nervous about anyone touching it. When we went to the donor center to start the harvesting (immediately after her surgery) she freaked out. You see, she knows this is where Daddy gets his "big pokes" and she was worried that they would do that to her. She screamed and screamed while everyone stared and the Dr. came and said that he would give her a "little Benedryl". I just laughed at him, because a "little" anything won't do any good with Sarah. Sure enough, she kept screaming, on and on. So they gave her a big, fat dose of Benedryl, plus Ativan to help her relax and sleep. But, the little angel (or should I say buffalo??) surprised them and kept screaming at the top of her lungs. She must've screamed for an hour straight. The Dr. just stood there in amazement that she wasn't sleeping. I tried to tell him, but....he wouldn't listen to me. They think that just giving her a normal dose of whatever will knock her out, but it won't. You need a buffalo shot for HER. She finally calmed down when Carl's sister showed up with a Mr. And Mrs. Potato Head. (I had asked her to pick on up for Sarah this morning). As soon as she saw Melanie and the Potato Heads, she stopped crying and started smiling and playing like a little sweetie. She never did go to sleep though. She was hooked to the machine for 4 hours while it took her stem cells and put her blood back into her. June 3, 2001 Sarah's counts are coming up good now. She is feeling well and playing. She even took a bite of bacon this morning. She's had some coughing since last night and threw up a couple of times, but it seems to be happening when she gets upset and scared, like when the nurses come in. She is going into surgery (minor procedure) tomorrow morning to have a catheter put into her groin to harvest stem cells. I hope it will go well and that they'll be able to get all they need by Tuesday. I'm ready (and Sarah is too!) to get out of here. Her NEW favorite thing is Mr. Potato Head. Funny, huh? I said a prayer with Sarah the other night when her legs and arms were hurting and then I told her, "There, Sarah. Now you'll feel all better. God will make you feel better." And she said, "Mom! God is NOT a doctor!!!". I was cracking up. June 1, 2001 Sarah has had a rough couple of days...Her legs and arms began to ache due to increased GCSF injections for her stem cell harvest so she was put on a morphine pump to help her manage the pain. She also had mouth and throat sores, but not too bad. Anyways, that all lasted for about 1 1/2 days and now her counts have begun to come up again. She is basically off of the morphine now. She's been rather grouchy and demanding, but I guess that's to be expected. Her daddy was able to come and stay with us today and keep us company. Sarah's current favorite things to do are: play Barbie dress-up on the computer, print out Rugrats pictures on the computer and watch Rugrats videos. She hasn't really eaten in a few days, but she is still getting her TPN so it is not affecting her weight. If anything, she's looking a bit chunky! gotta go! May 31, 2001 (Thursday) We're still at the hospital. They want to keep Sarah until her counts come back up and that will probably be Monday (June 4th) just in time for her stem cell harvest, so it will probably be around Wednesday before we get to go back home. Sarah has been put on a morphine pump due to pain. Her legs, arms and hands are hurting because of increased GCSF injections to prepare her for the stem cell harvest (it makes her bones hurt) and she also has mouth and throat sores. She has been a champ though and is doing good. I'll try to update more later. May 30, 2001 Well, Sarah crashed tonight, so off to the hospital we go...It's 11pm now and my mom should be here any minute and then Carl and I will head down the hill to take Sarah to the hospital. She threw up, had diarrhea, and got the chills. She is running a temp too. She was doing so well, but I had a feeling this was coming. I'll update you all more tomorrow. Gina May 26, 2001 Last night, Sarah was starting to feel nauseated. I've been giving her Zofran and Benedryl to try to stay ahead of the nausea, but she still threw up a couple of times, exactly at the time she was due for her next dose. I'm trying to give her the medicine about 20-30 minutes early so that doesn't happen. She's still eating and feeling alright though. Make-A-Wish Foundation sent out two volunteers this morning to talk to Sarah. Sarah told them that she wanted a "swing set, slide and grass". The volunteers brought her a Barbie tea set, Winnie the Pooh blocks for Laura and plastic dinosaurs for David. They said that when the wish is granted they will have a party for Sarah and the other kids with Sarah's favorite food and theme. Of course, everytime they asked her for a favorite movie, book or music her answer was always "Rugrats". She told them that her favorite food was pizza, chocolate chip cookies and cranberry juice. She's funny. The volunteers told us that it will probably be a couple of weeks before they can start the wish, so I'm hoping that by the summer it will be done (like late June or early July). May 25, 2001 Sarah's first day home has gone well. She is actually taking her medicine!!! For those of you who don't know Sarah, she HATES taking medicine. She used to not mind it (before she got sick), but then a nurse (not from our current hospital) forced her to take medicine by squeezing her mouth and forcing it down and ever since then, Sarah refuses to take anything. When I tried to give her some Benedryl yesterday (for nausea, I wanted to start it before she got sick) she fought it at first and then I told her that I would give her tiny squirts so that it wouldn't choke her if she would swallow like a good girl instead of spitting it out. She decided to try it and she actually took the medicine. I am still having good luck and am hoping to avoid some of the nausea and vomiting by giving her Zofran and Benedryl which she has always refused to take. I am soo proud of her! She is sitting on the couch watching Winne the Pooh and eating beans, cheese and tortilla chips for breakfast. I'm just glad that she has an appetite still! Her TPN (nutrition through her central line) has been cut down to 10 hours a day, so now I don't have to hook her up until 8-9pm and unhook her at 6-7am. That leaves the whole day for her to be "free". I need everyone to pray that she gets through this round with few problems and that her stem cell harvest goes well. Thanks everybody! May 24, 2001 Sarah was released from the hospital today. She is feeling great and looking chunky! We changed medical supply companies, (because our current one is run by idiots!!) so we got all new supplies today. I started to get that overwhelmed feeling because everything looks different and I'm not sure how to use it. A nurse is supposed to come out today and I guess I'll go over it all with her. If it's the nurse I normally have, I should be fine. Anyways, the Dr.'s gave us tomorrow off (meaning we don't have to go in for labs)...Hurray!! We do have to go in on Monday though. Dr. Miser (aka Dr. Donald Duck because he talks like Donald Duck to Sarah and she loves him!!!) said that Sarah will probably have a good weekend and then "crash". We're expecting that to happen around Monday. Maybe even as early as Sunday. Hopefully it won't be too bad.... we'll have to wait and see. Anyways, we're enjoying our happy, healthy (looking and acting) little girl. 05/23/01 This is our last full day in the hospital (for this round). Sarah has been wonderful. She played with a baby down the hall and even took a walk with a nurse and let me stay in the room! She has been happy and playful and it's wonderful to see her this way. I talked to Dr. Sweetman today about Sarah's stem cell harvest. She will end her 3rd round of chemo tomorrow morning and on approx. June 4th she will be coming in for a stem cell harvest in anticipation of receiving a transplant when her chemo is done (approx. 3 more rounds, then a high dose round, then the transplant). When she goes home tomorrow she will need 2 injections a day, TPN (nutrition through i.v.) at night, tylenol with codeine for pain (as needed), Zofran and Benedryl for nausea, Decadron (steroid), and Nystatin for her mouth. I hope she won't feel too sick this time. I'm praying that the mouth sores won't be bad. At least she's on nutrition now. Thank you so much to all of our family and friends who have signed Sarah's guestbook! I will be putting copies of everyone's messages to her in a scrapbook. 05/22/01 Sarah is in the hospital now completing her 3rd round of chemo. It consists of vincristine, doxorubicin, and cytoxin. She has been amazingly symptom free so far, and her grouchiness seems to come in spurts. She was so happy to get a new roommate last night (a baby boy) and then a little girl this afternoon. She has been playful and happy. I'll update more later. May 20, 2001 Today we drove up to Lake Arrowhead with the kids and my sister to "feed the ducks". This is Sarah's favorite thing to do! We had lunch, bought some duck food, played in the park, and did a little shopping. We wanted to get as much fun time in with Sarah before tomorrow when she starts her next round of chemo. She'll go into the hospital in the afternoon, so I think she'll be in there until Thurs evening or Fri morning. In any event, I most likely won't get much of a chance to update until we get out of the hospital...Sarah doesn't give me a chance to use the computer there at the hospital. We'll probably spend a lot of time down with the fish...(unless she's hooked up to chemo...then she'll be grouchy!!!). David seems to have a cold and Laura threw up in the van on the way down from the mountain, but it may have been motion sickness. I'll let you know more in a few days. May 19, 2001 Today two gentlemen who work out at Ft. Irwin (Carl's former place of employment) had a charity softball tournament for Sarah. I was able to drive out there with my mom, sister and all 3 kids. Sarah was really shy and embarrassed because everyone wanted to see her and talk with her. She did good though. She's been feeling really good lately, with her counts being up. We go back to the hospital on Monday for round 3 of chemo. I'm a little nervous about going back in with her. She is going to be mad when she realizes that she can't go down and see the fish while she's hooked up to the chemo drugs and then afterwards (probably a few days after we get home) she's not going to be feeling well again. PLUS, it seems like David might be coming down with something. It could be allergies, I just don't know. He's not running a temp or anything. I panicked when I realized that he might be sick and immediately thought of sending him to my mom's house but then I felt bad because he wants his mom to take care of him when he's sick too! I guess I'll just try to make sure that they don't get too close to each other. I kind of figure that the kids expose their germs to each other long before the symptoms show anyways, so it's probably pretty hard to keep them from catching things from one another. Anyways, keep praying for Sarah that she'll get through this chemo round without too many problems and that she'll beat this disease! I'll try to update everyone from the hospital too. 05/16/01 My husband and I took her in today for an MRI. They scanned her and then we met with the Dr. a couple of hours later. The Dr. told us that the news was very, very good and that almost every bit of the tumor was gone. There is just a piece about the width of a piece of paper in her spinal column, but the rest of the mass isn't appearing any more. (The mass was approx. 3-4cm by 10cm and that was AFTER her initial surgery to remove a large chunk of tumor). Her left kidney which had appeared flat on one side due to pressure from the tumor is nice and round again too. This is after 2 rounds of chemotherapy. She is starting her 3rd round on Monday and they will be harvesting stem cells from her after this round. She will eventually get a stem cell transplant and radiation therapy, but I'm optimistic about today's results, even though I know we still have a long road ahead of us. Anyways, just thought I'd let you know. Sincerely, Gina Colby 05/04/01 Hi, I'm Sarah (Colby)'s mom. Sarah has just finished her 2nd round of chemo on Monday. It was a 5 day treatment. ICE was the protocol. I have the names written down...one was carboplatin (sp?), one was VP-16, and I can't remember the third...it's in my notebook. (Sarah's first round of chemo consisted of doxorubicin, cytoxin and vincristine and lasted for 3 days). Sarah will be scanned again on May 16th. Her Dr. is optimistic. She told us that the tumor felt like it has gotten smaller since she used to be able to feel it while pressing on Sarah's abdomen and back, but now she can't feel it that way at all. I don't want to get my hopes up, but my husband and I are praying for the best. Good luck to all the other children, we'll be praying for you! Love Gina Colby